The effects of early social-emotional and relationship experience on the development of young orphanage children. (2008). Monographs of the Society for Research in Child Development, 73(3), 1-262.
This study represents a quasi-experimental test of the role of early social-emotional experience and adult-child relationships in the development of typically developing children and those with disabilities birth to 4 years of age living in orphanages in St. Petersburg, Russian Federation. The three orphanages in the current study were selected because they were among the best in St. Petersburg and their directors were willing to cooperate with the project. They met reasonable institutional standards for medical care, nutrition, physical environment, sanitation, toys and equipment, specialized professional services, and the lack of abuse, but similar to many other orphanages in the literature they were deficient in the social-emotional caregiver-child interactions and lack of relationship experiences provided to children. Caregivers performed routine duties in a perfunctory, business-like manner with minimum interaction with children. In addition, children had 9-12 caregivers per week, as many as 60-100 different caregivers over the first 2 years of life, and no caregiver today as yesterday or tomorrow. Two interventions designed to improve the social-emotional-relationship experience of children were implemented. Training used a train-the-trainer approach to educate staff on all aspects of early childhood development and mental health, emphasizing warm, caring, sensitive, responsive, and developmentally appropriate interactions especially during routine caregiving duties. Structural changes consisted mainly of reducing group size from approximately 12 to 6, assigning two primary caregivers to each subgroup so that a primary caregiver was available every day, terminating periodic transitions of children to new wards and caregivers, integrating groups by age and disability status, and establishing Family Hour for 1 hr in the morning and afternoon in which caregivers were instructed to be with their children. Thus, the interventions promoted a social-emotional behavioral style of interaction with children (e.g., responsiveness, talking, playing, shared emotions), not specific actions or programs of activities, plus an employment and organizational structure that provided more consistent contact with fewer caregivers and smaller age- and disability-integrated groups to facilitate caregiver-child relationships. The Baby Homes were nonrandomly assigned to one of three conditions: both training and structural changes (T1SC) were implemented in one orphanage, training only (TO) in a second, and no intervention (NoI) in a third. Results showed that the interventions were successfully implemented, and caregivers improved their ward behavior (HOME Inventory) over the course of the study, more in T1SC than TO. The interventions produced substantial improvements in the development of children, both typically developing and those with disabilities, greater for children in T1SC than TO than NoI, and greater after 9+ than 4-9 months of exposure to the intervention (i.e., dose-response and/or age effect). Developmental improvements occurred for physical growth (e.g., height, weight, chest circumference), all aspects of general behavioral development (Battelle Developmental Inventory), a variety of social-emotional-relationship behaviors (Parent-Child Early Relationship Assessment, Infant Affect Manual), and attachment categories, behavior ratings, and dimensions. Scientifically, these results are consistent with the frequently voiced hypothesis that the major corrosive element of early institutional experience is the relative lack of social-emotional experience and warm, caring, sensitive, responsive caregiver-child interactions and relationships, and they suggest the potential role such early experience plays in many aspects of development. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Adamson, A., O'Hare, A., & Graham, C. (2006). Impairments in Sensory Modulation in Children with Autistic Spectrum Disorder. British Journal of Occupational Therapy, 69(8), 357-364.
The Short Sensory Profile was used to measure a caregiver report of sensory reactivity in a group of children with an autistic spectrum disorder (ASD). Fifty-six of 78 (72%) families invited to participate returned the questionnaires and the data were complete for 44 children. These 44 children represented a stratified sample out of a total of 443 children, identified through nine different data sets maintained for children affected by ASD from a total geographical region in South East Scotland. Clinical information was collected retrospectively from contemporaneous paediatric community child health medical notes and also cross-sectionally from caregivers. Sensory reactivity was outside normal limits in over 70% of the children, with the highest percentage of sensitivities occurring in the auditory filtering and the under responsiveness and seeking sensation domains. Logistic regression analysis showed no significant relationship between sensory reactivity and the child's age at presentation with autism or parental report of regression. The severity of autism was measured by the Gilliam Autism Rating Scale and related to the Short Sensory Profile (r = 0.39, p = 0.001). These findings suggest that all children affected by ASD, regardless of clinical features or age, may potentially be affected by sensory reactivities and may benefit from appropriate occupational therapy assessment and management. ASDs are relatively common among neurodevelopmental conditions and confer lifelong disabilities. As the majority of affected children will have sensory modulation difficulties, this has significant implications for paediatric occupational therapy services. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Agree, E. M., Freedman, V. A., Cornman, J. C., Wolf, D. A., & Marcotte, J. E. (2005). Reconsidering Substitution in Long-Term Care: When Does Assistive Technology Take the Place of Personal Care? The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 5(5), S272-S280.
Objectives: Assistive technology (AT) may improve quality of life and reduce dependence for older persons with disabilities. In this article, we examine tradeoffs between the use of AT and reliance on personal care, with attention to factors that may influence those relationships. Methods: We jointly modeled hours of formal and informal care with use of AT in order to address the interdependence of these outcomes in ways not taken into account in previous studies. We analyzed a national sample of older persons with difficulty in activities of daily living drawn from Phase 2 of the 1994-1995 National Health Interview Survey (NHIS) Disability Supplement. Results: Our findings show that the use of AT was associated with reductions in informal care hours, especially for those who were unmarried, better educated, or had better cognitive abilities, but appeared to supplement formal care services for these groups. Individuals with cognitive impairment were less likely than others to substitute AT with either type of personal care. Discussion: These models raise the possibility that reductions of informal care hours may be accomplished with a combination of formal care and assistive devices, rather than from either alternative alone. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Albano, F., Giacomet, V., de Marco, G., Bruzzese, E., Starace, F., & Guarino, A. (2007). Adherence to antiretroviral therapy in children: A comparative evaluation of caregiver reports and physician judgment. AIDS Care, 19(6), 764-766.
Adherence to antiretroviral (ART) therapy, as reported by children caregivers, was investigated and compared with physicians' estimates of adherence. Two parallel structured questionnaires were administered to caregivers of 129 HIV-infected children and to their physicians in seven different Italian reference centers. Doses omitted in the last four days were recorded. Perfect adherence (>95% of prescribed doses taken in the last four days before interview) was reported by caregivers of 103 (79%) children. Five children (5%) omitted one dose of any ART drug in four days and were considered adherent. Low (<95 but >80% of doses) and poor (<80% of doses) adherence were reported by 15 (12%) and six (5%) caregivers, respectively. Forty-eight children (37%) were judged to be non-adherent by their physicians, including 35 children who were receiving all the prescribed doses according to caregivers. The physicians identified eight out of the 21 non-adherent children as adherent. Non-adherence estimates by physicians closely correlated with poor clinical conditions. These data indicate that adherence is a major problem but there is a clear discrepancy between caregiver reports and physician judgement. The results underline the need of close surveillance of adherence in HIV-positive children in order to evaluate the effectiveness of ART therapy. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Amirkhanyan, A. A., & Wolf, D. A. (2006). Parent Care and the Stress Process: Findings From Panel Data. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 5(5), S248-S255.
Objectives: The purpose of this study was to test with panel data an extended model of the stress process recognizing the separate effects of a parent's need for care and an adult child's caring activities. Methods: Using data from the 1996, 1998, and 2000 waves of the Health and Retirement Study, we estimated nonlinear mixed models of mental health outcomes. We assessed mental health for separate samples of 3,350 men and 3,659 women by using an 8-item scale of depressive symptoms. We also explored the sensitivity of results to alternative measures and model specifications. Results: We found that female, but not male, caregivers whose parents needed care exhibited adverse mental health consequences. However, we found that, generally, both male and female noncaregivers whose parents needed care were more likely to report symptoms of depression than were noncaregivers without disabled parents. Additional findings suggest that the stress process is still more complex among married couples. Discussion: This study distinguishes the outcomes of parental care needs from those attributable to caregiving activities. Adverse psychological outcomes appear to be dispersed throughout the family. To focus narrowly on active caregivers is to underestimate the social burdens of disability at older ages. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Andrieu, S., Rive, B., Guilhaume, C., Kurz, X., Scuvee-Moreau, J., Grand, A., et al. (2007). New assessment of dependency in demented patients: Impact on the quality of life in informal caregivers. Psychiatry and Clinical Neurosciences, 61(3), 234-242.
A qualitative tool was recently developed for evaluation of dependency in a demented population. This tool assesses the impact of cognitive impairment on functional status, taking into account disability in both the basic and the instrumental activities of daily living. The purpose of the present paper was to study the impact of dependency on informal caregivers who assist demented patients at home, with this new useful tool. Methods: A cross-sectional analysis was undertaken of the subgroup of 145 demented patients of the National Dementia Economic Study, aged >=65 years, living in the community, with an available caregiver. A neuropsychological assessment of patients (Mini-Mental State Examination) and a comprehensive evaluation of caregivers (quality of life, Short Form Health Survey-36, depression, Sense of Competence) were recorded. A total of 32.4% were dependent, disabled in both basic and instrumental functions, 42.1% were non-dependent but with instrumental functional disabilities and 25.5% were non-dependent. Impact of dependency on the caregiver's experience was significant for different aspects (satisfaction with caregiving, subjective burden, quality of life, depression). Medical and non-medical costs increased with the severity of functional disability. Findings indicate that this tool is also useful to assess the impact of progression of functional disability in patients with dementia, on the caregiver issues. The consequences appeared both on personal feelings and on quality of life and financial involvement in management of the patient. Cognitive impairment appears to have more moderate repercussions in these areas. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Antonsson, H., Graneheim, U., Lundstrom, M., & Astrom, S. (2008). Caregivers' reflections on their interactions with adult people with learning disabilities. Journal of Psychiatric and Mental Health Nursing, 15(6), 484-491.
People with learning disabilities and their professional carers often have difficulty interacting. The aim of this study was to illuminate carers' reflections on their interactions with adult people with learning disabilities. In a previous study, interactions between 16 carers and 11 residents with learning disabilities were recorded on video. In this study, stimulated recall interviews about the interactions were carried out with all the carers. The text was analysed using qualitative content analysis. The findings indicate that the carers reflected on both successful and unsuccessful interaction. Examples of successful interaction included understanding cues, satisfying needs, and managing challenging behaviours, and the carers reflected on the influences that successful interaction had on security, confidence, and satisfaction among the residents. Examples of unsuccessful interaction included failing to understand cues, failing to satisfy needs and failing to manage challenging behaviours, and the carers reflected on the consequences of such interaction, which included irritation, aggression and violence among the residents. Our findings have implications for interventions aimed at strengthening the competence of carers and developing strategies for managing challenging behaviour, in order to ensure high-quality care and a good working climate. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Arai, H., Nagatsuka, M., & Hirai, K. (2008). The relationship between health-related quality of life and social networks among Japanese family caregivers for people with disabilities. BioPsychoSocial Medicine, 2, 17.
Aims: The purpose of this study was to examine HRQOL depending on whether the participants have family members with disabilities or not. In addition, we examined the relationship between HRQOL and social networks among family caregivers in Japan. Methods: The study has a cross-sectional design. Survey forms were distributed to 9205 people aged 30 and older who visited a dispensing pharmacy within fifteen areas of Japan. We collected data on gender, age, job status, and care giving status for persons with disabilities. Moreover, we assessed support size, social support, and HRQOL. Out of the 2029 questionnaires returned, 1763 (male: 663, female: 1100, mean age = 63.06 +or- 13.34) were valid for statistical analyses (the available response rate was 19.15%). Results: A significant difference in HRQOL was identified between family caregivers and non family caregivers. Further, in males (N = 101), the results confirmed that only social support predicted the PCS and MCS scores, while other variables did not predict either score. On the other hand, in females (N = 144), it was found from the second step of hierarchical multiple regression analysis that only age explained the PCS score, while job status and support size explained the MCS score. Conclusion: It is reasonable to conclude that the HRQOL of family caregivers was lower than that of non-family caregivers, and that the HRQOL of family caregivers was estimated by their social networks. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Backhaus, C., Friesdorf, W., Wears, R. L., Perry, S. J., Scanlon, M., Zayas-Caban, T., et al. (2007). IX: Specific Applications. Carayon, Pascale, 835-935.
(from the book) "Human Factors and Ergonomics in Intensive Care -- A Process-Oriented-Approach" / Claus Backhaus and Wolfgang Friesdorf "Human Factors and Ergonomics in the Emergency Department" / Robert L. Wears and Shawna J. Perry "Human Factors and Ergonomics in Pediatrics" / Matthew Scanlon "Human Factors in Home Care" / Teresa Zayas-Caban and Patricia Flatley Brennan "Human Factors And Ergonomics in Nursing Home Care" / David R. Zimmerman and Evgeniya (Jenya) Antonova "Human Factors And Ergonomics in in Primary Care" / John W. Beasley, Kamisha Hamilton Escoto, and Ben-Tzion Karsh. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Bainbridge, H. T., Cregan, C., & Kulik, C. T. (2006). The effect of multiple roles on caregiver stress outcomes. Journal of Applied Psychology, 91(2), 490-497.
Some caregivers focus exclusively on the caregiving role; others try to balance caregiving responsibilities with a simultaneous work role outside the home. This study examined competing hypotheses about the impact that greater immersion in a work role would have on the stress outcomes of individuals who provide care for a person with a disability. The authors used national survey data to examine whether hours of work were associated with caregiver stress outcomes. The authors also investigated whether type of disability moderated the relationship between hours worked and stress outcomes. Results suggest that spending more time in a work role generally has no effect on caregiver stress outcomes. However, caregivers who were caring for a person with a mental disability experienced significantly fewer stress outcomes as they spent more hours engaged in outside work. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bair-Merritt, M. H., Jennings, J. M., Eaker, K., Tuman, J. L., Park, S. M., & Cheng, T. L. (2008). Screening for domestic violence and childhood exposure in families seeking care at an urban pediatric clinic. The Journal of Pediatrics, 152(5), 734-736.
In a survey of 133 caregivers in a pediatric clinic, 30 women (23%) disclosed domestic violence, with 2 reporting coercive control but not physical violence. Seventeen women stated that a child had been exposed as well. Domestic violence is not a "private" adult problem; further study of an appropriate pediatric-based screener is needed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Baker, L. A., Raine, A., Liu, J., & Jacobson, K. C. (2008). Differential genetic and environmental influences on reactive and proactive aggression in children. Journal of Abnormal Child Psychology: An official publication of the International Society for Research in Child and Adolescent Psychopathology, 36(8), 1265-1278.
While significant heritability for childhood aggression has been claimed, it is not known whether there are differential genetic and environmental contributions to proactive and reactive forms of aggression in children. This study quantifies genetic and environmental contributions to these two forms of aggression in an ethnically diverse urban sample of 9-10 year old twins (N = 1219), and compares results across different informants (child self-report, mother, and teacher ratings) using the Reactive-Proactive Aggression Questionnaire (RPQ). Confirmatory factor analysis of RPQ items indicated a significant and strong fit for a two-factor proactive-reactive model which was significantly superior to a one-factor model and which replicated across gender as well as the three informant sources. Males scored significantly higher than females on both self-report reactive and proactive aggression, findings that replicated on mother and teacher versions of the RPQ. Asian-Americans scored lower than most ethnic groups on reactive aggression yet were equivalent to Caucasians on proactive aggression. African-Americans scored higher than other ethnic groups on all measures of aggression except caregiver reports. Heritable influences were found for both forms of aggression across informants, but while boys' self-reports revealed genetic influences on proactive (50%) and reactive (38%) aggression, shared and non-shared environmental influences almost entirely accounted for girls' self-report reactive and proactive aggression. Although genetic correlations between reactive and proactive aggression were significant across informants, there was evidence that the genetic correlation was less than unity in boys self reported aggression, indicating that genetic factors differ for proactive and reactive aggression. These findings provide the first evidence for varying genetic and environmental etiologies for reactive and proactive aggression across gender, and provide additional support for distinction between these two forms of aggression. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bakermans-Kranenburg, M. J., van Ijzendoorn, M. H., & Juffer, F. (2008). Earlier is better: A meta-analysis of 70 years of intervention improving cognitive development in institutionalized children. Monographs of the Society for Research in Child Development, 73(3), 279-293.
Orphaned or abandoned children meet with divergent fates. Some are cared for by their extended kin, others find adoptive or foster homes providing them with a family life, yet others spend their days in orphanages or children's homes. The latter group may be worst off: Orphanages usually do not meet the conditions of the average expectable environment, a prerequisite for children's normal development, encompassing protective, stable caregiving and open opportunities for exploration and mastery of the world (Bowlby, 1998; Cicchetti & Valentino, 2006; Hartmann, 1958). Institutional rearing, because of its regimented nature, high child-to-caregiver ratio, multiple shifts and frequent change of caregivers, almost inevitably deprive children of reciprocal interactions with stable caregivers. In this respect, institutional care implies structural neglect. Numerous studies have shown that children growing up in orphanages are at risk in various domains of functioning, including their physical, socio-emotional and cognitive development (see record 2008-17342-001). In this review, the studies have been ordered according to their design. First we describe randomized control trials (five studies), after that studies using matched intervention and control groups (three studies), then studies with a nonmatched control group (four studies), and lastly pretest- posttest studies that did not include a control group of children who did not participate in the intervention (two studies). (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Barakat, L. P., Lutz, M. J., Nicolaou, D., & Lash, L. A. (2005). Parental locus of control and family functioning in the quality of life of children with sickle cell disease. Journal of Clinical Psychology in Medical Settings, 12(4), 323-331.
The objective was to examine the association of parental locus of control (PLOC) with pediatric quality of life (QOL) for children with sickle cell disease (SCD), specifically addressing the potential mediating role of family functioning. Associations with disease severity were also investigated. Thirty-one primary caregivers completed standard measures of parental locus of control, family functioning, and quality of life during their child's inpatient admission for pain or fever. Results indicated that the PLOC total score was significantly associated with QOL in terms of self-competence and showed marginal significance with QOL social competence; it was significantly negatively correlated with family functioning. The association of the PLOC with QOL subscales was maintained when controlling for family functioning. Disease severity was not associated with PLOC scores. Primary caregivers endorsed more external parental locus of control beliefs. Further investigation of the association of caregiver appraisals and family functioning is warranted with the goal of addressing the stress that disease management with sickle cell may add to parent-child relationships. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Barnard-Brak, L., & Thomson, D. (2009). How is taking care of caregivers of children with disabilities related to academic achievement? Child & Youth Care Forum, 38(2), 91-102.
Respite care services have been linked to variety of positive outcomes for caregivers and families alike. The purpose of the current study was to examine the association of receiving respite care with academic achievement for children with disabilities across time. The study employed a nationally representative sample of children to examine this relationship using structural models. Results indicate a positive association between receiving respite care services and academic achievement across time for children with disabilities. In an era of high-stakes achievement testing, these results link respite care services to those academic achievement outcomes while complementing previous research. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bartell, A. S., & Kissane, D. W. (2005). Issues in Pediatric Palliative Care: Understanding Families. Journal of Palliative Care, 21(3), 165-172.
While family-centred care has always been part of the rhetoric of hospice and palliative care, few models have been developed that successfully integrate care of the caregivers into the overall schema. Systematic analyses of interventions have failed to produce any demonstrable benefit to families arising from the modern practice of palliative care. This alarming finding constitutes the greatest challenge for the 21st century. Pediatric palliative care may have much to teach in its approach to family care. Family-focused grief therapy is one model, used with both adolescent and adult families, that has promise for the field. The time has surely arrived for palliative medicine to focus on family-based research. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Barton, C., Sulaiman, N., Clarke, D., & Abramson, M. (2005). Experiences of Australian parents caring for children with asthma: It gets easier. Chronic Illness, 1(4), 303-314.
Objective: To describe the experiences of Australian parents caring for children with asthma. Methods: A combination of random sampling, purposeful sampling and quota sampling was used to select care-givers from general practices in Melbourne's north and north-western suburbs. Data collection involved a single semi-structured in-depth interview with 21 parents caring for a child with asthma. Thematic analysis was aided by QSRNVivo. Results: Children experienced predominantly mild-to-moderate, episodic asthma. Six themes emerged from the interviews: emotions and behaviours, coping strategies, disruption to activities, health and treatment beliefs, problems with asthma management, and relationships with doctors. Parents' experiences and health beliefs impacted on their management of asthma. These may act as barriers to optimal asthma care in some families. The overriding theme to emerge was 'it gets easier'. It got easier with time because the children could communicate more effectively, and were better able to take care of themselves, and their asthma became less severe or less of a problem. Discussion: This research has highlighted the need for health professionals to emphasize the chronic nature of asthma, but negotiate strategies with care-givers to optimize the use of asthma medications, with consideration being given to care-givers' fears, frustrations and health beliefs. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bauman, L. J., Foster, G., Silver, E. J., Berman, R., Gamble, I., & Muchaneta, L. (2006). Children caring for their ill parents with HIV/AIDS. Vulnerable Children and Youth Studies, 1(1), 56-70.
Children orphaned by HIV/AIDS experience not only the trauma of a parent's death, but the stress of living with and often caring for an ill and dying parent. We interviewed 50 mothers ill from HIV/AIDS in both Mutare, Zimbabwe and New York, USA, and one child of each aged 8-16 about personal assistive care the child provided; other household responsibilities; hours/day children spent on chores; and parental/child mental health. Children provided substantial amounts of personal care; took responsibility for cooking, cleaning, shopping and other household tasks; and some were their parents' confidants. The amount of care provided was related to maternal disability, not child age, gender, or presence of other adults/siblings. Children reported performing more tasks than their mothers reported. Almost half of New York and 80% of Mutare children said they had too much responsibility, and most reported reduced after-school and peer activities. Both children and parents felt children were more capable because of their responsibilities. Depression rates in New York and Mutare children were high but Mutare children were extremely vulnerable; two-thirds had depression scores in the clinically significant range. However, child caregiving was unrelated to depression. Research to better understand the role of child caregivers is still needed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bauman, L. J., Silver, E. J., Berman, R., & Gamble, I. (2009). Children as caregivers to their ill parents with AIDS. Shifren, Kim, 37-63.
(from the chapter) The purpose of this chapter is to report data from a study on children (aged 8-16 yrs) of mothers with and without HIV/AIDS in New York City. Our study examined how much responsibility the children assumed for caregiving and household chores when their mothers had HIV/AIDS. We also looked at whether certain children, such as older children or daughters, were more likely to take on these responsibilities and what effects (both negative and positive) this had on the children. Caregiving is a frequent responsibility of school-aged children; they are called on to perform a variety of caregiving tasks from extra chores to toileting; and some spend many hours a week in the caregiving role, especially when the parent is ill. Although parents and children sometimes disagree about the extent of the child's responsibilities and chores, there is little question that parents rely on their children for help and that children provide that help. Few children perceived serious consequences from their work, and there was little evidence of serious mental health correlates. No consistent evidence demonstrated that older children or girls were more likely to take on personal care, household maintenance, or sibling caregiving responsibilities, although mothers did report that older children did a greater number of tasks both usually and when they were sick. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Beach, S. R., Schulz, R., Williamson, G. M., Miller, L., Weiner, M. F., & Lance, C. E. (2005). Risk Factors for Potentially Harmful Informal Caregiver Behavior. Journal of the American Geriatrics Society, 53(2), 255-261.
Objectives: Caring for a sick or disabled relative has been linked to compromised caregiver health, and risk factors for negative caregiver outcomes have been studied extensively, but little attention has been given to care recipient and caregiver health as risk factors for potentially harmful behavior by informal caregivers. This article explores such risk factors. Design: Structured interviews from baseline assessment of the Family Relationships in Late Life Study. Setting: Three U.S. communities. Participants: Referred, volunteer sample of 265 caregiver/care recipient dyads. Caregivers were primarily responsible for care of an impaired, community-residing family member aged 60 and older and providing help with at least one activity of daily living (ADL) or two instrumental activities of daily living (IADLs). Measurements: Self-reported care recipient demographics, cognitive status, need for care, and self-rated health; self-reported caregiver demographics, cognitive status, amount of care provided, self-rated health, physical symptoms, and depression. Care recipient reports of potentially harmful caregiver behavior, including screaming and yelling, insulting or swearing, threatening to send to a nursing home, and withholding food, were the main outcome variable. Results: The following were significant risk factors for potentially harmful caregiver behavior: greater care recipient ADL/IADL needs (odds ratio (OR)=1.12, 95% confidence interval (CI)=1.03-1.22), spouse caregivers (vs others; OR=8.00, 95% CI=1.71-37.47), greater caregiver cognitive impairment (OR=1.20, 95% CI=1.04-1.38), more caregiver physical symptoms (OR=1.07, 95% CI=1.01-1.13), and caregivers at risk for clinical depression (OR=3.47, 95% CI=1.58-7.62). Conclusion: Potentially harmful caregiver behavior is more likely in spouse caregiving situations and when care recipients have greater needs for care and caregivers are more cognitively impaired, have more physical symptoms, and are at risk for clinical depression. This risk profile is similar to that for negative caregiver outcomes. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Beals, K., Wight, R., Aneshensel, C., Murphy, D., & Miller-Martinez, D. (2006). The role of family caregivers in HIV medication adherence. AIDS Care, 18(6), 589-596.
This study examines the role that mid-life and older wives and mothers play in promoting medication adherence among their HIV-infected husbands or adult sons who require daily living assistance. Interviews were conducted with 112 caregiving dyads, with caregivers reporting on their own behaviours and attitudes towards medications, and care-recipients (persons living with HIV [PLH]) providing information about their own adherence practices. By examining how caregiver characteristics, behaviours, and attitudes may influence PLH adherence it is explicitly recognized that caregivers and PLH are linked within a caregiving dyad. Findings indicate that caregivers often remind PLH to take medications, but these reminders are not significantly associated with adherence. Caregivers also report strong attitudes about medication hassles, concerns over treatment failure and general concerns about adherence. Controlling for background characteristics, high perceived adherence hassles on the part of the caregiver were associated with low PLH adherence, providing evidence of shared influence within the caregiving dyad. Adherence interventions may maximize their effectiveness if they consider the role of the family caregiver because these data suggest that caregiver attitudes are linked with PLH adherence behaviours. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Beaulieu, R., & Humphreys, J. (2008). Evaluation of a telephone advice nurse in a nursing faculty managed pediatric community clinic. Journal of Pediatric Health Care, 22(3), 175-181.
Introduction: Nurse-managed health centers face increasing obstacles to financial viability. Efficient use of clinic resources and timely and appropriate patient care are necessary for sustainability. A registered nurse with adequate education and support can provide high-quality triage and advice in community-based practice sites. The purpose of this program evaluation was to examine the effect of a telephone advice nurse service on parent/caregiver satisfaction and access to care. Methods: A quasi-experimental separate pre-post sample design study investigated parent/caregiver satisfaction with a telephone advice nurse in an urban pediatric nurse-managed health center. The clinic medical information system was used to retrieve client visit data prior to the service and in the first year of the program. Results: Statistically significant differences were found on two items from the satisfaction with the advice nurse survey: the reason for calling (P < .05), and the importance of being involved in decision making (P < .05). Discussion: A telephone advice nurse may increase both parent/caregiver and provider satisfaction and access to care. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bellieni, C. V., Cordelli, D. M., Marchi, S., Ceccarelli, S., Perrone, S., Maffei, M., et al. (2007). Sensorial Saturation for Neonatal Analgesia. The Clinical Journal of Pain, 23(3), 219-221.
Aim: Sensorial saturation (SS) is a procedure in which touch, massage, taste, voice, smell, and sight compete with pain, producing almost complete analgesia during heel prick in neonates. SS is an apparently complex maneuvre, but when correctly explained it is easily learnt. In the present paper, we studied its feasibility, assessing whether a long training is really needed to achieve good results. Materials and Methods: We enrolled 66 consecutive babies and divided them randomly into 3 groups which received the following forms of analgesia: glucose plus sucking (A), SS performed by nurses (B), SS performed by mothers (C). We did not use perfume on the caregivers' hands, so that babies could smell the natural scent of the hands. We assessed pain level by the ABC scale. Results: Median scores of groups A, B, and C were: 1 (0 to 6), 0 (0 to 4), and 0 (0 to 6), respectively. Mean scores were: 0.6, 0.6, and 1.7 and standard errors were 0.38, 0.22, and 0.32, respectively. Scores of groups B and C were significantly lower than that of A (P = 0.03 and 0.006, respectively). No significant difference was found between values of scores of groups B and C. Conclusions: Even without the use of perfume on the hands, SS was effective as an analgesic maneuvre. It made no difference whether SS was performed by mothers who applied it for the first time or experienced nurses. SS is rapid to learn and any caregiver (mother, pediatrician or nurse) can effectively use it. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bensink, M., & Irving, H. (2005). Telemedicine and Paediatric Palliative Care. Wootton, Richard, 225-232.
(from the chapter) Paediatric palliative care is fundamentally different from adult palliative care and requires special consideration. Given the choice, most families choose to return home for end-of-life care. Caring for a dying child in the home provides the opportunity for improved outcomes for the patient and their family, but presents its own unique set of challenges. To date, research into the application of telemedicine to palliative care has almost exclusively concerned adult patients. Although these applications have included telephone advice lines, the establishment of education and support networks using videoconferencing and the use of the Internet for specialist consultation, it is in the area of home care for adult palliative patients in rural and remote areas that telemedicine has been most successful. Given the limited specialist paediatric palliative care support available in rural and remote areas and the support needs of the patients, their families and the health professionals caring for them, telemedicine for home paediatric palliative care appears to hold great promise. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Berecki-Gisolf, J., Lucke, J., Hockey, R., & Dobson, A. (2008). Transitions into informal caregiving and out of paid employment of women in their 50s. Social Science & Medicine, 67(1), 122-127.
Data from the Australian Longitudinal Study on Women's Health were used to study the order of events leading to informal care giving and changes in labour force participation in mid-aged women, taking into account health and socioeconomic status. This analysis included 9857 women who responded to the third (2001) and fourth (2004) surveys and provided data for the caring and employment variables used. Caring was defined as providing care for an ill, frail or disabled person at least 7 h/wk. Between 2001 and 2004, the proportion of women caring increased from 12 to 14%. Paid employment participation decreased from 67 to 62% in 2004. Logistic regression model results show that taking up caring between 2001 and 2004 was not statistically significantly associated with employment status in 2001. Among women who took up caring, however, hours spent in paid employment in 2001 was negatively associated with hours spent caring in 2004. Amongst women working in 2001, taking up caring between 2001 and 2004 was associated with reduced participation in paid employment. In conclusion, among mid-aged women, transitions into care giving were irrespective of time spent in paid employment, but were followed by a decrease in labour force participation. Policies could aim to support continuing labour force participation during care giving by creating flexible working arrangements; re-employment programs could support women who quit work in getting back to paid employment after a period of care giving. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Berlin, K. S. (2007). Predictors of pediatric feeding problems in community and clinic-referred samples: Comparisons of competing theoretical models. Dissertation Abstracts International: Section B: The Sciences and Engineering, 68(5-B), 3386.
Concerns about feeding are among the most common behavioral issues brought to primary health-care professionals by parents of preschool-aged children, with estimated prevalence rates of 25% to 45% of typically developing children. These rates increase substantially for children with developmental disabilities and comorbid medical issues. At the present time, there are two well developed and competing frameworks for predicting pediatric feeding problems. The first is based on Satter and Birch's theoretical and empirical work on typically developing children. The second is a Biobehavioral framework that is based upon learning principles and the work of behaviorally-oriented clinicians and researchers treating children with feeding problems. Both of these frameworks hypothesize that the relationship between a child's ability to regulate his/her intake and feeding problems depends on the level of mealtime structure provided by caregivers; however, these frameworks define these constructs differently. Data were collected from community (n = 265) and clinically-referred (n = 121) parents of children ranging in age from two to five years in order to: (1) determine group differences on indicators of feeding problems, regulation of intake, and mealtime structure; (2) establish the best fitting measurement model to define these aforementioned constructs based on competing theoretical perspectives; and (3) test the hypothesized relationships between Mealtime Structure, Regulation of Intake, and Feeding Problems. Clinically referred caregivers reported greater levels of food manipulation, distraction/avoidance, mealtime aggression, snacking in between meals, and regularly scheduled meals, and lower levels of positive mealtime environments, structured/non-distracting mealtime environments, beliefs that their child could attend to their feelings of hunger and fullness, and parent control of intake. Model fit statistics revealed the Satter and Birch approach formed the best fitting measurement model for the community sample; however, the best fit for the clinical sample was the alternative Biobehavioral Model. For the community sample the relationship between a child's ability to regulate his/her intake and feeding problems was moderated by mealtime structure such that this relationship decreased at higher levels of structure. For the clinical sample this buffering relationship was not found. Clinical implications, limitation, and directions for future research are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Berrien, V. M., Salazar, J. C., Reynolds, E., & McKay, K. (2004). Adherence to Antiretroviral Therapy in HIV-Infected Pediatric Patients Improves with Home-Based Intensive Nursing Intervention. AIDS Patient Care and STDs, 18(6), 355-363.
Adherence to combination antiretroviral therapy (ART) has been shown to be a determining factor in controlling viral replication, maintaining immunologic function and long-term survival in HIV-positive individuals. Little information is available on strategies to improve adherence in pediatric HIV-infected patients. We conducted a randomized, nonblinded, pilot study to determine if a home-based nursing intervention would improve medication adherence. The study was offered to all eligible HIV-positive patients receiving care at Connecticut Children's Medical Center's (CCMC) Pediatric and Youth HIV Program. Sixty-seven percent (37/55) of the patients and their caretakers participated. We randomized participants to either standard of care or the intervention trial. The intervention was designed to improve knowledge and understanding of HIV infection and HIV medications and to resolve or modify barriers to adherence. Both groups completed pre- and post-intervention questionnaires, assessing their knowledge and understanding of HIV, ART, and adherence. Adherence was estimated objectively from medication refill history and subjectively from a self-report score. We also inferred adherence from pre- to post-test plasma viral load and CD4+ T-cell percentages. The knowledge score (p = 0.02) and medication refill history (p = 0.002) improved significantly in the intervention group. The adherence self-report score improved, although not significantly (p = 0.07). We did not observe statistical differences in CD4+ T-cell counts or viral load between groups. We conclude that our home-based nursing intervention helped HIV-positive children and their families in better adhering to prescribed medication regimens. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Beyer, J. E., & Simmons, L. E. (2004). Home Treatment of Pain for Children and Adolescents with Sickle Cell Disease. Pain Management Nursing, 5(3), 126-135.
This ethnographic study examined family caregivers' perceptions of the effectiveness of comfort measures used at home for children with vaso-occlusive episodes (VOE) of sickle cell disease. Interviews were conducted in the hospital while children experienced VOE. Oral analgesics and most nonpharmacologic pain relief methods were rated by caregivers as only partly effective. Major themes that emerged from interview information reflected caregivers' efforts on behalf of their children in avoiding pain episodes, keeping a normal routine, "catching" the pain, getting their minds off the pain, helping the child get through the episode, and staying out of the hospital. Understanding the role of the family caregiver hi home settings may assist health care professionals to provide more empathetic care to children with VOE and to their families when children are admitted to the hospital. Findings may encourage professionals to design the most effective methods of home pain management for these families. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bhatia, S. K., Rezac, A. J., Vitiello, B., Sitorius, M. A., Buehler, B. A., & Kratochvil, C. J. (2008). Antidepressant prescribing practices for the treatment of children and adolescents. Journal of Child and Adolescent Psychopharmacology, 18(1), 70-80.
Objective: This study evaluates pediatric antidepressant prescribing practices of Nebraska clinicians. Methods: Surveys were sent in July, 2005, to 1,521 prescribing clinicians throughout Nebraska to assess pediatric antidepressant use along with any practice changes following the U.S. Food and Drug Administration (FDA) "black box" warning issued in October, 2004. Results: Over half (n = 866) of the clinicians responded to the survey, of which 96.8% reported awareness of the FDA "black box" warning. Of the respondents, 76.9% (n = 666) were prescribing antidepressants to children and/or adolescents. Clinicians reported decreased prescribing frequency for both children (15.5%) and adolescents (36.6%), with 36% having increased referrals to specialists. While 31.9% reported seeing patients more frequently upon initiation of antidepressants, only 7.5% reported weekly visits for the first month of treatment, as recommended by the FDA. Over one fifth (21.9%) reported a caregiver or patient had refused antidepressant medication treatment due to the FDA's warning. Conclusion: Clinicians in Nebraska report changes in clinical practice due to the issuance of the FDA "black box" warning, with a decrease in prescribing antidepressants to pediatric patients and an increase in referrals to specialists. Although awareness of the FDA's warning was evident among clinicians and patients, adherence to recommended guidelines was low. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Billings, D. M., & Jeffries, P. R. (2005). Learning Marketspace Partnerships: An Education-Service-Association Model for Developing Online Courses to Prepare Nurses for Clinical Practice in High-Demand Specialties. Oermann, Marilyn H, 3, 219-231.
(from the chapter) Health care employers are facing a shortage of nurses, particularly nurses prepared to work in specialty areas such as critical care, surgery, and home care (American Association of Colleges of Nursing, 2003). At the same time, schools of nursing cannot develop curricular content for each specialty nor do they have sufficient resources to develop and teach elective courses, focus areas, or graduate majors for each specialty area. The ability to prepare nurses for specialty practice is compounded by a shortage of nurse educators in clinical agencies and in schools of nursing (Hinshaw, 2001). Faced with these dilemmas, both health care agencies and schools of nursing are seeking innovative ways of recruiting and preparing nurses for high-demand practice areas. Although curricular solutions such as work-study options and capstone experiences offer opportunities for limited clinical experiences in specialty areas, these options are dependent on educator availability and tend to be expensive to sustain. Another option is to establish partnerships among clinical agencies, universities, and professional associations to leverage the resources of each to develop and offer online courses accessible to larger numbers of students and nurses. The purpose of this chapter is to describe a partnership model in which contributions from a health care organization, a school of nursing, and a professional nursing organization supported the development and offering of online courses that were used globally as well as locally by nursing students and nurses who were seeking to prepare for entry into one of three specialty areas (neonatal, pediatric, and adult critical care). (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Bilotta, C., & Vergani, C. (2008). Quality of private personal care for elderly people with a disability living at home: Correlates and potential outcomes. Health & Social Care in the Community, 16(4), 354-362.
To investigate correlates of the quality of private personal care for community-dwelling elderly people, this cross-sectional study enrolled 100 elderly outpatients living at home, along with their private aides and 88 informal caregivers, from May 2005 to January 2007. Cases were stratified according to the quality of private care as was described by both elderly participants and informal caregivers. In cases where the elderly person was suffering from overt cognitive impairment, only the opinions of the informal caregivers were taken into account. A comparison was made between the 'poor or fair care' group (n = 16), the 'intermediate care' group (n = 39) and the 'optimal care' group (n = 45). Considering the characteristics of private aides, there was a significant trend across the three groups in terms of language skills (P = 0.002) and level of distress with life conditions (P = 0.020). A statistical analysis performed on elderly participants without an overt cognitive impairment (n = 59) and informal caregivers showed an increase in the European Quality of Life Visual Analogue Scale score in the elderly group [mean + standard deviation (SD) were, respectively, 45 +or- 23.2, 63.7 +or- 19.7 and 68.8 +or- 21.6; P = 0.007], and a decrease in the Caregiver Burden Inventory score (mean +or- SD were, respectively, 34.9 +or- 25.3,26 +or- 17.7 and 17.6 +or- 14.6; P = 0.020) across the three groups. We found no significant difference between elderly people in the three groups in terms of social variables, functional and cognitive status, prevalence of depressive disorders and morbidity. Therefore, good language skills and non-distressing life conditions of private aides appeared to be correlates of an optimal quality of care for community-dwelling elderly people with a disability, and also a better quality of life for them and less distress for their informal caregivers appeared to be potential outcomes of the quality of personal care. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Biringen, Z., Fidler, D. J., Barrett, K. C., & Kubicek, L. (2005). Applying the Emotional Availability Scales to Children With Disabilities. Infant Mental Health Journal, 26(4), 369-391.
In this article, we describe issues regarding emotional availability and its application to children with disabilities. We then apply this approach to the scoring of emotional availability for caregiver-child interactions of children with disabilities, with information based on children with genetic mental retardation syndromes, children with autism, and children with hearing impairments. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bivens, K. R. (2009). The role of caregiver attachment style and sick role features in predicting pediatric unexplained medical complaints. Dissertation Abstracts International: Section B: The Sciences and Engineering, 69(12-B), 7845.
The purpose of this study was to replicate and extend findings related to the prevalence of and psychosocial predictors of unexplained medical complaints (UMCs) in a pediatric sample. Whereas UMCs have been studied rather extensively in the adult literature, the research related to unsubstantiated medical complaints in pediatric populations is sparse. Previous studies in our research lab have found that roughly 15% of pediatric visits are related to UMCs. These studies also found that caregivers may take on the role of parent to a sick child as a means of enhancing or protecting self-esteem, as well as fulfilling unmet attachment needs. The present study used all methods used in the two previous studies to operationalize UMCs, which allowed for comparison of the prevalence rates across these methods. Participants were 183 caregivers of children between the ages of 6 months and 12 years, recruited from the University Medical Center pediatric clinic. They completed measures of their children's physical symptoms, attitudes and experiences related to their children's health, and interpersonal attachment in the waiting room. They also allowed access to their children's medical records. Caregivers also completed a follow-up telephone interview in which they completed measures of their mood, response to their children's illnesses, and an additional measure of attachment. Results replicated previous findings (Deemer, 2002 and Bivens 2003) that 1 out of every 5 to 10 pediatric doctor visits are related to unexplained medical complaints. Results also replicated the finding that caregivers who viewed their children's illnesses as unique and used their children's illnesses as an excuse for personal shortcomings were more likely to report UMCs. Caregivers with the anxious/ambivalent attachment style were also more likely to report UMCs in their children. The present results provide further support for the model that self-enhancing sick role features and anxious/ambivalent attachment style of caregivers may lead to the report of unsubstantiated symptom complaints. Understanding psychological processes underlying UMCs could have significant implications with regard to reducing/preventing harmful effects to children (i.e. decreased academic and social functioning), as well as reducing the negative impact on the health care system. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Blackburn, C., & Read, J. (2005). Using the Internet? The experiences of parents of disabled children. Child: Care, Health and Development, 31(5), 507-515.
Background: Research has offered consistent evidence that the provision of crucial information to parents of disabled children, at a time when they need it and in a form that they can use, is an intractable problem. This makes it important to develop new and effective approaches to information presentation, distribution and delivery. The Internet has been put forward as a medium through which families needs for information and services can be met. This paper looks at parents of disabled children's experience of using it. Methods: A cross-sectional survey of 3014 adult careers, of which 788 were careers of disabled children aged 0-17. Data were collected using a postal questionnaire. Results: A high proportion (75%) had previously used the Internet. Of these, 63% were frequent users and 91% were using it at home. Popular uses were emailing, obtaining information about caring, ordering equipment and shopping online. Despite positive benefits, users experienced problems relating to technical issues and equipment and system design. Lack of time owing to caring and other circumstances was an issue for over half of all users. Never users were more likely to be living in rented accommodation, be unemployed and not have a PC at home. Reasons for not using the Internet included lack of access to equipment, cost and lack of skill. Conclusions: For some parents the Internet is a viable and,flexible medium for accessing useful information and services. However, caution about the extent to which it becomes the primary means for delivering information is needed. Technical problems and lack of time can make it difficult to search for complex information. The digital divide between users and non-users makes it crucial that issues of cost, lack of equipment and skill be addressed. Information needs to be made available in other forms to ensure that those who cannot or do not wish to use the Internet are not socially excluded. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Blonder, L. X., Langer, S. L., Pettigrew, L., & Garrity, T. F. (2007). The effects of stroke disability on spousal caregivers. NeuroRehabilitation, 22(2), 85-92.
Objective: To examine the effects of unilateral stroke patients' neurobehavioral characteristics on spousal psychosocial function. Participants: The sample consisted of twenty unilateral stroke patients and their spousal caregivers. Methods: Patient assessments included mood, affect perception, sensorimotor and cognitive function, marital satisfaction, and activities of daily living. Spousal assessments included mood, marital satisfaction, and perceived stress. Results: To avoid the risk of committing a type I error, the alpha-level of 0.05 was corrected for multiple comparisons involving the three outcome measures, resulting in an adjusted alpha of 0.017 (0.05/3). Using this criterion, the negative correlation between patient depression and spousal marital satisfaction was statistically significant (rs = -0.585, p = 0.007). There was also a trend for hemispheric side of stroke to correlate with spousal stress (rs = 0.498, p = 0.025), such that strokes in the left hemisphere were associated with greater stress, whereas strokes in the right hemisphere were associated with less stress. Conclusion: These results show that patient depression in particular constitutes a risk factor for marital dissatisfaction in the first few months following stroke. Given that spousal partners provide a large portion of informal support to stroke patients, successful treatment of patient depression may have benefits at the level of the individual, family, and community. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Blyth, C., & Gardner, A. (2007). 'We're not asking for anything special': Direct payments and the carers of disabled children. Disability & Society, 22(3), 235-249.
1997 saw the introduction of the Community Care (Direct Payments) Act in the UK. This piece of legislation introduced a mechanism that enabled local authorities to make cash payments to disabled people aged between 18 and 64 in lieu of directly provided services. The years since 1997 have seen the introduction of additional legislation resulting in direct payments now being an option for many more groups of people, including the carers of disabled children. Following the changes in the legislation, government now wishes to see local authorities significantly increasing the numbers of families that receive direct payments. This paper will report on a research project carried out within one local authority in the north-west of England that has one of the largest numbers of carers of disabled children receiving direct payments in the UK. Using a variety of methods this paper explores how the local authority has made direct payments so widely available to carers and the effect that this has had on their own and their children's lives. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bocchi, S. C. M., & Angelo, M. (2008). Between freedom and reclusion: Social support as a quality-of-life component in the family caregiver-dependent person binomial. Revista Latino Americana de Enfermagem, 16(1), 15-23.
This is a qualitative study which uses Grounded Theory as its methodological framework and Symbolic Interactionism as a theoretical base to understand the experience of family caregivers for Cerebrovascular Accident (CVA) patients with regard to social support during their rehabilitation process at home. The components (themes and categories) of the phenomenon assuming home care and specifically the themes assuming care with support and assuming care without support were inter-related for the purpose of comparison and analysis, in order to apprehend how the interaction between them occurred. It was observed that, in addition to the recovery of the patient's autonomy, social support is one of the intervening variables in quality of life for the family caregiver-disabled person binomial, particularly with respect to the caregiver's freedom to resume his/her life plan. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bonner, M. J., Hardy, K. K., Guill, A. B., McLaughlin, C., Schweitzer, H., & Carter, K. (2006). Development and validation of the Parent Experience of Child Illness. Journal of Pediatric Psychology, 31(3), 310-321.
Objective: To develop a measure of parent adjustment related to caring for a child with a chronic illness and to evaluate the reliability and validity of the measure with a group of parents of children with brain tumors. Methods: One-hundred forty-nine parents of patients (age < 1-17 years) diagnosed with a brain tumor were assessed using the 25-item self-report Parent Experience of Child Illness (PECI). Internal consistency, construct validity, and factor structure were assessed. Results: Exploratory factor analysis yielded four theoretically coherent factors including: Guilt and Worry, Emotional Resources, Unresolved Sorrow and Anger, and Long-term Uncertainty. Internal reliability for the PECI scales ranged from .72 to .89, suggesting acceptable reliability. As evidence of construct validity, the PECI scales show significant, positive correlations with scales from established measures of parent adjustment. Conclusion: The PECI augments the current literature by providing a brief measure of parents' subjective distress and perceived Emotional Resources, domains that are critical but understudied in children with chronic illness and their caregivers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bonner, M. J., Hardy, K. K., Willard, V. W., & Hutchinson, K. C. (2007). Brief report: Psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. Journal of Pediatric Psychology, 32(7), 851-856.
Objective: To evaluate the psychosocial functioning of fathers as primary caregivers of pediatric oncology patients. Methods: Fathers who identified themselves as the primary medical caregivers were given a packet of questionnaires, including the Brief Symptom Inventory (BSD, the Impact of Event Scale (IES), the Impact on Family Scale (IFS), the Caregiver Strain Questionnaire (CGSQ), and the Parent Experience of Child Illness (PECI) scale, to complete and return by mail. The 23 fathers who returned the questionnaire packets were compared with 23 mothers who were matched on demographic variables. Results: There were no differences between groups on self-report measures of distress or illness-related parenting stress. Descriptively, however, the majority of parents were above normative means on measures of psychological distress with a significantly greater proportion of fathers endorsing elevated levels of depression on the BSI. Conclusion: Including fathers in pediatric psychosocial research is important and represents a growing trend in psycho-oncology. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bono, K. E., Dinehart, L. H., Claussen, A. H., Scott, K. G., Mundy, P. C., & Katz, L. F. (2005). Early Intervention with Children Prenatally Exposed to Cocaine: Expansion with Multiple Cohorts. Journal of Early Intervention, 27(4), 268-284.
Prenatal cocaine exposure is an indicator for adverse developmental outcomes. To prevent developmental disabilities, an early intervention program for children birth to 3 years was developed that included three groups: center-based, home-based, and primary care comparison. The intervention was implemented across 10 years and data were collected on 342 children and families who were primarily urban, poor, and members of traditionally underrepresented groups. At 36 months of age, center and home-based intervention participants had more advanced cognitive and language abilities and fewer behavior problems than the primary care group participants. In addition, center-based participants had more advanced language abilities than home-based participants. The findings indicate that the early intervention impact is sustainable over time and has a positive effect on children at risk due to prenatal cocaine exposure. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bookwala, J., Zdaniuk, B., Burton, L., Lind, B., Jackson, S., & Schulz, R. (2004). Concurrent and Long-Term Predictors of Older Adults' Use of Community-Based Long-Term Care Services: The Caregiver Health Effects Study. Journal of Aging and Health, 16(1), 88-115.
Objectives: This study examined concurrent and long-term associations between caregiver-related characteristics and the use of community long-term care services in a sample of 186 older adults caring for a disabled spouse. Method: We used two waves of data from the Caregiver Health Effects Study, an ancillary study of the Cardiovascular Health Study. Caregiver-related need variables as predictors of service use were of primary interest and included caregiving demands, caregiver mental and physical health, and mastery. Their contribution to service use was examined after controlling for known predictors of service use. Results: At Time 1, more caregiver depressive symptoms predicted greater service use; at Time 2, more caregiver activity restriction and depressive symptoms predicted greater formal service use; increases in caregiver activity restriction and depressive symptomatology over time predicted increases in service use. Discussion: Caregiver-related need variables play a significant role in defining utilization patterns of community-based long-term care services among older adults. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bor, R., du Plessis, P., & Russell, M. (2004). The impact of disclosure of HIV on the index patient's self-defined family. Journal of Family Therapy, 26(2), 167-192.
For most people facing a serious illness, the family is regarded as the primary source of support. Research suggests that patterns of support may differ for people infected with HIV. Access to support normally requires disclosure of one's health problem to others. This study examined the impact of disclosure of HIV on the index patient's self-defined family. Most participants were gay men attending a London HIV clinic. Both they and the care-givers whom they identified to the researchers were interviewed. The results of this qualitative study highlight the fact that many gay men with HIV do not regard their biological family as their primary social support system. Friends and partners were commonly cited as primary care-givers. Most of those interviewed who provided support to the infected individual clearly remembered the disclosure event. They also had a number of emotional reactions, over time, to disclosure. We argue that adjustment to illness among care-givers is a complex two-way, reciprocal process whereby the infected individual and care-giver take subtle cues from one another in terms of how they appear to one another to cope. Some emotionally painful feelings may be experienced but not openly expressed. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Bornman, J., Alant, E., & Lloyd, L. L. (2007). A beginning communication intervention protocol: In-service training of health workers. Education and Training in Developmental Disabilities, 42(2), 190-208.
Primary health care nurses are frequently overlooked when delivering services to children with developmental disabilities, despite the fact that they are often the first contact many primary caregivers have with rehabilitation professionals and usually remain the bridge between caregivers and professionals. A time series one group design with withdrawal was used to evaluate an in-service training programme for primary health care workers aimed at facilitating beginning communication skills between primary caregivers and their children with developmental disabilities. Training employed adult learning principles and was one week long, followed by three follow-ups that were conducted in situ (at two weeks, six weeks and five months post-training). Multiple measurements were used to evaluate the knowledge and skills acquired after training, namely questionnaires, structured interviews, skill demonstrations (which were video recorded and rated by the researcher and an independent rater) and a focus group. Results indicated that the particular in-service training programme was relevant in bringing about a significant change in the targeted domains, namely knowledge and skills. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bourke-Taylor, H., Law, M., Howie, L., & Pallant, J. (2009). Development of the Assistance to Participate Scale (APS) for children's play and leisure activities. Child Care, Health & Development, 35(5), 738-745.
Aim: This paper describes the development and psychometric evaluation of the Assistance to Participate Scale (APS). The APS measures the assistance that a school-aged child with a disability requires to participate in play and leisure activities from the primary carer's perspective. Method: Mixed methodology using an instrument design model was used to complete two studies. First, a qualitative research design was used to generate items and scoring criteria for the APS. Second, a quantitative study evaluated the instrument using data collected from 152 mothers with children aged 5-18 years. Statistical analysis assessed the underlying structure, internal consistency and construct validity of the APS. Results: Exploratory factor analysis revealed two correlated components, reflecting home-based and community-based play activities. Both subscales and the total APS scale showed good internal consistency. The APS correlated as predicted with individual domains and overall scores for other validated measures (Pediatric Evaluation of Disability Inventory caregiver scales and Pediatric Quality of Life Inventory) with correlations ranging from rho = 0.42 to rho = 0.77. The APS was able to discriminate between groups of children based on type of schooling (regular or segregated), need for equipment/assistive devices, frequency of lifting and disability. Conclusions: The APS provides professionals with a brief psychometrically sound tool that measures the amount of caregiver assistance provided to a child with a disability to participate in play and recreation. The APS may be used as an outcome measure and to evaluate and predict the amount and type of additional assistance families need to facilitate their child's participation in an important aspect of the child's daily life and development: play and recreation. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bowey, L., & McGlaughlin, A. (2005). Adults with a learning disability living with elderly carers talk about planning for the future: Aspirations and concerns. British Journal of Social Work, 35(8), 1377-1392.
The majority of adults with a learning disability live with family carers, many of whom are ageing and have support needs of their own. Planning for the future thus becomes the key to preventing a crisis situation when family care is no longer viable because of death or ill health. Existing knowledge and practice are largely based upon the perspective of professionals and carers. This study explores the views, aspirations and concerns of adults with a learning disability, about living at home and planning for the future. Findings show that participants were very aware of the need for alternative housing or support in the future and had clear preferences about their future options. However, they also showed extensive concern for their family carers and this often impacted on their willingness to plan for the future or to move to alternative housing. Their demonstrable awareness of the inevitable death or ill health of family carers, and willingness to engage with the implications, emphasize the importance of involving adults with a learning disability in planning for their future, as well as providing them with bereavement support. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Bowey, L., & McGlaughlin, A. (2007). Older carers of adults with a learning disability confront the future: Issues and preferences in planning. British Journal of Social Work, 37(1), 39-54.
The Valuing People White Paper (Department of Health, 2001) requires services to secure a plan for all service-users with learning disabilities living with older carers and promises them and their families more choice and control over how and where they live. This paper examines the views of the older carers (aged over seventy) of sixty-two adults with a learning disability about planning for the future. Fifty-six took part in interviews in their own homes and six completed a questionnaire. All carers were white and recruited from one local authority in response to the requirements of the White Paper. Findings indicate that a significant proportion (thirty-four-55 per cent) is either not ready or is unwilling to make future plans. Barriers to planning include a perceived lack of need due to the existence of two carers, a lack of awareness of timescales involved in securing housing, difficulties in letting go, a lack of confidence in available housing options, and the existence of mutually supportive relationships. The findings show a need for a proactive approach to information and support provision to enable these families to work through a process of making plans for the future. This is essential to prevent the need for emergency placements in response to crisis and in turn to ensure that adults with learning disabilities have genuine choice and involvement in how and where they live. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Brody, E. M. (2004). Women in the middle: Their parent care years (2nd ed.). 371.
(from the introduction) "Women in the middle" were so-named because daughters, who are the main caregivers to elderly disabled parents, are most often in their middle years, are caught in the middle of multiple competing demands on their time and energy (husbands, children, parents, and work), and are often in the middle emotionally between elderly parents on the one hand and husbands and children on the other. The negative consequences of their situation are among the most consistently documented findings in a multiplicity of research studies throughout the past few decades--consequences to their own mental and physical health, family well-being, vocational activities, and other aspects of their lives. During the intervening years since the first edition of Women in the Middle was published, change, continuity, and diversity have proceeded. Women's responsibilities and the pressures they experience have increased and intensified. Taken together, all information serves to show that women right now are even more in the middle and there are more such women than ever before. This second edition includes much new information, for change has also has occurred in a wide variety of social, economic, and environmental conditions as well as in demography. Highly visible now, for example, are a wide variety of new housing arrangements for older people, new family forms, geographic mobility, and many other developments. Gerontological research has not been idle. Numerous studies have been reported that serve to enrich and fill out the picture. The new relevant findings that have emerged are included in this book. This book focuses squarely on the women themselves--daughters and daughters-in-law--and tells the caregiving story from their perspective. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Brown, E., Gan, V., Jeffress, J., Wood, B. L., Miller, B. D., & Khan, D. A. (2008). Antidepressant treatment of caregivers of children with asthma. Psychosomatics: Journal of Consultation Liaison Psychiatry, 48(5), 420-425.
Background: Depression is common in caregivers of children with asthma and is associated with increased emergency service utilization for the child's asthma. Objective: This pilot study examined the impact of antidepressant treatment of depressed caregivers on the caregiver's depression and the child's asthma. Method: Eight depressed caregivers of children with asthma were given up to 6 months of algorithm-based antidepressant therapy. Results: Caregiver depressive symptoms and the child's asthma symptoms improved significantly. Conclusion: Unscheduled clinic visits showed a trend toward significant decrease. Larger trials are needed to confirm these findings and identify mechanisms linking improvement in caregiver depression with improvement in their child's asthma. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Brown, F. J., & Guvenir, J. (2009). The experiences of children with learning disablilities, their carers and staff during a hospital admission. British Journal of Learning Disabilities, 37(2), 110-115.
Government policy is that people with learning disabilities should have their healthcare needs met by mainstream services. This study interviewed the carers of 13 children with learning disabilities admitted to hospital for a period longer than 24 h. Nursing staff and two children were also interviewed. Five themes were identified as having a significant impact: (i) child, carer and staff anxiety, (ii) preparedness for the admission, (iii) difficulties managing the child's behaviour, (iv) carer presence during the admission and (v) ward environment. This study presents edited responses from children, their carers and ward staff and identifies areas for service improvement. These include an emphasis on the value of emotional support, ensuring staff are prepared for hospital admission, agreeing strategies for supporting the child's behaviour, clarifying carers and staff roles during an admission, ensuring the child has an individual room if required. Study limitations are discussed and directions for future research recommended. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Buki, L. P., Kogan, L., Keen, B., & Uman, P. (2005). In the midst of a hurricane: A case study of a couple living with AIDS. Journal of Counseling & Development, 83(4), 470-479.
This case study provides insight into 1 heterosexual couple's experience with AIDS. Through a series of interviews, the authors examined the experiences of a husband in the advanced stages of AIDS and of his wife, the primary caregiver. A thematic analysis revealed 4 themes: the emotional impact of the diagnosis, changes in the couple's daily lives, needs for social support, and spiritual journeys. Recommendations are given for counselors working with persons with AIDS and their heterosexual partners. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Buki, L. P., Kogan, L., Keen, B., & Uman, P. (2007). In the midst of a hurricane: A case study of a couple living with AIDS. Dell Orto, Arthur E, 329-350.
(create) This reprinted article originally appeared in Journal of Counseling & Development, 2005, Vol. 83, 470- 479. (The following abstract of the original article appeared in record 2005-13356-009.) This case study provides insight into 1 heterosexual couple's experience with AIDS. Through a series of interviews, the authors examined the experiences of a husband in the advanced stages of AIDS and of his wife, the primary caregiver. A thematic analysis revealed 4 themes: the emotional impact of the diagnosis, changes in the couple's daily lives, needs for social support, and spiritual journeys. Recommendations are given for counselors working with persons with AIDS and their heterosexual partners. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Burns, C. (2009). Disabled children living away from home in foster care and residential settings. 135.
(from the introduction) We decided at the outset not to consider different groups of disabled children separately but rather use the term 'disabled' to include children and young people with a range of physical, cognitive, emotional and social difficulties. Chapter 1 clarifies the terms used in the book and considers the different places disabled children may live when they leave the care of their parents. The vast majority of disabled children in the United Kingdom (UK) live at home with their families and are well looked after. The main reason for leaving the family home is that the parents feel they can no longer care for the child. The need for services to prevent the breakdown of home care, the different care challenges for parents and the changing patterns of disability are dealt with in Chapter 2. For some disabled children, it is concerns about neglectful care and abuse which prompt the move from home. However, whatever the reason, leaving home is a cause of emotional distress to the child. A stable and nuturing home life provides the foundation for future mental health and the disabled child leaving home is at increased risk for subsequent mental health problems. The new placement is more likely to be successful and mental health and behaviour problems avoided, if the child's carers are well matched to the child and have advice and support readily available to them from social care workers, health professionals (specialist community nurses, paediatricians, child and adolescent mental health workers, therapists and the primary care team) and teachers. A number of Chapters consider aspects of health service coordination, others look at behaviour problems and emotional issues and explore ways of promoting good mental health. Chapter 8 deals with educational matters and highlights the importance of leisure and fun. Finding out what the disabled child or young person wants (including those with impaired communication) and ensuring, wherever possible, that these needs are addressed, is key to improving the quality of their lives. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Bursch, B., Tsao, J. C., Meldrum, M., & Zeltzer, L. K. (2006). Preliminary validation of a self-efficacy scale for child functioning despite chronic pain (child and parent versions). Pain, 125(1-2), 35-42.
Despite frequent targeting of health beliefs in pediatric chronic pain treatment interventions, there are currently no reliable and valid self-efficacy measures for children with chronic pain and their parents. The current study examined the psychometric properties of parent and child versions of a self-efficacy measure related to the child functioning normally when in pain. Pediatric pain patients, 9-18 years of age, and a caregiver completed questionnaires before an initial tertiary care clinic appointment. The 67 patients in our sample had an average of 1.7 pain locations, including abdominal pain (43.3%), headaches (50.7%), body pain (25.4%), back pain (23.9%), limb pain (20.9%), and/or chest pain (9.0%). Reliability for the new measures was excellent; the Cronbach's alpha was .89 for the 7 child items and .90 for the 7 parent items. Strong evidence for construct validity was also obtained as 23 of the 27 hypothesized correlations were confirmed. As predicted, parent and child ratings of increased self-efficacy for the child functioning normally when in pain were significantly correlated with each other, and to parent reports of fewer problems functioning due to physical or emotional problems; parent reports of fewer somatic, behavioral or emotional symptoms; parent reports of increased self-esteem, and unrelated to child pain, age and gender. Additionally, child ratings of increased self-efficacy were significantly correlated with child reports of increased self-esteem and fewer somatic symptoms. Replication with a larger sample size, more complex modeling, and prospective studies are indicated. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Cadell, S., & Marshall, S. (2007). The (re)construction of self after the death of a partner to HIV/AIDS. Death Studies, 31(6), 537-548.
The aim of this study was to explore individuals' self-construals after the loss of a partner from HIV/AIDS for whom they were a caregiver. Seven gay or transsexual bereaved caregivers were interviewed after the death of their partners. The data revealed patterns suggestive of A. Aron and E. N. Aron's (1986) "inclusion of others in the self" (IOS) with partners described as part of participants' identity. Using the metaphor of the IOS, the results illustrate how care-giving became a part of the self as well as aspects of the partner. Upon the death of the partner, the loss resulted in a crisis of meaning due to the loss of the person and relationship that had contributed significance and purpose to life. Regaining meaning involved making sense of both the relationship and the caregiving role. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Caldwell, J. (2008). Health and access to health care of female family caregivers of adults with developmental disabilities. Journal of Disability Policy Studies, 19(2), 68-79.
The physical and mental health status of women providing care to adult relatives with developmental disabilities was compared with that of the general female population in the United States. There were no differences on physical health across four age groups. However, the mental health of midlife caregivers (45-54 years of age) and older caregivers (older than 65 years) was worse than national norms. This may be associated with two key periods: transitions to adulthood of individuals with disabilities and transitions when aging caregivers are no longer able to provide care. Greater unmet needs for services contributed to poorer mental health. Poorer access to health care also contributed to poorer mental and physical health. Unmet needs for services and out-of-pocket disability-related expenses appeared to pose difficulties for working age caregivers in affording the financial costs of health care for themselves. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Caldwell, J., & Heller, T. (2007). Longitudinal outcomes of a consumer-directed program supporting adults with developmental disabilities and their families. Intellectual and Developmental Disabilities, 45(3), 161-173.
Longitudinal impacts of a consumer-directed support program that provides families with an individualized budget were studied at three points in time over a 9-year period: Time 1 (1991), Time 2 (1995), and Time 3 (2000). At Time 3, families in the program were also compared with families on the waiting list. Over time, families in the program experienced decreased unmet service needs, higher service satisfaction, increased community participation of individuals with disabilities, and decreased caregiver burden. At Time 3 families in the program had fewer unmet needs and higher service satisfaction than did families on the waiting list; there were no differences in community participation and caregiver burden. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Carey, J. C., Wade, S. L., & Wolfe, C. R. (2008). Lessons learned: The effect of prior technology use on web-based interventions. CyberPsychology & Behavior, 11(2), 188-195.
This study examined the role of regular prior technology use in treatment response to an online family problem-solving (OFPS) intervention and an Internet resource intervention (IRI) for pediatric traumatic brain injury (TBI). Participants were 150 individuals in 40 families of children with TBI randomly assigned to OFPS intervention or an IRI. All families received free computers and Internet access to TBI resources. OFPS families received Web-based sessions and therapist-guided synchronous videoconferences focusing on problem solving, communication skills, and behavior management. All participants completed measures of depression, anxiety, and computer usage. OFPS participants rated treatment satisfaction, therapeutic alliance, and Web site and technology comfort. With the OFPS intervention, depression and anxiety improved significantly more among technology using parents (n = 14) than nontechnology users (n = 6). Technology users reported increasing comfort with technology over time, and this change was predictive of depression at followup. Satisfaction and ease-of-use ratings did not differ by technology usage. Lack of regular prior home computer usage and nonadherence were predictive of anxiety at followup. The IRI was not globally effective. However, controlling for prior depression, age, and technology at work, there was a significant effect of technology at home for depression. Families with technology experience at home (n = 11) reported significantly greater improvements in depression than families without prior technology experience at home (n = 8). Although Web-based OFPS was effective in improving caregiver functioning, individuals with limited computer experience may benefit less from an online intervention due to increased nonadherence. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Chaix, B., Veugelers, P. J., Boelle, P.-Y., & Chauvin, P. (2005). Access to general practitioner services: The disabled elderly lag behind in underserved areas. European Journal of Public Health, 15(3), 282-287.
Background: Several studies have shown that people living in areas underserved in physicians have reduced odds of consulting. However, beyond the magnitude of this effect averaged for the whole population, policymakers need to know whether specific subgroups faced with transportation difficulties, such as the elderly and especially the disabled elderly, have a particularly restricted access to physicians when residing in underserved areas. Methods: The study sample, representative of the French population aged 18-75 in 1999, comprised 12,405 individuals. Multilevel Poisson models were used to investigate the impact of the area-level density of general practitioners (GPs) on the number of GP consultations reported over the previous 12 months. Results: The mean number of GP consultations over the previous 12 months was 3.8 (S.D. = 4.9). Multivariate analyses indicated that living in areas underserved in GPs lead to a greater reduction in primary care utilization for the elderly, and especially for the disabled elderly, than for younger age groups. The disabled elderly had 244% more GP consultations (95% CI: +79%, +562%) when they lived in areas with high versus low GP density (defined with the 10th and 90th percentiles as cut-offs). Conclusion: If further research confirms our findings, this increasingly disturbing public health issue in industrialized countries where populations are ageing will require priority policy measures. Ensuring that elderly people living in underserved areas have adequate access to primary care may prevent future hospitalizations, use of home care services and institutionalization. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Chen, H. J., & Boothroyd, R. A. (2006). Caregivers' level of trust in their children's health care providers. Journal of Child and Family Studies, 15(1), 57-70.
Trust in healthcare providers is associated with clinical outcomes among adult patients. Children with disabilities have complex health needs that place stress on caregivers. Consequently, they are increasingly likely to rely on their children's health care providers to ensure children's health care needs are met. However, no studies have explored factors affecting caregivers' trust in their children's providers. We assessed caregivers' trust in their children's providers and identified predictive factors of trust. The results indicate that children's disability condition, functional status, age, the providers' specialty, and the type of health care plan are significant predicators of caregiver's trust. Specifically, caregivers of children with emotional/behavioral disabilities and children with poor physical or emotional/behavioral functioning reported less trust in their children's providers compared to caregivers of children without physical disabilities or no disability and those having higher levels of physical or emotional/behavioral functioning. In addition, caregivers of younger children had more trust compared to caregivers of older children. Caregivers of children enrolled in a managed care plan for physical health care reported less trust compared to caregivers of children in other organizational arrangements. Finally, caregivers reported more trust in physical health providers compared to mental health providers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Cho, M. G. (2008). Emotional understanding and social interactions of caregivers and their children with autism, Down syndrome, and children without disabilities. Dissertation Abstracts International Section A: Humanities and Social Sciences, 69(2-A), 563.
This study investigated caregivers' communication styles and children's emotional development. Emotion-laden puzzle tasks were used to elicit caregivers' communication styles while interacting with their children. Participants included children with autism (N=15), children with Down syndrome (N=10), and typical children (N=15) and their caregivers. As expected, caregivers of children with autism and Down syndrome (DS) used more behavior and attention directives with their children, and caregivers of typical children used more conversation-eliciting prompts with their children. Parents of children with Down syndrome also used a unique communication style in which they asked a question and immediately answered it themselves. Additionally, caregivers of typical children focused more on emotion concepts in their communications with their children and caregivers of autism and DS used more cognitive concepts such as labeling colors and shapes. Caregivers of the autism and DS groups tended to use more behavior directives with developmentally younger children and more conversation-eliciting styles and more emotion-related utterances with children who had higher language and cognitive abilities. These results suggest that children's unique characteristics are associated with distinct caregiver interaction styles. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Choi, N. G., & Bohman, T. M. (2007). Predicting the Changes in Depressive Symptomatology in Later Life: How much do Changes in Health Status, Marital and Caregiving Status, Work and Volunteering, and Health-Related Behaviors Contribute? Journal of Aging and Health, 19(1), 152-177.
This study examined the unique effects of four variable groups on changes in older adults' depressive symptoms for a 2-year period: (1) baseline health and disability status, (2) changes in health and disability since baseline, (3) stability and changes in marital and caregiving status and in work and volunteering, and (4) stability and changes in health-related behaviors. With data from the 1998 and 2000 interview waves of the Health and Retirement Study, the authors used gender-separate multistep (hierarchical) residualized regression analyses in which the Center for Epidemiological Studies Depression scale (CES-D) score at follow-up is modeled as a function of the effect of each group of independent variables. As hypothesized, changes in health, disability, marital, and caregiving status explained a larger amount of variance than the existing and stable conditions, although each group of variables explained a relatively small amount (0.3-3.4%) of variance in the follow-up CES-D score. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Christie, N. H. (2008). Surface emg home trainers or progressive relaxation training: Comparing home practice interventions for the treatment of coexisting migraine and tension-type pediatric headache. Dissertation Abstracts International: Section B: The Sciences and Engineering, 68(11-B), 7700.
This research sought to determine which type of home practice (surface EMG home trainers or progressive relaxation) proved most effective in alleviating coexisting pediatric migraine and tension-type headache. Subjects were randomized into two groups that were either assigned a surface EMG home trainer or a progressive muscle relaxation CD to practice at home. Subjects (N=15) participated in the 12-week study that entailed establishing a four-week baseline period wherein subjects recorded headache episodes in a headache symptom log. This was followed by a second four-week treatment intervention phase consisting of progressive relaxation and surface EMG biofeedback in the clinic. Following this intervention phase, home practice and clinic visits ended. Subjects then kept a final four-week record of headache episodes. The mean age of subjects was 11.5. The headache symptom log was the outcome measure that recorded headache frequency, duration, and intensity. While there was no statistically significant difference between the two groups, there was a slight trend toward surface EMG home trainer practice as more effective in reducing headache duration and intensity. The findings are consistent with past studies that support home practice as an essential component to treatment success for children to independently manage headache pain. Directions for future research are discussed that include the need for a larger sample size to determine statistical significance and refining the methodological procedure to sustain children's interest. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Clarke, J., & Quin, S. (2007). Professional carers' experiences of providing a pediatric palliative care service in Ireland. Qualitative Health Research, 17(9), 1219-1231.
In this article the authors present findings on professional carers' experience of providing pediatric palliative care to children with life-limiting conditions. For this qualitative study, part of a national pediatric palliative care needs analysis, the authors engaged in 15 focus group interviews and drew on the responses of open-ended questions to give voice to the experiences of professional carers and to situate the humanity of their caring reality. This humanity is articulated through three themes: clarity of definition and complexity of engagement, seeking to deliver a palliative care service, and the emotional cost of providing palliative care. Further analysis of these themes points to a work-life experience of skilled and emotional engagement with children, and their parents, in complex processes of caregiving and decision making. Pediatric palliative care occurs in an environment where parents shoulder a large burden of the care and professionals find themselves working in underresourced services. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Clawson, E. P., Kuchinski, K. S., & Bach, R. (2007). Use of behavioral interventions and parent education to address feeding difficulties in young children with spastic diplegic cerebral palsy. NeuroRehabilitation, 22(5), 397-406.
The purpose of this study was to assess the effectiveness of an intensive day patient pediatric feeding program using oral motor exercises, behavioral interventions, and parental education to increase the oral feeding of children with spastic diplegic cerebral palsy. Eight children between the ages of 18 months to 4.7 years participated in the feeding program for an average of 5.8 weeks. The program consisted of structured oral motor exercises, rewards for reinforcement of appropriate feeding behaviors such as accepting food, chewing, and swallowing, as well as extinction for inappropriate feeding responses. Results show improvement in mealtime skills and behaviors necessary for increasing oral intake. There was improvement in ability to open the mouth for the presentation of the food as well as improved timeliness of swallowing without gagging, expelling or holding food in the mouth. The children were able to tolerate longer meal sessions and consume a greater quantity of food resulting in greater caloric consumption. The children who were tube fed at admission were able to decrease the amount of tube supplementation due to their improved oral intake. Caregivers improved in their ability to feed their children by providing appropriate instructions, prompts and consequences (IPC) during meals. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Connelly, M., Wagner, J. L., Brown, R. T., Rittle, C., Cloues, B., & Taylor, L. (2005). Informant Discrepancy in Perceptions of Sickle Cell Disease Severity. Journal of Pediatric Psychology, 30(5), 443-448.
Objectives: To evaluate whether informants (children, caregivers, and physicians) differ in their perceptions of chronic disease severity and the extent to which these differences can be explained by objective indices of disease severity, and adjustment of the caregiver. Methods: Participants were 58 children and adolescents between the ages of 8 and 18 years diagnosed with sickle cell disease. Information on perceptions of disease severity, caregiver adjustment, and biological markers of disease severity was obtained at a routine clinic follow-up appointment. Results: Analyses indicated significant differences in perceptions of disease severity. Psychological adjustment of the caregiver and biological indices of disease severity were significant predictors of these differences. Conclusion: Implications for the association between chronic disease and adjustment are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Coulter, H. (2006). Review of Achieving Best Behaviour for Children with Developmental Disabilities: A Step-by-step Workbook for Parents and Carers. Child Care in Practice, 12(4), 393-394.
Reviews the book, Achieving Best Behaviour for Children with Developmental Disabilities: A Step-by-step Workbook for Parents and Carers by Pamela Lewis (2005). This is a large paperback, which aims to give parents and other carers very practical information on how to manage difficult or challenging behaviour. The book is not exclusively aimed at children with autism and could also be used by carers working with children with other developmental disorders. Many of the ideas discussed could also apply to those caring for adults with learning difficulties and challenging behaviour. The book aims to help parents understand the principles of behaviour management and then put them into practice. The book is divided into a number of sections and has a very interactive format. It could almost be described as a "home teaching course" to enable parents to build up a detailed picture of their child, with individually targeted strategies to manage specific behaviour. this book could help to empower parents rather than leave them feeling helpless and dependent on others. Alos, the fact that it does try to go beneath the surface of behaviour problems and address underlying causes makes it more than a basic behavioural therapy book. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Cowden, J. E., & Torrey, C. C. (2007). Motor development and movement activities for preschooler and infants with delays: A multisensory approach for professionals and families (2nd ed.). 334.
(from the cover) Thoroughly revised and updated, this second edition continues to present both a theoretical and practical approach to motor development and adapted physical activity programs for preschoolers and infants with delays or disabilities. Written from a broad perspective, the authors use easy-to-understand language so that families, caregivers, students, and teachers may provide instruction utilizing the ecological dynamics of various environments. Chapter topics include: motor development, organization of the nervous system, muscle tone, medical and biological considerations (including prematurity and low birth weight, drug exposure, and autism spectrum disorders), assessment, principles of intervention, and multisensory activities. This new edition identifies the effects of Autism Spectrum Disorders on sensory dysfunction and provides activity interventions to be used by movement specialists. Additionally, the book explains the principles of motor development and answers questions related to positioning, lifting, carrying, and feeding of young children. Practical suggestions and activities are provided for families and professionals to enhance sensory-motor development of the young child during structured motor intervention and throughout the day. Generously illustrated, this comprehensive book is an excellent resource for adapted physical educators, early interventionists, and caregivers in motor development for young children with delays or identified disabilities. It will additionally serve as a reference for individuals developing motor programs for older children, particularly children with severe sensory-motor delays. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Cullen, L. A., & Barlow, J. H. (2004). A training and support programme for caregivers of children with disabilities: An exploratory study. Patient Education and Counseling, 55(2), 203-209.
Our aim was to conduct an exploratory evaluation of an intervention designed to equip caregivers with simple massage skills that they could use with their children in the home. The sample comprised 82 parents and 82 children with disabilities. Data were collected by self-administered questionnaires at two points in time: baseline, and immediately post-programme (after 8 weeks). Qualitative data were collected through Home Record Sheets and Monitoring Forms completed by caregivers and therapists, respectively. Results revealed statistically significant improvements in caregivers' self-efficacy in their ability to conduct massage, in managing children's psychosocial wellbeing and in levels of anxious mood. Caregiver reports of children's sleeping patterns and eating showed significant improvements. Qualitative data confirmed that caregivers believed that children's sleep patterns improved and also suggested improvements in children's bowel movements, awareness of their bodies, movement, and communication; factors that could be included in future evaluation. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Cunningham, P. B., Naar-King, S., Ellis, D. A., Pejuan, S., & Secord, E. (2006). Achieving adherence to antiretroviral medications for pediatric HIV disease using an empirically supported treatment: A case report. Journal of Developmental and Behavioral Pediatrics, 27(1), 44-50.
Adherence to antiretroviral medication regimens among human immunodeficiency virus positive-children is influenced by a number of psychosocial factors including characteristics of the child, the caregiver, the medical team, and the medications. To address these factors requires treatment approaches that are flexible and comprehensive. One such treatment approach is multisystemic therapy (MST), an empirically supported intensive home-based treatment approach that has been proven effective with other chronic pediatric conditions. This case report describes the use of MST with a poorly adherent, perinatally infected adolescent. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Davidson, T., Krevers, B., & Levin, L.-A. (2008). In pursuit of QALY weights for relatives: Empirical estimates in relatives caring for older people. The European Journal of Health Economics, 9(3), 285-292.
This study estimates quality-adjusted life-year (QALY) weights for relatives caring for an older person. The data used are from the Swedish part of the EUROFAM-CARE study. A new measure is introduced called the R-QALY weight, defined as the effect on a relative's QALY weight due to being a relative of a disabled or sick individual. R-QALY weights were created by comparing relatives' QALY weights with population-based QALY weights. They were also created by comparing with QALY weights reassessed for a hypothetical situation in which the older person needed no care. The results indicate that R-QALY weights are small when compared with population- based weights, but large when compared with QALY weights reassessed for the hypothetical situation. Moreover, R-QALY weights were affected by relatives' age, sex, and subjective perception of positive and negative aspects of the caregiving situation. These aspects should therefore be taken into account in health economics evaluations using a societal approach. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
D'Cruz, P. (2008). The healthcare system in HIV/AIDS: An inextricable component in the experience of family care. Critical Public Health, 18(2), 189-209.
Through a phenomenological study following van Manen's approach, family care experiences of caregivers and care receivers in the context of HIV/AIDS were studied in Mumbai, India. Data gathered through conversational interviews were analysed using the holistic and highlighting approaches. Interactions with the formal healthcare system contributed to the essential meaning of participants' experiences even though the context of care was primarily familial. These interactions included instances of violations of testing and confidentiality guidelines and refusals to provide treatment in the private and some public health centres, and the provision of instrumental and affective support by the voluntary sector. The poor quality of care at public sector hospitals serving HIV-positive individuals was also described. The paper makes recommendations for improving the interventions of the healthcare system since experiences here are linked to the overall subjective experience of caregiving and care receiving. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
de Assis, T. R., Forlin, E., Bruck, I., Antoniuk, S. A., & dos Santos, L. H. (2008). Quality of life of children with cerebral palsy treated with botulinum toxin: Are well-being measures appropriate? Arquivos de Neuro Psiquiatria, 66(3-B), 652-658.
Aim: To analyze quality of life (QOL) of children with cerebral palsy (CP) treated with botulinum toxin type A (BTXA). Method: Two QOL evaluation tools, translated into Portuguese, were used: Pediatric Outcomes Data Collection Instrument (PODCI) and Child's Caregiver Questionnaire (CCQ). Questionnaires were answered by caregivers on two occasions. Patients were divided into 3 groups: I-patients who had been previously treated with BTXA and who underwent a session of BTXA; II-patients who used BTXA for the first time; III - patients previously treated with BTXA but did not in this interval. Results: Sixty-eight patients were evaluated. In group I (n=26) the functional ability had improvement for all types of CP (p = 0.04), and tetraplegic increased interaction/communication (p = 0.02). In group II (n = 14) positioning improved (p = 0.02). Group III (n = 28) showed no change in QOL. Conclusions: PODCI and CCQ are able to capture outcome in children with CP. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
de Azevedo, G. R., & de Gouveia Santos, V. L. C. (2006). (Handicapped) Caregiver: The social representations of family members about the caregiving process. Revista Latino Americana de Enfermagem, 14(5), 770-780.
This study aimed to analyze what looking after physically disabled persons with spinal cord injury by trauma means to their caregivers and family members. The analysis of the testimony of eight caregivers, obtained in open interviews, which was methodologically based on the Social Representations Theory (SR), pointed out two main routes: coping with the suffering process in care practice and the troubled waters that permeate this suffering process. These two routes, characterized as SR Central Core and Peripheral System, respectively, consisted of themes like the way of looking at impairment, affectivity, religiosity, social-economical changes and (lack of) technical and institutional support. The results show a handicapped caregiver dedicated to look after someone who is physically disabled, considered incapacitated, and who leads his or her chores with distress and privations, based on guilt and religiosity, supported by ambiguous affection and affected by deteriorating social-economical changes and (lack of) technical and institutional support to practice an activity that implies so many peculiarities. The transformation alternatives of these caregivers' daily life principally lead to a symbiosis of disability with the patient--to live for the physically disabled--or yet, for a few, a sketch to restart personal life projects--to live with the physically disabled. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
De Schipper, J., Stolk, J., & Schuengel, C. (2006). Professional caretakers as attachment figures in day care centers for children with intellectual disability and behavior problems. Research in Developmental Disabilities, 27(2), 203-216.
Do children with intellectual disabilities (ID) show attachment behavior towards their professional caretaker? Five children, varying in chronological age, developmental age and DSM-diagnosis, were observed in a day care setting. Their attachment behavior was described by means of the Attachment Q-sort. Attachment behavior varied within and between children, irrespective of their diagnosis. This data indicates that professional caretakers are potential attachment figures for children with ID. Attachment introduces certain considerations for day care for children with ID, as well as opportunities for prevention and intervention. Implications for research and practice are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Deb, S., Hare, M., & Prior, L. (2007). Symptoms of dementia among adults with Down's syndrome: A qualitative study. Journal of Intellectual Disability Research, 51(9), 726-739.
Background: Dementia is common among adults with Down's syndrome (DS); yet the diagnosis of dementia, particularly in its early stage, can be difficult in this population. One possible reason for this may be the different clinical manifestation of dementia among people with intellectual disabilities. Aims: The aim of this study was to map out the carers' perspective of symptoms of dementia among adults with DS in order to inform the development of an informant-rated screening questionnaire. Method: Unconstrained information from carers of people with DS and dementia regarding the symptoms, particularly the early symptoms of dementia, was gathered using a qualitative methodology. Carers of 24 adults with DS and dementia were interviewed. The interviews were recorded and fully transcribed. The transcripts were then analysed using qualitative software. Results: There appeared to be many similarities in the clinical presentation of dementia in adults with DS and the non-intellectually disabled general population. Like in the non-intellectually disabled general population, forgetfulness especially, impairment of recent memory combined with a relatively intact distant memory and confusion were common, and presented early in dementia among adults with DS. However, many 'frontal lobe'- related symptoms that are usually manifested later in the process of dementia among the general population were common at an early stage of dementia among adults with DS. A general slowness including slowness in activities and speech, other language problems, loss of interest in activities, social withdrawal, balance problems, sleep problems, loss of pre-existing skills along with the emergence of emotional and behaviour problems were common among adults with DS in our study. Conclusions: This study highlights the similarities in the clinical presentation of dementia among the general population and people with DS with a particular emphasis on the earlier appearance of symptoms associated with the frontal lobe dysfunction among adults with DS. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Dennis, A., & Leach, C. (2007). Expressed emotion and burnout: The experience of staff caring for men with learning disability and psychosis in a medium secure setting. Journal of Psychiatric and Mental Health Nursing, 14(3), 267-276.
This study examines the level of expressed emotion (EE) and burnout in staff caring for people with learning disabilities on a medium secure unit. The study aims to develop a baseline measure of EE and burnout in staff on the unit to be used for future service evaluation and to underpin interventions in the developing service based on psychosocial interventions. Ten staff participated in an audiotaped interview and completed a questionnaire. The Five Minute Speech Sample and Maslach Burnout Inventory were completed. High EE was evident in 31% of responses based on critical comments and negative relationships. Expressed emotion was higher in male staff and in Health Care Support Workers. No staff met all components for high burnout, but low personal accomplishment, high emotional exhaustion and high depersonalization were evident for some staff. There is evidence of high EE and some elements of high burnout within the staff team. A significant relationship was found between the level of high EE and the depersonalization element of burnout. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
DePalma, J. A. (2007). Evidence to support medical home concept for children with special health care needs. Home Health Care Management & Practice, 19(6), 473-475.
The goal to provide every child in the United States a medical home is a challenge for the 21st century. Although this goal has not been achieved, since the 1990s many appropriate organizations have studied and supported this concept. Studies have been done to determine the impact of the medical home concept on the maintenance of health and the treatment of disease in the pediatric population. Implications for home health care providers are twofold: First is the need to understand the concept of a medical home and know whether the pediatric patient has a medical home, and second is the need to understand the status of families with children with special health care needs. Interventions need to be posed within the understanding of the emotional and nurturing environment that exists in the home. Assessing the existence of barriers to such a therapeutic environment may help the provider to more realistically plan care and recommend community-based resources that would benefit both the children and the adults. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Dick, P. T., Bennie, J., Barden, W., Daniels, C., & Young, N. L. (2004). Preference for Pediatric Telehome Care Support Following Hospitalization: A Report on Preference and Satisfaction. Telemedicine Journal and e Health, 10(Suppl2), S-53.
Infants and children hospitalized with complex conditions often face sudden and dramatic reduction in supervision and monitoring after discharge. A telehome care program was designed to improve the transition home for these children by integrating visiting home care services with outreach from pediatric nurses located in the hospital via videoconferencing. Children were recruited into a trial of telehome care for up to 6 weeks following discharge. Parental preference for this service was measured prior to and following participation. There were 10 enrollments in the pilot stage and 57 during the trial. These children had serious chronic conditions with comorbidity. The majority had a cardiac, respiratory, or otolaryngolic primary diagnosis. More than half of the respondents (59%) indicated strong preferences for telehome care prior to participation. The satisfaction for care delivered at home was no different from care in the hospital. There was no difference in satisfaction or preference observed by sociodemographic factors, diagnosis, or clinical circumstance. Parents with children who have significant health care needs have a strong preference for and satisfaction with telehome care. Additional evidence on costs and benefits may be important for promoting further development of this type of service. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Doig, J., McLennan, J., & Urichuk, L. (2009). 'Jumping through hoops': Parents' experiences with seeking respite care for children with special needs. Child: Care, Health and Development, 35(2), 234-242.
Background: Respite care may act as a means to reduce stress and fatigue in people caring for a dependent who has a disability. Despite this, a variety of barriers may exist to obtaining such services. This study explored caregivers' experiences seeking respite care for their children with special needs within a province in Canada. Methods: Caregivers were recruited from two agencies providing respite care for children with fetal alcohol spectrum disorders and other mental health and developmental difficulties. In total, 10 caregivers participated in in-depth individual interviews. A constructivist grounded theory approach was employed in the design and analysis of the data. Results: Caregivers discussed their frustrations with the process of finding and obtaining respite care, a course of action described as 'jumping through hoops'. This construct was composed of subcategories emphasizing the complexity of 'navigating the system', the bidirectional process of 'meeting the requirements' and the challenges of 'getting help'. Conclusions: The collective experiences of these caregivers point to the need for more flexibility and co-ordination of respite care services for children with special needs. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Dooley, W., Shaffer, D. R., Lance, C. E., & Williamson, G. M. (2007). Informal care can be better than adequate: Development and evaluation of the Exemplary Care Scale. Rehabilitation Psychology, 52(4), 359-369.
Purpose: To evaluate a new measure assessing excellent, or exemplary, informal care--an aspect of caregiving that has received little attention. The Exemplary Care Scale (ECS) was developed on the basis of insights from previous research with items generated by the authors in consultation with a multidisciplinary research team. Design: 310 informal caregivers and 283 of their elderly care recipients completed the ECS and other measures pertaining to quality of care and its presumed correlates. Results: Factor analyses indicated that the ECS consists of 2 factors reflecting provision of exceptional care (Provide) and respect for care recipient autonomy, wishes, and the like (Respect). The ECS factor structure was equivalent among caregivers and care recipients. Both factors were empirically distinct from existing measures of poor quality and adequate care. Each ECS factor was associated with other care-related constructs in predictable ways, implying construct validity. Conclusions: The ECS, in conjunction with existing measures, provides a more comprehensive assessment of the quality-of-care continuum and should prove useful to researchers and practitioners interested in quality of informal care provided to chronically ill or disabled people. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
dos Santos, M., Bianccardi, M., Celiberti, P., & de Oliveira Guare, R. (2009). Dental caries in cerebral palsied individuals and their caregivers' quality of life. Child: Care, Health and Development, 35(4), 475-481.
Objective: To study the correlation between caries experience in individuals with cerebral palsy (CP) and the quality of life of their primary caregivers. Materials and methods: Sixty-five non-institutionalized individuals, presenting CP, aged 2-21 years old, were evaluated for caries experience. Their respective caregivers aged 20-74 years old answered the Short Form 36 (SF-36) health survey and Independence Measure for Children. Fifty-eight non-disabled individuals (ND group), aged 2-21 years old, and their respective caregivers, aged 25-56 years old, were submitted to the same evaluation process as the CP group. Results: Primary caregivers of CP individuals exhibited significantly lower scores than the ND group in all subscales of the SF-36 health survey questionnaire: physical functioning, physical role, bodily pain, general health, vitality, social functioning, emotional role and mental health. The CP group presented significantly higher values for the Decayed,Missed and Filled (DMF-T) index than the ND group and a significant negative correlation was obtained between the SF-36 and DMF-T index. Conclusion: The results suggest that caregivers of CP individuals exhibited worse quality of life than those of the non-disabled. A negative correlation exists between caries experience of CP individuals and their caregivers' quality of life. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Dowdell, E. (2007). "Grandmothers' transitions in caregiving to grandchildren": Commentary by Dowdell. Western Journal of Nursing Research, 29(5), 634-636.
Comments on a study by T. S. Standing et al. (see record 2007-12434-010). The study discusses how the grandmothers perceive the transitions in their household composition, caregiving responsibilities, and the meanings that the transitions have for them. The findings from this study suggest implications for nursing practice. Nurses who are in adult health, geriatrics, or pediatrics, and who work at the bedside, in clinic settings, private practice, or in an advance practice role, can all interact with grandmother caregivers. Educational issues associated with caring for children can be another area of discussion, asking if there are any special needs that the grandchild may have. Assessing the health, housing, educational needs, supports services, and access of a transitioning grandmother caregiver can be key to assisting the grandmother through this experience with positive outcomes. Nursing is in an ideal position within the health care system to address the physical and mental health needs of the grandmother caregiver. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Downs, M. L. (2008). Leisure routines: Parents and children with disability sharing occupation. Journal of Occupational Science, 15(2), 105-110.
This phenomenological study describes occupations within family leisure routines that parents choose to share with their children. Nine parents caring for children who are unable to participate independently in self care and leisure pursuits due to multiple disabilities contributed to the study. Individual interviews using 10 open ended questions were completed to explore the cultural, temporal and environmental elements of these occupations that hold meaning for the parents. Both descriptive and interpretive qualitative analyses were used to ascertain patterns or themes within the narratives. The three themes that emerged reflect how sharing leisure routines created (1) opportunities for moments of happiness, (2) moments of normalcy and (3) moments of control of one's life and environment. These parental perspectives shed light on the ways shared leisure occupations sustain health and well-being for parents coping with the responsibility of caring for a child with disability. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ducharme, F., Levesque, L., Ethier, S., & Lachance, L. (2007). "Masculine" care: Caregiver experiences and perceptions of services helping elderly couples. Canadian Journal of Community Mental Health, 26(1), 143-159.
The purpose of this qualitative study was to compare two groups of older husbands in terms of spousal caregiver experience and perception of services. The first group consisted of men whose spouses suffered from cognitive deficits associated with Alzheimer disease (n = 20) and the second comprised caregivers of functionally impaired spouses (n = 23). The results show that difficulties related to caregiver experience and life changes are most often shared by both groups and are primarily psychological in nature. These difficulties relate especially to role captivity, witnessing one's spouse's personality changes, changing one's attitude towards one's spouse, and the abandonment of social activities. Many caregivers in both groups emphasized the limited access to services, particularly as regards psychosocial assistance and respite services, the lack of consideration afforded their own needs by service providers, and the absence of continuity in services. Comparative analyses conducted as a function of caregiver psychological distress revealed that husbands who received the most services were those who cared for functionally impaired spouses and who manifested a low level of psychological distress. Avenues for improving the supply of services are proposed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Duchovic, C. A., Gerkensmeyer, J. E., & Wu, J. (2009). Factors associated with parental distress. Journal of Child and Adolescent Psychiatric Nursing, 22(1), 40-48.
Problem: Associations of perceptions of social support, personal control, and child behavioral problems to distress in parents of children with mental health problems were examined. Methods: One hundred and fifty-five parents of children 2-19 years old receiving community mental health services participated. Findings: Stepwise regression analysis identified internalizing and externalizing child behaviors, perceived personal control, and tangible social support as independent predictors of parental distress. Independent predictors of objective distress included internalizing child behaviors, perceived personal control, and intangible social support. Conclusions: Internalizing and externalizing child behaviors were significantly associated with parental distress. Perceived personal control moderated the relationship between internalizing child behaviors and parental subjective distress. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Elliott, T. R., Berry, J. W., & Grant, J. S. (2009). Problem-solving training for family caregivers of women with disabilities: A randomized clinical trial. Behaviour Research and Therapy, 47(7), 548-558.
Objective: To examine the effectiveness of an individualized problem-solving intervention provided to family caregivers of women living with severe disabilities. Design: Family caregivers were randomly assigned to an education-only control group or a problem-solving training (PST) intervention group. Participants received monthly contacts for 1 year. Participants: Family caregivers (64 women, 17 men) and their care recipients (81 women with various disabilities) consented to participate. Main outcome measures: Caregivers completed the Social Problem-Solving Inventory--Revised, the Center for Epidemiological Studies Depression scale, the Satisfaction with Life scale, and a measure of health complaints at baseline and in three additional assessments throughout the year. Results: Multilevel modeling was used to conduct intent-to-treat analyses of change trajectories for each outcome variable. Caregivers who received PST reported a significant linear decrease in depression over time; no effects were observed for caregiver health or life satisfaction. Caregivers who received PST also displayed an increase in constructive problem-solving styles over the year. Conclusions: PST may benefit community-residing family caregivers of women with disabilities, and it may be effectively provided in home-based sessions that include face-to-face visits and telephone sessions. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Elliott-Desorbo, D. K. (2007). Negative life events and their relationship to psychological and medical functioning in children and adolescents with vertically-acquired HIV disease. Dissertation Abstracts International: Section B: The Sciences and Engineering, 67(8-B), 4704.
Objectives. To assess the relationship between number and type of negative life events (NLEs) and both psychological and medical functioning in HIV-positive children. An additional aim was to explore the relationship between caregiver and child reports of the child's psychological functioning. Methods. Fifty-five vertically-infected children ages 8-17 years (mean age = 12.9 years) who were enrolled in an antiretroviral treatment protocol at the National Cancer Institute (NCI) between 2001 and 2005 were eligible for participation. Children and their caregivers completed a standardized questionnaire assessing the child's levels of depression and anxiety. Caregivers completed a measure of NLEs occurring in the prior six months. Demographic data and measures of the child's medical functioning (number of hospitalizations, CD4 percentage, and viral load) were gathered from chart review. Results. The majority of children in our sample were reported to be psychologically healthy, with only 5% of children and 5% of caregivers reporting clinically significant levels of depression or anxiety. School-related NLEs were the most common type of NLE and were predictive of child-reported depressive symptoms. Total NLEs, loss-related NLEs, and one or more financial NLEs were significantly related to higher viral load and more hospitalizations. Children who experienced more than 1 NLE were more likely to have been hospitalized and to have had a higher viral load than children who experienced 1 or 0 NLEs. Both the number and type of NLEs a child experiences have important implications for their psychological and medical functioning. Future studies should explore the effects of possible mediating variables, such as medication adherence, in the relationship between life events and psychological and medical functioning among children with HIV disease. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Ellis, D. A., Naar-King, S., Cunningham, P. B., & Secord, E. (2006). Use of multisystemic therapy to improve antiretroviral adherence and health outcomes in HIV-infected pediatric patients: Evaluation of a pilot program. AIDS Patient Care and STDs, 20(2), 112-121.
The purpose of the current study was to evaluate a clinical program that used multisystemic therapy (MST) to improve regimen adherence and health outcomes among children with perinatally acquired HIV who exhibited high viral loads in the absence of viral resistance. MST is an intensive, home-based family therapy previously used for the treatment of serious antisocial behavior. Goals of the study were to assess the feasibility of the MST program and its effectiveness for improving health outcomes among children who were treated. The study was conducted by retrospective chart review. Ninety percent of children and families referred to the program accepted the referral and 95% received a full dose of treatment, suggesting high program feasibility. Nineteen children participated in the program. General HIV knowledge on the part of caregivers improved significantly over the course of treatment. Although caregiver-reported adherence did not change, viral loads were found to significantly decrease from referral to the end of MST treatment, with the mean change reflecting a greater than 1 Iog10 decrease. The majority of children maintained these improvements during the 3 months after treatment termination. Results suggest that MST holds promise as an intervention for improving health outcomes among pediatric patients with HIV. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Elwy, A. (2007). Extended family. JAMA: Journal of the American Medical Association, 297(24), 2675-2676.
A mother describes the family and medical routines involved in caring at home for Ben, a 5-year old with a rare genetic neuromuscular disorder called Schwartz-Jampel syndrome. Ben's care involves an air compressor, pulse oximeter, a night nurse once a week, tracheostomy care, school van pickup (involving a nurse, oxygen tank, walker, suction machine, catheters, etc.), and many medical specialists. It will never be easy to care for a child with special health care needs, but it can be easier with reinforcement from an extended family. Parenting Ben is possible through the personal connections, good conversations, accessibility, and acknowledged respect among medical and health personnel described as extended family members. "We know that if we falter in our best efforts to care for him, there are highly skilled, experienced, and exceptionally dedicated health care professionals, our extended family, who will help us when we need it most." (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Emlet, C. A. (2004). HIV/AIDS and Aging: A Diverse Population of Vulnerable Older Adults. Journal of Human Behavior in the Social Environment, 9(4), 45-63.
Older adults, those age 50 and over, have continually represented approximately 10-15% of all cases of AIDS reported to the Centers for Disease Control and Prevention. In addition to those infected with HIV, many older adult caregivers are affected by HIV/AIDS. Despite these figures, social workers and other providers of health care are often unaware of the needs of these growing populations. Older adults with HIV/AIDS as well as those affected by the disease represent diverse backgrounds in gender, ethnicity, sexual orientation, and exposure to HIV. Additionally, older adults present special issues and challenges not always present in younger individuals with HIV/AIDS. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Engler, P., Anderson, B., Herman, D., Bishop, D., Miller, I., Pirraglia, P., et al. (2006). Coping and Burden Among Informal HIV Caregivers. Psychosomatic Medicine, 68(6), 985-992.
Objective: The aim of this study was to examine the role of coping on caregiver burden among a heterogeneous group of caregivers of persons living with HIV during the era of highly active antiretroviral therapy. Methods: Burden and coping were examined among 176 caregivers of persons living with HIV. Three styles of coping were examined using a 7-item scale: active-approach (task), blame-withdrawal (emotion), and distancing (avoidance). Results: A total of 58.8% of the caregivers were women. They had a mean age of 42 years; 61.9% cohabited with the persons living with HIV who had a mean CD4 count of 401. All three styles of coping were significantly positively correlated with caregiver burden. After controlling for demographic variables and caregiver depression, active-approach coping and distancing coping independently moderated the relationship between perceived severity of HIV-related symptoms (stress) and caregiver burden; however, some caregivers experienced burden even at low levels of stress. Conclusions: These results indicate that in the era of highly active antiretroviral therapy, coping mitigates the effect of stress on burden. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
English, C. L., & Anderson, C. M. (2006). Evaluation of the Treatment Utility of the Analog Functional Analysis and the Structured Descriptive Assessment. Journal of Positive Behavior Interventions, 8(4), 212-229.
Direct methods of functional assessment--through which information is gathered by observing environment-behavior relations--vary with the degree to which environmental events are manipulated. Unstructured (ABC) assessments involve observing the occurrence of problem behavior without altering environmental events in any way. At the other extreme, the analog functional analysis is conducted by systematically manipulating predefined environmental events, usually in a controlled environment. Because one primary goal of functional assessment is to develop efficacious interventions based on hypotheses gleaned from the assessment, research evaluating the treatment utility of methods of functional assessment is warranted. Previous research comparing results obtained from different methods of assessment has yielded mixed results. The purpose of this study was not only to compare hypotheses derived from different methods of direct functional assessment (caregiver-conducted analogs, experimenter-conducted analogs, the structured descriptive assessment [SDA]) but also to systematically evaluate interventions derived from each assessment. Three children diagnosed with developmental disabilities participated, along with their caregivers. For all three participants, different patterns of responding were observed across all three assessments. Furthermore, for all participants, the interventions based on the results of the SDA were more effective than interventions based on the analog functional analysis. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Eriksen, H. R., Ihlebaek, C., Jansen, J. P., & Burdorf, A. (2006). The Relations Between Psychosocial Factors at Work and Health Status Among Workers in Home Care Organizations. International Journal of Behavioral Medicine, 13(3), 183-192.
A considerable proportion of sickness absence and disability pension is caused by subjective health complaints, especially low back pain (LBP). In recent years focus has been on psychosocial characteristics of work as potential risk factors. The aim of this study is to examine the relations between psychosocial work aspects and subjective health complaints, LBP, and need for recovery. A total of 779 employees working in home care participated in a cross-sectional study. Higher psychological demands were associated with subjective health complaints and need for recovery. However, decision authority, skill discretion, and the 2 aspects of social support did not seem to be important factors. Higher psychological demands do not seem to be associated with severity of LBP, but does show an association with sick leave. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Essa, E. L., Bennett, P. R., Burnham, M. M., Martin, S. S., Bingham, A., & Allred, K. (2008). Do variables associated with quality child care programs predict the inclusion of children with disabilities? Topics in Early Childhood Special Education, 28(3), 171-180.
Little research has been carried out on the inclusion of children with special needs in child care. The purpose of this study was to determine what variables predict the inclusion of children with disabilities in centers and home care. Logistic regression was used to examine the association of several indicators of quality child care and inclusion. For directors, teachers, and home care providers, the strongest predictor was having taken a course on working with children with disabilities. Larger centers and groups were more likely to include children with special needs. The somewhat surprising results and implications are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Everhart, R. S., Fiese, B. H., & Smyth, J. M. (2008). A cumulative risk model predicting caregiver quality of life in pediatric asthma. Journal of Pediatric Psychology, 33(8), 809-818.
Objective: To examine the relationship between a cumulative risk model and caregiver quality of life (QOL) in pediatric asthma and determine whether caregiver QOL is predicted by a linear or quadratic model of cumulative risk. Methods: One hundred and ninety-three families of children between the ages of 5 and 12 years with mild to severe asthma completed a background questionnaire and measures of QOL, asthma severity, family burden, and family stress. A cumulative risk model based on risk factors from these measures was calculated for each caregiver. Results: The cumulative risk model significantly predicted caregiver QOL as a quadratic function. Caregivers with numerous risk factors experienced a dramatic worsening of QOL. Conclusions: Findings suggest that caregiver QOL is best predicted by the interaction and not the summation of these factors. Interventions focused on one area of family risk may be effective in reducing poor QOL in caregivers of children with asthma. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Farge, S. (2006). Clinical recommendations for the assessment and treatment of primary caregivers and pediatric cancer patients. Dissertation Abstracts International: Section B: The Sciences and Engineering, 67(1-B), 540.
The literature on pediatric cancer calls for clinical interventions to focus on improving relationships within the family during the 4 phases of illness (Kazak & Nachman, 1991; Sherman & Simonton, 2001). Within the neuroscience literature attachment is recognized as a biological regulator of the individual's psychological and physiological emotions that are hard wired in the brain and develop out of the ongoing reciprocal interactions that occur within the parent-child dyad. Attachment theory holds that the parent-child relationship serves as a foundation upon which a child learns to adapt and interact with its environment. The parent's ability to accurately attune and respond to a child's signals has far-reaching implications on the child's ability to cope with stressful situations. The parent's early attachment experiences largely influence the parent's ability to attune to the child's needs, making the parent's attachment style an intergenerational transmission process. The current review of the literature examined the potential for a relationship between parental attachment style and the pediatric cancer patient's coping behavior during the 4 phases of pediatric cancer. Observations made in the review of the existing literature on the pediatric cancer population identifies at-risk primary caregiver-pediatric cancer patient dyads, and makes treatment recommendations to clinicians working with the parent-pediatric cancer patient dyad during the phases of illness. Results from the relevant literature on pediatric cancer suggest that parental security of attachment serves as a protective mechanism for the child and the family's adaptation to the diagnosis and treatment of pediatric cancer. The review of the literature observes that there is the potential for a positive association between characteristics of parents and children with greater security of attachment, lower psychological distress and better psychological adjustment to the diagnosis and treatment of pediatric cancer. In contrast, characteristics commonly associated with insecure attachment were used to describe parents and children who experienced greater degrees of psychological distress and poorer psychological adjustment. Treatment recommendations derived out of the literature provide clinicians working with the pediatric cancer population attachment-based clinical interventions that could potentially strengthen the security of attachment within the primary caregiver-pediatric cancer patient relationship during the phases of illness. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Farley, J. J., Montepiedra, G., Storm, D., Sirois, P. A., Malee, K., Garvie, P., et al. (2008). Assessment of adherence to antiretroviral therapy in perinatally HIV-infected children and youth using self-report measures and pill count. Journal of Developmental and Behavioral Pediatrics, 29(5), 377-384.
Background: Parent/caregiver or child/youth self-report and pill counts are commonly used methods for assessing adherence to antiretroviral therapy among children and youth with HIV. The purpose of this study was to compare these different methods with one another and with viral load. Methods: Randomly selected parent/caregiver and child/youth dyads were interviewed using several adherence self-report measures and an announced pill count was performed. Adherence assessment methods were compared with one another and their relative validity was assessed by comparison with the child's viral load close to the time of the interview or pill count, adjusting for primary caregiver, child age, and child disclosure of the diagnosis. Results: There were 151 evaluable participants. Adherence rate by pill count was >=90% in 52% of participants, was significantly associated with log(RNA) viral load (p = .032), and had significant agreement with viral load <400 copies/mL. However, pill count data were incomplete for 26% of participants. With similar proportions considered adherent, a variety of self-report adherence assessment methods also were associated with log(RNA) viral load including: "no dose missed within the past 1 month" (p = .054 child/youth interview, p = .004 parent/caregiver interview), and no barrier to adherence identified (p = .085 child/youth interview, p = .015 parent/caregiver interview). Within-rater and inter-rater agreement was high among self-report methods. Three day recall of missed doses was not associated with viral load. Conclusion: Findings demonstrate the validity of adherence assessment strategies that allow the parent/caregiver or child/youth to report on adherence over a longer period of time and to identify adherence barriers. Adherence assessed by announced pill count was robustly associated with viral load, but there was incomplete data for many participants. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Farrington, D. (2004). Parental perception of marital and family functioning following pediatric traumatic brain injury: A multiple case study approach. Dissertation Abstracts International: Section B: The Sciences and Engineering, 64(8-B), 4034.
The aim of this multiple case study was to uncover patterns and trends that may be associated with the behavioral and emotional problems of traumatically brain injured children in the following areas: (a) family history, (b) family structure, (c) family environment, and (d) marital relationship. These areas were assessed using the following measures: (a) McMaster Family Assessment Device (FAD), (b) Family Environment Scale (FES), (c) Ways of Coping Checklist-Revised (WCCL-R), (d) Dyadic Adjustment Scale (DAS), (e) Conflict Tactics Scale (CTS), (f) Child Behavior Checklist (CBCL), (g) semi-structured interview, and (h) background questionnaire. The major findings of this descriptive study suggest patterns and trends in the following areas: (a) family roles or clearly and equitably assigned patterns of behavior for handling family tasks, (b) marital consensus, (c) caregiver stress/burden, (d) paternal involvement or time spent with TBI children, (e) recreational activities, (f) family affective climate, (g) family cohesion, and (h) consideration of marital dissolution. The study also found that the parents of the brain injured children placed a high value on interaction and accurate information from the medical profession, as well as understanding and sensitivity from classroom teachers, although most did not receive such services. Based on the above trends, directions for future research and clinical implications are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Fast, J., Eales, J., & Keating, N. (2008). Final commentary for CJA supplemental issue: The hidden costs of care. Canadian Journal on Aging, 27(1), 3-5.
In early 2008, the CJA published a special issue (CJA 26 Supplement 1, 2007) based on the Hidden Costs/Invisible Contributions (HCIC) research program, funded under the Social Sciences and Humanities Research Council (SSHRC) Major Collaborative Research Initiatives (MCRI). The overall purpose of the HCIC program is to create a deeper understanding of the place of older adults and adults with disabilities. In Canada, these groups of adults are often characterized as dependent--costly because of the care they require and because of their lack of societal contributions. Throughout this program, we have interrogated these notions, placing costs and contributions in social, political, historical, and cultural contexts that make explicit hidden assumptions regarding the "dependencies" of older adults and adults with disabilities. In the final four papers, authors address the advancement of our conceptual and methodological understanding of family/friend caregiving by moving beyond a focus on individual caregivers toward enhanced understanding of the social and cultural contexts of care. Presented articles are briefly detailed. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Fawcett, T. N., Baggaley, S. E., Wu, C., Whyte, D. A., & Martinson, I. M. (2005). Parental responses to health care services for children with chronic conditions and their families: A comparison between Hong Kong and Scotland. Journal of Child Health Care, 9(1), 8-19.
Families caring for a chronically-ill child are known to experience a significant degree of stress that often is not fully understood by health professionals. The purpose of this study was to examine, cross culturally, the experience of families caring for children with chronic conditions both in terms of the impact on their lives and the nature of the support received. The responsibility of caring for a child with a chronic condition had considerable impact on family life in both groups, with the disturbance to harmony possibly being felt more keenly in the Hong Kong group. Effective communication with parents was seen in both countries as key for effective practice. Expectations of health services differed between cultures. Implications can be drawn for the design of future health services addressing the specific health needs of families with children with chronic illness. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Feigel, C. A. (2004). Stress, coping, and medication adherence among HIV-infected mothers (immune deficiency). Dissertation Abstracts International Section A: Humanities and Social Sciences, 65(5-A), 1675.
Women are the fastest growing group of individuals to be infected with HIV in the United States, with the majority of HIV infections occurring during childbearing years. Research indicates that HIV+ mothers are often the sole caregivers of multiple children, some of whom are also HIV+. The study of caregiving and its associated burden is critical given that HIV infected mothers face a heightened risk for mental and physical problems due to the unique parenting challenges they must face. Moreover, recent studies have shown behavioral and emotional problems among noninfected children of HIV+ mothers. This finding is important because a relationship has been consistently demonstrated between behavioral problems in the recipient of care and negative mental health consequences for caregivers. Inconsistent adherence to medication regimes such as HAART is critical since it can result in resistance and drug failure. Further, research indicates that HIV infected women are at high risk for depression and anxiety. Conversely, other studies have indicated several positive events that facilitate coping with HIV among women including posttraumatic growth (PTG) and optimism. This study explores stress (caregiver burden, anxiety, depression), and coping (optimism, PTG, social support) by HIV+ mothers in comparison with HIV- mothers; and examines whether these factors predict medication adherence. The sample included 39 HIV+ mothers, 10 HIV+ women, and 35 HIV- mothers. All HIV+ participants were drawn from the Women's Interagency HIV Study in Southern California. Results indicate that HIV+ mothers experience significantly greater caregiver burden (CGB) and depression than HIV- mothers. HIV+ mothers also report greater optimism and less social support than HIV- mothers. Sixty-one percent of HIV+ women report PTG. Prediction models of adherence were non-significant. However, limited statistical power, due to the small sample size, precluded the ability to control for possible confounds including several sociodemographic variables. Findings of significant CGB and depression highlight areas of stress for HIV+ women and inform treatment planning. Reported optimism and PTG by HIV+ women is encouraging because these are inner coping resources that are readily accessible, in comparison with social support, a resource that is restricted by factors including social stigma, and cultural barriers. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Feldman, M., McDonald, L., Serbin, L., Stack, D., Secco, M., & Yu, C. (2007). Predictors of depressive symptoms in primary caregivers of young children with or at risk for developmental delay. Journal of Intellectual Disability Research, 51(8), 606-619.
Background: Despite extensive research with families raising children with or at risk for developmental delay (DD), it is not clear whether primary caregivers of these children are at increased risk for depressive symptoms. Discrepant findings in the literature may be owing to heterogeneity of child problems. More research is needed on child, parent and family variables that may increase risk for, or resilience to, caregiver depressive symptoms. Some studies have found that parental resources (e.g. social support and coping strategies) may buffer the effects of parental distress, while other studies have highlighted the role of parental self-efficacy. Methods: We examined Beck Depression Inventory (BDI) scores in 178 primary caregivers (mainly biological mothers) who had 2-year-old children with or at risk for DD owing to: (a) low birthweight, prematurity or multiple birth (n = 58), (b) other known reasons (e.g. Down syndrome, spina bifida) (n = 67), or (c) unknown reasons (n = 69). Results: We found that 20% (n = 35) of the caregivers scored above the BDI clinical cut-off for depression. Analysis of variance revealed that caregivers with elevated BDI scores had higher child behaviour problem and escape-avoidance coping scores, and lower social support and parent selfefficacy, compared with caregivers without depressive symptoms. Caregivers with children who had DD for unknown reasons had higher BDI scores than caregivers of the other two groups of children. Regression analyses showed that child behaviour problems, escape-avoidance coping strategies and social support predicted caregiver BDI scores, but caregiver self-efficacy only did so when entered independently of social support. Only social support mediated and (marginally) moderated the relationship between child behaviour problems and caregiver depressive symptoms. Conclusions: These findings suggest that early intervention programmes should carefully consider the interaction of child characteristics (e.g. Diagnosis and behaviour problems), caregiver resources (e.g. coping strategies and social support), and parental mental health and mood when planning and tailoring services for families of children with or at risk for DD. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Fischer, E., & Silverman, A. (2007). Behavioral conceptualization, assessment, and treatment of pediatric feeding disorders. Seminars in Speech & Language, 28(3), 223-231.
Families of children with feeding disorders frequently present to primary care settings. Although providers are often knowledgeable about medical and developmental etiologies, behavioral etiologies may go unidentified and untreated. In this article, the authors review a biobehavioral approach for the assessment and treatment of feeding disorders. First, factors that affect the development of feeding behaviors are described including sensitive developmental periods for acquiring feeding skills and the effects of interpersonal relationships on feeding. Second, behavioral assessment and conceptualization strategies are discussed including the use of feeding questionnaires, caregiver interviews, and the use of feeding observations. Third, behavioral treatment strategies are described including the uses of feeding structure, manipulation of hunger, contingency management, shaping, and parent training. Finally, consideration of various behavioral treatment options are considered including the integration of psychology as part of an interdisciplinary team and the use of intensive behavioral treatment protocols that include inpatient behavioral programs. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Fisher, J. E., Drossel, C., Yury, C., & Cherup, S. (2007). A contextual model of restraint-free care for persons with dementia. Sturmey, Peter, 211-237.
(create) The term dementia is used to describe a collection of symptoms that are caused by pathological changes in neurological function. Over the course of a degenerative dementia, severe losses occur across the person's entire repertoire including severe impairment in memory and new learning, verbal abilities, and motor functioning. There is currently no effective treatment for stopping or reversing the impairment caused by degenerative forms of dementia. Dementia is an age-associated condition. Topics discussed in this chapter include trends in the care of persons with dementia, including medical models and developments from observational research; functional analytic model of dementia; risk of excess disability; caregiving behavior as context; functional assessment and analysis; ruling out physiological factors; and functional analytic interventions, including preventing excess disability, design of interventions, and monitoring. A case study concludes the chapter. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Fite, P. J., Stoppelbein, L., & Greening, L. (2009). Proactive and reactive aggression in a child psychiatric inpatient population: Relations to psychopathic characteristics. Criminal Justice and Behavior, 36(5), 481-493.
The study examined relations between caregiver- and child-reported proactive and reactive aggression and psychopathic characteristics (callous/unemotional traits, narcissism, and impulsivity) in a sample of 105 children (69% male) ranging from 6 to 12 years of age (M = 9.61, SD = 1.83) who were admitted to a child psychiatric inpatient facility. Caregiver reports of aggression suggested that proactive and reactive aggression were similarly related to callous/unemotional traits and narcissism but that only reactive aggression was associated with impulsivity. In contrast, child reports of proactive aggression, but not reactive aggression, were associated with all three psychopathic characteristics. Theoretical and clinical implications are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Flores, R. L. (2006). A Life Span Approach to Understanding Learning Disabilities: A Guide for Parents and Caregivers. PsycCRITIQUES, 51(46), No Pagination Specified.
Reviews the book, You and Your Child: Making Sense of Learning Disabilities by Sheila Hollins and Martin Hollins (see record 2005-16435-000). This is the third book in the You and Your Child series of books on child development. Although the authors have published for both the academic and the clinical community, this book's purpose is to provide parents and caregivers with knowledge concerning their child's development. Thus, its target audience is parents facing a specific problem who require relevant and up-to-date information, as well as those who are interested in learning more about human development. The intent of You and Your Child: Making Sense of Disabilities is to provide a life span perspective describing the stages of development from infancy through adulthood within the domains of cognitive, social, and emotional development for the child who is disabled. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Foo, J. Y. A., & Lim, C. S. (2006). Development of a Home Screening System for Pediatric Respiratory Sleep Studies. Telemedicine and e Health, 12(6), 698-701.
To develop a simple and portable home screening monitor for sleep-disordered breathing (SDB) in children. In such a system, identifying the respiratory events and occurrences of motional artifacts are two essential elements that can affect the accuracy of the study. Moreover, such a system needs to be easy to set up and user friendly. The proposed system includes the following: electrocardiogram, pulse oximeter, microcontroller-based computation device, and a tri-axial accelerometer. Three physiologic parameters derived with this device were used to identify central (CE) and obstructive (OE) respiratory events. The criteria used were based on documented evidence and compared against corresponding standard polysomnographic scorings. In addition, a module was constructed in conjunction with a RS232 chip to transmit the recorded data to a personal computer. The accelerometer was used as a motion artifact detector. Detectable signals were acquired from the accelerometer when artifacts were induced on the photoplethysmography by motions in three regulated test activities lasting at least 30 seconds each. In classifying respiratory events, the combined use of oxygen saturation, heart rate, and pulse transit time to produce a complex classification (logic OR) showed promise. For OE, the sensitivity and specificity were 0.828 and 0.859, respectively. For CE, these values were 0.868 and 0.762, respectively. The proposed system potentially fulfils the criterion as a home screening tool and can form an indispensable addition to the SDB investigation in the pediatric population. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Forde, H., Lane, H., McCloskey, D., McManus, V., & Tierney, E. (2004). Link Family Support--An evaluation of an in-home support service. Journal of Psychiatric and Mental Health Nursing, 11(6), 698-704.
A significant body of research has shown that parents who have a child or a dependent adult with a disability experience significant and persistent levels of stress. One of the recognized strategies for coping includes the provision of in-home practical support. Enable Ireland provides a range of services for children and adults with a physical disability. The present study explored home support services with a sample of 16 families of service users of Enable Ireland Cork. Practical support was deemed to be whatever support or intervention requested by the parent of the child/dependant adult which afforded the service user the opportunity to engage in social/recreational opportunities and that gave the parent free time. Sixteen members of the chosen families were interviewed (15 mothers and one father) using a semi-structured interview schedule and a standardized stress measure before and after the introduction of Link Family Support (LFS). LFS was put in place for a period of 12 months, tailored to the families and service users' individual needs. Although levels of stress continued to be high and scores on the Parenting Stress Index (PSI) did not show a statistically significant reduction after the programme, reported stress levels had improved. Parents reported LFS to be very helpful in reducing perceived stress and improving family's quality of life through providing free time and access to leisure and recreation facilities. This study provided limited but clear evidence of the need for regular, flexible, in-home support for families with children and dependent adults with a disability. LFS provided a personal, regular and effective means of meeting this need as the findings of this study demonstrated. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Fowler, E. A., Becker, D. B., Pilgram, T. K., Noetzel, M., Epstein, J., & Kane, A. A. (2008). Neurologic findings in infants with deformational plagiocephaly. Journal of Child Neurology, 23(7), 742-747.
This study evaluates the neurologic profiles of infants with deformational plagiocephaly. Forty-nine infants with deformational plagiocephaly between the ages of 4 and 13 months (mean age, 8.1 months) are evaluated, along with 50 age-matched control subjects (mean age, 8.1 months). A modified version of the Hammersmith infant neurologic assessment was performed on each infant. A caregiver completed a questionnaire regarding the infant's prematurity, development, and health to date. Results are analyzed using t test. There is a statistically significant difference in overall neurologic assessment scores of infants with deformational plagiocephaly vs their healthy peers (P = .002). This difference is predominately in tone, whereby infants with deformational plagiocephaly have significantly more abnormal tone than nonplagiocephalic infants (P = .003). This abnormality is not one of decreased tone but one of variable tone, deflecting abnormally high and low tone. Infants with deformational plagiocephaly are more likely to have altered tone but not exclusively decreased tone. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Freedman, V. A., Aykan, H., Wolf, D. A., & Marcotte, J. E. (2004). Disability and Home Care Dynamics Among Older Unmarried Americans. The Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 1(1), S25-S33.
We describe how paid and unpaid home care hours received by older unmarried Americans change in response to disability dynamics. We test whether responses to disability declines and improvements are symmetric; that is, we test whether reductions in care hours that are due to disability improvements are of similar magnitude to increases in care hours that are due to disability declines. Using a national sample of older unmarried Americans, we examine changes in total hours, paid hours, and unpaid hours of care in response to declines and improvements in personal care (activities of daily living, or ADLs) and routine care (instrumental ADLs, or IADLs) disability. We model changes in the total hours of care received in the past month and jointly model changes in unpaid and paid hours, using Tobit models. Changes in the total hours of care received respond to both increases and decreases in the count of ADL limitations and appear close to symmetric. In contrast, responses to IADL disability dynamics appear to be far less symmetric. The same general pattern is found for unpaid and paid care, and for Medicaid-funded home care. Disability and care are not static constructs in old age. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Freeman, K. A., Walker, M., & Kaufman, J. (2007). Psychometric properties of the Questions About Behavioral Function Scale in a child sample. American Journal on Mental Retardation, 112(2), 122-129.
The Questions About Behavioral Function (QABF) scale is a caregiver report form designed to identify behavioral functions important in maintaining aberrant behavior. In the present investigation, we evaluated the psychometric properties of the QABF with an outpatient sample of 91 children with developmental delays and significant aberrant behavior (e.g., physical aggression, self-injury, and property destruction). One caregiver completed the QABF and Motivation Assessment Scale on aberrant behavior identified in a preappointment interview for each child. Results indicate that the QABF exhibited fair to good internal consistency, strong corrected item-total correlations, acceptable intersubscale correlations, and convergent validity with the Motivation Assessment Scale. Implications of the results, potential utility of caregiver report instruments, study limitations, and future directions are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Freidin, B., & Timmermans, S. (2008). Complementary and alternative medicine for children's Asthma: Satisfaction, care provider responsiveness, and networks of care. Qualitative Health Research, 18(1), 43-55.
We explain why some caretakers opt for alternative medicine for the treatment of children's asthma whereas others do not. In the past 15 years, asthma care has been standardized, with clinical practice guidelines centered on advanced pharmacological regimes. Clinicians argue that with proper biomedical treatment and environmental control, asthma should be a manageable chronic disease. Yet many patients forego available pharmacological treatments for alternative medicine or complement prescribed drugs with unconventional treatments. On the basis of open-ended, in-depth qualitative interviews with 50 mothers of children with asthma, we argue that the experience with biomedical treatments, social influence in mother's network of care, concerns about adverse and long-term effects, health care providers' responsiveness to such concerns, and familiarity with alternative treatments explain why some families rely on alternative medicine and others do not. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Fromage, B., & Goutany, E. (2007). Old caregiver's burn out. European Review of Applied Psychology/Revue Europeenne de Psychologie Appliquee, 57(3), 145-150.
This study deals with old significant other who cares for his polyarthritic spouse and has to be faced with his ageing. We assume that caregiver's assessment of his spouse's pain involves psychological consequences (daily life, locus of control, distress). Moreover, we suppose that caregiver's distress influences support given to the patient. These measures are made with the Multidimensional Pain Inventory Significant Other. Thanks to the caregivers' assessment of spouses' pain experience, an average is made in order to form two groups and to yield the assessment's effect on each measure, in comparing the results with statistic tests. A correlation between distress and support is made. The outcomes of a 22 subjects sample show that the anxiest caregivers bring less support than the others (alpha = -0,5) and chronic pain reinforces caregivers' anxiety and cause meaning changes in their daily life, in so far as chronic pain is perceived by caregivers as very disabled. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Gallagher, S., Phillips, A. C., Drayson, M. T., & Carroll, D. (2009). Caregiving for children with developmental disabilities is associated with a poor antibody response to influenza vaccination. Psychosomatic Medicine, 71(3), 341-344.
Objective: Older spousal caregivers of dementia patients have been found to show a relatively poor antibody response to medical vaccination. In the present case control study in a different caregiving environment, we sought to compare antibody responses to vaccination in parents of children with disabilities and parents of typically developing children. Methods: At baseline assessment, 32 parents of children with developmental disabilities and 29 parents of typically developing children completed standard measures of perceived stress and child problem behaviors. They also provided a blood sample and were then vaccinated with the thymus-dependent trivalent influenza vaccine. Further blood samples were taken at 1- and 6-month follow-ups. Results: Relative to parents of typically developing children (mean titer = 458, standard deviation (SD) = 155.7 at 1 month follow-up and mean titer = 265, SD = 483.0 at 6-month follow-up), caregivers (mean titer = 219, SD = 528.4 at 1-month follow-up and 86, SD = 55.0 at 6-month follow-up) mounted a poorer antibody response than controls to the B/Malaysia strain of the vaccine. Conclusion: The negative impact of caregiving on antibody response to vaccination would not seem to be restricted to older spousal caregivers, but is also evident in younger parents caring for children with developmental disabilities. The behavioral characteristics of the care recipients may be a determinant of whether or not antibody response to vaccination is compromised. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Gallagher, S., Phillips, A. C., Oliver, C., & Carroll, D. (2008). Predictors of psychological morbidity in parents of children with intellectual disabilities. Journal of Pediatric Psychology, 33(10), 1129-1136.
Objective: This study examined predictors of excess psychological morbidity in parents of children with intellectual disabilities. Methods: Thirty-two parents of children with intellectual disabilities and 29 parents of typically developing children completed the Hospital Depression and Anxiety Scale, and measures of social support, child problem behaviors, sleep quality, and perceived caregiver burden. Results: Parents of children with intellectual disabilities registered high depression and anxiety scores, and the majority met the criteria for possible clinical depression and/or anxiety. The strongest predictor of psychological morbidity was caregiver burden. Analyses of its component dimensions indicated that feelings of guilt held the greatest consequence for depression and anxiety. Conclusions: Caregiver burden, in general, and its guilt component, in particular, predicted symptoms of depression and anxiety in parents of children with intellectual disabilities. Assisting such parents to resolve their feelings of guilt should benefit their psychological status. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ganesalingam, K., Yeates, K. O., Ginn, M. S., Taylor, H., Dietrich, A., Nuss, K., et al. (2008). Family burden and parental distress following mild traumatic brain injury in children and its relationship to post-concussive symptoms. Journal of Pediatric Psychology, 33(6), 621-629.
Objective: To examine the relationship of mild traumatic brain injuries (TBI) and post-concussive symptoms (PCS) to post injury family burden and parental distress, using data from a prospective, longitudinal study. Methods: Participants included 71 children with mild TBI with loss of consciousness (LOC), 110 with mild TBI without LOC, and 97 controls with orthopedic injuries not involving the head (OI), and their parents. Shortly after injury, parents and children completed a PCS interview and questionnaire, and parents rated premorbid family functioning. Parents also rated family burden and parental distress shortly after injury and at 3 months post injury. Results: Mild TBI with LOC was associated with greater family burden at 3 months than OI, independent of socioeconomic status and premorbid family functioning. Higher PCS shortly after injury was related to higher ratings of family burden and distress at 3 months. Conclusions: Mild TBI are associated with family burden and distress more than mild injuries not involving the head, although PCS may influence post injury family burden and distress more than the injury per se. Clinical implications of the current findings are noted in the Discussion section. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Gerkensmeyer, J. E., Perkins, S. M., Scott, E. L., & Wu, J. (2008). Depressive symptoms among primary caregivers of children with mental health needs: Mediating and moderating variables. Archives of Psychiatric Nursing, 22(3), 135-146.
The prevalence and severity of depressive symptoms among 155 primary caregivers of children with mental health problems were examined along with variables that mediated or moderated the association of child behavior problems with caregivers' depressive symptoms. Forty percent of participants scored 22 or higher on the Center for Epidemiological Studies Depression Scale, indicating that they might have a serious depression. Perceived personal control, subjective distress, and role disruption mediated the association between internalizing child behavior problems and depressive symptoms. Tangible social support moderated the association between internalizing behavior problems and depressive symptoms. Intangible social support moderated the association between externalizing behavior problems and depressive symptoms. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Gordon, A. M., Schneider, J. A., Chinnan, A., & Charles, J. R. (2007). Efficacy of a hand--arm bimanual intensive therapy (HABIT) in children with hemiplegic cerebral palsy: A randomized control trial. Developmental Medicine & Child Neurology, 49(11), 830-838.
Children with hemiplegic cerebral palsy (CP) have impairments in bimanual coordination above and beyond their unilateral impairments. Recently we developed hand-arm bimanual intensive therapy (HABIT), using the principles of motor learning, and neuroplasticity, to address these bimanual impairments. A single-blinded randomized control study of HABIT was performed to examine its efficacy in children with hemiplegic CP with mild to moderate hand involvement. Twenty children (age range 3 y 6 mo-15 y 6 mo) were randomized to either an intervention (n = 10: seven males, three females; mean age 8 y 7 mo, SD 4 y) or a delayed treatment control group (n = 10: seven males, three females; mean age 6 y 10 mo, SD 2 y 4 mo). Children were engaged in play and functional activities that provided structured bimanual practice 6 hours per day for 10 days. Each child was evaluated immediately before and after the intervention, and again at 1-month post-intervention. Children in the intervention group demonstrated improved scores on the Assisting Hand Assessment, increased involved extremity use measured using accelerometry and a caregiver survey, bimanual items of the Bruininks-Oseretsky Test of Motor Proficiency, and the simultaneity of completing a draw-opening task with two hands (p < 0.05 in all cases). The results suggest that for this carefully selected subgroup of children with hemiplegic CP, HABIT appears to be efficacious in improving bimanual hand use. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Greenberg, N., Boydell, K. M., & Volpe, T. (2006). Pediatric Telepsychiatry in Ontario: Caregiver and Service Provider Perspectives. The Journal of Behavioral Health Services & Research, 33(1), 105-111.
Families in rural areas face significant geographic and economic obstacles to obtaining pediatric mental health services. Telepsychiatry promises the possibility of extending specialized expertise into areas that have no resident psychiatrists. In this study, user perspectives and experiences of a pediatric telepsychiatry program serving rural communities in Ontario, Canada, were explored. Qualitative, exploratory methods were utilized because of the complex nature of mental health services needs and provision in rural communities. Focus groups with rural mental health service providers and interviews with family caregivers of children receiving a telepsychiatry consultation were conducted. The purpose of this research was to evaluate the benefits and limitations of providing pediatric psychiatric services via video-technology to inform future program development and health policy. Whereas participants in the study indicated that their experiences with the telepsychiatry service had been positive, the need for additional local services to support treatment recommendations was emphasized. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Greenspan, S. I., & Wieder, S. (2006). Infant and early childhood mental health: A comprehensive development approach to assessment and intervention. 377.
(create) The aim of this book is to construct a truly comprehensive developmental approach to intervention, one that takes into account all aspects of the infant's life, including individual differences in processing experience; developmental abilities; interactive patterns; and caregiver, family, cultural, and community dynamics. With ongoing clinical experience, the authors continue to refine this comprehensive developmental approach for children with severe developmental challenges and mental health problems (Greenspan 1981; Greenspan and Shanker 2004; Greenspan and Wieder 1999; Greenspan et al. 1987). This approach includes not only children with emotional and behavioral difficulties but also children with autism spectrum disorders as well as other disorders of relating and communicating, including severe language problems, severe regulatory problems. Down syndrome, fragile X syndrome, fetal alcohol syndrome, cerebral palsy, and even severe forms of attention deficit/hyperactivity disorder. We are now in a position to truly redefine how we work with these children. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Greer, A. J., Gulotta, C. S., Masler, E. A., & Laud, R. B. (2008). Caregiver stress and outcomes of children with pediatric feeding disorders treated in an intensive interdisciplinary program. Journal of Pediatric Psychology, 33(6), 612-620.
Objective: This study investigated the impact of an intensive interdisciplinary feeding program on caregiver stress and child outcomes of children with feeding disorders across three categories. Methods: Children were categorized into either tube dependent, liquid dependent, or food selective groups. Outcomes for caregiver stress levels, child mealtime behaviors, weight, and calories were examined at admission and discharge for 121 children. Repeated measures ANOVAs were used to examine differences pre- and post-treatment and across feeding categories. Results: Caregiver stress, child mealtime behaviors, weight, and caloric intake improved significantly following treatment in the intensive feeding program, regardless of category placement. Conclusions: Few studies have examined the impact of an intensive interdisciplinary approach on caregiver stress, as well as on child outcome variables with such a diverse population. This study provides support that regardless of a child's medical and feeding history, an intensive interdisciplinary approach significantly improves caregiver stress and child outcomes. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Grove, N. (2007). Exploring the absence of high points in story reminiscence with carers of people with profound disabilities. Journal of Policy and Practice in Intellectual Disabilities, 4(4), 252-260.
Narrative, central to the interactions that take place within families, is a way that experiences are recalled and shared, family relationships are actualized, and individual and group identities are exemplified and constructed. People with profound and multiple disabilities, who function at a preverbal level of development, are highly dependent on others to provide narrative reconstructions of key events in their lives. To examine how carers relate such experiences of their offspring with profound intellectual disabilities, data were collected and analyzed from a set of interviews with parents, carers, and friends of members of a storytelling group. Structural analysis of their narratives showed that accounts of events were often not fully elaborated and lacked high points. This indicates that such carers may find it difficult to construct stories about specific events in the lives of their offspring. It is suggested that this difficulty results from an interaction between the characteristics of the individuals who lack the ability to make reference to past events and carer-based quality of life issues. Possible reasons are related to the difficulty of sharing memories through language and the pain associated with many key lifetime caring experiences. These preliminary findings have implications for service providers who are tasked with developing effective systems of communication and supports for such carers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Guevara, J. P., Mandell, D. S., Rostain, A. L., Zhao, H., & Hadley, T. R. (2006). Disparities in the reporting and treatment of health conditions in children: An analysis of the Medical Expenditure Panel Survey. Health Services Research, 41(2), 532-549.
Objectives: To determine whether racial and ethnic disparities in health care use differ for physical and behavioral health conditions. Data Sources: Secondary analysis of the 1996-1997 Medical Expenditure Panel Survey Study. Design: Retrospective cohort study of children aged 2-18 years old who were members of participating households. Children were categorized as Hispanic, black, or white. Differences in caregiver-reported behavioral and physical health conditions and services use were compared, and estimates were weighted to reflect the complex sampling scheme. Principal Findings: Of eligible children weighted to represent over 44 million in each year, 13-15 percent were Hispanic, 14 percent black, and 68-70 percent white. After adjusting for potential confounding, Hispanic and black children were less likely to report externalizing behavioral conditions than white children. Black but not Hispanic children were more likely than white children to report asthma. In addition, Hispanic and black children were less likely to report ambulatory visits, and black children were less likely to report receiving a prescription medication than white children. There were no differences in reported emergency room visits or hospitalizations. Interactions between race and various health conditions, health status, insurance, and income were not significant. Conclusions: In this nationally representative sample, we identified racial and ethnic disparities in the reporting of health conditions and the use of discretionary health services. Disparities differed between those with behavioral conditions and those with physical conditions. These disparities were not explained by traditional measures including the presence of health conditions, health status, insurance, and family income, and suggest that national surveys such as Medical Expenditure Panel Survey may benefit from the inclusion of additional explanatory measures. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ha, J.-H., Hong, J., Seltzer, M. M., & Greenberg, J. S. (2008). Age and gender differences in the well-being of midlife and aging parents with children with mental health or developmental problems: Report of a national study. Journal of Health and Social Behavior, 49(3), 301-316.
Using data from the Study of Midlife in the United States (MIDUS), this article examines: (1) the effect of having children with developmental or mental health problems on parents' mental and physical health, (2) the extent to which this effect varies by parental age and gender, and (3) the effects of disability-related factors on the well-being of parents of children with disabilities. Compared to parents of non-disabled children, parents of disabled children experienced significantly higher levels of negative affect, marginally poorer psychological well-being, and significantly more somatic symptoms, controlling for sociodemographic variables. Mothers did not differ from fathers in their well-being. Older parents were significantly less likely to experience the negative effect of having a disabled child than younger parents, suggesting an age-related attenuation of the stress of non-normative parenting. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Haddad, M., Walters, P., & Tylee, A. (2007). District nursing staff and depression: A psychometric evaluation of Depression Attitude Questionnaire findings. International Journal of Nursing Studies, 44(3), 447-456.
Background: Mental health problems such as depression are common in primary care settings and patients with chronic medical problems are at an increased risk. This co-morbidity suggests that district nursing services are particularly likely to encounter psychological problems in their patients. Mental health problems are poorly recognised and inadequately treated in primary care. In part this may be due to stigmatising views of mental illness, which negatively influence help-seeking and user experiences. Likewise providers' attitudes are likely to play a significant part in the management of such problems. Objectives: The aims of this study were extend knowledge of district nursing staff attitudes to depression and explore the psychometric properties of a depression attitude measure used with this staff group. Design and settings: The Depression Attitude Questionnaire (DAQ) was used within a postal questionnaire survey of district nursing services in three areas, Jersey (Channel Islands), Lewisham, and Hertfordshire. Participants: All staff (community nurses, district nurses and home care staff) were contacted; 217 (66%) staff responded to the survey, and 189 (57%) completed the DAQ. Results: Three factors were derived from the DAQ accounting for 47% of the variance. The factor solution appeared stable and provided meaningful dimensions, however the internal consistency of the measure and of its derived subscales was low (Cronbach's a between 0.59 and 0.64). The factors were labelled pessimism about depression and its treatment, tendency to defer to specialists, and professional ease in working with depressed patients. Staff responses revealed generally optimistic views concerning depression treatment, strongly rejecting deterministic attitudes to this condition. Conclusions: The DAQ has been widely employed to measure and compare attitudes of staff from various disciplines and specialisms. The current evaluation has provided a more detailed examination of its psychometric properties than previously available, but low internal consistency levels indicate further examination of this area is warranted. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hafen, M., Jr., & Sorensen, S. (2008). Preparation for future care needs by parents providing care for their adult offspring with disabilities. Illness, Crisis, & Loss, 16(1), 37-51.
Older adults who provide care for an adult child with a disability have rarely been considered when investigating propensity to plan for future care. Families in these circumstances are at risk of experiencing a crisis as these caregiving parents experience personal health challenges. This study investigated influences on the plans made by adults caring for adult offspring with a disability for their own as well their offspring's future care. Results indicated that parents who cared for an adult child with a disability were more likely to plan for their offspring's than their own care and the more planning they did for their adult child, the more they were likely to do for themselves. Implications are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hancock, P. J., Jarvis, J. A., & L'Veena, T. (2007). Older carers in ageing societies: An evaluation of a respite care program for older carers in Western Australia. Home Health Care Services Quarterly: The Journal of Community Care, 26(2), 59-84.
The Australian Red Cross Older Carers Program was developed in 2003 to support the unique needs of "older carers" aged 65 and older (50 if Indigenous) who care for a person (a care recipient, usually a family member) aged 18 or older who have a permanent disability. The aim of the program was to provide intensive case planning, management, and volunteer support that would assist older carers to more readily access respite and continue their caring role in the home. To help achieve this end, ongoing individualised and holistic assistance involving older carers in decision making was an integral component of the Older Carers Program, as was the use of regular home visits by program staff. The Older Carers Program evaluation was both a process and outcome evaluation. Much of the evaluation research focused on the extent to which it had met its stated aims and objectives. However, because the program was quite new and innovative there was a significant further focus upon the processes and activities within the program. At the time the evaluation research was conducted (May 2005), the program had been in operation for 22 months. The population group was identified as those persons (older carers) who had been part of the program between July 2003 and March 2005. Of the 96 older carers who had accessed the program in the specified period, 62 agreed to participate in our research. The methodology consisted of an audit or the program database, in-depth interviews with older carers, and contextual data collection involving program staff and other stakeholders. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hanrahan, D. (2006). The Influence of Media and Respondent Characteristics on the Outcome of a Campaign to Recruit Host Families for Adults with Learning Disability. British Journal of Social Work, 36(6), 979-996.
Family-based short break schemes depend on accessing suitable hosts. Recruitment is seen as a major challenge yet there are no published studies that examine this for adult services. This paper aims to redress that by describing what type of person responded to a campaign to recruit hosts for adults with learning disabilities, and to explore if there is a relationship between (i) the outcome of each enquiry and the respondents and (ii) outcome and how the respondents found out about the service. The study involved a retrospective examination of documented information about each of forty-nine respondents, supplemented with telephone contact. The respondents were mainly married women aged thirty to fifty, with two or more children, from urban settings and who were employed outside the home. Most had heard about the service through newspapers and posters. Thirty-nine per cent applied to host. Age, family size, age of children and location were associated with outcome. Experience was an important predictor of outcome. Word of mouth was the most successful means of recruiting. While broad-based advertising is shown to attract hosts, the results can be maximized by follow-up of those who do not apply immediately. Implications for service delivery and research are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Harbaugh, B. L., Tomlinson, P. S., & Kirschbaum, M. (2004). Parent's Perceptions of Nurses' Cargiving Behaviors in the Pediatric Intensive Care Unit. Issues in Comprehensive Pediatric Nursing, 27(3), 163-178.
It remains a challenge for intensive care nurses to humanize highly technological health care environments while simultaneously maintaining the benefits this technology can offer. Helping nurses to understand the parent perceptions of pediatric intensive care hospitalization may assist nurses with addressing the need to humanize the experience. This qualitative study describes parents' perceptions of nurses' caregiving behaviors in a Pediatric Intensive Care Unit (PICU) in the Midwestern United States. Mothers (n=10) and fathers (n=9) of 10 children were asked questions using a semistructured interview. Content analysis was used to analyze parents' verbal descriptions of nurses taking care of their child in a large midwestern metropolitan area PICU. Parents reported nurses engaged in nurturing and vigilant behavior, namely showing affection, caring, watching, and protecting. Parents' reports suggest that the best nursing behaviors are those that facilitate and complement critical aspects of the parental role, thus reinforcing family integrity during a time of turmoil and uncertainty. Incorporating this knowledge into practice contributes to nurses' understanding of PICU hospitalization as a family event, and also helps to inform interventions to improve family-centered care in the PICU. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hassall, R., Rose, J., & McDonald, J. (2005). Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 49(6), 405-418.
Background: Recent theories of stress and coping in parents of children with intellectual disabilities (ID) emphasize the importance of cognitive appraisals in influencing parents' levels of stress and their adaptations to difficulties presented by the children. This study investigated the relationships between parental cognitions, child characteristics, family support and parenting stress. The aspects of cognitions studied were: parenting self-esteem (including efficacy and satisfaction) and parental locus of control. Methods: The group studied consisted of 46 mothers of children with ID. The Vineland Adaptive Behavior Scales and Maladaptive Behavior Domain were administered by interview. Mothers also completed four questionnaires: the Family Support Scale, the Parenting Sense of Competence Scale, a shortened form of the Parental Locus of Control Scale and the Parenting Stress Index (Short Form). Results: Data were analysed using Pearson's correlation coefficients, partial correlations and a regression analysis. The results indicated that most of the variance in parenting stress was explained by parental locus of control, parenting satisfaction and child behaviour difficulties. Whilst there was also a strong correlation between family support and parenting stress, this was mediated by parental locus of control. Conclusions: The results demonstrate the potential importance of parental cognitions in influencing parental stress levels. It is argued that these results have implications for clinical interventions for promoting parents' coping strategies in managing children with ID and behavioural difficulties. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hayashi, E. (2006). Daytime drowsiness and response to human stimuli in a child with severe intellectual and physical disabilities: Observation on eye-blink and daytime napping. Sleep and Biological Rhythms, 4(1), 81-83.
This article presents a case study that focuses on daytime drowsiness in a child with severe intellectual and physical disabilities. Staying awake in the daytime is important to the establishment of 24-h sleep-wake rhythm. This study, which recorded a child's daytime napping and his blink response to human stimuli, showed that an increase in the child's blink response to his caregiver preceded an increase in his ability to stay awake during the daytime. It is suggested, then, that children's responding to human stimuli is a key factor in their establishment of a 24-h sleep-wake rhythm. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hays, R. M., Valentine, J., Haynes, G., Geyer, J., Villareale, N., McKinstry, B., et al. (2006). The Seattle Pediatric Palliative Care Project: Effects on Family Satisfaction and Health-Related Quality of Life. Journal of Palliative Medicine, 9(3), 716-728.
Purpose: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled participants. The program was designed to enhance patient-provider communication using the Decision-making Tool (DMT) and experimented with co-management by clinicians and insurers to support decision making in advanced serious pediatric illness. Design: The project design consisted of ethical decision-making, provider education, and flexible administration of health benefits through co-case management between insurers and care providers. The evaluation study design is a non-experimental pretest, posttest design comparison of pediatric quality of life and family satisfaction at program entry with repeated measures at 3 months post-program entry. Quality of life was measured with parent proxy reports of health-related quality of life using the PedsQLTM Version 4.0, and family satisfaction was measured with a 31-item self-administered questionnaire designed by project staff. Results: Forty-one patients ranging in age from infancy to 22 years old were enrolled in the program over a 2-year period. Parents consented to participate in the evaluation study. Thirty-one specific diagnoses were represented in the patient population; 34% were some form of cancer. Improvements in health-related quality of life over baseline were observed for 21 matched pairs available for analysis in each domain of health-related quality of life; positive changes in reports of emotional well-being were statistically significant. Improvements over baseline in 14 of 31 family satisfaction items were statistically significant. Conclusions: Pediatric palliative care services that focus on effective communication, decision support, and co-case management with insurers can improve aspects of quality of life and family satisfaction. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hayward, L., Davies, S., Robb, R., Denton, M., & Auton, G. (2004). Publicly Funded and Family-Friend Care in the Case of Long-Term Illness: The Role of the Spouse. Canadian Journal on Aging, 23(Suppl1), S39-S48.
In recent years, considerable attention has been devoted to the value of unpaid work in the economy. One very important aspect of unpaid work is caregiving for chronically ill or disabled people and the question of whether or not family-and-friend caregiving eases the burden on the publicly funded system. Using data from the 1996 General Social Survey, this paper investigates the extent to which the presence of a spouse of a senior aged 55 and over with a long-term illness reduces the amount of publicly funded care received. The findings from the multivariate Tobit analysis show that the presence of the spouse does significantly reduce the amount of publicly funded care used. This result is not gender-specific. The total hours of caregiving by the spouse are valued, as well as the savings generated for the publicly funded system, and the policy issue of tax relief for spouses who are engaged in long-term caregiving is explored. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Heller, T., & Caldwell, J. (2006). Supporting Aging Caregivers and Adults With Developmental Disabilities in Future Planning. Mental Retardation, 44(3), 189-202.
A peer support intervention was developed to support aging caregivers and adults with developmental disabilities in planning for the future. The intervention consisted of a legal/financial training session followed by five additional small-group workshops. Pretest and 1-year follow-up surveys were conducted with 29 families participating in the intervention and 19 control families. Outcome measures included future planning activities, caregiving appraisals, discussion of plans with individuals who have developmental disabilities, and choice-making of individuals with developmental disabilities. The intervention significantly contributed to families completing a letter of intent, taking action on residential planning, and developing a special needs trust. Caregiving burden significantly decreased for families in the intervention and daily choice-making of individuals with disabilities increased. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Heller, T., & Kramer, J. (2009). Involvement of adult siblings of persons with developmental disabilities in future planning. Intellectual and Developmental Disabilities, 47(3), 208-219.
This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample consisted of 139 adult siblings recruited from an online sibling list and a sibling conference. Results indicated that few families made plans or involved siblings in the planning. Siblings who were most involved in future planning were older, more involved in disability activities, and provided more support to their sibling with disabilities. About 38% of siblings expected to be primary caregivers and were more likely to expect this role if the sibling with a disability lived closer and was female, had more sibling contact, provided them with more support, and felt greater caregiving satisfaction. Major support needs of siblings were for support groups, workshops-training on how to assume caregiving responsibility, financial support, and printed material on making future plans. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Henderson, S., Skelton, H., & Rosenbaum, P. (2008). Assistive devices for children with functional impairments: Impact on child and caregiver function. Developmental Medicine & Child Neurology, 50(2), 89-98.
Functional impairments can limit a child's ability to participate in the experiences of childhood. This 'deprivation' can, in turn, have a negative effect on such children's development, academic performance, and quality of life, as well as on the lives of their caregivers and families. Many adults use assistive devices to overcome functional impairments and enable them to participate in daily activities; however, such devices may be underutilized by children. Each of the 54 studies reviewed in this report identified one or more functional impairments towards which an assistive device was targeted: accessing a computer (n=3 [studies]), activity assistance (n=2), behaviour changes (n=3), communication (n=30), independent feeding (n=1), living skills (n=1), mobility (n=9), modifying the environment (n=1), nutrition (n=4), and postural stability (n=2). The aim of this review was to determine the impact of assistive devices on the components of functioning defined by the World Health Organization's International Classification of Functioning, Disability and Health. The impact of these devices was found to be overwhelmingly positive. Study outcomes reported were mainly child-focused and could be classified as influencing activity, participation, and personal contextual factors, with relatively little attention paid to caregiver-focused outcomes. Few studies provided either qualitative evidence or experimentally-based quantitative research evidence using controls. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Henz, U. (2006). Informal Caregiving at Working Age: Effects of Job Characteristics and Family Configuration. Journal of Marriage and Family, 68(2), 411-429.
This article addresses the relationship between employment and providing informal care for sick, disabled, or elderly people in Great Britain. Hazard rate models for taking up caring and leaving work when caring are estimated using retrospective family, employment, and caring data from the British Family and Working Lives Survey 1994-1995 for 9,139 British men and women. Family roles but not employment characteristics were relevant for men and women taking up caring. Being in a lower social class was, however, an important predictor of female carers leaving the labor market. Starting caring and quitting the labor market were not affected by women working part time, nor by most aspects of job flexibility that were considered. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Heru, A. M., Ryan, C. E., & Iqbal, A. (2004). Family functioning in the caregivers of patients with dementia. International Journal of Geriatric Psychiatry, 19(6), 533-537.
Background: Caregiver burden has been extensively studied in the dementia population. The marital relationship has been suggested as a mediational model through which variables influence the caregiver and contribute to the experience of burden or reward. Objectives: This study examines family functioning, caregiver burden and reward and quality of life in 38 family members caring for a relative with dementia. Methods: Caregivers of out-patients with dementia completed self report questionnaires. Results: 63% of caregivers were female with a mean age of 62 years. Patient mean age was 73 years. The average number of caregiving years was 3.1. Caregivers were more likely to be spouses (61%) than children (29%) or other relatives (11%). Despite the fact that caregivers reported that their relatives were moderately disabled, they perceived more reward than burden. Caregivers who reported poor family functioning had higher ratings of strain and burden. Family functioning in these caregivers was poorest in the dimensions of affective responsiveness, problem solving and communication but it was also impaired in roles and affective involvement. Conclusions: Assessing a family's functioning may be an important factor in the care of the dementia patient and his/her family. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hewitt-Taylor, J. (2005). Caring for children with complex needs: Staff education and training. Journal of Child Health Care, 9(1), 72-86.
Children who live with medical conditions that were previously considered incompatible with long term survival are often highly dependent on interventions and equipment which would traditionally have required hospitalization. However, it is generally accepted that their social, psychological, emotional and developmental needs are best met at home. One of the many factors that can impede these children from being discharged from hospital is the lack of availability of staff who can provide care and support for them and their families. Increasing the number of staff who are able to provide such support might, therefore, assist in providing for their care needs. This article reports on a study of the perceived education and training needs of staff who care for children with complex needs and their families. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hinton, L., Farias, S. T., & Wegelin, J. (2008). Neuropsychiatric symptoms are associated with disability in cognitively impaired Latino elderly with and without dementia: Results from the Sacramento Area Latino Study on Aging. International Journal of Geriatric Psychiatry, 23(1), 102-108.
Objective: To examine the relationship between neuropsychiatric symptoms burden and disability in cognitively impaired older Latinos. Methods: Subjects in the cross-sectional study were 95 cognitively impaired (both demented and non-demented) non-institutionalized Latino elderly participating in an epidemiological cohort study and their family caregivers. Care recipient neuropsychiatric symptoms (Neuropsychiatric Inventory) and level of functional impairment (i.e. impairment in activities of daily living and instrumental activities of daily living) were assessed through interviews with family caregivers. Results: Both NPI total score and NP1 depression subscale score were significantly associated with disability before and after controlling for potential confounding variables. The strength of the association between higher neuropsychiatric symptom levels and higher disability was similar for both the cognitively impaired not demented and demented groups. Conclusions: Neuropsychiatric symptoms are associated with increased disability in a community sample of cognitively impaired Latino elderly. More effective identification and treatment of neuropsychiatric symptoms may improve functioning in older Latinos and reduce health disparities for this population. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hirst, M. (2005). Carer distress: A prospective, population-based study. Social Science & Medicine, 61(3), 697-708.
This study investigates whether transitions into and out of unpaid caregiving are associated with increased risk for onset of or delayed recovery from psychological distress, and traces the prevalence of distress across successive years of caring activity and after caregiving has ceased. The analysis is based on data from the British Household Panel Survey covering 3000 would-be carers, 2900 former carers, and 11,100 non-carers during the 1990s; their psychological well-being was assessed at annual intervals using the General Health Questionnaire. Carers providing long hours of care over extended spells present raised levels of distress, women more so than men. Compared with non-carers, risk for onset of distress increases progressively with the amount of time devoted to caregiving each week. Adverse effects on the psychological well-being of heavily involved carers are most pronounced around the start of their care episodes and when caregiving ends. Ongoing care increases their susceptibility to recurring distress, and adverse health effects are evident beyond the end of their caregiving episodes. Several groups of carers experience psychological health inequalities compared with non-carers, especially those looking after a spouse or partner, and mothers caring for a sick or disabled child. The findings underline the importance for effective carer support and health promotion of early identification of carers, monitoring high risk groups, timing appropriate interventions, and targeting resources. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hix-Small, H. (2007). Developmental screening in practice: Using parent report within pediatric practice to detect infant and toddler developmental delays. Dissertation Abstracts International Section A: Humanities and Social Sciences, 68(4-A), 1318.
One challenge in a busy office practice is how best to incorporate formal developmental screening as recommended by the American Academy of Pediatrics. The purpose of this study was to investigate the effectiveness and feasibility of incorporating a parent-completed developmental screening tool, the Ages and Stages Questionnaires (ASQ), into the 12- and 24-month well-child visits under "real world" conditions utilizing a combined in-office and mail-back data collection protocol. Agreement between ASQ scores, Pediatric Developmental Impression (PDI) and Part C Early Intervention Agency referral outcomes was examined. A convenience sample of 1428 caregivers/children presenting for their 12- or 24-month well-child visit between April 2005 and March 2006 participated (children with identified delays/disorders were excluded). Board-certified pediatricians (N=18) and nurse practitioners (N=2) in a midsized Pacific Northwest county acted as secondary participants. Pediatricians were blind to ASQ results when completing the PDI. Cases with delayed ASQ or PDI were referred for further evaluation. Analyses included descriptive statistics, contingency table 2 tests and logistic regression. Referral rates to the Part C agency increased by 224% after implementing the ASQ. Pediatrician referral based on the PDI was significantly predicted by suspected communication delay, Odds Ratio (OR), 95% Confidence Interval (CI) = 136.50 (45.83-406.52), and gross motor delay, OR (95% CI) = 58.80 (9.48-364.69). The ASQ and PDI significantly differed with overall agreement at 81.8%, 2 = 97.27; OR (95% CI) =10.05 (5.04-17.01). A total of 107 referrals were made and of these, 62 (58%) would not have been referred based on the PDI alone. Total referrals resulted in 38 cases (36%) qualifying for special services and 44 (41%) scheduled for further developmental monitoring. ASQ return rate by caregivers/parents was 54%. Referral rates dramatically increased. Though pediatrician referrals were likely to qualify for services (96%); physician referrals accounted for only 42% of total referrals, highlighting the need for pediatric developmental screening. The 54% ASQ return rate, though acceptable under study conditions, calls for alternative implementation strategies. Study limitations and a promising electronic-based approach designed for quality improvement are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Hoffman, S., Cooper, D., Ramjee, G., Higgins, J. A., & Mantell, J. E. (2008). Microbicide acceptability: Insights for future directions from providers and policy makers. AIDS Education and Prevention, 20(2), 188-202.
To help fill the gap concerning health care providers' and policy makers' knowledge of and views concerning microbicides, we compared data from one U.S. study and two South African studies that explored these issues. Frontline providers in South Africa were enthusiastic about any method that would have the potential to slow the HIV/AIDS epidemic, whereas providers in New York City and policy makers in South Africa balanced their enthusiasm with more concerns. Across all studies, participants wanted timely and accurate scientific information, and they raised issues about safety, "messiness," and cost. Many had difficulty understanding that promoting a partially effective method can reduce risk if a client uses it more often than a highly effective method. Microbicide advocates need to effectively communicate to providers the evidence-based findings from microbicide trials and find approaches to introduce concepts such as "harm reduction" and "prevention equation" perspectives in client counseling. Developing these approaches will maximize the positive influence that providers can exert on user acceptability of microbicides once they become available. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Holman, A. (2009). In conversation with a family carer. British Journal of Learning Disabilities, 37(1), 2-4.
This author discusses a conversation he had with the parent of a learning disabled son, and the services he received for his disability. Donald Brown (Names have been changed as their case is currently going before the courts) has lived in many places including Ireland, Scotland and now Wiltshire. Donald has a learning disability and autism. His support needs are high and specific. He has trouble living with others as this can often upset him. Donald needs two people to be with him whenever he goes out. Unfortunately over the years, many service providers said they could support Donald but found they were not able to, this has led to him living in a lot of different places. Mrs Brown says 'that in itself caused a lot of damage, his self esteem just went down and down and also his trust in people; he didn't trust anybody. Every time someone came to the home he thought they were coming there to see him and that he was going to be moved again even when it wasn't the case. So he lived on the edge so to speak, all the time, waiting to be moved on somewhere else. He hasn't been treated very nicely by an awful lot of people in the care profession'. This interview of the parent outlines the services provided to the son, and the problems encountered in the process, especially the financial concerns. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Hooper, L., Williams, W., Wall, S. E., & Chua, K.-C. (2007). Caregiver distress, coping and parenting styles in case of childhood encephalitis. Neuropsychological Rehabilitation, 17(4-5), 621-637.
This study presents an exploration of the impact of childhood encephalitis on parental mood, coping and disciplinary strategies. Thirty six parents of children aged between 10 and 17 years were recruited. They were split into groups of recent and remote cases (within or beyond 7 years). Group comparison revealed that neurobehavioural consequences of childhood encephalitis appear to persist over time. Higher levels of behavioural symptoms consistent with dysexecutive disorder were associated with greater parental distress. Parents remain distressed despite reporting proactive profiles of coping. There was an indication that severity of dysexecutive disorder was asscociated with less use of proactive parental management strategies. Support for parents, in particular focused on effective management of dysexecutive problems, is recommended. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Horowitz, A., Goodman, C. R., & Reinhardt, J. P. (2004). Congruence Between Disabled Elders and Their Primary Caregivers. The Gerontologist, 44(4), 532-542.
Purpose: This study examines the extent and independent correlates of congruence between disabled elders and their caregivers on several aspects of the caregiving experience. Design and Methods: Participants were 117 visually impaired elders and their caregivers. Correlational analyses, kappa statistics, and paired t tests were used to examine the extent of congruence. Hierarchical multiple regression analyses identified significant correlates of congruence on four target issues: elder's functional disability, elder's adaptation to vision impairment, caregiver's over-protectiveness, and caregiver's understanding of the vision problem. Results: Caregivers assessed elders as more disabled and rated themselves as more overprotective than did the elders. Although independent correlates varied by target issue, two domains most consistently influenced congruence across measures: the caregiver's assessment of the elder's status and quality of the relationship. Implications: Findings underscore the importance of addressing congruence by target issue, rather than as a global characteristic of the caregiving relationship. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Huang, C. J., Poirier, M. P., Cantwell, J. R., Ermis, P. R., & Isaacman, D. J. (2006). Prudent Layperson Definition of an Emergent Pediatric Medical Condition. Clinical Pediatrics, 45(2), 149-155.
This study was designed to assess how well parents rated pediatric medical conditions based on their perceived degree of urgency so as to determine if the "Prudent Layperson Standard" is reasonable. A self-administered, supervised survey was given to a convenience sample of 340 caregivers in the emergency department of an urban children's hospital. Respondents were asked to rank the urgency of 15 scenarios. A caregiver response within 1 point of the physician score was considered concordant with medical opinion. A 2-week-old infant with a rectal temperature of 103.7degreesF was the only emergent scenario underestimated by caregivers. A 1 1/2-yr-old child with an upper respiratory tract infection , a 7-year-old child with ringworm, an 8-month-old infant with a simple forehead contusion, and a 4-year-old child with conjunctivitis were the non-urgent scenarios overestimated by caregivers. Laypeople are able to identify cases constructed to represent obvious pediatric medical emergencies. Several patient subgroups frequently overestimate medical urgency. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hubert, J. (2006). Family carers' views of services for people with learning disabilities from Black and minority ethnic groups: A qualitative study of 30 families in a south London borough. Disability & Society, 21(3), 259-272.
In 2001, the UK Government identified the widespread neglect of the needs of people with learning disabilities from Black and minority ethnic communities. In this qualitative study informal interviews were held with 30 family carers of adults with learning disabilities from Black and minority ethnic communities. Their views were sought regarding services received and services needed, and cultural or communication barriers faced in accessing appropriate services. The study showed that although carers were largely satisfied with services actually received, service provision was highly inadequate and ineffective. Even very elderly and ill carers and those caring for people with severe disabilities received little support. Social worker support was negligible, and future planning rare. It is clear that the needs of carers from Black and minority ethnic communities are not being met. The situation would be considerably eased by adequate social worker support. Stereotypes of supportive family networks, (especially regarding south Asian families) proved to be unfounded. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hutchinson, K. C., Willard, V. W., Hardy, K. K., & Bonner, M. J. (2009). Adjustment of caregivers of pediatric patients with brain tumors: A cross-sectional analysis. Psycho Oncology, 18(5), 515-523.
Objective: The purpose of the study was to compare the psychological adjustment of caregivers of children with brain tumors who are on-treatment with caregivers of children who are off-treatment. Methods: Data were collected from 90 participants: 47 (52.2%) caregivers of children undergoing active treatment (on-treatment) and 43 (47.8%) caregivers of children off-treatment on measures of global psychological distress and illness and caregiving related distress. Results: Results revealed that the two groups differed significantly in their reported symptoms of general psychological distress, with the off-treatment caregivers reporting significantly lower levels of general distress. However, off-treatment caregivers continued to experience elevated levels of uncertainty and caregiving burden related to their child's illness. Conclusions: There is significant evidence suggesting that the burden of caring for a child with a brain tumor is ongoing, continuing well into the off-treatment period. These results also suggest that the psychosocial functioning of these caregivers is best assessed using measures designed specifically to evaluate illness-related psychosocial functioning (e.g. the Parent Experience of Child Illness, Impact on Family Scale). (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Hutchison, T., & Gordon, D. (2005). Ascertaining the prevalence of childhood disability. Child: Care, Health and Development, 31(1), 99-107.
Objectives: To reapply 1985 Office of Population Census and Surveys (OPCS) disability survey methods, modified as necessary, to a sample of children to ascertain presence of disability. To compare OPCS-based prevalence with prevalence based on carer's views and medical records. Design: Analytical study. Setting: Community Child Health Department in UK. Participants Principal carers of 100 children aged 5-15, selected from a district special needs register. Main outcome measures: Comparable information about disability from three sources and diagnosis from carers and medical records. Results: Medical records of 46% contained a diagnosis. Carers were always aware of this, although a single question did not always elicit their knowledge. OPCS-derived threshold disability criteria in categories of Hand function, Personal care, Consciousness and Continence gave prevalence results similar to medical records and carers. OPCS criteria yielded higher prevalence of disability in the areas of Locomotion (8%), Communication (14%) and Hearing (18%). Carers, OPCS and medical records disagreed markedly about prevalence of disabilities of Vision, probably because of the use of differing definitions. OPCS learning criteria were judged unsuitable and standard attainment targets (SATs) were substituted. These provided similar prevalence figures to carers and medical records. OPCS behaviour criteria were also unsuitable and were replaced by the General Health and Behaviour Questionnaire (GHBQ). This found an increased prevalence of problems compared with carers and doctors. Conclusions: Diagnostic labels have limited use when collecting data about disabled children. Doubt is cast on the validity of some of the 1985 OPCS threshold criteria, and reassessment is suggested before their future use. Further work is needed on the use of SATs and GHBQ in the benchmarking of disability. To collect population data it would be easier and at least equally effective (with caution in the case of Vision) to ask carers directly rather than applying descriptive thresholds and external judgements. Similar information could be obtained from medical records, however, they are likely to be out of date. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Iecovich, E. (2008). Caregiving burden, community services, and quality of life of primary caregivers of frail elderly persons. Journal of Applied Gerontology, 27(3), 309-330.
Caregiving burden was found to be affected by a multiplicity of factors and to affect the quality of life of family caregivers. The present study is aimed at examining the extent to which various supportive services help to alleviate caregivers' burden and the extent to which caregivers' burden affects various domains of the quality of life of primary caregivers and also to investigate the factors that best explain quality of life. The sample includes 114 primary caregivers who provided care to physically disabled elderly family members. Data were collected through face-to-face interviews. The findings show that various domains of the quality of life of primary caregivers were affected by the level of the caregivers' burden and the types of services provided to the elderly person, by caregivers' characteristics, as well as their health and economic status. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ievers-Landis, C. E., Hoff, A. L., Brez, C., Cancilliere, M. K., McConnell, J., & Kerr, D. (2005). Situational Analysis of Dietary Challenges of the Treatment Regimen for Children and Adolescents with Phenylketonuria and Their Primary Caregivers. Journal of Developmental and Behavioral Pediatrics, 26(3), 186-193.
A situational analysis was conducted to evaluate challenges with the treatment regimen (a low protein diet and special supplemental formula) for children and adolescents with phenylketonuria (PKU) and their caregivers. A semistructured interview was administered to 19 caregivers and 11 children with PKU to describe formula and dietary problems and their frequency, difficulty, and affective intensity. Information was also gathered on attempted solutions to problems and their perceived effectiveness. Caregivers who rated dietary problems as less frequent, difficult, and emotionally upsetting and strategies as more effective for solving problems had children with significantly lower phenylalanine (Phe) levels, a biological indicator of adherence (i.e., better adherence; all p values <.05). Caregivers who reported using strategies coded as representing an authoritarian parenting style to solve dietary problems were significantly more likely to have lower household incomes and older children with higher Phe levels than were those who did not report such strategies (all p values <.05). (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ilse, I. B., Feys, H., De Wit, L., Putman, K., & De Weerdt, W. (2008). Stroke caregivers' strain: Prevalence and determinants in the first six months after stroke. Disability and Rehabilitation: An International, Multidisciplinary Journal, 30(7), 523-530.
Purpose: Many disabled stroke survivors live at home supported by informal caregivers. Research has revealed that these caregivers are experiencing strain. This study aims to examine the prevalence and differences over time of caregivers' strain in the first 6 months post-stroke and to predict caregiver strain based on patients' and caregivers' characteristics and service input. Method: Ninety consecutive patients and their caregivers were assessed at 2, 4 and 6 months post-stroke. The Caregiver Strain Index was used to evaluate strain. Patients' motor function, functional ability, health status, emotion and participation and caregivers' gender and relation to the patient and service input after discharge were measured to determine the predictive factors. Results: Nearly one out of three caregivers experienced strain. No differences were seen between 2, 4 and 6 months post-stroke. Correlation and multiple regression analyses revealed that in predicting strain, the patients' functional and activity level plays an important role in the sub-acute phase while the participation level gets more important over time. Conclusions: These findings emphasize the importance of maximal physical recovery and optimal reintegration in the community. This is not only essential for the patients themselves but also a pre-requisite to reduce the strain of their caregivers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ironson, G. (2007). Altruism and health in HIV. Post, Stephen G, 70-81.
(from the chapter) Is altruism good for the altruistic person? What motivates people to donate their time or money to help others, or to become a volunteer or caregiver? What are the positive and negative consequences to the giver? What are the dangers of burnout, and how can they be avoided? This chapter is divided into three sections that will cover what is known about these questions (1) in the context of the literature on volunteering, (2) in the context of the literature on caregiving, and (3) in the context of some of my own work with people who are HIV positive. I will focus on several aspects of what may be considered altruism: volunteering, ratings of care and concern for others as expressed in essays, giving to charities, and altruism as a personality variable. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Janssen, C. G., Schuengel, C., & Stolk, J. (2005). Perspectives on quality of life of people with intellectual disabilities: The interpretation of discrepancies between clients and caregivers. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 14(1), 57-69.
Large discrepancies have sometimes been found between the quality of life (QOL) experienced by clients with intellectual disabilities and their QOL as described by their caregivers. Olsen and Schober (Soc Indi Res 1993; 28: 173-193) may have provided a framework useful to conceptualize such discrepancies. They suggested that lack of concordance between objective circumstances (i.e. poverty) and perceived QOL must not be treated as measurement noise, but as a source of information. They speculated on the psychological processes that underly and explain this lack of concordance; particularly processes that try to deal with the stress induced by cognitive dissonance and learned helplessness. In this study low to moderate agreement was found between caregivers judgement of QOL of individual clients and clients' own perception of QOL. In some areas and for some clients the discrepancies indicated dissonance (caregivers are satisfied, clients are not) and in other areas and for other clients adaptation (clients are satisfied, caregivers are not). There were systematic differences between clients falling in these groups with respect to their personal characteristics and with respect to factual conditions of care. These outcomes are interpreted with respect to Olson and Schober's contentions regarding the psychological processes that underly a person's experience of QOL. The Olson and Schober framework appears to be a fruitful way to combine different sources of information regarding QOL. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Jingree, T., & Finlay, W. (2008). 'You can't do it ... It's theory rather than practice': Staff use of the practice/ principle rhetorical device in talk on empowering people with learning disabilities. Discourse & Society, 19(6), 705-726.
This study explores the discourses of support staff of people with learning disabilities talking about how choices and control are promoted or denied for service-users. A semi-structured interview based on issues identified in the White Paper 'Valuing People' was administered to 15 professional care-givers of people with learning disabilities. These were transcribed and analysed using discourse analysis. The analysis demonstrated the use of two dominant discursive themes: increasing autonomy and practicalities talk. These themes were frequently mobilized together in a manner that paralleled what Wetherell et al. (1987) termed a 'practice/ principle rhetorical device,' to argue against increasing choices and control. The implications of this are discussed, as are the subject positions offered to staff and service-users. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Jones, B. L. (2007). Caregivers of children with cancer. Journal of Human Behavior in the Social Environment, 14(1-2), 221-239.
When a child is diagnosed with cancer, families experience a devastating life event with immediate and long-term impact on quality of life, activities of daily living, family dynamics, self identity, parental role, and sense of meaning in the world. However, despite the trauma, more recent studies are highlighting the resilience and functioning of families facing cancer in childhood. This chapter explores these family dynamics. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kaehne, A., & Beyer, S. (2008). Carer perspectives on the transition of young people with learning disabilities to employment. Journal on Developmental Disabilities, 14(1), 95-104.
The paper reports the views of carers on transition to employment, college or other services for young people with learning disabilities (LD). The research draws on interviews with 87 carers in six areas of the U.K. conducted over a period of 12 months. The research found that advice to carers from careers services did not successfully cover employment as an option, whereas advice from employment services did. Carers did aspire to their young people getting a paid job as a next step, but follow-up interviews showed the majority went to college. The results suggest that employment organizations need to be involved earlier in the transition process if young people and carers are to be fully informed of their options. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kalra, H., Nischal, A., Trivedi, J. K., Dalal, P. K., & Sinha, P. K. (2009). Extent and determinants of burden of care in Indian families: A comparison between obsessive-compulsive disorder and schizophrenia. International Journal of Social Psychiatry, 55(1), 28-38.
Background: Limited data is available for family burden in anxiety disorders such as obsessive-compulsive disorder (OCD), particularly from the developing world where families are the primary source of support for patients. Aim: To compare family burden in patients with OCD and schizophrenia in an Indian setting and to examine the influence of caregivers' demographics, patients' illness severity and disability on family burden. Method: This comparative cross-sectional study assessed family burden in key relatives of patients with OCD (n = 50) and schizophrenia (n = 30) respectively. Results: Indian families experience significant degrees of burden in the care of their relatives with OCD and schizophrenia. Key relatives' demographic characteristics did not influence burden severity. Illness severity and patients' disability had a direct positive relationship with perceived family burden. Conclusion: Indian families of patients with OCD experience burden comparable to that of families of patients with schizophrenia. There is a need to develop local needs-based support programmes for families of patients with psychiatric disorders in India. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kalra, L., Evans, A., Perez, I., Melbourn, A., Patel, A., Knapp, M., et al. (2004). Training carers of stroke patients: Randomised controlled trial. BMJ: British Medical Journal, 328(7448), 1099.
Informal care givers support disabled stroke patients at home but receive little training for the caregiving role. This study evaluates the effectiveness of training care givers in reducing burden of stroke in patients and their care givers. The main outcome measures were cost to health and social services, caregiving burden, patients' and care givers' functional status, psychological state, quality of life and patients' institutionalisation or mortality at one year. Patients were comparable for age, sex, and severity of stroke (median Barthel index 8; interquartile range 4-12). The costs of care over one year for patients whose care givers had received training were significantly lower. Trained care givers experienced less caregiving burden (care giver burden score 32 v 41; P=0.0001), anxiety (anxiety score 3 v 4; P=0.0001) or depression (depression score 2 v 3; P=0.0001) and had a higher quality of life (EuroQol score 80 v 70; P=0.001). Patients' mortality, institutionalisation, and disability were not influenced by caregiver training. Training care givers during patients' rehabilitation reduced costs and caregiver burden while improving psychosocial outcomes in care givers and patients at one year. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Kane, J. R. (2006). Pediatric Palliative Care Moving Forward: Empathy, Competence, Quality, and the Need for Systematic Change. Journal of Palliative Medicine, 9(4), 847-849.
Modern literature speaks of models of care, competencies, and quality improvement projects with defined goals and outcomes. In an era in which success is determined by decreased mortality rates and disease-free survivals we must also be reminded that, ultimately, caring for the sick is about sharing one's knowledge and expertise in a way that is competent and compassionate, without regard for one's self and with the purpose of helping another human being at a time of great need. In the end, medicine is a profession of service. The palliative care mandate for professionals involved in the care of children suffering from chronic and life-threatening illnesses is to improve access to evidence-based, quality supportive care services provided by empathic, compassionate and competent health care providers who can attend to the child and family's multiple physical, emotional, and spiritual needs throughout the illness trajectory and across the hospital, clinic, and home care settings. Health care professionals may find personal meaning in the advancement of scientific and technological advancements that promote the well-being of humankind. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Kaugars, A. S., Klinnert, M. D., Robinson, J., & Ho, M. (2008). Reciprocal influences in children's and families' adaptation to early childhood wheezing. Health Psychology, 27(2), 258-267.
Objective: The objective of the present study was to demonstrate the reciprocal relationships between family adaptation to illness and children's medication use over time among children who presented with wheezing illness in infancy but have varying illness outcomes by age 4. Design: A longitudinal design and latent growth curve models (LGM) were used to predict change in family and caregiver adaptation to illness and children's medication use over three years among 140 infants with wheezing, among families from low socioeconomic, multi-ethnic backgrounds. Main Outcome Measures: One LGM predicted level and change (slope) of family adaptation to illness from children's baseline medication use. The second LGM predicted level and change (slope) of children's medication use from baseline family adjustment to illness. In both models, illness severity, caregivers' psychological resources, and emergency department use were covaried with the independent variable. Results: Two latent growth models were found to adequately fit the data and demonstrate full reciprocal relations between family adaptation to illness and children's medication use while accounting for baseline variables. Baseline measures of caregiver psychological functioning and illness severity were also significant predictors of family adaptation and children's medication use over time. The two models were not statistically different for children with and without active asthma at 4 years of age. Conclusion: Findings support the reciprocal effects model of child and family influences on pediatric illness and underscore the importance of early indicators of individual and family functioning. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kazak, A. E., Simms, S., Alderfer, M. A., Rourke, M. T., Crump, T., McClure, K., et al. (2005). Feasibility and preliminary outcomes from a pilot study of a brief psychological intervention for families of children newly diagnosed with cancer. Journal of Pediatric Psychology, 30(8), 644-655.
Objective: To report initial feasibility and outcome from a pilot study of a new three-session intervention for caregivers of children newly diagnosed with cancer, Surviving Cancer Competently Intervention Program--Newly Diagnosed (SCCIP-ND). Method: Nineteen families (38 caregivers) were randomly assigned to SCCIP-ND or treatment as usual subsequent to learning of their child's illness. The study design included pre- and 2-month postintervention assessments, with state anxiety and posttraumatic stress symptoms as outcomes. Feasibility was based on therapist feedback and supervision, program evaluations, and data from study-tracking procedures. Results: SCCIP-ND appears to be an acceptable intervention that can be used successfully with caregivers over the first few months after diagnosis. Recruitment and retention data document feasibility but also highlight challenges. Preliminary outcome data show changes in the desired direction [e.g., reduced anxiety and parental posttraumatic stress symptoms (PTSS) ]. Conclusions: The pilot data are supportive of the value and challenges of developing evidence-based family interventions in pediatric psychology. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Keigher, S., Zabler, B., Robinson, N., Fernandez, A., & Stevens, P. E. (2005). Young caregivers of mothers with HIV: Need for supports. Children and Youth Services Review, 27(8), 881-904.
Data from a qualitative longitudinal study of 55 women living with HIV in one Midwestern state reveal that the young children of such women provide vital caregiving for them. The 43 mothers (of the 55 women) in the parent study have 133 living children among them, of whom nearly all were minors when their mothers were first diagnosed with HIV. At data collection, 59 of these children were still aged 18 or under. This qualitative study examines the children of seven of these women by exploring the interview narratives in which they describe caregiving tasks performed by their children. Utilizing research literature from a variety of perspectives on children and caregiving, we examine the different developmental stages of the caregiving children and the impacts of these largely invisible responsibilities on their lives. Finding a dearth of supportive resources available to the children, we speculate about interventions that could appropriately assist them emotionally, developmentally and physically. Legitimation of young caregivers' needs will require wider recognition of caregiving and its social consequences, recognition of the sparse institutional supports that currently assist these children, and creativity in mobilizing stronger informal support systems for individual children and whole families affected by HIV/AIDS. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kelso, T., French, D., & Fernandez, M. (2005). Stress and coping in primary caregivers of children with a disability: A qualitative study using the Lazarus and Folkman Process Model of Coping. Journal of Research in Special Educational Needs, 5(1), 3-10.
Twenty-six primary caregivers of children with a disability took part in focus groups or interviews to discuss their perceptions of stress and the coping process. Research was framed within the Process Model of Stress and Coping (Lazarus & Folkman, 1984). Findings provided a snapshot of the common stresses encountered by caregivers and indicate the need to consider individual experiences when determining the impact of stressful events. Eight common stressors were identified, as well as novel constructions of stressful experiences. Results suggested that a range of coping resources and strategies were employed. The study also indicated that the majority of participants adapted well to the requirements of raising a child with a disability. The current study indicates the value of using qualitative methods, particularly with unique populations, to inform policy and service provision. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kerkorian, D., McKay, M., & Bannon, W. M., Jr. (2006). Seeking help a second time: Parents'/caregivers' characterizations of previous experiences with mental health services for their children and perceptions of barriers to future use. American Journal of Orthopsychiatry, 76(2), 161-166.
This study examines the relationship between urban parents'/caregivers' previous experiences obtaining mental health care for their children and their perceptions of barriers to their children's use of services in the future. Assessments of prior treatment outcome and aspects of relationships with former providers were linked to endorsements of doubt about the utility of treatment as a potential barrier to the children's use of services in the future and the number of barriers parents endorsed. Implications for urban child mental health service delivery are drawn. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Khan, F., Pallant, J., & Brand, C. (2007). Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis. Disability and Rehabilitation: An International, Multidisciplinary Journal, 29(16), 1241-1250.
Purpose: To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS). Method: A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress. Results: The mean caregiver age was 54 years (range 37 - 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores. Conclusion: Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kirk, L. J., Hick, R., & Laraway, A. (2006). Assessing dementia in people with learning disabilities: The relationship between two screening measures. Journal of Intellectual Disabilities, 10(4), 357-364.
As life expectancy increases for people with learning disabilities, the impact of dementia on people with learning disabilities and their families, carers and services is becoming more apparent. Psychological services for learning disabilities are receiving an increasing number of referrals requesting dementia assessment. Health and social care services are adapting to the diverse needs of an ageing population with learning disabilities. This article describes a study investigating the relationship between two assessments for dementia in people with learning disabilities. Carers of people with learning disabilities over the age of 50 (or 40 if the individual had Down syndrome) completed the Dementia Questionnaire for Mentally Retarded People and the Adaptive Behaviour Scale-Residential and Community. Overall, the two questionnaire measures showed significant relationships. However, results suggested that both assessments have clinical value in informing individual needs and aiding diagnosis. Implications for both clinical and social care services are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Klein, R. E. (2007). The metaphor that sang its own sad song: Therapeutic storytelling in pediatric hospice care. Burns, George W, 199-209.
(from the chapter) This heartfelt story by Roxanna shows us the applicability of several types of metaphor in the context of home care nursing with a courageous young girl facing the prospect of death. Roxanna begins her work by asking the client's family to tell their stories, thus eliciting client-generated metaphors that enable them to explain their own understandings and perceptions of their current difficult circumstances. A second style of metaphor is the use of children's storybooks to present therapist-generated metaphors that parallel the child's problem and demonstrate potential means for coping. Third, using an experiential metaphor, Roxanna presents us with the challenge of what happens when the therapeutic intent of an intervention goes awry, with potentially untherapeutic consequences. What do you do when you give a dying child a pet bird to cheer it up only to find that the bird is dying, too? Among the many things this case clearly highlights is the value of listening carefully to clients, no matter how young, for the potential solutions they hold within themselves. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Knoche, L., Peterson, C. A., Edwards, C. P., & Jeon, H.-J. (2006). Child care for children with and without disabilities: The provider, observer, and parent perspectives. Early Childhood Research Quarterly, 21(1), 93-109.
This three-phase study, part of a larger study conducted by the Midwest Child Care Research Consortium (MCCRC), investigated the characteristics of child care providers in inclusive and non-inclusive center-based classrooms and family child care homes, the observed quality of care in a subset of these programs, and families' perceptions of quality and satisfaction with child care services. A telephone survey of 2022 randomly selected Midwestern providers, 36% of whom provided inclusive services, revealed that inclusive providers rated themselves higher on most quality-related indicators. Inclusion status was related to observed quality in family childcare homes (n = 132), with non-inclusive homes higher, while trends in the opposite direction were observed in preschool center-based classrooms (n = 112) but not in infant/toddler center-based classrooms (n = 105). Six percent of the 1325 parents surveyed reported parenting a child with a disability. These parents indicated less income, and more frequent changes in child care settings than other families, and reported the quality of their children's child care as good, particularly if center-based. Improved access to inclusive child care services and enhanced training opportunities related to serving children with disabilities and inclusion, especially for family child care providers, is recommended. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Knowlton, A. R., Arnsten, J. H., Gourevitch, M. N., Eldred, L., Wilkinson, J. D., Rose, C. D., et al. (2007). Microsocial environmental influences on highly active antiretroviral therapy outcomes among active injection drug users: The role of informal caregiving and household factors. JAIDS Journal of Acquired Immune Deficiency Syndromes, 46(Suppl 2), S110-S119.
Active injection drug users (IDUs) are at high risk of unsuccessful highly active antiretroviral therapy (HAART). We sought to identify baseline factors differentiating IDUs' treatment success versus treatment failure over time among those taking HAART. Interventions for Seropositive Injectors--Research and Evaluation (INSPIRE) study participants were assessed at baseline and at 6- and 12-month follow-ups. Multinominal regression determined baseline predictors of achieving or maintaining viral suppression relative to maintaining detectable viral loads over 12 months. Of 199 participants who were retained and remained on HAART, 133 (67%) had viral load change patterns included in the analysis. At follow-up, 66% maintained detectable viral loads and 15% achieved and 19% maintained viral suppression. Results indicated that those having informal care (instrumental or emotional support) were 4.6 times more likely to achieve or maintain viral suppression relative to experiencing treatment failure. Those who maintained viral suppression were 3.5 times less likely to live alone or to report social discomfort in taking HAART. Study results underscore the importance of micro-social factors of social network support, social isolation, and social stigma for successful HAART outcomes among IDUs. The findings suggest that adherence interventions for IDUs should promote existing informal HIV caregiving, living with supportive others, and positive medication-taking norms among social networks. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Knox, M., & Bigby, C. (2007). Moving towards midlife care as negotiated family business: Accounts of people with intellectual disabilities and their families "just getting along with their lives together". International Journal of Disability, Development and Education, 54(3), 287-304.
This study explores meanings of family care held by seven families that include a middle-aged adult with intellectually disability. In-depth interviews were conducted with members of each family-the person with intellectual disability, parents, siblings, and sibling spouses. Participants described care as simply getting on with their lives, as "Family Business", characterised by the conduct of well-understood tasks and routines. As such, all, including the person with intellectual disability, performed roles critical to the well-being of each other and the family as a whole. Family Business was underpinned by negotiated, albeit often implicit, rules that reflected family values and were amenable to changes in circumstances throughout the lifecycle. Future planning was perceived as a sensitive whole family issue. Interdependence among members was key to retaining family independence from formal services that were regarded as a "top up". Suggested is the importance of services adopting a relational approach to understanding family care and supporting future planning for middle-aged people with intellectual disabilities, rather than simply focusing on "older carers". (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Koinis-Mitchell, D. (2008). Commentary: Multiple risk models in pediatric research--Considering the context that shapes children's health. Journal of Pediatric Psychology, 33(8), 819-820.
Comments on an article by R. Everhart, B. Fiese and J. Smyth (see record 2008-11034-002). The authors move the field forward in offering an innovative approach to examining the context in which caregivers help to support children's illness management. Their findings showed that caregiver quality of life (QOL) was best accounted for by a quadratic approach: a nonlinear association of risk factors related to the family setting and illness status, rather than the summation of these factors. Several features of this study serve as examples of how pediatric psychology research can broaden the lens with which it assesses the context of pediatric functioning. The study focuses on two components of the family management process that are often overlooked; family processes and caregiver functioning. The authors' study reminds us of the scientific and clinical utility of multiple risk models employed in pediatric research. Multiple risk models offer an opportunity to more accurately capture the social realities of families' lives. There are several critical areas of inquiry to pursue for pediatric studies employing multiple risk indicators. More research is needed that specifies which risks in combination may be particularly important for specific psychological and health outcomes. Not all risk factors will pose as actual risks for all families and all outcomes. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Kolb, G. (2006). The relation between caregivers and autistic adolescents in dealing with social interconnectedness. Dissertation Abstracts International: Section B: The Sciences and Engineering, 66(10-B), 5724.
This investigation explored personality characteristics of persons who work well with autistic adolescents. A total of 201 adults, 87 men and 114 women, aged 21 to 69 years, volunteered to participate. They were sorted into three groups based on their experience working with adolescents as well as on recommendations from parents who identified successful caregivers of their autistic children and completed a brief screening questionnaire about the caregiver. The groups were (1) those identified to work well with autistic adolescents, (2) those who work with adolescents who have other disabilities, and (3) those who work with non-disabled adolescents. All participants completed the Hartmann Boundary Questionnaire, the Tellegan Absorption Scale (TAS), the Dissociative Experiences Scale (DES), the Marlowe-Crowne Social Desirability Scale (M-C SDS), and the Epstein Ego-Strength Scale (E-S). ANOVA tests of significance indicated differences between participant groups for each measure. Those who worked well with autistic adolescents on average exhibited 14.4% thinner personal boundaries (p < .001), 49.7% higher absorption (p < .001), and 54.1% greater dissociation (p < .003) scores than those who worked with the other types of adolescents. Thinner boundaries indicate sensitivity and openness, unusual empathy, and fluid thoughts and feelings. Thin boundaries in interpersonal relationships are permeable and allow closer communication. Those with thin boundaries typically involve themselves in relationships quickly and prefer less definite divisions in personal space. They prefer rules that are flexible. Higher absorption indicates highly focused, concentrated attunement with another person; a temporary alteration of a person's usual self which enhances empathetic participation. It includes an openness to experience emotional and cognitive alterations in a variety of situations. There is a heightened sense of attention which is impervious to distracting events. Dissociation involves dividing attention into two or more streams of consciousness, allowing a person to do more than one mental task at a time, It compartmentalizes experiences, identity, memories, and perceptions. Social desirability and ego-strength scores did not significantly differentiate the groups, although those who worked with autistic adolescents scored higher in social desirability and lower in ego-strength than those who worked with the other groups of adolescents. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Koocher, G. P. (2005). Caring moments: Diaries of a pediatric psychologist. NYS Psychologist, 17(3), 17-20.
Working with families during times of medical crisis can prove both intensely rewarding and emotionally draining. Excerpts from the personal journal of a pediatric psychologist working in a large urban children's hospital illustrate both the emotional highs and lows of working in such settings, as well as some of the countertransference issues clinicians encounter in the course of such work. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kuipers, E., Watson, P., Onwumere, J., Bebbington, P., Dunn, G., Weinman, J., et al. (2007). Discrepant illness perceptions, affect and expressed emotion in people with psychosis and their carers. Social Psychiatry and Psychiatric Epidemiology, 42(4), 277-283.
Background: Illness perception, a measure of illness representations developed from physical medicine, has recently been applied to psychosis. We investigated how illness perceptions relate to affect and expressed emotion (EE) in carer-patient dyads, particularly if their perceptions differed. Method: We interviewed 82 carer-patient dyads, after a relapse of psychosis. Carers were assessed for illness perceptions, distress, self-esteem and EE; patients for illness perceptions, depression, anxiety and self-esteem, in a cross sectional study. Results: Carers were more pessimistic than patients about illness persistence and consequences, and carers with low mood were particularly pessimistic about persistence and controllability. Discrepant views about illness consequences were related to greater anxiety, depression, and lower self-esteem in patients, while discrepant views on controllability were associated with greater distress, depression, and lower self-esteem in carers. Illness perceptions did not relate directly to EE. Conclusions: In this sample, meta-cognitive carer representations of illness in psychosis are related to negative affective reactions in carers, but not to EE. Resolving discrepant illness perceptions between carers and patients might provide a way of improving family reactions to the health threat of psychosis. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kumamoto, K., Arai, Y., & Zarit, S. H. (2006). Use of home care services effectively reduces feelings of burden among family caregivers of disabled elderly in Japan: Preliminary results. International Journal of Geriatric Psychiatry, 21(2), 163-170.
Background: Relatively few observational studies have been conducted on the impact of home care services on burden or other aspects of the caregiver's experience. Objectives: To examine whether the use of care services reduces the feelings of burden among family caregivers in Japan. Specifically, the study was aimed at testing the following three hypotheses: (1) The severity of impairment and the dementia among the disabled elderly increases the feelings of burden among family caregivers and the support from family members decreases burden: (2) the amount of services used by older people and their caregivers is affected by the severity of dementia and ADL deficiencies among the disabled elderly and the amount of support from family members: and (3) controlling for severity, the use of care services under the LTC insurance program serves to reduce the feelings of burden among family caregivers. Methods: A structural equation model using the data obtained from 82 pairs of community-dwelling disabled elderly and their principal family caregivers. The model included the following variables: age of the disabled elderly; the severity of ADL deficiency and behavioral disturbances; use of formal (public) care services; support from family members; and feelings of burden among family caregivers. Results: The structural equation model revealed that, after controlling for the effects of severity on service use, home care services effectively reduce feelings of burden among family caregivers. Conclusions: The findings suggest that care services provided under the LTC insurance have been successfully reducing burden among family caregivers in the study area. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kuo, C., & Operario, D. (2009). Caring for AIDS-orphaned children: A systematic review of studies on caregivers. Vulnerable Children and Youth Studies, 4(1), 1-12.
Caring for acquired immune deficiency syndrome (AIDS)-orphaned children is an emerging priority in public health and international development studies. This article presents the first known systematic review of the research literature on carers of AIDS-orphaned children. Twenty-nine studies of caregivers of AIDS-orphaned children were identified and assessed, the majority of which were conducted in the developing world. The main foci of these studies included identifying the individuals who were providing care, assessing the capacity of the extended family to care for rising numbers of AIDS-orphaned children, and exploring the process of care placement. Fewer studies examined the caregiving experience in depth, including challenges entailed by caring for AIDS-orphaned children and effects of orphan caregiving on caregivers' health and wellbeing. The article concludes with suggestions for future research which can guide policy and programming efforts. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kuraitis, V. (2007). Disease management and the medical home model: Competing or complementary? Disease Management & Health Outcomes, 15(3), 135-140.
For the past decade, US physicians have failed to embrace disease management (DM) approaches offered by private DM companies and health plans. Until recently, physicians have not offered an alternative, systematic approach to caring for patients with chronic illnesses and conditions. The medical home model has become the centerpiece of reforms proposed by associations that represent family medicine physicians (the American Academy of Family Physicians [AAFP]) and general internal medicine physicians (the American College of Physicians [ACP]). In February 2007, the AAFP and the ACP were joined by the American Academy of Pediatrics and the American Osteopathic Association in issuing joint principles for the patient-centered medical home. While the medical home model is promoted primarily as a comprehensive approach to primary care reform, there is one aspect where the medical home and DM overlap: care coordination. Medicare has been exploring alternative mechanisms to manage and reimburse chronic care and care-coordination activities. In 2003, the US Congress passed legislation to require pilot projects for chronic care improvement programs; the program implementing this legislation is Medicare Health Support (MHS). To date, very little information has been available about the progress of MHS projects. The three early announcements about MHS progress have not been encouraging: the expected financial results are not being achieved. In December 2006, Congress passed legislation authorizing the Medicare Medical Home Demonstration (MMHD) project. MHS and MMHD are directed at similar patient populations: high-cost, frail, elderly patients with multiple co-morbid conditions. The medical home concept being advanced by primary care physicians has the potential to be competitive with DM companies. Health plans that have built their own DM programs are more likely to be supportive of the medical home model. Do physicians have the ability to compete at providing care-coordination services? There are strong arguments suggesting 'no' and strong arguments suggesting 'yes'. While the medical home model is focused on primary care reform, its effect could be competitive to DM companies and others. The medical home model could affect the flow of hundreds of billions of dollars--money that over time might flow either to physicians or to private companies. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Kus, T., & Payne, H. (2009). Disabled children in foster care: A review of interventions that improve health outcomes for children and support carers. Burns, Claire, 67-73.
(from the chapter) This chapter examines the evidence base for effective interventions for children doubly in need, in that they are both disabled and living away from home. Children in foster care have well-recognized health, social, educational and emotional needs, but still suffer from the 'inverse care law' and are less able to access services to reverse these inequalities. Children living away from home are particularly vulnerable to changes in their home environment, social interactions, rules and boundaries, family and school contacts. Adaptation difficulties are common, particularly with regard to family norms and expectations, and communication of 'unwritten rules' and the situation may be compounded by placement breakdown. Children with disabilities have similar problems with health, social and educational deficits, invisibility to and poor access to services. The particular problems of disabled children in foster care merit specific attention because of the concurrence and magnification of these common difficulties. Children with disabilities require a range of care services. For practical reasons the present review will mainly focus on children with physical disabilities, developmental delay and learning difficulties. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Kuster, P. A., & Badr, L. K. (2006). Mental health of mothers caring for ventilator-assisted children at home. Issues in Mental Health Nursing, 27(8), 817-835.
The complex management of ventilator-assisted children cared for in the home can place emotional and mental strain on parents, in particular, mothers. The purpose of this study was to explore the relationships among functional status of the child, impact of ventilator-assistance on the family, coping, social support, and depression in mothers caring for ventilator-assisted children at home. Thirty-eight mothers participated in the study. Almost half of the mothers experienced depressive mood symptoms. Impact on family was positively related to depression and social support was inversely related to depression. In addition, social support was a significant predictor of depression. The findings show that the high demands related to the care of ventilator-assisted children can be a significant risk factor for poor mental health outcomes of those mothers providing care at home. Interventions by mental health and pediatric nurses should focus on enhancing mothers' coping skills and assisting mothers in accessing a positive social network to help mediate the stress related to caring for their child. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lach, L. M., Kohen, D. E., Garner, R. E., Brehaut, J. C., Miller, A. R., Klassen, A. F., et al. (2009). The health and psychosocial functioning of caregivers of children with neurodevelopmental disorders. Disability and Rehabilitation: An International, Multidisciplinary Journal, 31(8), 607-618.
Purpose. Children with neurodevelopmental disorders (Neuro) pose complex parenting challenges, particularly if the condition co-occurs with behaviour problems. Such challenges are likely to impact caregiver health and well-being. This study explores the extent to which caregivers of children with both Neuro and behaviour problems differ in their physical and psychosocial outcomes from caregivers of children with either condition or neither condition. Method. The first wave of data collected in the National Longitudinal Survey of Children and Youth in Canada (1994) was used to identify four groups of caregivers of 4- to 11-year-old children: caregivers of children with a Neuro disorder and externalising behaviour problems (Both; n=414), caregivers of children with a Neuro disorder only (Neuro Only; n=750), caregivers of children with an externalising behaviour problem only (Ext Only; n=1067), and caregivers of children with neither health condition (Neither; n=7236). Results. Caregivers in the Both group were least likely to report excellent or very good health, and more frequently reported chronic conditions such as asthma, arthritis, back problems, migraine headaches, and limitations in activities as compared to the Neither group. This group also exhibited higher depression scores, experienced more problematic family functioning and reported lower social support than the Neither group. Scores for caregivers in the Ext Only and Neuro Only groups tended to lie between the Both and Neither group scores and often did not differ from one another. Conclusions. Caregivers of children with both neurovelopmental disorders and behaviour problems exhibited a greater number of health and psychosocial problems. While addressing children's behaviour problems, health care professionals should also consider caregiver physical and psychosocial health, as this may also have an impact on children's well-being. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lam, L. T. (2008). Sleep disruptions and mental health of primary caregivers of persons with disability due to chronic mental and physical conditions in the Australian population. AeJAMH, 7(3), 1-10.
This study aimed to investigate the association between sleep disruption and the general mental health of caregivers of disabled people in Australia. It was hypothesised that greater sleep disruption would be associated with poorer mental health amongst caregivers. The study utilised data obtained from a national health survey of a stratified random sample, with the current sample consisting of 687 people living in a private dwelling who identified themselves as the primary caregiver of a person with a disability. In addition to information regarding their primary recipient of care and the broader impact of their caregiving role, sleep disruptions were assessed by responses to a direct question during a personal structured interview. General mental health of caregivers was assessed using the SF-12v2 Health Survey to classify their mental health to one of four linear categories, ranging from 'severe mental ill-health' to 'excellent mental health'. Data were analysed using multinomial logistic regression to cater for the multiple classifications of the outcome. After adjusting for potential confounding factors, results suggested a significant association between sleep disruptions and poor mental health among caregivers. Those who were frequently disrupted in their sleep were about 2.5 times more likely to experience severe mental ill-health (OR: 2.42, 95% CI = 1.28, 4.54) when compared to those whose sleep was not disrupted at all. There was no significant association between occasional disruptions and mental ill-health after adjusting for potential confounders. Results suggested that sleep disruptions can be considered as a potential risk factor for severe mental ill-health among caregivers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lancioni, G., O'Reilly, M., Singh, N., Sigafoos, J., Oliva, D., & Severini, L. (2008). Three persons with multiple disabilities accessing environmental stimuli and asking for social contact through microswitch and VOCA technology. Journal of Intellectual Disability Research, 52(4), 327-336.
Background: Direct access to environmental stimuli and opportunity to ask for social contact/attention may be considered highly relevant objectives for persons with multiple disabilities. We assessed the possibility of enabling three of these persons (two children and one adolescent) to combine two microswitches (for accessing environmental stimuli) and a Voice Output Communication Aid (VOCA), which allowed them to ask for caregiver's attention. Methods: Initially, the participants were required to use each of the two microswitches individually and then together. Thereafter, they were taught to use the VOCA. Eventually, the VOCA was available together with the microswitches, and the participants could use any of the three. Results: The results, which support preliminary data on this topic, showed that all participants (1) were able to operate the two microswitches as well as the VOCA; and (2) used all three of them consistently when they were simultaneously available. Conclusions: Teaching persons with multiple disabilities to combine a VOCA with conventional microswitches may enrich their general input, emphasize their active social role and eventually enhance their social image. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lancioni, G. E., Singh, N. N., O'Reilly, M. F., Sigafoos, J., Oliva, D., & Cingolani, E. (2009). Students with multiple disabilities using technology-based programs to choose and access stimulus events alone or with caregiver participation. Research in Developmental Disabilities, 30(4), 689-701.
The first of these two studies extended preliminary evidence on the use of technology-based programs for enabling students with severe and profound multiple disabilities to choose and access environmental stimuli on their own. Each of the three participants had two microswitches linked to specific sets of stimuli through a computer system. The activation of one of the microswitches triggered the computer system to present a sample of one of the stimuli. If the student chose it, the computer system turned it on for a specific time interval. The second study tested a new technology that allowed the students to choose and access the chosen stimuli with the involvement of the caregiver. The two participants had three microswitches linked to a computer system. The participants' choice of a stimulus alerted the caregiver who then got involved in the stimulation process. The results of both studies showed that the participants learned to activate the basic microswitches consistently, had high percentages of choice for the stimulus samples presented by the computer but with wide differences across stimuli, and largely maintained this performance at a 2-month post-intervention check. These findings were analyzed in terms of the usability of the two types of programs, the role they may play within educational and living contexts, and their innovative technical dimensions. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Land, H., & Hudson, S. M. (2004). Stress, Coping, and Depressive Symptomatology in Latina and Anglo AIDS Caregivers. Psychology & Health, 19(5), 643-666.
In a survey of 432 AIDS caregivers, we examined differences in the stress and coping process and predictors of depressive symptomatology by ethnicity and gender. Our sample included 192 Anglo gay and bisexual male partners, 86 Anglo women, and 154 Latina family caregivers. We examined differences in primary and secondary stressors as predictors of depression; differences in sociodemographic and background factors, and differences in the predictive value and mediating influences of factors that may attenuate the relationship between stress and depression. Results indicate substantial differences in predictors and mediators of depression across groups. While all groups evidenced moderate levels of depression, background factors influenced depression mostly for Latinas. Depression in gay and bisexual partners was more influenced by primary objective stressors such as assisting with activities of daily living (ADLs). Service acquisition appears to be shaped by access, knowledge, and cultural acceptance. Based on our findings, we suggest that service provision for caregivers must also vary and be attuned to cultural and gender differences that may influence perception of stress and depression for caregivers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lashlee, M., & Curry, J. O. H. (2007). Pediatric home chemotherapy: Infusing "quality of life". Journal of Pediatric Oncology Nursing, 24(5), 294-298.
A pediatric home chemotherapy program is described that has operated as part of the pediatric oncology services at the Children's Hospital at Montefiore since 2004. Currently the chemotherapy regimens include high-dose methotrexate; 5-day highdose ifosfamide and etoposide; cyclophosphamide, doxorubicin, and vincristine; ifosfamide, carboplatin, and etoposide; and cisplatin and doxorubicin. The pediatric hematology/oncology program provides care to children with blood disorders and cancer of Bronx, NY, and surrounding areas. By providing patients receiving chemotherapy treatment with this special type of home infusion capability, the child and his or her family are able to spend more time at home and have less disruption in their family schedule. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lathouwers, K., de Moor, J., & Didden, R. (2009). Access to and use of internet by adolescents who have a physical disability: A comparative study. Research in Developmental Disabilities, 30(4), 702-711.
The purpose of this study was to examine access to and use of Internet by 97 physically disabled adolescents. Four main objectives were to: (1) explore frequency and nature of Internet use and the role of care givers, (2) compare these results with non-disabled adolescents, (3) explore associations between access to and use of Internet and adolescents variables, and (4) examine differences between care givers in the guidance of adolescents concerning their Internet use. Outcomes on a questionnaire were compared to those from a control group consisting of 1566 non-disabled adolescents. No differences in access to Internet between physically disabled and non-disabled adolescents were found. In addition, the most common online activities were similar for both groups. Physically disabled adolescents were more often warned by their parents about the risks of Internet and more often had rules at home than their non-disabled peers. Among the group of physically disabled adolescents, gender and environmental setting were found to be related to online activities. In addition, age was found to be related to the amount of rules at home. No associations were found between IQ and the access to and use of Internet. Finally, parents of physically disabled more often warn adolescents and more often check their use of Internet than care staff. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Latour, J. M. (2005). A commentary on: "The importance of parental support when caring for the acutely ill child" by Wheeler. Nursing in Critical Care, 10(2), 63.
Comments on the article by M. J. Wheeler entitled "The importance of parental support when caring for the acutely ill child" (see record 2006-07687-001). The author notes that the epidemiology of critically ill children cared for in an adult intensive care unit (ICU) is not widely studied. In Wheelers' ICU, an average of 20 children are admitted yearly. Wheeler discussed that addressing parental needs is based on the nurses' individual perspectives. Therefore, she promoted to have adult critical care nurses trained in identifying parental needs and to be able to integrate these needs into daily practice while providing critical care support to the child. Essentially, this article contributes to critical care nursing in providing discussion on how to change practice to meet the needs of parents in an adult ICU. It is a way forward to family-centred care. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Lee, K., & Dupree, C. Y. (2008). Staff experiences with end-of-life care in the pediatric intensive care unit. Journal of Palliative Medicine, 11(7), 986-990.
The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the literature. This qualitative, descriptive study consisted of semistructured interviews conducted with professional caregivers of a child who died in a large, multidisciplinary PICU. Interviews were audiotaped, transcribed and subjected to content analysis. Main results Interviews (n = 32) were conducted with 29 staff members regarding 8 patient deaths. Participants included nurses, physicians, and psychosocial support personnel. The overall tone of the interviews was positive, and participants expressed satisfaction with their work and the work of their colleagues. The major themes of staff members experiences were (1) importance of communication, (2) accommodating the wishes of others despite personal preferences, (3) ambiguity about the use of technology, (4) sadness, and (5) emotional support. Descriptions of moral distress were seen infrequently. Many welcomed the sadness they experienced as a sign of their humanity and emotional availability, but did not feel adequately supported in dealing with their grief. Conclusions The experience of caring for a child who dies in the PICU is multifaceted. Grief, rather than moral distress, was the dominant psychological response of caregivers. Future research could focus on enhancing communication and emotional support. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lee, M. (2008). Caregiver stress and elder abuse among Korean family caregivers of older adults with disabilities. Journal of Family Violence, 23(8), 707-712.
This study aims to identify risk factors and mediating factors of elder abuse among older adults with disabilities being cared for by their family caregivers. The data were based on a sample of 1,000 primary family caregivers from the Comprehensive Study for the Elderly Welfare Policy in Seoul (2003). Hierarchical regression analysis was conducted to identify significant indicators for the degree of elder abuse, such as cognitive impairment, functional ability (ADL), caregiving involvement, economic strain, caregiver burden, and social support for the degree of elder abuse. In the full model, ADLs, cognitive problems, economic strain, caregiver burden, informal social support, and formal social support were significantly associated with elder abuse. The findings suggest that psychosocial support services and programs for family caregivers are needed to prevent and reduce the prevalence of elder abuse in South Korea. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lee, M., Yoon, E., & Kropf, N. P. (2007). Factors affecting burden of South Koreans providing care to disabled older family members. International Journal of Aging & Human Development, 64(3), 245-262.
This study examined the determinants of caregiving burden among South Koreans who care for their disabled older family members. A sample of 1,000 primary caregivers taken from the Comprehensive Study for Elderly Welfare Policy in Seoul, South Korea was analyzed. Independent variables included the demographic characteristics of caregivers and care recipients, the severity of cognitive impairment among care recipients, care recipients' functional abilities, financial adequacy and caregivers' degree of social support. Hierarchical regression was used to predict the levels of caregivers' burden. Similar to western care providers, South Korean caregivers who were in poor health and who had little informal social support, inadequate financial resources and more weekly caregiving hours were more likely to experience intense caregiving burden. Burden was also positively related to the functional and cognitive disabilities of care recipients. The results of this study indicate that certain aspects of caregiving are unique to South Koreans. Daughters-in-law were the most common caregiver within the sample which indicates that South Korean eldercare is non-consanguineous. Identifying predictors of South Korean caregivers' burden promotes a more comprehensive understanding of cultural experiences in caring for older adults. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lee, O. K. E., & Johnston, L. (2005). A Systematic Review for Effective Management of Central Venous Catheters and Catheter Sites in Acute Care Paediatric Patients. Worldviews on Evidence Based Nursing, 2(1), 4-13.
Background: Central venous catheters (CVCs) have provided many benefits in modern-day medical practice; however, they also put patients at risk of catheter-related complications. Numerous studies have been carried out in relation to the management of central venous catheters with conflicting results. While there were several systematic reviews of central venous catheter-related issues, it is clear that there was no systematic review of CVC-related studies specific to the paediatric population in the acute care setting. Objective: To present the best available evidence for effective management of central venous catheters and catheter sites in the prevention and/or reduction of catheter-related complications in hospitalised paediatric patients. Methods: A systematic review was undertaken according to the approach of the Centre for Reviews and Dissemination (CRD; http://www.york.ac.uk/inst/crd). Data Source: Literature was identified by electronic searching of Cochrane Library, MEDLINE, CINAHL, HealthSTAR, and CancerLit; checking references of all review articles; hand searching of key relevant journals and conference proceedings; and contact with expert informants, medical suppliers, and pharmaceutical companies. Inclusion/Exclusion Criteria: The review included randomised and non-randomised controlled trials conducted with hospitalised paediatric patients. Studies that included mixed adult and paediatric populations and mixed hospitalised and home care settings were excluded. Data Extraction: Two independent reviewers extracted data onto a standard data extraction form, with differences resolved by discussion. Quality Assessment: The quality assessment of retrieved studies included: study design, the degree to which systematic bias was avoided or minimised, the degree to which the assessment was "blind," the degree to which follow up was completed. Data Synthesis: Quantitative pooling of studies was not feasible due to the diversity of interventions and outcome measures between similar studies. A narrative account of the study characteristics and results was therefore undertaken. Results: Thirty-eight randomised and quasi-randomised controlled trials were retrieved for critical appraisal. Of these, 32 were excluded from the review because the studies did not meet the inclusion criteria and some lacked reporting of appropriate data. Six studies met the criteria with interventions such as antibiotic flushes, antiseptic skin preparations, and dressing materials. Conclusion: Quality of reporting was generally lacking. Statistical pooling of results was not possible due to diversity in the reporting of outcomes. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lee, S., Kawachi, I., & Grodstein, F. (2004). Does Caregiving Stress Affect Cognitive Function in Older Women? Journal of Nervous and Mental Disease, 192(1), 51-57.
Increasing numbers of women provide care to their ill spouses; however, no studies have examined possible effects of caregiving stress on cognitive function. We administered 6 tests of cognitive function to 13,740 Nurses' Health Study participants aged 70-79 years. We collected information on caregiving and numerous potential confounding variables via biennial mailed questionnaires. After adjustment for potential confounders (age, education, mental health index, vitality index, use of antidepressants, and history of high blood pressure, diabetes, and heart disease), we found modest but significantly increased risks of low cognitive function on three of the cognitive tests among women who provided care to a disabled or ill spouse compared with women who did not provide any care. For example, on the TICS, a test of general cognition, the risk of a low score was 31% higher in women who provided care compared with women who did not (RR = 1.31, 95% CI 1.10, 1.56). We found a moderately increased risk of poor performance on several cognitive tests among women who provided care to their disabled or ill husbands. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Leonard, E. (2009). Attachment, depression, and medication in adolescents with HIV infection. Dissertation Abstracts International Section A: Humanities and Social Sciences, 69(10-A), 4126.
The medicine that kept infants born with HIV alive is now threatening their existence in adolescence. Antiretroviral medications decrease in efficacy and boost the virus if not taken nearly perfectly (Van Dyke et al., 2000; Murphy et al., 2001, 2003; Dolelzal et al., 2003; Mellins et al., 20003). Attachment issues are common in this population due to maternal depression, addiction, and death (Mellins et al., 2005). Research indicates that attachment trauma contributes to depression and depression prompts non-adherence (Elliott, 2001; Malee et al., 2004; Rabkin & Chesney, 1999). Using a mixed methodology approach this study analyzes adherence, attachment histories, and level of depression in a randomly selected sample population of 20 perinatally HIV infected adolescents ages 14 to 18. The limitation of this study is its small sample size. The results of this study support the relationship between attachment, depression, and non-adherence in adolescents. A statistically significant correlation is found between the subject's quality of paternal attachment and their quality of peer attachment: r=.566, p < .01. This relationship indicates a child's early paternal attachment significantly impacts their overall psychological health in adolescence and their ability to be adherent to medication regimes. An additional statistically significant relationship is found between depression and adherence: t=-2.103, p=.05. The psychopathology that emerges from early attachment trauma impacts the subjects' current ability to tolerate medication regimes and trust the medical team. Conversely, adherent subjects have a secure attachment style, as indicated by their caregiver/child's early attributions and shared memories. This study concludes that attachment relationships and depression significantly impact an adolescent's ability to be medication adherent. Participation in individual, family, and group psychotherapy to address early trauma seems to be critical for this population. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Leslie, L. K., Gordon, J. N., Lambros, K., Premji, K., Peoples, J., & Gist, K. (2005). Addressing the Developmental and Mental Health Needs of Young Children in Foster Care. Journal of Developmental and Behavioral Pediatrics, 26(2), 140-151.
Research over the past two decades has consistently documented the high rates of young children entering the child protective services/child welfare system with developmental and mental health problems. There is an emerging evidence base for the role of early intervention services in improving outcomes for children with developmental and mental health problems in the general population that heavily relies on accurate and appropriate screening and assessment practices. The Child Welfare League of America, the American Academy of Pediatrics, and the American Academy of Child and Adolescent Psychiatry have all published guidelines concerning the importance of comprehensive assessments and appropriate referral to early intervention services for children entering out-of-home care. Recent federal legislation (P.L. 108-36) calls for increased collaboration between child welfare and public agencies to address the developmental and mental health needs of young children in foster care. This paper provides a framework for health, developmental, and mental health professionals seeking to partner with child welfare to develop and implement programs addressing these critical issues. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Li, L. W. (2005). Longitudinal Changes in the Amount of Informal Care Among Publicly Paid Home Care Recipients. The Gerontologist, 45(4), 465-473.
Purpose: This study examined how the amount of informal care received by disabled elders changes when they are receiving publicly paid home care, and whether formal service use, disability, caregiving arrangements, and demographic characteristics of older adults predict changes in the amount of informal care. Design and Methods: Hierarchical linear models were estimated, using 3-year data (12 repeated observations) collected from elderly participants (N = 888) in Michigan's Home- and Community-Based Medicaid Waiver Program. Results: The amount of informal care declined in the beginning period when publicly paid home care was received, and then it stabilized. Changes in activities and instrumental activities of daily living and caregiver residence predicted changes in the amount. The living arrangement and age of elders predicted different patterns of change over time. Neither formal service amount nor its change significantly predicted the amount of informal care. Implications: Informal caregivers do not relinquish caregiving when publicly paid home care is available. Expanding community-based long-term care is a means of fostering partnerships between formal and informal caregivers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Li, Y. (2008). Private long-term care insurance and patterns of care use among older adults. Dissertation Abstracts International Section A: Humanities and Social Sciences, 68(9-A), 3985.
This dissertation looks at private long-term care insurance (LTCI) and its effects on the use of long-term care (LTC) services among disabled older adults. This study contributes to the literature in three ways. First, in order to provide an integrated picture of care use, I systematically quantify the effects of LTCI on three major types of LTC, namely, nursing home care, formal home care, and informal care. Second, to obtain consistent estimates, I explicitly address the endogeneity of LTCI purchases in all models. Finally, I address these issues with the most recent and nationally representative data from the Health and Retirement Study (HRS). The results from this dissertation suggest that LTCI significantly changes the patterns of care utilization. LTCI decreases the probability of entering a nursing home, and increases the use of formal home care. In the meantime, the level of informal care is maintained rather than reduced. Based on these findings, LTCI allows elders to avoid or at least postpone nursing homes, and encourages the use of formal home care, which is a less costly alternative to institutional care. Public policies aimed at promoting LTCI should have the expected effects of correcting the institutional bias and reducing the cost pressure on Medicaid, if they are well targeted at the middle-income population who would otherwise spend down to qualify for Medicaid payments. By directing resources to formal home care without discouraging family care-giving, LTCI helps reduce unnecessary nursing home stays, and more efficiently finance LTC services. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Liebel, D. V., Friedman, B., Watson, N. M., & Powers, B. A. (2009). Review of nurse home visiting interventions for community-dwelling older persons with existing disability. Medical Care Research and Review, 66(2), 119-146.
Despite there being a considerable number of meta-analyses and reviews synthesizing the nurse in-home visiting literature, there have been no reviews examining nurse in home visiting for patients who are already disabled. This article presents a literature review and synthesis of 10 trials targeted on older adults with disability. The review is organized into structure and process components related to the outcome variable disability based on the classic Donabedian model. The review suggests that the components of in-home visiting associated with favorable disability outcomes include multiple home visits, geriatric training and experience, health provider collaboration, multidimensional assessment, and theory use. In contrast, lack of process measures, physician collaboration, training, and specific intervention components targeting disability are associated with ineffective interventions. This review helps provide insight into variables that influence disability outcomes as well as the development of best-practice models of in-home visiting to older adults with existing disability. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lin, K.-N., Liao, Y.-C., Wang, P.-N., & Liu, H.-C. (2005). Family members favor disclosing the diagnosis of Alzheimer's disease. International Psychogeriatrics, 17(4), 679-688.
Background: Past negative attitudes towards patients with Alzheimer's disease (AD) have changed in recent years. However, the disclosure of AD diagnosis to patients and family remains an unresoved issue. In this study, we surveyed the family members of neurological patients in Taiwan for the purpose of assessing their attitudes towards the disclosure of AD diagnosis. Methods: The study sample consisted of family members (150, age range 23- 89 years, mean 55.0 +or- 14.3) who accompanied patients to a neurology outpatient clinic from September 15 to November 24, 2003. The subjects were given an Attitude Questionnaire on AD Disclosure. Results: An overwhelming majority (93%) of subjects favored disclosure of the diagnosis if, hypothetically, they personally were affected by AD. However, a smaller majority of family members (76%) favored disclosure of the diagnosis to current AD patients. Reasons for favoring disclosure included a patient's or family member's right to know, the possibility of assistance in coping with and understanding dementia, and slowing down the progression of the disease by early treatment, as well as the increased probability of accepting treatment and life activity training. Reasons for favoring the withholding of disclosure included the risk of causing the patient emotional disturbance, worsening the disease, the irrelevance of disclosure to drug therapy, and the possibility of causing suicidal ideation. Subjects' attitudes towards disclosure of AD diagnosis were unaffected by their knowledge of dementia, the presence of a family member with AD, their role as the primary caregiver, the length of time that AD symptoms persisted, and the number of hours per day spent in caring for AD patients. Conclusions: In Taiwan, family members of neurological patients strongly favor being informed and the disclosure of AD diagnosis to the family. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Llewellyn, G., Gething, L., Kendig, H., & Cant, R. (2004). Older parent caregivers' engagement with the service system. American Journal on Mental Retardation, 109(5), 379-396.
Older parents of adults with intellectual disability are reported to be frequently isolated from the services designed to support their caregiving. The interaction between older parent caregivers' biographies and their involvement with the service system was examined. Parental status was predicted to be an explanatory mechanism for understanding the differential nature of their engagement with services. Analysis of interviews with 64 such care-givers of adults with intellectual disability revealed that their perceptions of their parental status were derived from a complex interaction of their values and beliefs, actions in relation to their adult child, constraints as well as resources available to them, and their relationships with service agencies. Implications for service delivery and directions for research are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
LoGiudice, D., & Hassett, A. (2005). Uncommon dementia and the carer's perspective. International Psychogeriatrics, 17(Suuppl1), S223-S231.
There is much caregiving literature describing factors that affect carer burden, and interventions that may be useful for carers of those with common dementias such as Alzheimer's disease (AD). By contrast, relatively little information and few data are available on potentially diverse issues facing carers of those with uncommon dementias, such as frontotemporal dementia (FTD), Huntington's disease (HD) and human immunodeficiency virus (HIV) dementia. This paper highlights particular characteristics of caregiving for those with uncommon dementias, and the unique needs that may arise for this group of carers who often "fall between the net" of services and supports available. Further research into this area is required. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Longden, J. V., & Mayer, A.-P. T. (2007). Family involvement in end-of-life care in a paediatric intensive care unit. Nursing in Critical Care, 12(4), 181-187.
End-of-life care (ELC) on a paediatric intensive care unit (PICU) is a fundamental aspect of clinical practice and yet often remains a highly emotive and challenging issue. Every year, many children die in PICU often following the withdrawal of life-sustaining treatment, and as health professionals we have a duty to provide ELC that meets the needs of the dying child and their family. To achieve this, there is a growing emphasis on incorporating parental views on withdrawal of intensive care especially in time and place. Home care of the dying child enables the child to die at home in familiar surroundings and with the people who love them the most. This service is essentially child centred and acknowledges the unique and pivotal position that parents have in their child's life by empowering them to have control over the time and place of death. This is a vitally important aspect of end-of-life in PICU and underpins the ethos of this area of practice. We present a series of case reviews of patients cared for within a 12-month period, where intensive care was withdrawn distant from the PICU environment and address the challenges and considerations surrounding this area of practice. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lundstrom, M., Astrom, S., & Graneheim, U. (2007). Caregivers' experiences of exposure to violence in services for people with learning disabilities. Journal of Psychiatric and Mental Health Nursing, 14(4), 338-345.
Exposure to violence is a commonly encountered problem in services for people with learning disabilities; Swedish studies have reported that 51-61% of caregivers are exposed to violence each year, and caregivers describe violence as being a 'normal' part of their working life. To illuminate the experience of being exposed to violence, we performed 50 narrative interviews with 44 caregivers working in services for people with learning disabilities. The tape-recorded interviews were transcribed verbatim and subjected to qualitative content analysis. The main findings indicate that caregivers' experiences of being exposed to violence can be related to two themes: falling apart, and keeping it together. Falling apart includes feelings of fear, powerlessness, sadness, anger and timelessness, while keeping it together concerns pleasure, respect, self-reflection and habituation. Destructive experiences of falling apart are balanced by a more constructive view of the situation, with the aim of respecting the resident as a whole person, and keeping the situation, and the caregivers themselves, together. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Lundstrom, M., Saveman, B.-I., Eisemann, M., & Astrom, S. (2007). Prevalence of violence and its relation to caregivers' demographics and emotional reactions - An explorative study of caregivers working in group homes for persons with learning disabilities. Scandinavian Journal of Caring Sciences, 21(1), 84-90.
The aim of the study was to investigate the prevalence of violence directed towards caregivers working in group homes for persons with learning disabilities, and to examine the relation between violent incidents and caregivers' demographics such as gender, age, years in service, years at the present workplace and education, as well as emotional reactions to violence expressed by the caregivers. A questionnaire was distributed to all caregivers, i.e. Registered Nurses, assistant nurses and nurse's aides, working in group homes for persons with learning disabilities. The results showed that 31% of the caregivers (n = 120) had been exposed to violence during the preceding year with physical violence being the most common type of violence. All categories of caregivers were exposed to violence and emotional reactions were common. Weak relations were found between reported exposure to violence and various demographics among caregivers, such as age and education. Daytime work was the only independent factor in a regression model predicting violence towards the caregivers. Feelings of powerlessness, insufficiency and anger were the most frequently reported emotional reactions elicited by violent situations. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Magana, S., & Smith, M. J. (2006). Health Outcomes of Midlife and Older Latina and Black American Mothers of Children With Developmental Disabilities. Mental Retardation, 44(3), 224-234.
The impact of caring for a child with a developmental disability on the physical and mental health of Latina and Black American women was examined. We used the National Health Interview Survey to compare the health of older mothers who were co-residing with a child who had a developmental disability to the health of same age mothers without caregiving responsibilities. Findings show that for both groups, older adult caregivers were more likely to report having limitations from arthritis than their noncaregiving counterparts. Caregiving was associated with more depressive symptoms for Latinas, but this relationship was not found for Black American women. Findings suggest that physical and mental health of caregivers need more attention in research and practice. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Magana, S., & Smith, M. J. (2008). Health behaviors, service utilization, and access to care among older mothers of color who have children with developmental disabilities. Intellectual and Developmental Disabilities, 46(4), 267-280.
This study examined health behaviors, utilization, and access to care among older Latina and Black American mothers who co-reside with a child with developmental disabilities. Using data from the National Health Interview Survey National Center for Health Statistics, we compared Latina and Black American caregivers to similar women who did not have caregiving responsibilities. Findings showed that Latina caregivers were more likely to smoke and have insurance; Black American caregivers were less likely to be able to afford medication and mental health care; and both groups were less likely to have seen a doctor in the past year than their noncaregiving counterparts. Findings suggest that service providers should consider developing programs that focus on health for caregivers of color. Furthermore, results suggest that providers should take into account differing trends across ethnicities when designing programs. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Mahoney, G. (2007). Cognitive rehabilitation. Rondal, Jean Adolphe, 90-106.
(from the chapter) In this chapter, we describe an approach to rehabilitating the cognitive functioning of young children with disabilities that is associated with the cognitive strategy tradition. In this approach parents or primary caregivers are taught to use responsive interaction strategies as a means to promote their children's use of the pivotal behaviors that are the foundations for cognitive and other forms of developmental learning. This rehabilitation approach evolved from a research study we conducted that involved a large sample of children with Down syndrome. Results indicated that children's rate of mental development was strongly associated with the degree to which parents engaged in responsive interactions with them. The Pivotal Behavior Model of Development is proposed to explain this effect. This model asserts that the influence of parental responsiveness on children's development is mediated by the impact that responsiveness has on children's use of the learning processes or strategies that are the foundations for developmental learning, which we refer to as pivotal behaviors. Finally we describe the Responsive Teaching curriculum that we developed to evaluate this approach to rehabilitation. A one-year evaluation of this curriculum indicated that it was highly effective at enhancing the cognitive and language development of children with a wide range of developmental disabilities including Down syndrome. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Majumdar, B. (2004). An Exploration of Socioeconomic, Spiritual, and Family Support Among HIV-Positive Women in India. JANAC: Journal of the Association of Nurses in AIDS Care, 15(3), 37-46.
Through in-depth, tape-recorded interviews, this qualitative pilot study explored the feelings and concerns of 10 HIV-positive women, aged 18 to 70 years, and the socioeconomic, spiritual, and family support available to them in Kolkata, India. A qualitative approach of continuous comparative analysis of themes revealed that although heterosexual contact was the main source of infection, poverty and sexual violence were indirect social factors. These women experienced markedly less socioeconomic, spiritual, and family support after contracting the disease. In addition to worsening physical symptoms, emotional and mental anguish forced them into isolation, negatively affecting their mental health. Social isolation infiltrated their spiritual lives, producing feelings of helplessness about the future of their children. The identification of this process is important to nursing practice, as it highlights key areas of concern in the implementation of prevention programs and future research. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Malee, K., Williams, P. L., Montepiedra, G., Nichols, S., Sirois, P. A., Storm, D., et al. (2009). The role of cognitive functioning in medication adherence of children and adolescents with HIV infection. Journal of Pediatric Psychology, 34(2), 164-175.
Objective: To evaluate the relationship between cognitive functioning and medication adherence in children and adolescents with perinatally acquired HIV infection. Methods: Children and adolescents, ages 3-18 (N = 1,429), received a cognitive evaluation and adherence assessment. Multiple logistic regression models were used to identify associations between adherence and cognitive status, adjusting for potential confounding factors. Results: Children's average cognitive performance was within the low-average range; 16% of children were cognitively impaired (MDI/FSIQ < 70). Cognitive status was not associated with adherence to full medication regimens; however, children with borderline/low average cognitive functioning (IQ 70-84) had increased odds of nonadherence to the protease inhibitor class of antiretroviral therapy. Recent stressful life events and child health characteristics, such as HIV RNA detectability, were significantly associated with nonadherence. Conclusion: Cognitive status plays a limited role in medication adherence. Child and caregiver psychosocial and health characteristics should inform interventions to support adherence. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Marhefka, S., Farley, J., Rodrigue, J., Sandrik, L., Sleasman, J., & Tepper, V. (2004). Clinical assessment of medication adherence among HIV-infected children: Examination of the Treatment Interview Protocol (TIP). AIDS Care, 16(3), 323-337.
This paper presents findings of a multi-site study designed to document: (1) caregivers' regimen knowledge; (2) barriers to adherence; and (3) the relationships between adherence, regimen knowledge and barriers. Fifty-one predominately female, African American parents and caregivers of HIV-infected children completed the Treatment Interview Protocol (TIP), a brief, structured interview designed to assess regimen knowledge and barriers to adherence. Forty-nine per cent of children were considered adherent, defined as >= 90% refill rate, which was significantly associated with virologic response. Significant regimen knowledge deficits were observed among caregivers, and inaccurate identification of prescribed medications was significantly associated with adherence. Caregivers identified 21 barriers to adherence, and poor adherence was significantly related to the number of barriers reported. Results indicate that the TIP is a successful tool for identifying regimen knowledge, potential adherence barriers and adherence problems. Results suggest that the TIP could be integrated into clinical practice as a quick, effective tool to identify poor adherers and guide interventions and treatment decision making. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Marhefka, S. L., Tepper, V. J., Brown, J. L., & Farley, J. J. (2006). Caregiver Psychosocial Characteristics and Children's Adherence to Antiretroviral Therapy. AIDS Patient Care and STDs, 20(6), 429-437.
Although parents and caregivers may have primary responsibility for their children's medication- taking, surprisingly few studies have examined caregiver psychosocial correlates of children's adherence to antiretroviral therapy (ART). This cross-sectional, descriptive study examined the relationship between caregiver psychosocial characteristics and medication adherence among children with HIV. Fifty-four caregivers of children with HIV completed a demographic questionnaire, the Parenting Stress Index, the Brief Symptom Inventory, the Family Support Scale, and the Support Functions Scale. Adherence to ART was measured with children's 6-month pharmacy refill histories. Children and caregivers were primarily African American, urban, and poor (63% reported <$15,000 annual household income). Univariate analyses showed that an adherent classification (>=80% refill rate) was associated with shorter duration of highly active antiretroviral therapy (HAART) treatment, nondisclosure of the HIV diagnosis to the child, lower caregiver income level, having a nonbiologically related caregiver, and less caregiver psychiatric distress. In a multivariate logistic regression, duration of child's HAART treatment, child HIV disclosure status, caregiver income, and caregiver psychiatric distress accounted for 63% of the variance in adherence. Findings highlight the complexity of children's adherence to ART and the need for multicenter studies with greater sample sizes to explore in more detail the effects of caregiver psychological distress and child HIV disclosure status on adherence as well as the ways in which regimen fatigue and adherence fluctuate over time. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Marin, T. J., Holtzman, S., DeLongis, A., & Robinson, L. (2007). Coping and the response of others. Journal of Social and Personal Relationships, 24(6), 951-969.
This cross-sectional study examined spouse responses to partners' coping among 84 parents (29 couples and 26 individuals) of children with disabilities. Participants completed questionnaires regarding coping with caregiving and psychological distress. Further, participants completed a Response of Others Scale in which they rated spouses' responses to their coping as positive, negative, or neutral. Findings from multilevel modeling suggested that positive responses to coping amplified the benefits of relationship-focused coping, and attenuated the negative effects of maladaptive coping strategies on distress. Cognitive restructuring was associated with lower levels of distress in the context of positive responses, but with greater distress in the context of negative responses. Findings suggest the utility of assessing the response of others in coping research. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Markov, Y. (2004). Predictors of medication adherence in children with HIV: The role of caregiver health beliefs. Dissertation Abstracts International: Section B: The Sciences and Engineering, 64(10-B), 5224.
Objective. Caregiver cognitions are important predictors of medication adherence in pediatric chronic illness, yet this relationship has been minimally investigated among caregivers of HIV-infected children. This study tested the predictive utility of the Health Belief Model for antiretroviral medication (ARV) adherence in a pediatric sample, and explored potential moderator effects of caregiver psychological distress and perceived social support. Method. Forty-eight primary caregivers of children (ages 3 to 12, 60% female, 94% African-American) receiving treatment for perinatal HIV infection and currently prescribed ARVs participated. Eighty-three percent of children were taking three ARVs, mean CD4 percentage was 31, and HIV viral load was 18,746.90 copies/ml. Caregivers completed measures of perceived vulnerability, benefits, barriers to adherence, psychological distress, and perceived social support. Medication adherence (defined dichotomously) was assessed via caregiver self-report (3-day and long-term (1 to 6 months)) and provider ratings (long-term). Results. Concordance between caregiver and provider long-term adherence ratings was poor (75 vs. 44% of children were adherent according to caregivers and providers, respectively), and only provider nonadherence estimates were associated with higher viral load, t(26) = 2.00, p = .06. The relationship between perceived benefits and ARV adherence was not supported. Based on provider ratings, younger caregiver age predicted long-term nonadherence (2 change = 9.91, p < .05, R2L = .15). Caregivers who reported higher levels of psychological distress were more likely to rate themselves as nonadherent over the long-term (2 change = 9.76, p < .05, R2L = .18). Perceived vulnerability was associated with 3-day adherence ( 2 change = 4.82, p < .05, R2 L = .10) and social support moderated the effect of perceived vulnerability on long-term adherence (2 change = 3.84, p = .08, R2L = .07). The distress, vulnerability, and social support findings were only corroborated by caregiver report. Conclusion. Providers reported alarmingly high rates of nonadherence and this was associated with poor virologic outcome. Caregivers' age, perception of the child's disease risk, and the caregivers' own mental health appear to be critical determinants of children's medication-taking behavior, despite differential support by caregivers and providers. The presence of adequate support from others appears to facilitate adherence, despite perception of significant disease risk. Adherence interventions should target younger caregivers, address potentially modifiable psychosocial variables, such as helping caregivers manage their psychological distress and enhance social support, as well as continue to educate caregivers about HIV-related risks. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Martin, A. (2006). Off-Season Events. Child and Adolescent Psychiatric Clinics of North America, 15(3), xiii-xv.
Children are not meant to suffer. Children in pain, children in clinical settings away from family, peers, and school, and children who die all violate our notion of childhood--and theirs. The field of pediatric palliative medicine has risen in response to the unique needs of these children and their caregivers. Families and clinicians involved with children with life limiting illness face complex and inevitable questions. These include whether and when to use life-prolonging interventions that may not necessarily result in an improved quality of life. Communication and decision making options around pain and symptom management are at the forefront of the care of children facing life limiting illness. Pediatric palliative care has taken an assertive position on the centrality of these issues, whether or not full recovery is in the cards. Indeed, the movement as a whole may be conceptualized as an active response to the inevitability of a child's death, a distinct counterpoint to an earlier stance of seeing the phases of grief, loss, and bereavement unfold, while offering little beyond words of comfort. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Martin, L., Miranda, B., & Bean, M. (2008). An exploration of spousal separation and adaptation to long-term disability: Six elderly couples engaged in a horticultural programme. Occupational Therapy International, 15(1), 45-55.
The main objective of the present study was to explore the impact of separation on couples where one spouse lives in a skilled nursing facility and the other spouse lives alone in the community. Six couples participated in a 10-week gardening group. Semi-structured interviews were conducted at the beginning of the study and observations were made and discussions engaged through the 10-week horticultural program. Thematic analysis of interviews and discussions revealed reduced social participation of community-dwelling spouses in an effort to maintain their marital role. In one or more cases the non-institutionalized spouse adapted to separation by developing social roles and relationships within the skilled nursing facility and continuing as a caregiver to their spouse. Occupational therapists are encouraged to include spouses in program to nurture healthy spousal roles. Further research is needed to explore how elderly couples may support each other through purposeful occupation while one spouse is in a long-term care facility. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Martin, R. P., & Dombrowski, S. C. (2008). Prenatal exposures: Psychological and educational consequences for children. 284.
(from the cover) Children are being diagnosed with psychopathologies at alarming rates. Not surprisingly, their behavioral and educational outcomes are increasingly compromised. The financial costs of treating childhood disabilities are spiraling out of control, and the emotional and social toll on students, families, schools, the penal system, and society as a whole is staggering. With proper care during pregnancy, medical professionals can now help expectant mothers prevent many physical birth defects. But prevention and intervention techniques remain elusive for abnormal fetal development that manifests later in life as behavioral problems. Researchers in the field of behavioral teratology continue to search for answers--prevention and intervention techniques--that will lead to improved behavioral and education outcomes for children. In this first compendium in the growing literature of behavioral teratology, readers will discover an easy-to-access, concise presentation that: 1. Synthesizes important findings that help explain why prenatal events may result in abnormal behavior and learning disabilities later in life. 2. Examines the role of prenatal perturbations, along with genetics and the postnatal roles of caretakers and the social environment, in light of how each may--individually or together--contribute to conditions as varied as dyslexia, schizophrenia, fetal alcohol syndrome, and autism. 3. Ensures that effective prevention and intervention can occur during the prenatal phases of development. 4. Addresses the research needs in behavioral teratology that are likely to lead to discoveries that may ensure the birth of healthier babies who develop normally across the lifespan. 5. Provides a brief medical glossary that details terminology specifically related to fetal development and birth. With its multidisciplinary approach, this volume is a must-have resource for clinical child and school psychologists; educational professionals; medical practitioners; social workers and counselors as well as researchers and graduate students in these areas. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Marx, R. (2007). Providing Care to Our Graying Population. PsycCRITIQUES, 52(16), No Pagination Specified.
Reviews the book, Handbook of Social Work in Health and Aging edited by Barbara Berkman (see record 2006-04200-000). This book will be an excellent teaching resource for bachelor's and master's social work classes in geriatric assessment, interventions, resource networks, therapy, advocacy, policy, international social work, and research. At the end of the semester, this volume will probably not show up on "texts for sale" posters; instead, it is likely that students will keep this volume and use it often in their social work practice. This comprehensive volume was designed as an all-inclusive reference text. It includes multiple sections, each edited by a section editor, and 100 original chapters on geriatric social work practice with chronic physical and health conditions (e.g., cancer, developmental disabilities, functional disability, and HIV); mental health problems (dementia, substance abuse, suicide, mental illnesses); special populations (poverty, immigrant, prisoners, and mistreated and neglected); cultural diversity (African American, Asian, Latino, Native American, lesbian, gay, bisexual, and transgendered [LGBT], and other minority groups); palliative and end-of-life care; family, caregiver, and intergenerational practice; practice settings (hospitals, long-term care facilities, home care, welfare, case management, hospice, senior centers, substance abuse and community mental health, and managed care companies); and the types of social services available (case management, counseling, caregiver supports, advocacy, and services for LGBT and HIV seniors). This book is comprehensive, concise, current, and readable. It can be assigned in policy, clinical, and assessment gerontology social work classes. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Massimo, L. M. (2006). Relationship between parents and sick children: Difficulties and possibilities regarding understanding. Devore, Dorothy M, 259-267.
(from the chapter) When a child is suffering from a life threatening disease or from a severe congenital condition, uncertainty keeps parents in a situation of anxiety, expectation, confidence, and fear that is difficult to control and to face in a well balanced manner. A good family inter-relationship prior to the onset of the disease is of fundamental importance. Communication and dialogue are essential for establishing any type of alliance, including a family alliance and a therapeutic alliance. Few studies in the literature report on the active participation of parents in the total care of their children suffering from severe diseases. The family becomes a recipient for the stress related to the illness, and takes on the greatest responsibility for the child's adjustment. Distress may lead to various reactions, such as over-protection, refusal, denial, and anticipation of death, and in some instances sublimation becomes a strong defense mechanism. The child's age plays an important role too, not only when he/she is sick. The strong dependency and interaction of a young school aged child and his/her parents increases if a new situation occurs, especially if this is a life threatening disease. Healthy older children and adolescents frequently have difficult relationships which are full of tension and conflicts, both with their parents and teachers, who are seen as people who want to influence their life choices and lay out their future. However, when they feel they are in great danger, as is the case with disease, or if they are suffering from severe pain and physical distress, or when they must undergo painful procedures and treatment, they turn back to their parents with trust and confidence, and slowly become dependent on them. In these cases it is not unusual for parents to burn-out, a condition which is difficult to handle because it is impossible to stop the cause, i.e., the child's disease, thus leading to the need for personal psychological treatment and care. A project entitled "Well-being and quality of life" has been carried out in our Department for the last five years. It was created in an effort to ensure the direct involvement of the whole family, mainly of the parents, in the medical and psychosocial care of their children with high risk diseases. Following the concept of "Parents helping parents" we started to stimulate this interaction in our Department. Parents of off-treatment or dead children are usually the helpers, while the recipients of their help are the parents of the sick children, starting from their arrival. This mechanism appears to be useful and helpful because parents are able to see that other children who had previously suffered from the same disease are healthy and living a normal life. In any case, our experience shows that only a trained,personal caregiver can provide true and helpful support to children and parents in high risk conditions, and one of their tasks is to supervise the parents' behavior. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Matteo, B., & Pierluigi, B. (2008). Descriptive survey about causes of illness given by the parents of children with cancer. European Journal of Oncology Nursing, 12(2), 134-141.
Background: When a doctor diagnoses a child's illness as cancer, parents very often react by creating wrong and unrealistic theories about the origins of their child's illness which in turn generates self-blame in the parents, who take responsibility for the disease. Objective: To find what are the parents' beliefs about the origins of their children's illness. Design: Descriptive study. Sample: Seventy-two couples of parents whose children with cancer are under treatment in the haemato-oncology paediatric ward of the Padova hospital. They have been collected by a no probabilistic method of sampling. Methods: A questionnaire was used, based on current literature, which investigates the beliefs of the parents as to what are the causes of illness, whether the parents research information about the illness and the origins of cancer and what are the information sources they use in order to establish if there is a connection between these factors. Results: Eighty-seven percent of the sample group thinks that there is a specific origin of their child's illness: 27% believes the cause is environmental pollution, 26% believes it is due to radiation emissions, 26% believes it is due to genetic factors and 8% believes it is due to other causes. Eighty six percent and 70% of the sample search for information about the illness and its causes; 64% of the parents state that the first meeting with the medical staff, in which the illness is explained and they are informed that there are no known causes that produce it, does not clarify their doubts. The sources more often used to search for more information and explanations are the physicians in the ward, internet and medical books. Conclusions: This survey confirms the importance of an "advocacy" role of the nurse in educating the caregiver and the need to create instruments which guide the parents in the informative process and the research for good information. Nurses need to be cognizant that their care is crucial not just for the child, but for the entire family. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
McConkey, R., McConaghie, J., Barr, O., & Roberts, P. (2006). Views of family carers to the future accommodation and support needs of their relatives with intellectual disabilities. Irish Journal of Psychological Medicine, 23(4), 140-144.
Objectives: The demand for places in supported accommodation is likely to rise due to the increasing longevity of people with intellectual disabilities and as their parents become unavailable or unable to care for them. However few attempts have been made to ascertain carer's views on alternative accommodation. Method: Four studies were undertaken in Northern Ireland to ascertain carer's views using three different methods. In all, 387 carers participated with the response being greatest for individual interviews conducted in the family home and least for self-completed questionnaires and attendance at group meetings. Results: The majority of carers envisaged the person continuing to be cared for within the family. The most commonly chosen out-of-home provision was in residential or nursing homes, living with support in a house of their own and in homes for small groups of people. Few carers chose living with another family. However only small numbers of carers envisaged alternative provision being needed in the next two years and few had made any plans for alternative living arrangements. Conclusions: The implications for service planning are noted, primarily the need for individual reviews of future needs through person-centred planning; improved information to carers about various residential options and their differential benefits, along with more services aimed at improving the quality of life of people living with family carers. These need to be underpinned by a commitment of statutory agencies to partnership working with family carers. The implications for mental health services are noted. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
McConkey, R., McConaghie, J., Roberts, P., & King, D. (2004). Family placement schemes for adult persons with intellectual disabilities living with elderly carers. Journal of Learning Disabilities, 8(3), 267-282.
Few family placement schemes involve adult persons, and rarely have they been targeted at older carers. Twenty-five carers, aged 55 years and over, of people with intellectual disabilities using one of two placement schemes in Northern Ireland were studied, along with a further 20 carers recommended for these schemes. Semi-structured individual interviews were used to obtain the views of carers, people with intellectual disabilities and placement providers. The placement schemes were very favourably received. Carers welcomed the break and valued the relationship with the placement provider. Individuals with disability reported greater opportunities to participate in activities. Placement providers were very satisfied with the way the schemes operated: the main complaint was the low level of payments. Key factors affecting the further development of services include recruitment of male providers, registration issues, training of providers and the difficulty in meeting the needs of multiply disabled persons. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
McConkey, R., McConaghie, J., Roberts, P., & King, D. (2005). Characteristics of people providing family placements to adult persons with intellectual disabilities. British Journal of Learning Disabilities, 33(3), 132-137.
The success of family placement schemes depends largely on the recruitment of suitable people who are willing to offer placements in their own home yet little research has been undertaken of their characteristics and the reasons for their involvement. Thirty providers of family based placements to adult persons with intellectual disabilities were individually interviewed. All but one were female; two-thirds were aged 50 plus and just over one-third were in employment. The majority of providers have been recruited from the care sector and many had experience of people with intellectual disabilities. Most had come into the schemes because of their personal interest in this client group. No one came solely as a result of seeing an advertisement and only one person explicitly mentioned the financial reimbursement. Over half had been involved for 3 years and more. All felt they gained a great deal of satisfaction and enjoyment from their involvement but stressed the amount of commitment needed to become a provider. The placement providers overall were very satisfied with the way the schemes operated. The main complaint appeared to be in regard to the low payments. Proposals are made for the future development of family placement schemes particularly in the recruitment of providers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
McDougall, J., Servais, M., Sommerfreund, J., Rosen, E., Gillett, J., Gray, J., et al. (2006). An evaluation of the paediatric acquired brain injury community outreach programme (PABICOP). Brain Injury, 20(11), 1189-1205.
Primary objective: To examine the utility of a coordinated, family/community-focused programme (PABICOP) vs. a standard approach for improving outcomes for children with ABI and their families. Research design: Pre-test-post-test design, with comparison group and follow-up. Methods and procedures: Ninety-six children (64 children receiving PABICOP services and 32 children receiving standard care) participated in the study. Measures were completed at baseline and 3 and 12 months later. Main outcomes and results: Parents/caregivers with more than 10 contacts with PABICOP scored significantly higher on an ABI knowledge quiz than either parents/caregivers with 10 contacts or less or the comparison group at post-test and followup. Parents/caregivers with 10 contacts or less with PABICOP reported significantly greater improvements in children's school and total competence on the CBCL than either parents/caregivers with more than 10 contacts or the comparison group at post-test and follow-up. Conclusions: PABICOP may be more useful for enhancing knowledge of ABI for parents/caregivers and for integrating children into the community over a 1-year period than a standard approach. The amount of service received appears to influence outcomes. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
McIlvane, J. M., Popa, M. A., Robinson, B., Houseweart, K., & Haley, W. E. (2008). Perceptions of illness, coping, and well-being in persons with mild cognitive impairment and their care partners. Alzheimer Disease and Associated Disorders, 22(3), 284-292.
Despite greater attention to mild cognitive impairment (MCI), little is known about reactions to this potentially threatening diagnosis among persons with MCI (PWMCI) and their care partners. Psychologic reactions, perceptions of illness, and coping responses of 46 individuals recently diagnosed with MCI and 29 care partners were assessed with questionnaires assessing psychologic well-being, illness perceptions, coping, and perceived needs for services. Care partners and PWMCI report normal levels of psychologic well-being, showing less distress than is commonly found in Alzheimer disease (AD) caregivers. Problem-focused (eg, active coping) and emotion-focused coping strategies (eg, acceptance) were used more often than dysfunctional coping strategies (eg, self-distraction) by PWMCI and care partners. Both groups tended to minimize the likelihood of conversion to AD, and endorsed mental and physical exercise, optimism, dietary changes, and stress reduction as strategies to prevent conversion. Although PWMCI minimized their impairment, care partners reported providing an average of 24 hours per week of caregiving and reported that the PWMCI did need significant help with complex activities. Respondents reported using few formal services but they anticipate substantial future need for services. Results suggest that PWMCI and care partners are likely to minimize the threat of AD and to perceive that conversion is controllable and preventable with health promotion activities. Study implications for the development of intervention programs for PWMCI and their care partners are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
McIntosh, J., & Runciman, P. (2008). Exploring the role of partnership in the home care of children with special health needs: Qualitative findings from two service evaluations. International Journal of Nursing Studies, 45(5), 714-726.
Background: Advances in therapeutics and the increasing survival rate among premature infants means that more parents now have to adapt to caring at home for children with special health needs. Community paediatric nurses require a wide range of specialist skills and the concept of partnership appears to be foundational to their care of parents and children. Objectives: Drawing on data gathered during the course of two service evaluations of community paediatric nursing care of children with special health needs, this paper explores the extent to which a concept analysis of partnership can be verified empirically. Evaluation methods: In-depth interviews were carried out with parents, a range of professionals and members of different agencies who received training from the nursing team. The sample comprised 17 parents and 20 professionals. Findings: Respect for parental routine was strongly evidenced in both areas, was highly valued in the training of carers and contributed to mothers' confidence. Parents acknowledged that nurses' interactional strategies engendered trust, demonstrated respect for them and empathy for their child. These features of care resonate strongly with partnership attributes identified in the conceptual analysis. Nursing support of parents demonstrated a deep understanding of different styles of adult learning, of how to alleviate psychological and emotional stress and of parental vulnerability. In addition, there was evidence of extensive partnership working across health and social care boundaries. The findings demonstrated the wide range of such collaboration, the time necessary to make it work and the benefit that accrues to the families. Conclusions: It was possible to make empirical links with the partnership attributes identified in the concept analysis although the data highlight the complexity of some of the individual attributes. While there may be overlap between professional-parent partnership and partnership at the level of service co-ordination, there may also be important differences which merit further enquiry. In terms of policy and practice, findings suggest that partnership in the community setting is central to effective service delivery but is knowledge, skill and resource intensive. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
McLaughlin, D. M., & Carr, E. G. (2005). Quality of Rapport as a Setting Event for Problem Behavior: Assessment and Intervention. Journal of Positive Behavior Interventions, 7(2), 68-91.
Relationship quality (rapport) between people with developmental disabilities and their caregivers has long been suggested as an important variable influencing the likelihood of problem behavior. However, to date, the association between rapport and problem behavior has not been systematically investigated. The authors evaluated a multimethod strategy for assessing rapport and then used the assessment information to develop a multicomponent intervention for problem behavior. In Study 1, a descriptive assessment was carried out in which rapport was operationally defined, and good and poor rapport dyads consisting of staff members and participants were identified. Then, a functional analysis of each participant's problem behavior was conducted with respect to the interaction of two factors: quality of rapport and task demands. The results of the assessment study indicated that when rapport was poor, levels of problem behavior were high; when rapport was good, levels of problem behavior were low. In Study 2, the authors evaluated the effectiveness of a multicomponent intervention package designed to improve rapport between the person with disabilities and his or her caregiver. When rapport improved, participants showed a decrease in problem behavior and an increase in task completion in the presence of staff members who had previously been identified as having poor rapport with participants. The multidimensional nature of rapport assessment, as well as the unique contribution that rapport-building can make to multicomponent intervention, are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Meester-Delver, A., Beelen, A., Folmer, K., Medema, D., Hadders-Algra, M., & Nollet, F. (2008). How well do care providers know the children with developmental disabilities they care for? Acta Paediatrica, 97(5), 608-612.
Aim: To assess the knowledge from memory of caregivers about the most significant impairments contributing to additional care needs in children with developmental disabilities in therapeutic toddler groups. Methods: Children's needs for additional care due to impairments of physical health, motor, sensory, mental and voice and speech functions were separately classified using the capacity profile (CAP). Twenty-three therapists and teachers of toddler groups in two regional centres for paediatric rehabilitation assessed the CAP individually, unprepared and without consulting their notes or the clinical record. These CAP scores (150 CAPs of 44 children) were compared with those based on the clinical record using weighted kappa statistics. Results: Weighted kappa values for the two sets of CAP scores ranged from 0.22-0.74 (median 0.53), with the lowest scores for the sensory domain (median 0.32, range 0.22-0.52) and the highest scores for the motor domain (median 0.62, range 0.56-0.74). Conclusion: Team members in general had only moderate remembered knowledge of the current impairments determining need of additional care. Remembered knowledge was the poorest for domains not easily observable, such as sensory functions. As this knowledge is essential for optimizing the child's daily environment, improvement of this type of knowledge should be facilitated. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Mellins, C. A., Brackis-Cott, E., Leu, C.-S., Elkington, K. S., Dolezal, C., Wiznia, A., et al. (2009). Rates and types of psychiatric disorders in perinatally human immunodeficiency virus-infected youth and seroreverters. Journal of Child Psychology and Psychiatry, 50(9), 1131-1138.
Background: The purpose of this study was to examine 1) the prevalence of psychiatric and substance use disorders in perinatally HIV-infected (HIV+) adolescents and 2) the association between HIV infection and these mental health outcomes by comparing HIV+ youths to HIV exposed but uninfected youths (HIV-) from similar communities. Methods: Data for this paper come from the baseline interview of a longitudinal study of mental health outcomes in 9-16 year old perinatally HIV-exposed youths (61 HIV+) and their caregivers. Three hundred forty youths and their primary adult caregivers were recruited from four medical centers and participated in separate individual interviews. Youth psychiatric disorder was assessed using the caregiver and youth versions of The Diagnostic Interview Schedule for Children (DISC-IV). Results: According to caregiver or youth report, a high percentage of HIV+ and HIV- youths met criteria for a non-substance use psychiatric disorder, with significantly higher rates among the HIV+ youths (61% vs. 49%, OR = 1.59; CI = 1.03,2.47; p < .05). The most prevalent diagnoses in both groups were anxiety disorders (46 for total sample) which included social phobia, separation anxiety, agoraphobia, generalized anxiety disorder, panic disorder, obsessive-compulsive disorder, and specific phobias. One quarter of the sample met criteria for a behavioral disorder (ADHD, conduct disorders, and oppositional defiant disorders), with ADHD being most prevalent. HIV+ youths had significantly higher rates of ADHD (OR = 2.45; CI = 1.20, 4.99, p < .05). Only 7% of youths met criteria for a mood disorder and 4% for a substance abuse disorder. Several caregiver variables (caregiver type and HIV status) were also associated with both child HIV status and mental health outcomes. Conclusions: Our data suggest that HIV+ youths are at high risk for mental health disorders. Further longitudinal research is necessary to understand the etiology, as well as potential protective factors, in order to inform efficacy-based interventions. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Mellins, C. A., Elkington, K. S., Bauermeister, J. A., Brackis-Cott, E., Dolezal, C., McKay, M., et al. (2009). Sexual and drug use behavior in perinatally HIV-infected youth: Mental health and family influences. Journal of the American Academy of Child & Adolescent Psychiatry, 48(8), 810-819.
Objective: As perinatally human immunodeficiency virus (HIV)-infected (PHIV+) youths enter adolescence, they are at high risk for poor behavioral and health outcomes. This study examines relations between youth mental health problems and sexual and substance use risk behavior, the impact of caregiver mental health and family functioning on youth mental health and risk behavior outcomes, and the role of youth HIV status in this process. Method: Participants were recruited from four medical centers. Individual interviews were administered to 193 PHIV+ and 127 perinatally HIV exposed but uninfected (PHIV-) 9- to 16-year-old boys and girls and their primary caregivers. Participants were primarily African American and Latino. The interview assessed child sexual and drug risk behavior, child and caregiver mental health, and family functioning. Results: Exploratory latent-variable structural equation modeling revealed no differences in rates of sexual risk behavior or substance use between PHIV+ and PHIV- youths. However, adolescent mental health was significantly associated with sexual risk behavior and substance use. Caregiver mental health was associated with youth mental health and indirectly with sexual risk behavior and drug use through its impact on youth mental health. Family functioning did not significantly predict youth outcomes. Conclusions: Over and above other key environmental factors and family functioning, youth and caregiver mental health problems are related to sex and drug use risk behaviors in PHIV+ and PHIV- youths. Given high rates of youth and caregiver mental health problems in this population, family-based mental health interventions may be a key component of HIV prevention programs for perinatally HIV-exposed youth. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Minnes, P., Woodford, L., & Passey, J. (2007). Mediators of well-being in ageing family carers of adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 20(6), 539-552.
Background. Increasing numbers of adults with an intellectual disability are being cared for at home by ageing parents. The purpose of this study was to determine whether carer resources (i.e. social support and formal service use) and carer appraisals of ageing and stress/burden mediate the relationships between (1) maladaptive behaviour and carer depression; (2) carer health and carer depression; (3) maladaptive behaviour and carer quality of life; and (4) carer health and carer quality of life. Methods. Eighty parents over the age of 50 were interviewed using a number of measures concerning their overall health, perceptions of ageing and stress, depression, and their child's maladaptive behaviour. Results. Carer perceptions of ageing and stress emerged as significant mediators of the relationship between carer health and depression. In addition, perceived carer stress emerged as a significant mediator of the relationship between maladaptive behaviour and carer depression. Resources and appraisals did not emerge as significant mediators in analyses using quality of life as a positive outcome. Conclusions. Results highlight the important contributions of appraisals to well-being and raise questions for future research regarding the role of resources such as informal and formal support in the coping process. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Moody, A. L. (2009). Informal caregiving within a haart era advanced HIV cohort. Dissertation Abstracts International: Section B: The Sciences and Engineering, 69(8-B), 5008.
The current study aimed to identify the primary informal caregivers of a group of urban, racially diverse adults with advanced HIV, and to determine relationships between demographic, medical, and substance use characteristics and types of caregivers identified. Two hundred and fifty participants in the study identified a primary informal caregiver and described their relationship to this person. Reported caregiver types included 36.8% familial, 22.4% significant other, and 22.8% institutional or other caregiver relationships. Eighteen percent of the sample reported having no individual that rendered informal care. Factors associated with the absence of an informal caregiver included African American race and low education. Hispanic, but not African American, participants reported the highest frequency of family caregivers while participants with a history of substance disorder were less likely to identify a significant other as a caregiver. Lower CD4 count was uniquely predicted by older age, African American race, and membership in the "No Caregiver" category. This study demonstrates the evolving nature of informal caregiving in HIV, race- and education-related disparities in the absence of primary caregivers, and the importance of sociocultural, demographic, and biologic factors in the study of caregiving among HIV+ urban minorities. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Moody, A. L., Morgello, S., Gerits, P., & Byrd, D. (2009). Vulnerabilities and caregiving in an ethnically diverse HIV-infected population. AIDS and Behavior, 13(2), 337-347.
The current study aimed to identify the primary informal caregivers of a group of urban HIV+ adults (n = 250) and to determine relationships between demographic, medical, and substance use characteristics and caregivers types. Reported caregiver types included 36.8% familial, 22.4% significant other, and 22.8% institutional or other caregiver relationships. The remaining 18% of the sample reported having no individual that rendered informal care. Factors associated with the absence of an informal caregiver included African American race and low education. Hispanic participants reported the highest frequency of family caregivers while participants with a history of substance disorder were less likely to identify a significant other as a caregiver. This study demonstrates the evolving nature of informal caregiving in HIV, race- and education-related disparities in the absence of primary caregivers, and the importance of sociocultural and demographic factors in the study of HIV caregiving. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Morgan, P. L., Farkas, G., Hillemeier, M. M., & Maczuga, S. (2009). Risk factors for learning-related behavior problems at 24 months of age: Population-based estimates. Journal of Abnormal Child Psychology: An official publication of the International Society for Research in Child and Adolescent Psychopathology, 37(3), 401-413.
We used a large sample of singleton children to estimate the effects of socioeconomic status (SES), race/ ethnicity, gender, additional socio-demographics, gestational and birth factors, and parenting on children's risk for learning-related behavior problems at 24 months of age. We investigated to what extent these factors increased a child's risk of displaying inattention, a lack of task persistence, disinterest, non-cooperation, or frustration as he or she completed a series of cognitive and physical tasks with a non-caregiver. Results indicated that boys are about twice as likely as girls to display learning-related behavior problems. Children from lower SES households are about twice as likely as those from high SES households to display such behavior problems, which is largely attributable to the effects of having a mother with a low educational level. Statistically controlling for these factors, we found consistently significant patterns of elevated learning-related behavior problems for some Asian and Native American children. Results for African-American children were mixed. Hispanic children did not have consistently elevated risks of problem behaviors. Only small portions of these effects are explained by variation in the children's gestational or birth characteristics. A significant portion, but still less than half of the sociodemographic effects are attributable to measured features of the children's parenting. This study helps provide population-based estimates of children's risk for learning-related behavior problems while at an age when early interventions are most effective. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Morrow, C. E., Culbertson, J. L., Accornero, V. H., Xue, L., Anthony, J. C., & Bandstra, E. S. (2006). Learning Disabilities and Intellectual Functioning in School-Aged Children With Prenatal Cocaine Exposure. Developmental Neuropsychology, 30(3), 905-931.
Risk for developing a learning disability (LD) or impaired intellectual functioning by age 7 was assessed in full-term children with prenatal cocaine exposure drawn from a cohort of 476 children born full term and enrolled prospectively at birth. Intellectual functioning was assessed using the Wechsler Intelligence Scale for Children-Third Edition (Wechsler, 1991) short form, and academic functioning was assessed using the Wechsler Individual Achievement Test (WIAT; Wechsler, 1993) Screener by examiners blind to exposure status. LDs were categorized based on ability-achievement discrepancy scores, using the regression-based predicted achievement method described in the WIAT manual. The sample in this report included 409 children (212 cocaine-exposed, 197 non-cocaine-exposed) from the birth cohort with available data. Cumulative incidence proportions and relative risk values were estimated using STATA software (Statacorp, 2003). No differences were found in the estimate of relative risk for impaired intellectual functioning (IQ below 70) between children with and without prenatal cocaine exposure (estimated relative risk = .95; 95% confidence interval [CI] = 0.65, 1.39; p = .79). The cocaine-exposed children had 2.8 times greater risk of developing a LD by age 7 than non-cocaine-exposed children (95% CI = 1.05, 7.67; p = .038; IQ >= 70 cutoff). Results remained stable with adjustment for multiple child and caregiver covariates, suggesting that children with prenatal cocaine exposure are at increased risk for developing a learning disability by age 7 when compared to their non-cocaine-exposed peers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Moscarelli, M., & Rupp, A. (2006). Editorial. Journal of Mental Health Policy and Economics, 9(2), 55-56.
The articles in this issue focus on the costs and benefits of combining probation and substance abuse treatment, the income and employment of adults having a combination of HIV, mental illness and substance abuse problems, the estimation of the economic impact of depression in Europe and the burden of informal caregiving for persons with bipolar disorder. One article compares the cost and benefits of seamless combination of probation and treatment (where the probation officer is co-located with treatment provider or is actively engaged in treatment) to traditional probation (where treatment is left to the client's choice). The next article examine the particularly vulnerable population of individuals living with combined HIV/AIDS, chronic mental illness and substance abuse disorder. Another article estimate the economic cost of depression in Europe (EU-25 countries plus Iceland, Norway and Switzerland). The final article develops and applies an integrated burden model of informal caregiving for persons with bipolar disorder. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Mueser, K. T., & Taub, J. (2008). Trauma and PTSD among adolescents with severe emotional disorders involved in multiple service systems. Psychiatric Services, 59(6), 627-634.
Objective: This study examined the prevalence and correlates of posttraumatic stress disorder (PTSD) among adolescents with severe emotional disorders who were involved in multiple service systems. Methods: Sixty-nine adolescents, ages 11-17, and their primary caregivers participated in a system-of-care project in three regions of New Hampshire and were interviewed to determine adolescent trauma exposure, prevalence of PTSD, treatment history, family background, behavioral and emotional problems, functioning, caregiver strain, and strengths and resilience. Results: The rate of current PTSD was 28% which was underdiagnosed in adolescents' medical records. PTSD was related to gender (42% for girls and 19% for boys; p = .03), history of sexual abuse (61% among youths with sexual abuse and 15% among youths without), chart diagnosis of depression (47% among youths with depression diagnoses and 16% among youths without), and treatment with multiple psychotropic medications (53% among youths prescribed two or more medications and 26% among those prescribed no medication or one medication). Adolescents with PTSD also were more likely to have run away, engaged in self-injurious and delinquent behavior, reported higher anxiety and depression, and functioned worse at school and home than those without PTSD. Conclusions: PTSD is a common but under diagnosed disorder among adolescents with severe emotional and behavioral disorders who are involved in multiple service systems. Routine screening for trauma exposure and PTSD should be conducted with all adolescents receiving mental health services so that treatment can be provided to those with PTSD. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Murphy, L. M., Flowers, S., McNamara, K. A., & Young-Saleme, T. (2008). Fathers of children with cancer: Involvement, coping, and adjustment. Journal of Pediatric Health Care, 22(3), 182-189.
Introduction: This study examined the role of fathers caring for children with cancer. Psychological adjustment, coping, and work patterns of mothers and fathers were described. Method: Twenty fathers of children with cancer were compared with 20 mothers of children with cancer and 20 control fathers of healthy children. Questionnaire data were collected regarding coping, parental adjustment, child adjustment, and family involvement. Results: Fathers did not differ from mothers or control fathers in terms of psychological adjustment or coping. However, fathers of children with cancer spent more hours at work and more hours caring for children than did control fathers. Paternal adjustment was significantly related to child adjustment only when the child had cancer. Coping was related to work outside the home for fathers and adjustment for mothers. Discussion: Models of family adaptation may be different for fathers and mothers. Treatment teams must attend to the unique needs of fathers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Murphy, N., Christian, B., Caplin, D., & Young, P. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care, Health and Development, 33(2), 180-187.
Background: There are an estimated 5.9 million children with severe disabilities in the USA, and most of them are cared for at home by their parents and families. Indirect evidence suggests that poor caregiver health may contribute to recurrent hospitalizations and out-of-home placements for children with chronic conditions and disabilities. Greater knowledge of caregiver health-related needs would allow for the improvement of existing services and the development of new strategies to sustain caregivers in their vital roles. This study explores caregiver perspectives of the health implications of long-term informal caregiving for children with disabilities. Methods: Forty parents/caregivers of children with disabilities residing in urban, suburban and rural regions of Utah completed questionnaires and participated in focus groups that explored their feelings regarding their current physical and emotional health and the factors that they viewed as either impairing or promoting their health. The sessions were audiotaped and transcribed. Summary statistics were generated for the questionnaire responses. Focus group content was analysed according to emerging themes and patterns in clusters of information. Results: The caregiving experience was captured by five themes: (i) stress of caregiving; (ii) negative impact on caregiver health; (iii) sharing the burden; (iv) worry about the future; and (v) caregiver coping strategies. Forty-one per cent of the caregivers reported that their health had worsened over the past year, and attributed these changes to a lack of time, a lack of control and decreased psychosocial energy. Conclusions: Caregivers of children with disabilities describe negative physical, emotional and functional health consequences of long-term, informal caregiving. They have important insights regarding those aspects of caregiving that have positive and negative influences on their health. Interventions that address these issues may have the potential to positively impact caregiver health. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Naar-King, S., Arfken, C., Frey, M., Harris, M., Secord, E., & Ellis, D. (2006). Psychosocial factors and treatment adherence in paediatric HIV/AIDS. AIDS Care, 18(6), 621-628.
A social ecological model provides a promising framework for understanding the individual, family, and societal factors contributing to non-adherence to treatment of paediatric HIV. This study explored which factors relevant to this model are associated with caregivers' adherence and child health outcomes. A cross-sectional design was utilized to assess relationships among current individual, familial, extra-familial factors, caregiver adherence, and viral load. Data were collected from 43 caregivers, and viral load data were obtained from the medical records of their HIV+ children. Caregiver drug and alcohol use and HIV+ status were associated with non-adherence and elevated viral load. Negative outcome expectancy was associated with lower adherence but was not significant in the multivariate analyses. Family factors were not significant, but these measures had low reliability in this sample. Extra-familial factors such as dissatisfaction with medical specialty care and more stressful life events were not directly associated with adherence but were related to increased caregiver substance use. Results of this first study to explore multiple predictors of adherence and health outcomes in paediatric HIV require replication with larger samples, but findings suggest caregiver characteristics that place children at risk for disease progression due to poor adherence to treatment. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Naar-King, S., Montepiedra, G., Nichols, S., Farley, J., Garvie, P. A., Kammerer, B., et al. (2009). Allocation of family responsibility for illness management in pediatric HIV. Journal of Pediatric Psychology, 34(2), 187-194.
Objective: The purpose of the study is to describe allocation of responsibility for illness management in families of children and adolescents perinatally infected with HIV. Methods: A total of 123 youth (ages 8-18) and caregivers completed family responsibility and medication adherence questionnaires as part of a substudy of Pediatric AIDS Clinical Trials Group protocol 219c. Results: Approximately one-fourth of the youth reported being fully responsible for taking medications. A smaller percentage of caregivers reported full youth responsibility. Older youth and caregivers of older youth reported higher degree of youth responsibility for medication-related tasks, though age was unrelated to adherence. Caregiver report of greater responsibility for medications was associated with better adherence. Conclusions: Caregivers are likely to transition responsibility for HIV care to older youth but this transition was not always successful as evidenced by poor medication adherence. Interventions supporting successful transition may improve adherence and subsequently health outcomes in pediatric HIV. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Narayanan, U. G., Fehlings, D., Weir, S., Knights, S., Kiran, S., & Campbell, K. (2006). Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD). Developmental Medicine & Child Neurology, 48(10), 804-812.
This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was constructed from recommendations from caregivers, healthcare providers, and review of other measures. Items spanning six domains are rated on an ordinal scale. Standardized scores (0-100) are reported for each domain and in total. Primary caregivers (n = 77) of 45 males and 32 females between 5 and 18 years of age (mean age 13 y 5 mo [SD 3y 4mo]) with CP, categorized by the Gross Motor Function Classification System (GMFCS) level, completed the CPCHILD. Caregivers of children with severe CP (GMFCS Levels IV and V) also completed a second administration of the CPCHILD 2 weeks after the first. The mean CPCHILD score for children with severe CP was 56.2 (SD 15.7; range 24-93). The mean CPCHILD scores for children in GMFCS Levels I to V were 22.0, 38.2, 23.0, 44.5, and 59.3 respectively (p < 0.001). Reliability was tested in 41/52 caregivers who reported no change in health status between the two administrations of the CPCHILD. The intraclass correlation coefficient was 0.94 (95% confidence interval 0.90-0.97). The CPCHILD seems to be a reliable and valid measure of caregivers' perspectives on the health status, functional limitations, and well-being of these children. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Nathanson, D., & Tzioumi, D. (2007). Health needs of Australian children living in out-of-home care. Journal of Paediatrics and Child Health, 43(10), 695-699.
Background: Children living in out-of-home care have high and frequently unidentified health needs. The Child Protection Unit at Sydney Children's Hospital offers comprehensive health screening to children in care. Aims: To report the experience of the health screening clinic and the rates of identified health problems of children in care in this sample, and to compare these rates with the general child population and children in care overseas. Methods: Comprehensive multidisciplinary health screens were offered to children in out-of-home care. Results: High rates of physical, developmental and emotional health problems were identified. The rates of poor health were greater than the average child population of New South Wales, but similar to the rates of poor health reported in children in care overseas. Conclusions: Children in care are a vulnerable group of the child population who experience unacceptable levels of poor health. Comprehensive health screens can help identify previously undetected health problems. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Naylor, M. D., Hill-Milbourne, V. R., Knoble, S. R., Robinson, K. M., Bowles, K. H., & Maislin, G. (2007). Community-based care model for high-risk adults with severe disabilities. Home Health Care Management & Practice, 19(4), 255-266.
Objective: Evaluate the effectiveness of a home-based intervention for adults with serious physical disabilities at high risk for poor health outcomes. Design: A pretest/post-test design; content analysis of case studies. Setting: Five-county Philadelphia metropolitan area. Patients and Other Participants: Forty-nine community-dwelling adults aged 20-55. Intervention: Six-month comprehensive care management intervention implemented by Advanced Practice Nurses (APNs) focused on improvement of functional status or prevention of functional decline; management of health problems; and enhancement of self-direction of care by subjects and caregivers. Main Outcome Measures: Functional status; total hospitalizations, emergency department (ED) and acute care physician visits; symptom management; depression; quality of life; and satisfaction with care. Results: Between baseline assessment and nine months post-APN intervention, functional status improved (mean = 33.42 rightwards-arrow 24.97, p = 0.014). There was a trend toward reductions in average hospitalization rate from 1.10 at baseline to 0.68 nine months post-APN intervention and ED rates from 0.90 to 0.50. Acute care visits to physicians increased from 0.52 to 0.95 from baseline to nine months post-APN intervention. The use of home health aides (mean = 2.72 rightwards-arrow 1.37, p = 0.008) and physical therapists (mean = 1.16 rightwards-arrow 0.42, p = 0.001) also decreased from baseline to nine months post-APN intervention. Facilitators and barriers to care are identified. Conclusions: Findings suggest potential benefit of a comprehensive, individualized intervention coordinated by APNs in improving health and functional outcomes and decreasing the use of high-cost, acute care resources among severely disabled adults living in the community. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Neugaard, B., Andresen, E., McKune, S. L., & Jamoom, E. W. (2008). Health-related quality of life in a national sample of caregivers: Findings from the behavioral risk factor surveillance system. Journal of Happiness Studies, 9(4), 559-575.
Purpose: Recent national public health agendas, such as Healthy People 2010, call for improved public health surveillance and health promotion programs for people with disabilities and their caregivers. The goal of this study was to understand the public health impact of caregiving on health-related quality of life (HRQoL) using population-level data. Design & Methods: A cross-sectional study design was used. 184,450 adults surveyed during the 2000 national Behavioral Risk Factor Surveillance System survey formed the sample. Binary logistic regression models ascertained differences between caregivers and noncaregivers in reporting reduced ("fair" or "poor") health. Ordinary least squares regression (OLS) and multinomial logistic regression models examined the influence of caregiving status on HRQoL, measured as categories of healthy days reported in the last 30 days and the number of days reported as physical and mental health not good in the last 30 days. Results: Sixteen percent (16%) of the survey respondents were caregivers. There was an interaction effect between caregiving status and age of the caregiver. In the fully adjusted models, caregivers <55 years old had a 35% increased risk of having fair or poor health (odds ratio [OR] = 1.35, 95% confidence interval [CI] 1.28, 1.43) as compared to noncaregivers in that age group, while caregivers 55 years and older had a 3% decreased risk in having fair or poor health (OR = 0.97, 95% confidence interval [CI] 0.92, 1.03) compared to non-caregivers of the same age. In the adjusted models that examined the association of caregiving and healthy days, younger caregivers similarly showed larger deficits in both mental and physical HRQoL compared to older caregivers. For example combining mental and physical days, caregivers <55 had 1.44 fewer healthy days (beta = -1.44, standard error (SE) = 0.07), while caregivers 55+ had 0.55 fewer days *beta = -0.55, standard error (SE) = 0.13 (compared to non-caregivers in their respective age groups). Implications: With increasing population age and the projected increase in caregivers, it is important that we understand the social and public health burden of caregiving and begin to identify interventions to sustain the HRQoL of caregivers. We found that caregivers have a slight to modest decline in HRQoL compared to non-caregivers, and that caregiving affects the HRQoL of younger adults more than older adults. Further research at the population level as to the type and level of burden of caregiving is needed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Nicholas, D. B., Darch, J., McNeill, T., Brister, L., O'Leary, K., Berlin, D., et al. (2007). Perceptions of online support for hospitalized children and adolescents. Social Work in Health Care, 44(3), 205-223.
This study identifies perceived outcomes following hospitalized children's participation in a pediatric online support network. Nineteen participants were interviewed, including child and adolescent patients who had used the network while in hospital, their parent/family caregiver, and a familiar health care provider. This triadic sampling approach provided a range of stakeholder perceptions. Results convey a wide spectrum of benefits and challenges in accessing and utilizing an online support network for hospitalized children. Participation in the network was identified as a means of fostering pediatric patient enjoyment, education, connection with peers, and coping. Information, social connection and distraction served as catalysts fostering positive outcomes for children. Identified barriers to network participation included inaccessibility and limited availability of computers, issues with technology, and discomfort with online interaction. Findings advance understanding of online networks as supportive resources for seriously ill children and their families. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Nostlinger, C., Bartoli, G., Gordillo, V., Roberfroid, D., & Colebunders, R. (2006). Children and adolescents living with HIV positive parents: Emotional and behavioural problems. Vulnerable Children and Youth Studies, 1(1), 29-43.
This study explores the emotional and behavioural problems in children living with an HIV-positive parent, and identifies specific high-risk and protective factors for their psychological well-being. Data were collected on 718 parents living with HIV and on 1136 HIV-affected children in a European multi-centre study (EUROSUPPORT IV) adopting a cross-sectional and retrospective study design. Sociodemographic characteristics, HIV-related stressors, variables relating to caregiving and outcome variables relating to family functioning and children's symptoms were assessed using a self-reported questionnaire. Results indicated a low level of parental HIV disclosure to children, and an elevated level of behavioural symptoms in HIV-affected children as reported by parents. Children had experienced a high degree of distressing life events. In multivariate analysis, perceived healthy family functioning emerged as protective for a low degree of behavioural symptoms in children and adolescents. The results call for a shift towards family-centred service delivery in HIV care and counselling. Service implications are discussed in the light of increasing numbers of women and couples living with HIV who become parents and need tailored support in facing the challenges of being a caregiver living with HIV. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Novak, l., Cusick, A., & Lowe, K. (2007). A pilot study on the impact of occupational therapy home programming for young children with cerebral palsy. American Journal of Occupational Therapy, 61(4), 463-468.
Occupational therapy home programs are a common approach used to provide interventions for children with cerebral palsy, but there is little evidence to demonstrate the effectiveness of such programs. This single-group pretest-posttest design pilot study evaluated the impact of an occupational therapy home program implemented with 20 children who had spastic hemiplegic cerebral palsy (ages 2-7 years, mean 3.8). We measured impact using Goal Attainment Scaling (GAS), the Pediatric Evaluation of Disability Inventory (PEDI), and the Quality of Upper Extremity Skills Test (QUEST). We measured participation amount through a parent self-report log. Significant changes following intervention occurred in scores on the GAS, the PEDI Functional Skills and Caregiver Assistance Scales, and the QUEST, but has found no relationship between participation amount and outcome using the same measures. These promising results suggest that further investigation of the impact of occupational therapy home programs is warranted. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ohnishi, M., Nakamura, K., Kizuki, M., Seino, K., Inose, T., & Takano, T. (2008). Caregivers' and non-caregivers' knowledge regarding HIV/AIDS and attitude towards HIV/AIDS and orphans in Nigeria. Health & Social Care in the Community, 16(5), 483-492.
Nigeria has an estimated 930 000 AIDS orphans, which has a marked impact on family and community. This study was performed to characterize caregivers' knowledge regarding HIV/AIDS and their attitude towards HIV/AIDS, orphans in general and AIDS orphans in particular. Caregivers and non-caregivers aged 25-70 years in Nigeria were interviewed from January and March 2003, and logistic regression analysis was used to determine associations between caregivers' knowledge regarding HIV/AIDS and attitudes towards HIV/AIDS, orphans and AIDS orphans, and demographic characteristics and background status regarding HIV/AIDS and orphans. A total of 824 interviewees participated in the survey (82.4% response rate), of whom 290 (35.2%) were current caregivers of orphans. The mean number of orphans per current caregiver was 1.8 (standard deviation 1.4). Factors related to higher knowledge level regarding HIV/AIDS were female gender [odds ratio (OR) = 3.49; 95% confidence interval (CI): 2.33, 5.22] and belief that AIDS is a common disease (OR = 3.39; 95% CI: 2.19, 5.26). Factors associated with positive attitudes towards HIV/AIDS, orphans in general and AIDS orphans in particular were age 35-44 years (OR = 1.73; 95% CI: 1.11, 2.69), Koranic schooling (OR = 8.69; 95% CI: 2.42, 31.19), polygamy (OR = 1.76; 95% CI: 1.17, 2.62), belief that there are increasing numbers of orphans in the community (OR = 2.59; 95% CI: 1.32, 5.08) and having relatives or friends with HIV/AIDS (OR = 2.88; 95% CI: 1.61, 1.58). There was a slight correlation (r = 0.17, P < 0.001) between caregivers' knowledge regarding HIV/AIDS and positive attitudes towards HIV/AIDS, orphans and AIDS orphans. Demographic characteristics and personal experience should be taken into consideration to improve attitudes and behavior related to HIV/AIDS and caring for orphans and AIDS orphans. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Okamoto, K., Hasebe, Y., & Harasawa, Y. (2007). Caregiver psychological characteristics predict discontinuation of care for disabled elderly at home. International Journal of Geriatric Psychiatry, 22(11), 1110-1114.
Objective: This study sought to determine the predictors of discontinuation of care for the disabled elderly at home using multivariate regression analysis. Methods: In January to February 2005, using a self-administered questionnaire, data were collected from 193 caregivers of frail elderly listed on a roster for utilization of day service or short stay service from two Home Visit Nursing Care Stations. Family caregivers were defined as co-resident family members who provided a minimum of 1 h of daily care for at least 3 months. Multiple stepwise logistic regression analysis was performed to detect predictors of a discontinuation for the disabled elderly at home. Results: The mean age of caregivers was around 59.0 years, accounting for about 80% of the women among caregivers. Of those caregivers, the proportion of desire to institutionalization (high DI) (56.8%) was higher than that of desire to care at home (low DI) (43.2%). Among the following three factors selected by multivariate stepwise logistic regression analysis, the strength of the relationship was stronger in frequent mood swings and irritability as carerecipient characteristic (adjusted OR = 5.93; 95% CI, 2.09-16.8) than in no advanced or skilled care (adjusted OR = 3.13; 95% CI, 1.41-7.14) and a high caregiver burden (adjusted OR = 1.12; 95% CI, 1.03-1.23) as caregiver's one. Conclusions: Our results suggest that the carerecipients' psychological characteristics may be more strongly related to the decision to continue care for disabled elderly at home than that of the caregivers'. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Oktay, J. S., & Tompkins, C. J. (2004). Personal assistance providers' mistreatment of disabled adults. Health & Social Work, 29(3), 177-188.
This article describes a survey of 84 adults with disabilities who received personal assistance with activities of daily living from family members, informal providers, or agency personnel. Results showed that 30% reported mistreatment from their primary provider, and 61% reported mistreatment by another provider. Verbal abuse, neglect, poor care, and theft were the most common forms of mistreatment by other providers. Adults with lower incomes were the most likely to experience mistreatment. Male providers were more likely to mistreat as were providers who were inexperienced and who provided more than 50 hours of care per week. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Oliver, D. A. H. (2008). Resilience in maltreated youth: Support vs. positive identity. Dissertation Abstracts International: Section B: The Sciences and Engineering, 68(7-B), 4421.
The study examines the associations between self-reported risk behaviors and both intrapersonal and interpersonal protective factors in an effort to identify assets that may contribute to resilience among maltreated youth in Child Protective Services. Methods. Using secondary data from the National Survey of Child and Adolescent Well-being, a series of logistic regressions and chi-square analyses were used to determine the relationship between four developmental assets and four risk behaviors among a sample of 1593 adolescents aged 11-18. Results. Maltreated youth with support, specifically more perceived family support, and some perception of positive identity were less likely to report substance use and HIV-risk behaviors. Of the positive identity assets, those maltreated youth with more self-esteem were less likely to report substance use behaviors. Conclusions. Maltreated youth may be more resilient and avoid more risk behaviors if they feel they are a part of a real family and perceive family support. This is especially important when dealing with children who are placed in an out-of-home care situation, such as foster care, and living with alternative or substitute families. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Ondersma, S. J. (2007). Introduction to the second special section on substance abuse and child maltreatment. Child Maltreatment, 12(2), 111-113.
This issue of Child Maltreatment includes the second of two special sections examining the link between substance abuse and maltreatment. As stated in the introduction to the first special section, the goal is to provide a single forum for the highly varied but important work being conducted in this area, most of which is usually found scattered in journals focusing on substance abuse, trauma, pediatrics, child clinical psychology, and family psychology. In this second section, Freisthler, Gruenewald, Remer, Lery, and Needell (2007 [this issue]) examine associations between changes in the number of alcohol outlets throughout a 6-year period and child maltreatment outcomes during that same period using a California sample that included 579 zip codes. Vanderploeg et al. (2007 [this issue]) compare the placement experiences of children in out-of-home care due to parental substance abuse to those of children removed for other reasons. Young, Boles, and Otero (2007 [this issue]) examine what we know and do not know about substance use disorders among parents involved with Child Welfare Services (CWS) and about the children of parents in treatment. Smith, Johnson, Pears, Fisher, and DeGarmo (2007 [this issue]) examine the associations of prenatal versus postnatal substance abuse with foster care placement transitions and child maltreatment and further explore the specific effects of maternal versus paternal substance use on these outcomes. Boles, Young, Moore, and DiPirro-Beard (2007 [this issue]), similar to Green et al. (2007) from the previous special section on substance abuse and maltreatment, examine outcomes within Dependency Drug Courts (DDCs)(what Green et al., 2007, referred to as Family Treatment Drug Courts). (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Oneal, B. J., Burns, G., Kahn, T. J., Rich, P., & Worling, J. R. (2008). Initial psychometric properties of a Treatment Planning and Progress Inventory for Adolescents Who Sexually Abuse. Sexual Abuse: Journal of Research and Treatment, 20(2), 161-187.
This article presents the initial psychometric properties of a treatment planning and progress inventory for adolescents with sexual behavior problems, the Treatment Progress Inventory for Adolescents Who Sexually Abuse (TPI-ASA). The TPI-ASA was designed to monitor common elements of specialized treatment for youth with sexual behavior problems. The TPI-ASA measures nine dimensions relevant to the evaluation and treatment of adolescents with sexual behavior problems (inappropriate sexual behavior, healthy sexuality, social competency, cognitions supportive of sexual abuse, attitudes supportive of sexual abuse, victim awareness, affective/behavioral regulation, risk prevention awareness, and positive family caregiver dynamics). Members of the Association for the Treatment of Sexual Abusers completed the TPI-ASA with 90 male adolescents with sexual behavior problems as part of a psychosexual evaluation. The preliminary findings provided support for the internal consistency and convergent and discriminant validity of the dimensions. Suggestions are offered for additional research on the TPI-ASA and its potential as a clinical tool. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
O'Neill, M. B., & Zeedyk, M. (2006). Spontaneous Imitation in the Social Interactions of Young People with Developmental Delay and Their Adult Carers. Infant and Child Development, 15(3), 283-295.
This paper examines the presence of spontaneous imitation within the social interactions of young people with developmental delay and their adult carers. There have been only a handful of observational studies examining imitation in this population, despite the relevance of such work to contemporary theoretical debates about imitation and the potential that imitation holds as an intervention for promoting communicative skills. The play of eight young people and 13 adult carers over 10 sessions at an after-school club was videotaped and analysed for the presence and impact of spontaneous imitative bouts. Results showed that, in the majority of cases, it was adults who initiated imitative bouts and that the young people generally did not reciprocate such acts. However, even such brief instances of adult imitation were sufficient to increase the children's subsequent smiles and speech vocalizations, as well as the adults' own use of smiling, eye contact, and speech vocalizations. These findings confirm that these young people are sensitive to imitation. The implications for designing interventions that promote communicative exchanges in young people with developmental delay are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ones, K., Yilmaz, E., Cetinkaya, B., & Caglar, N. (2005). Assessment of the Quality of Life of Mothers of Children with Cerebral Palsy (Primary Caregivers). Neurorehabilitation & Neural Repair, 19(3), 232-237.
Objectives: To evaluate the quality of life and psychological status in mothers of children with cerebral palsy (MCCPs) and to assess their relation with regard to the degree of their child's disability. Design: Face-to-face interviews with MCCPs have been performed. A prospective, case control study. Setting. Physical therapy and rehabilitation training and research hospital. Subjects. 46 MCCPs and the mothers of 46 healthy children. Main Outcome Measure: Notthingam Health Profile-1, Beck Depression Inventory (BDI), and Beck Anxiety Inventory (BAI) scores in MCCPs and the mothers of healthy children. Gross Motor Function Classification System (GMFCS) was used for the children with cerebral palsy. Results: A significantly worsened (P = 0.001) quality of life was observed in MCCPs compared to the mothers of healthy children. BDI scores of the MCCPs were significantly higher than the mothers in the control group (P = 0.000). There were no significant differences in BAI scores between MCCPs and control mothers (P > 0.05). A positive correlation between the quality of life and BDI scores was noted in MCCPs (P = 0.000, r = 0.57), and no correlation was detected between the quality of life in MCCPs and the GMFCS levels of children with cerebral palsy (r = 0.012, P = 0.95). Conclusion: The quality of life in MCCPs is significantly lower than that of control mothers. Also, although the BAI scores were not significantly different between the groups, the BDI scores were poorer in MCCPs compared to those the control group. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ong, L. C., Wong, S. W., & Hamid, H. A. (2009). Treatment of drooling in children with cerebral palsy using ultrasound guided intraglandular injections of botulinum toxin A. Journal of Pediatric Neurology, 7(2), 141-145.
The aim of this study was to determine whether botulinum toxin A (BTX-A), injected into both parotid and submandibular salivary glands of children with cerebral palsy and sialorrhea, could decrease their drooling and improve their quality of life. Twenty-one children aged 4 to 12 years (mean age 8.4 years) received 60-80 units BTX-A (mean dose 3.6 U/kg) under sedation using ultrasound guidance. Response was assessed by several methods (drool frequency and severity score, drool quotient, number of bib changes per day and a visual analogue score) at baseline, 2, 8 and 16 weeks post-injection. A questionnaire related to quality of life and caregiver satisfaction was administered at baseline and week 8. Adverse events were recorded at each visit. Drool frequency and severity scores were significantly reduced at weeks 2, 8 and 16 compared to baseline (P < 0.001). Significant reductions were also seen for the visual analogue scale, number of bibs changed daily and drool quotient (P < 0.001). Mean quality of life scores dropped from 35 +or- 4.8 at baseline to 29 +or- 5.2) at week 8 (P < 0.001). Caregiver satisfaction was high at weeks 2, 8 and 16. Pain or swelling (19%), excessively thick saliva (9.5%), fever (9.5%) and chewing difficulties (4.8%) were transient and subsided within 2 weeks of the injection. Eighteen (87.5%) caregivers indicated they wanted repeat injections in the future. In conclusion, percutaneous intraglandular injection of BTX-A was safe and had a sustained effect for up to 16 weeks, with a concomitant improvement in their quality of life and caregiver satisfaction. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Oppenheim, D., Dauchy, S., & Hartmann, O. (2006). Assisting the families of childhood and adolescent cancer patients. Revue Francophone de Psycho Oncologie, 5(4), 200-204.
A child's experience of cancer is also a trying ordeal for his or her family. Professional caregivers must be attentive to the needs of parents, siblings, and, sometimes, grandparents. They must also be sensitive to their fragility as well as their psychological, social and cultural strengths. They must consider their present situation while keeping in mind family history, which sometimes spans several generations. Dealing with cancer can destabilize families during the treatment process, but can later reinforce solidarity and confidence in their strengths. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ostensjo, S., Bjorbaekmo, W., Carlberg, E. B., & Vollestad, N. K. (2006). Assessment of everyday functioning in young children with disabilities: An ICF-based analysis of concepts and content of the Pediatric Evaluation of Disability Inventory (PEDI). Disability and Rehabilitation: An International, Multidisciplinary Journal, 28(8), 489-504.
Background: Assessment of everyday functioning in children may depend to a considerable extent on the framework used to conceptualise functioning and disability. The Pediatric Evaluation of Disability Inventory (PEDI) has incorporated the mediating role of the environment on disability, using different measurement scales. The construction of the Functional Skills scales, which measure capability, and the Caregiver Assistance scales, which measure performance, was based on the Nagi disablement scheme. The International Classification of Functioning, Disability and Health (ICF) represents a new framework of functioning and disability that could be used to compare the measurement constructs and the content of different outcome measurements. Purpose. To examine the conceptual basis and the content of the PEDI using the ICF. Method: Phrases that describe the conceptual basis of the PEDI scales and of the ICF classifications were systematically collected and compared. Two researchers classified the item content of the Functional Skills scales independently before consensus was reached. Results: The analyses indicate that the conceptual basis of the PEDI scales to a large extent match the ICF concepts of activity, participation and environmental factors. Both the PEDI and the ICF use the constructs of capacity and performance, but differ in how to operationalise these constructs. The classification of the Functional Skills scales shows that the PEDI primarily is a measure of activities and participation. The frequent use of environmental codes to classify the context of the requested functions demonstrates that the PEDI has incorporated the environment into the assessment. Conclusions: Our analyses indicate that the ICF could serve as a conceptual framework to clarify the measurement construct of the PEDI scales, and as taxonomy to describe and clarify the item content of the Functional Skills scales. Both as framework and taxonomy the ICF showed limitations in covering functioning in early childhood. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Pakenham, K. I., Bursnall, S., Chiu, J., Cannon, T., & Okochi, M. (2006). The psychosocial impact of caregiving on young people who have a parent with an illness or disability: Comparisons between young caregivers and noncaregivers. Rehabilitation Psychology, 51(2), 113-126.
Objective: To investigate the psychosocial impact of young caregiving by empirically validating prominent qualitative themes. This was achieved through developing an inventory called the Young Caregiver of Parents Inventory (YCOPI) designed to assess these themes and by comparing young caregivers and noncaregivers. Method: Two hundred forty-five participants between 10 and 25 years completed questionnaires: 100 young caregivers and 145 noncaregivers. In addition to the YCOPI, the following variables were measured: demographics, caregiving context, social support, appraisal, coping strategies, and adjustment (health, life satisfaction, distress, positive affect). Results: Eight reliable factors emerged from the YCOPI that described the diverse impacts of caregiving and reflected the key themes reported in prior research. The factors were related to most caregiving context variables and theoretically relevant stress and coping variables. Compared with noncaregivers, young caregivers reported higher levels of young caregiving impact, less reliance on problem-solving coping, and higher somatization and lower life satisfaction. Conclusions: Findings delineate key impacts of young caregiving and highlight the importance of ensuring that measures used in research on young caregivers are sensitive to issues pertinent to this population. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Palattiyil, G., & Chakrabarti, M. (2008). Coping strategies of families in HIV/AIDS care: Some exploratory data from two developmental contexts. AIDS Care, 20(7), 881-885.
Caring for a family member with HIV/AIDS presents multiple challenges that strain a family's physical, economic and emotional resources. Family carers provide physical care and financial support and deal with changes in family relationships and roles, often with little support from outside of the family. Carers in developing countries face even greater challenges, due to lack of medical and support services, poverty and widespread discrimination against those with HIV/AIDS. Little is known about how family carers cope with these challenges or about the ways that development impacts on the process of coping. The current study explored coping strategies used by family carers in two contexts, Kerala, India and Scotland, UK. As part of a larger study, 28 family carers of persons living with HIV/AIDS were interviewed--23 in Kerala and 5 in Scotland. A modified version of the Ways of Coping scale was used to assess coping strategies. Responses were compared on the total number of coping responses used as well as on selected subscales of the WOC. Differences were assessed using the Mann-Whitney U-test. The two cohorts differed significantly in terms of the coping strategies used. The carers from Scotland used a larger number of different coping strategies and scored higher on measures of problem focused coping, positive reappraisal, seeking social support, self-controlling and distancing/detachment. Respondents from Kerala scored higher on a measure of self-blame. Results are discussed in terms of the impact of community resources on coping strategies. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Palermo, T. M., & Owens, J. (2008). Introduction to the special issue: Sleep in pediatric medical populations. Journal of Pediatric Psychology, 33(3), 227-231.
The purpose of the Special Issue of the Journal of Pediatric Psychology on Sleep in Pediatric Medical Populations is to spotlight current research on sleep of children with acute and chronic medical conditions and their caregivers using the best available methods. This Special Issue includes 13 articles that describe prevalence of sleep disturbances, associations with quality of life, parental sleep, the relationship between sleep and clinical symptoms, and sleep and injury risk. Two articles in the special issue describe the relationship between sleep problems and health-related quality of life outcomes in clinical populations. Four articles focus on the relationship between sleep and clinical symptoms in children with medical conditions. The articles in this special issue highlight several important areas of current research on sleep in pediatric medical populations. The articles in this special issue provide directions to move forward on to optimally address children's sleep in the context of acute and chronic illness. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Parish, S. L. (2006). Juggling and struggling: A preliminary work-life study of mothers with adolescents who have developmental disabilities. Mental Retardation, 44(6), 393-404.
A focus group study was conducted to develop an understanding of the experiences of mothers who are trying to balance employment with caring for an adolescent with developmental disabilities. Mothers reported facing considerable difficulties balancing work and caregiving responsibilities because support services rapidly declined when their child reached adolescence. Service cuts were related to the fact that adolescents are expected to be able to care for themselves, despite the fact that for many adolescents with disabilities, this is not possible. The mothers also reported that the preponderance of the responsibility for arranging care for their children was theirs and was not shouldered by their partners. Policy implications are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Parish, S. L., Seltzer, M. M., Greenberg, J. S., & Floyd, F. (2004). Economic Implications of Caregiving at Midlife: Comparing Parents With and Without Children Who Have Developmental Disabilities. Mental Retardation, 42(6), 413-426.
We compared the economic well-being and maternal employment of parents whose children did or did not have developmental disabilities. This prospective study is a secondary analysis of data from the Wisconsin Longitudinal Study, collected when respondents were aged 18, 36, and 53, on average. Although the two groups were similar at age 18, income and savings differed markedly by age 53, but statistically significant differences were not found on other measures. Mothers of children with disabilities were less likely to have job spells lasting more than 5 years and had lower earnings when they were 36 years old. Further, there was a trend for them to be less likely to have full-time jobs as their children grew older. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Parruti, G., Manzoli, L., Giansante, A., D'Eramo, C., Re, V., Graziani, R., et al. (2007). Occupational therapy for advanced HIV patients at a home care facility: A pilot study. AIDS Care, 19(4), 467-470.
Occupational therapy holds promise to increase quality of life and social functioning in patients with HIV infection. Since 2000 through 2005, we experimented a complex structured intervention including directly administered HAART, psychiatric support and occupational therapy for 14 patients with advanced HIV infection and multiple disabilities, cared for at an Italian home care facility. Social and occupational abilities were evaluated using the Axis V of DMS-IV, as assessed by the Global Assessment of Functioning Scale. Patients' abilities in coping with stressful situations were examined using the Social Dysfunction Rating Scale. Both outcomes were evaluated in interviews at study entrance and yearly thereafter. As compared to baseline, social function mean score significantly increased by 42% after one year of follow-up, and social stress mean score was significantly reduced by 11%. Both outcomes continued to improve constantly during the entire follow-up. Acceptance of the intervention was high, and three patients got outdoor job positions. The findings from this pilot study suggest that occupational therapy could be integrated with success in the treatment of severely disabled patients with advanced HIV infection. Confirmation from further research is required. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Pavalko, E. K., & Henderson, K. A. (2006). Combining Care Work and Paid Work: Do Workplace Policies Make a Difference? Research on Aging, 28(3), 359-374.
Demographic shifts mean that workers will increasingly face challenges of caring for ill or disabled family members. The authors use data from the National Longitudinal Survey of Young Women to assess whether employed women are more likely to leave the labor force when they start care work and whether access to workplace policies alters these patterns. They found that, as with earlier cohorts, employed women are more likely to leave the labor force after they start care work. Workers in jobs that provide access to flexible hours, unpaid family leave, and paid sick or vacation days are more likely to remain employed and maintain work hours over a two-year period, but access to job benefits has little impact on women's distress. Although most policies do not provide additional benefits for employed caregivers than for other workers, unpaid family leave does increase their employment retention. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Peckham, N. G., Howlett, S., & Corbett, A. (2007). Evaluating a survivors group pilot for a women with significant intellectual disabilities who have been sexually abused. Journal of Applied Research in Intellectual Disabilities, 20(4), 308-322.
Background: Sexual abuse has been associated with trauma, low self-esteem, anger, depression and challenging behaviours. This pilot study builds on a small published literature by evaluating a survivors group (SG) for women with an intellectual disability and an educational support group (ESG) for their carers. Method: The SG was delivered weekly over 5 months for 20 sessions and the ESG ran concurrently for their seven carers in a separate room within the same community-based building. Participants were helped to build trust and rapport, provided with education about sexual abuse designed for their level of ability, and helped to reprocess the trauma of their sexual abuse. Results: Both the SG and the ESG were evaluated using a repeated-measures design (double baseline, mid-treatment, post-treatment and follow up), to see whether there was any improvement in relevant clinical dependent variables associated with the consequences of sexual abuse (i.e. trauma, self-esteem, anger, depression and challenging behaviour). Improvements occurred in sexual knowledge, trauma and depression. Neither self-esteem nor anger improved for most of the SG and challenging behaviour worsened at first before improving. Conclusions: The SG seemed to be successful in improving sexual knowledge and in reducing trauma and depression, although challenging behaviours worsened at first before improving. There is a need for more sexual abuse/sexual education groups for men and women with intellectual disabilities. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Peden-McAlpine, C., Tomlinson, P. S., Forneris, S. G., Genck, G., & Meiers, S. J. (2005). Evaluation of a reflective practice intervention to enhance family care. Journal of Advanced Nursing, 49(5), 494-501.
Aim: This paper discusses the design, evaluation and outcomes of a reflective practice intervention (RPI) that taught paediatric critical care nurses how to incorporate a family intervention into their practice. Background: The literature on reflective practice contains numerous descriptions of reflective practice and various frameworks on how to engage in reflective practice. Additionally, there has been wide debate about the benefits of and problems with the use of reflective practice. However, few empirical studies have been done to evaluate its effectiveness in changing nursing practice. Method: Van Manen's phenomenological research approach was adapted for use in this study. This approach was consistent with the experiential nature of reflective practice. Interviews were conducted with eight staff nurse participants after the RPI to determine changes in family practice. Analysis of the interview text produced three essential themes. Findings: Three interrelated themes describe change in the nurses' experiences as a result of participating in the RPI: (1) acknowledging and re-framing preconceived ideas about families, (2) recognizing the meaning of family stress and (3) beginning to incorporate the family into nursing care. Conclusions: The RPI stimulated double loop learning that changed paediatric critical care nurses' attitudes about family, enhanced their communication and ability to build trusting relationships with families and brought about a new appreciation of the uniqueness of family stress. There was a new integration of family care into the nurses' practice as a result of the intervention. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Pfoh, E., Wessels, M. R., Goldmann, D., & Lee, G. M. (2008). Burden and economic cost of group A streptococcal pharyngitis. Pediatrics, 121(2), 229-234.
OBJECTIVE: Our aim was to describe the morbidity, medical costs, and nonmedical costs associated with group A streptococcal pharyngitis in school-aged children. METHODS: Our study population included parents of children diagnosed as having group A streptococcal pharyngitis at 2 pediatric practice sites in the Boston, Massachusetts, metropolitan area. Telephone interviews were conducted with parents of eligible children, who were asked questions about health care utilization, medications, and time missed from work or school, for calculation of medical and nonmedical costs associated with illness. RESULTS: One hundred thirty-five parents completed interviews between October 2005 and January 2006. Older children were significantly more likely to present with headache, compared with those <= 5 years of age. No significant differences between older and younger children were found for rates of sore throat, fever, abdominal pain/nausea/vomiting, or rash. Children missed a mean of 1.9 days (range 0-7 days) of school/day care, and 42% of parents missed a mean of 1.8 days of work. A second parent or caregiver also missed a mean of 1.5 days in 14% of families. The total societal cost per case of group A streptococcal pharyngitis was $205 (medical: $118; nonmedical: $87). CONCLUSIONS: The societal cost of group A streptococcal pharyngitis is substantial, with almost one half being attributable to nonmedical costs. Through extrapolation from this experience, the total cost of group A streptococcal pharyngitis among children in the United States ranges from $224 to $539 million per year. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Piazza-Waggoner, C. (2005). Assessing family functioning, coping strategies, and behavioral functioning: Children with primary immunodeficiency disorders and kidney disease. Dissertation Abstracts International: Section B: The Sciences and Engineering, 65(11-B), 6056.
The purpose of this study was to examine children's behavioral functioning to two chronic health conditions having received little empirical study in the pediatric psychology literature: primary immunodeficiency disorders (PIDDs) and kidney disease (KD). Children with PIDD are at increased risk for infections, respiratory-related concerns, gastrointestinal difficulties, inflammatory bowel disease, and malignancy. Children with PIDD and KD seem to share many similar experiences (e.g., dialysis or IVIg treatments, frequent invasive medical procedures). As such, these children were compared to each other and to a healthy comparison group. The aims of this study were to: (a) compare the perceptions of children and caregivers on family functioning, (b) contrast family functioning, coping strategies, and child adjustment across illness groups, (c) examine psychosocial differences across illness severity levels, and (d) determine which variables significantly predict child adjustment. Participants were youth ages 8-21 years. Fifteen children with a PIDD, 17 children with a KD, and 32 comparison children participated. Children and caregivers each completed the: Family Assessment Device and Behavioral Assessment System for Children. To assess coping skills, caregivers and children completed the Brief COPE and Kidcope, respectively. Caregivers and children in the PIDD and healthy comparison groups appeared to agree only on the division of responsibilities among family members. Interestingly, caregivers and children in the KD group agreed on all areas of family functioning assessed. Significant group differences were not obtained for either coping skills or child behavioral functioning. Regression results indicated that caregiver report of family roles and affective responsiveness, as well as child report of family communication, were significantly involved in predicting child behavioral functioning. Thus, it appears that a family systems approach to intervention that addresses communication training and group problem solving may be advantageous to these families. Based on our findings, suggestions for future research and clinical intervention were discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Pirraglia, P. A., Bishop, D., Herman, D. S., Trisvan, E., Lopez, R. A., Torgersen, C. S., et al. (2005). Caregiver Burden and Depression Among Informal Caregivers of HIV-infected Individuals. Journal of General Internal Medicine, 20(6), 510-514.
Background: Few studies have examined the factors associated with depression in informal caregivers of HIV-infected persons. Objective: To investigate the relationship between depression and caregiver burden among informal caregivers of HIV-infected individuals. Design: Cross-sectional study using baseline data from an ongoing randomized trial of a supportive telephone intervention. Participants: One hundred seventy-six dyads of HIV patients and their informal caregiver. Measurements: Depression was defined as a Beck Depression Inventory >10. A Caregiver Strain Index >6 identified informal caregivers with a high caregiver burden. We used logistic regression to identify characteristics that were associated with depression in the informal caregiver. Results: Informal caregivers were 42 years old (SD, 13), 53% female, 59% nonwhite, and 30% had education beyond high school. Forty-seven percent of informal caregivers were the patient's partner, 18% a friend, and 35% a family member. Twenty-seven percent of informal caregivers had a high caregiver burden, and 50% were depressed. We found significantly greater odds of informal caregiver depression with high caregiver burden (OR, 6.08; 95% CI, 2.40 to 15.4), informal caregiver medical comorbidity besides HIV (OR, 2.32; 95% CI, 1.09 to 4.92), spending all day together (OR, 3.92; 95% CI, 1.59 to 9.69), having to help others besides the HIV patient (OR, 2.55; 95% CI, 1.14 to 5.74), and duration of the HIV patient's diagnosis (OR, 1.01 per month; 95% CI, 1.00 to 1.01). Conclusions: High caregiver burden was strongly associated with depression among HIV-infected individuals' informal caregivers, who themselves had difficult life circumstances. Informal caregivers of HIV patients may be in need of both mental health services and assistance in caregiving. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Pit-ten Cate, I. M., Hastings, R. P., Johnson, H., & Titus, S. (2007). Grandparent support for mothers of children with and without physical disabilities. Families in Society, 88(1), 141-146.
Grandparents' support to families of children with disabilities is generally associated with improved parental well-being. Little research addresses the question of quantitative differences in grandparent support to families of children with and without disabilities. This article examines such differences. Data was collected on 50 mothers of children with spina bifida and 43 mothers of children without disabilities and results showed how mothers rated perceived maternal and paternal grandparent support. No differences were found between mothers of children with and without disabilities. These results confirm previous findings that grandparent support appears to be no more frequent in families of children with disabilities than in other families. These findings are discussed with reference to sampling limitations and implications for further research. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Plant, K., & Sanders, M. (2007). Predictors of care-giver stress in families of preschool-aged children with developmental disabilities. Journal of Intellectual Disability Research, 51(2), 109-124.
Background: This study examined the predictors, mediators and moderators of parent stress in families of preschool-aged children with developmental disability. Method: One hundred and five mothers of preschool-aged children with developmental disability completed assessment measures addressing the key variables. Results: Analyses demonstrated that the difficulty parents experienced in completing specific care-giving tasks, behaviour problems during these care-giving tasks, and level of child disability, respectively, were significant predictors of level of parent stress. In addition, parents' cognitive appraisal of care-giving responsibilities had a mediating effect on the relationship between the child's level of disability and parent stress. Mothers' level of social support had a moderating effect on the relationship between key independent variables and level of parent stress. Conclusions: Difficulty of care-giving tasks, difficult child behaviour during care-giving tasks, and level of child disability are the primary factors which contribute to parent stress. Implications of these findings for future research and clinical practice are outlined. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Pruchno, R. A., & Meeks, S. (2004). Health-Related Stress, Affect, and Depressive Symptoms Experienced by Caregiving Mothers of Adults With a Developmental Disability. Psychology and Aging, 19(3), 394-401.
The interrelationships among health-related stress, positive and negative affect, and depressive symptoms patterned in the dynamic model of affect (J. Reich, A. Zautra, & M. Davis, 2003) were examined using data from 932 women having an adult child with a developmental disability. Results indicate that women experience a moderate inverse correlation between positive and negative affect under conditions of low levels of health-related stress, whereas at high levels of stress, positive and negative affect become more strongly inversely correlated. Under high-stress conditions, both negative affect and positive affect have a stronger relationship to depressive symptoms than they do under low-stress conditions. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Pryor, S. K., Carruth, A. K., & LaCour, G. (2005). Occupational Risky Business: Injury Prevention Behaviors Of Farm Women And Children. Issues in Comprehensive Pediatric Nursing, 28(1), 17-31.
On farms in the United States, there are approximately 100 fatal and 32,800 nonfatal injuries annually in children 19 years and younger (United States Department of Labor, 1999). Up to 40% of nonfatally injured children are left with permanent disabilities. The impact of injury and death on children associated with farming in the United States is substantial. Research suggests that modeling of health behaviors may be an effective technique for the socialization of children's health behaviors. The purpose of this study is twofold. First, the study describes the participation and use of protective farm equipment or practices by the caregiver and the child. The second purpose is to compare the practices of the caregivers and the children in relation to the use of protective farm equipment and practices. Descriptive and categorical data analysis methods were used to examine the associations of 177 pairs of caregivers and children and their use of protective equipment and preventative behaviors. Greater than 50% of the children under the age of 7 had handled or touched livestock, as well as rode as passengers on tractors. Many children in all age categories had ridden in the back of pick-up trucks. Modeling of the prevention behavior by the caregivers did parallel the use of the equipment by the children. However, the opposite also was true; if the caregiver did not use the equipment, neither did the child. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Qualls, S. H., & Zarit, S. H. (2009). Aging families and caregiving. 338.
(from the cover) Addressing the complex issues that arise in working with family caregivers, this timely book is filled with clinical illustrations, guidance, tips for practice, and encouragement. In this informative guide, editors Sara Quails and Steven Zarit have brought together a notable team of international contributors to produce a clear structure that offers clinicians a framework for engaging families effectively in the important, but frequently stressful and complicated, role of caring for older family members. Part of the Wiley Series in Clinical Geropsychology, this thorough and up-to-date guide features coverage of: (1) The support provided by families for elderly family members; (2) Integration of families into long-term care mental health services; (3) Clinical services for families engaged in the care of an older person; (4) The background in social services and policy required for clinicians in order to practice effectively with older adults and their families; and (5) Future directions in family caregiving. Aging Families and Caregiving provides clinicians with a solid foundation to help families manage age and disability in a manner consistent with their values, maximize positive outcomes for the care receiver, and reduce the emotional and physical costs on the caregiver. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Radcliffe, J., Fleisher, C. L., Hawkins, L. A., Tanney, M., Kassam-Adams, N., Ambrose, C., et al. (2007). Posttraumatic stress and trauma history in adolescents and young adults with HIV. AIDS Patient Care and STDs, 21(7), 501-508.
This study examined trauma history and posttraumatic stress in a sample of 30 adolescents and young adults with HIV/AIDS, recruited from December 14, 2004 through May 3, 2005. Overall, participants reported a mean of 5.63 traumatic events, with 93% of the sample reporting that receiving a diagnosis of HIV was experienced as traumatic. Of these, 13.3% met criteria for posttraumatic stress disorder in response to HIV diagnosis, while an additional 20% showed significant post-traumatic stress symptoms. Even greater rates of posttraumatic stress were reported in response to other trauma, with 47% of youth surveyed reporting symptoms of posttraumatic stress in response to such traumatic events as being a victim of a personal attack, sexual abuse, or being abandoned by a caregiver. These findings may inform professionals about the potential impact of the HIV diagnosis on adolescents and young adults, particularly as this may impact participation in medical care and need for mental health support. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Rapanaro, C., Bartu, A., & Lee, A. H. (2008). Perceived benefits and negative impact of challenges encountered in caring for young adults with intellectual disabilities in the transition to adulthood. Journal of Applied Research in Intellectual Disabilities, 21(1), 34-47.
Background: This study investigated the perceived benefits and negative impact associated with stressful events and chronic caregiving demands encountered by parents caring for young adults with an intellectual disability in the period of transition to adulthood. Methods: A sample of 119 parents of young adults described these outcomes in a questionnaire, which were then analysed using qualitative content analysis. Results: Although parents identified a range of negative outcomes, they also reported positive outcomes (perceived benefits) in relation to stressful events and chronic demands encountered in this period, including personal growth and enhanced personal resources. Conclusions: The language of stress and burden often used to describe parents' experiences during the period of their son or daughter's transition to adulthood, needs to coexist with a language of fulfilment, growth and gain, as used by parents themselves. The implications of these findings, in relation to professional interaction with and support of parents in this period, are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Ray, M. (2006). Informal Care in the Context of Long-Term Marriage: The Challenge to Practice. Practice, 18(2), 129-142.
Long-married spouses provide a crucial role in the provision of care and support to chronically ill spouses. Elderly spouse care may be distinguished by features such as co-resident care, the greater likelihood of providing significant intimate and personal care, and both partners experiencing significant health problems. The trajectory of care in the context of long-term marriage relationships may include rapid alterations in the ways in which care is defined, who undertakes care for whom, and the nature of the caring role. Drawing on data from a research project that explored the impact of chronic illness and disability on long-established marital relationships, this article explores some of the complexities of 'care giving' in the context of long-term marriage. It goes on to consider the practice challenges associated with assessment and intervention with long-married couples. The impact of a managerialist agenda on practice is considered and the importance of a critical gerontological social work approach is introduced. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Reading, R. (2007). When is lack of supervision neglect? Child: Care, Health and Development, 33(1), 110.
Comments on an article "When is lack of supervision neglect" by K. P. Hymel (2006). This brief clinical report from the American Academy of Pediatrics addresses an issue which taxes all paediatricians as well as many other child care professionals. There is never going to be a definitive answer to this question, and the report does not attempt to be dogmatic. Instead, it offers a number of suggestions for consideration which might help to give a more informed answer. The report also reminds us to remember the emotional burden on the caregiver if an act of omission has led to an injury in the child. Although this is not a definitive list, nor does it provides any systematic way of answering the question, if all the guidance is followed, it will help paediatricians be a lot more confident that they have addressed the right questions and have at least made an informed decision. This is a short paper that would be a useful addition to your office child protection file. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Redle, E. E. (2008). The Pediatric Feeding and Swallowing Disorders Family Impact Scale: Scale development and initial psychometric properties. Dissertation Abstracts International: Section B: The Sciences and Engineering, 68(8-B), 5182.
The study of pediatric feeding and swallowing disorders has evolved over the past twenty years. Despite these advances in understanding the physiology and mechanics of feeding and swallowing disorders, there has been very little research exploring the functional impact of these problems on the family and on the child's daily life. Such information is important to assist in understanding a family's concerns and facilitating the formulation of solutions to help the family and the child in the context of the family. The present study explored the impact of feeding and swallowing disorders on families by developing a scale to quantify the impact of such disorders, and determining the basic psychometric properties of the scale. The primary issues impacting the families of children with feeding and swallowing disorders were explored through qualitative interviewing of 20 primary caregivers. Content analysis of these interviews identified the themes used for the development of the 50 item Pediatric Feeding and Swallowing Disorders Family Impact Scale (PFSDFIS) presented in a Likert scale format. Content validity of the scale was assessed via expert and caregiver review. A small pilot (n=8) confirmed the content and ease of administration of the scale. The scale was field tested by 90 caregivers who had children with feeding and swallowing disorders as well as 46 caregivers whose children were typically developing to assess the basic psychometric properties of the scale. Results of these analyses indicated good internal consistency (alpha;=.93) and a significant difference in total scores between the comparison group with a large effect size (t(134)=-9.991, p=.000, d=1.8). Scores for item distribution indicated a large number of items with floor and ceiling effects which may impact the scale's sensitivity to measuring change. Exploratory factor analysis identified a five factor model. However, the results of the subsequent factor analysis reveal a strong first factor while the remaining four factors were considerably weaker. The scale's demonstrated content validity, internal consistency, and ability to discriminate between caregivers whose children did and did not have feeding and swallowing disorders provide evidence for the scale's potential for use in clinical practice and research. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Redman, T. A., Finn, J. C., Bremner, A. P., & Valentine, J. (2008). Effect of upper limb botulinum toxin-A therapy on health-related quality of life in children with hemiplegic cerebral palsy. Journal of Paediatrics and Child Health, 44(7-8), 409-414.
Aim: Currently, the use of upper limb botulinum toxin-A (UL BTX-A) is based on evidence of functional efficacy without supporting evidence of positive change in health-related quality of life (HRQOL). While function may improve, this cannot be directly correlated with an improvement in HRQOL. Most paediatric studies use caregiver/parent proxy reports. The inclusion of child self-reports is increasing as poor correlation with proxy reports is being demonstrated. This paper aims to study the effect of UL BTX-A therapy on HRQOL in children with hemiplegic cerebral palsy (CP). Method: Design: Pilot prospective randomised trial. Participants: 22 children with hemiplegic CP aged 7 years 0 month-13 years 11 months (12 treatment, 10 control). Treatment: One series BTX-A injections into UL. HRQOL assessed at baseline, and 1, 3 and 6 months post-injection by completion of Pediatric Quality of Life (PedsQL) 4.0 Generic Core Scales and PedsQL 3.0 CP Module. Outcome: 1. Change in PedsQL scores. 2. Concordance between child self-report and parent proxy-report scores. Results: No statistically significant difference between treatment and control groups was observed for any domain of HRQOL. Intraclass concordance was good for the PedsQL CP Module Daily Activities, and Speech and Communication scores (P = 0.0005). Conclusion: This pilot work adds to the emerging evidence that UL BTX-A therapy has no statistically significant effect on the HRQOL of children with hemiplegic CP. With the increasing use of this therapy in children with CP, further research across the broader CP population is needed to identify whether this therapy is indicated in other target populations. Both child and parent proxy reports should be collected when assessing HRQOL in this population. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Reider-Demer, M., Widecan, M., Jones, D. C., & Goodhue, C. (2006). The evolving responsibilities of the pediatric nurse practitioner. Journal of Pediatric Health Care, 20(4), 280-283.
The role of the pediatric nurse practitioner (PNP) is continuing to evolve and expand to meet the increasingly complex health care demands of the pediatric population. Although the PNP role initially was developed to provide pediatric primary care, PNPs now practice in a variety of settings: private practices, school clinics, hospital clinics, inpatient care settings, including intensive care units, and emergency departments. In today's clinical setting, PNPs perform a variety of procedures for optimal patient care, including ordering diagnostic studies, initiating and changing therapies, performing invasive procedures, prescribing medications during and after hospitalization, and ordering post discharge home care. As the role of the PNP continues to evolve and expand to meet the complex health care demands of the pediatric population, so do the PNP's responsibilities. As a result of the evolution of the PNP's role into secondary and tertiary clinical care settings, the PNP has increased responsibility to obtain appropriate credentialing, privileging, and delineation of privileges and reappointment of such authorities. Privileges must be in place before the PNP practices within the designated clinical setting. These steps are necessary to offer quality patient care that is legally defensible. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Reinke, D. C. (2006). Child maltreatment in Canada: A developmental-ecological perspective. Dissertation Abstracts International Section A: Humanities and Social Sciences, 66(10-A), 3577.
Studies from Canada and the United States show that children are at significant risk of being harmed by their parents or caregivers. Risk factors for child maltreatment have been explained using Belsky's ecological model. An extension of this model by Sobsey and Calder has identified factors which increase the risk for children with disabilities. In particular, cultural attitudes, beliefs, and values are risk factors which have not been thoroughly explained from a theoretical perspective in the disinhibition of violence against children with disabilities. In the first paper, Bandura's theory of moral disengagement is used to describe how attitudes, disability, and violence are linked. Cross-cultural implications for counselling families who have children with disabilities are also discussed. In researching consequences of maltreatment, characteristics of individuals, such as age and disability status, have been mainly investigated using small, clinical samples. With the use of a representative Canadian sample of reported maltreatment cases, the second paper describes a study which investigates the proportions of children identified with behavioral, emotional, and cognitive clinical findings (not including the primary disability), and disabilities. It was found that behavior problem was the most common clinical finding in all age levels and the proportions of children identified as having various clinical findings generally increased with age. Developmental delay was the most common disability in all age levels and the proportions of children identified as having various disabilities generally decreased with age. The third paper describes a study using the same Canadian data to compare children with and without disabilities on (a) the types of behavioral, emotional, and cognitive clinical findings, and (b) the proportions of these clinical findings across ages. It was found that behavior problem was the most common clinical finding identified for both children without and with disabilities in all age levels. Furthermore, children with disabilities were significantly more likely to be identified with various clinical findings than children without disabilities. The proportions of children with and without disabilities identified for various clinical findings generally increased with age. Implications for assessment, prevention, and intervention are discussed from a developmental-ecological perspective. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Resnizky, S., & Bentur, N. (2007). Can Family Caregivers of Terminally Ill Patients Be a Reliable Source of Information About the Severity of Patient Symptoms? American Journal of Hospice & Palliative Medicine, 23(6), 447-456.
This study examines the reliability of family caregivers' assessments of a terminally ill patient's symptoms and identifies patient and caregiver characteristics that affect the reliability of caregiver reports. It compares the reports of 143 patients in home hospice units with those of their family caregiver about patient symptoms during the 3 days preceding the interview (Edmonton scale). Correlation coefficients between the patients' and proxies' reports were 0.5 to 0.8, indicating moderate-to-high agreement. Characteristics that had an independent effect on identical reporting were the patient being fully disabled, the caregiver being a woman in good health, the caregiver living with the patient, and the caregiver providing assistance with activities of daily living and medical care. These results suggest that primary caregivers can be a good source of information about a patient's symptoms, although their reports should be used with caution. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Reuber, M., Gore, J., Wolstenhome, J., Jonas, P., Frankson, C., Murray, C., et al. (2008). Examining a community model of epilepsy care for people with learning disabilities. Seizure, 17(1), 84-91.
Purpose: To assess the use of specialised medical epilepsy services by people with learning disabilities (LD) and epilepsy in a community healthcare setting, to compare medical epilepsy care in this group to current management guidelines, and to contrast important outcomes with those achieved in different healthcare settings. Methods: Postal survey with a carer completed questionnaire addressed to all adults with epilepsy registered on an LD register in Sheffield, UK (n = 442). Results: An analysis based on 225 returned questionnaires revealed that 22.7% of individuals with LD and epilepsy had been free of seizures for over 1 year. 95.1% were taking antiepileptic drugs (AEDs), 46.2% had had an EEG, and 41.3% a brain scan. 53.3% of diagnoses had been made by epilepsy experts, 38.7% of individuals with LD and epilepsy were under specialist review. Although patients with more severe epilepsy were more likely to be under specialist care, 60.6% of patients with ongoing seizures, 57.9% with major seizures and 68.7% of individuals taken to hospital with prolonged had no access to specialist advice. Conclusion: The proportion of people with LD who achieved seizure-control in the described population was lower than in all previously reported studies of LD patient groups. The poor outcome in terms of seizure-control, the lack of access to the epilepsy specialist service, and the apparent under-utilisation of investigations indicate that there are grounds for serious concern about this community model of medical epilepsy care for people with LD. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Riddell, R. R., Horton, R. E., Hillgrove, J., & Craig, K. D. (2008). Understanding caregiver judgments of infant pain: Contrasts of parents, nurses and pediatricians. Pain Research & Management, 13(6), 489-496.
Background: Research suggests that caregivers' beliefs pertaining to infant pain and which infant pain cues are perceived to be important play an integral role in pediatric pain assessment and management. Objectives: Following a recent quasi-experimental study reporting on caregiver background and age differences in actual infant pain judgments, the present study clarified these findings by analyzing caregivers' pain beliefs and the cues they use to make pain assessments, and by examining how the wording of belief questions influenced caregivers' responses. Methods: After making pain judgments based on video footage of infants between two and 18 months of age receiving immunizations, parents, nurses and pediatricians were required to respond to questionnaires regarding pain beliefs and importance of cues. Results: Parents generally differed from pediatricians. Parents tended to have less optimal beliefs regarding medicating the youngest infants, were more influenced by question wording, and reported using many more cues when judging older infants than other caregiver groups. In terms of beliefs, influence of question wording and cue use, nurses tended to fall in between both groups; they displayed similarities to both parents and pediatricians. Conclusions: Paralleling the original findings on pain judgments, these findings suggest that parents differ from pediatricians in their pain beliefs and the cues they use to make pain judgments. Moreover, some similarities were found between parents and nurses, and between nurses and pediatricians. Finally, caution must be taken when interpreting research pertaining to beliefs about infant pain because question wording appears to influence interpretation. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Riebschleger, J., Scheid, J., Luz, C., Mickus, M., Liszewski, C., & Eaton, M. (2008). How are the experiences and needs of families of individuals with mental illness reflected in medical education guidelines? Academic Psychiatry, 32(2), 119-126.
Objective: This descriptive study explored the extent that medical education curriculum guidelines contained content about the experiences and needs of family members of people with serious mental illness. Methods: Key family-focused-literature themes about the experiences and needs of families of individuals with mental illness were drawn from a review of over 6,000 sources in the mental health practice literature that were identified within a systematic search and thematic development process. The study identified the extent and nature of family-focused key literature themes as reflected in medical education curriculum guidelines for psychiatry and primary care practice specialties of family practice, internal medicine, and pediatrics. An iterative process was used to retrieve and analyze text data drawn from the curriculum guidelines of national accrediting organizations for undergraduate, graduate, and continuing medical education. Results: The key family-focused themes, as drawn from the mental health practice research literature, were: mental illness stigma; family caregiver burden; information exchange and referral; family stress, coping, and adaptation; family support; crisis response; and family psychoeducation. Two of these seven themes appeared in medical education curriculum guidelines: information exchange and caregiver burden. The most frequently appearing family-focused key literature theme was information exchange. Psychiatry and undergraduate medical education reflected the most family content. Conclusion: It appears that medical education curriculum guidelines have insufficient content about families of people with mental illness. The educational experiences of psychiatrists and primary care physicians may not adequately prepare them for working with family members of their patients. It is recommended that medical education curriculum guidelines incorporate information about family stigma; family/caregiver burden; information exchange; family stress, coping, and adaptation; family support; crisis response; and multiple family group psychoeducation. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Rini, C., Manne, S., DuHamel, K., Austin, J., Ostroff, J., Boulad, F., et al. (2008). Social support from family and friends as a buffer of low spousal support among mothers of critically ill children: A multilevel modeling approach. Health Psychology, 27(5), 593-603.
Objective: To investigate whether social support from family and friends (family/friend support) attenuated ("buffered") adverse effects of having low spouse support (spousal support) among mothers of children undergoing hematopoietic stem cell transplantation (HSCT). Design: One hundred sixty-three married mothers who were their child's primary caregiver during treatment completed assessments during the child's hospitalization for HSCT and 3-, 6-, and 12-months post-HSCT. Measures: Family/friend support and spousal support were assessed during hospitalization. Maternal physical and mental health-related functioning (the main outcome measures) were assessed at all timepoints. Results: Multilevel modeling was used to analyze trajectories of maternal functioning. Findings indicated that mothers with low spousal support and low family/friend support demonstrated the worst functioning across all timepoints. Mothers with low spousal support and high family/friend support demonstrated significantly better functioning, supporting the hypothesized buffering effect. Their functioning compared to the functioning of mothers with high spousal support. Moreover, mothers with high family/friend support demonstrated trajectories of physical health-related functioning that were more stable than the trajectories of mothers with low family/friend support. Conclusion: These findings have clinical implications in addition to advancing knowledge of social support processes among couples coping with the shared stressor of a child's life-threatening illness and treatment. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Robertson, S. A. (2007). Assessment of prelinguistic and emerging language skills of children with developmental language disorders. Kamhi, Alan G, 23-38.
(from the chapter) Evaluation of the prelinguistic and emerging language development of infants and toddlers with developmental language disorders can yield valuable information for clinical decision making by overlaying what we know about typical development to the assessment process. The complexity of development of communication requires that we must widen our evaluation "lens" to include assessment of related domains, such as social skills, cognition, and motor skills. In addition, consideration of the role of the caregiver in the development of communication within the dyad increases the authenticity of our testing protocol and assists speech-language pathologists in developing individualized and culturally appropriate intervention programs. The author argues that assessment needs to provide a complete picture of the child's strengths and weaknesses, not just in language. Specific assessments are guided by a typical developmental framework. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Robinson, L. (2009). Personal and professional reflections on current HIV care. Issues in Mental Health Nursing, 30(1), 61-62.
In a study examining home care needs for people living with HIV/AIDS, the top three symptoms respondents complained of were depression, fatigue, and neuropathic pain. These symptoms persisted despite their taking an average of 33 pills a day, not counting extra PRN medications when the pain became severe. For families of these people, it is nothing less than a miracle that their loved one remains alive. The success or failure of HIV treatment is determined by these results. What is missing in this "care" is attention to the debilitating symptoms of living with depression, fatigue, and neuropathies. Providing better care to those infected, to better manage their depression, fatigue, and pain is a must, but cannot involve taking more medication given the pill burden persons with HIV already endure. This care validates the unfairness of contracting an infection that will shape the remainder of a person's life. This care helps people with HIV accept the day-to-day struggle of chronic illness management by helping them revise their life story. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Robst, J., Armstrong, M., & Dollard, N. (2009). Age, race, and gender difference in antipsychotic medication use among children prior to entry to out-of-home care. Residential Treatment for Children & Youth, 26(2), 119-134.
There is growing literature examining the use of psychotropic medications and specifically antipsychotic medications among youth in the United States. This study uses administrative claims data to assess antipsychotic medication use among children prior to being served in therapeutic out-of-home care settings and whether there are utilization differences by age, race, or gender. Florida Medicaid claims data were analyzed for children and adolescents receiving out-of-home care between July 2003 and June 2006. The majority of children and adolescents in out-of-home treatment settings received antipsychotic medications prior to the therapeutic care episode, but differences existed in treatment patterns across age, gender, and racial groups. Utilization was higher among youth ages 6-12 compared to those 13-18, and was higher among males than females. Blacks are less likely to be prescribed antipsychotics, but those prescribed antipsychotics receive them for the same number of days, and for the same number of months as Whites and Hispanics. Such differences require further investigation to determine whether they result from inadequate treatment and whether treatment differences are related to outcomes. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Rodger, S., Brown, G., & Brown, A. (2005). Profile of paediatric occupational therapy practice in Australia. Australian Occupational Therapy Journal, 52(4), 311-325.
Background: The purpose of the present study was to describe a profile of Australian paediatric occupational therapy practice in terms of theories, assessments and interventions used with the most frequently seen client groups. Methods: An ex post facto survey design was utilised. A purpose-designed survey was mailed to 600 occupational therapists identified by OT Australia as working in paediatrics. Results: The response rate was 55% (n = 330). Respondents in the sample worked chiefly with children with developmental delays, learning disabilities, neurological impairments, and infants/toddlers. Theoretical models used by paediatric clinicians that were common to the most frequently seen client groups focused on sensory integration/multisensory approaches, occupational performance, and client-centred practice. Assessment tools most frequently used were the Test of Visual Motor Integration, Sensory Profile, Bruininks-Oseretsky Test of Motor Proficiency, Handwriting Speed Test, and Motor-Free Visual Perception Test. The most often used treatment methods across the four most frequently seen client groups were parent/caregiver education, sensory integration/stimulation techniques, and managing activities of daily living. Conclusions: Paediatric occupational therapists appeared to draw on a range of theoretical models. With the exception of the Sensory Profile, the assessment and treatment methods most frequently used are not congruent with the most commonly used theoretical models. It is critical that the assessment and treatment methods used are conceptually consistent with the theoretical models that guide practice. Occupational therapists need to examine the evidence and determine whether their clinical practice is grounded in the best contemporary theoretical models, assessments and interventions. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Rodrigues, N. D. (2008). Meanings underlying parent narratives of living with and caring for their preadolescent child with cerebral palsy. Dissertation Abstracts International Section A: Humanities and Social Sciences, 68(11-A), 4878.
The primary objective of this study was to identify family-level meanings that parents develop while living with and caring for their preadolescent child with cerebral palsy. Using secondary data obtained from the Project Resilience study, narratives from 15 two-parent families were analyzed using a qualitative heuristic method of inquiry. Family theories in which meanings are a central construct for understanding family interaction and behavior informed this study. These included symbolic interaction, the ABC-X model of family stress (Hill, 1949), the contextual model of family stress (Boss, 2002) and the family adjustment and adaptation response (FAAR) model (Patterson, 1988). Study findings revealed three major themes consistent with the levels of meanings in the FAAR model (Patterson, 1988): situational meanings, family identity, and family world view. Among several others, situational meanings included parent appraisals about demands of their life situation, such as issues of daily living and uncertainty in how to balance competing demands. Parent appraisals also included capabilities for managing demands. These included personal resources such as focusing on the positive qualities of their child with cerebral palsy, family resources, such as open spousal communication and community resources, such as support received from doctors, friends and others. Their identify as a family was shaped by the experience of having a child with cerebral palsy and varied from striving to be a normal family to having a family identity determined by their child's needs, or one that involved advanced planning lacking in spontaneity, or one where being together as a whole family unit defined their identity. At the level of family world view, parents shared an optimistic and realistic view of their life situation. They preferred living in the present and saw their children with cerebral palsy as an opportunity for self-growth and development. They expressed certain shared goals and purposes as a family. Findings from the study are discussed relative to prior research and in terms of future family research and theory building. Implications for families living with children with chronic health conditions and for the health care providers and professionals who work with them are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Rolland, Y., Andrieu, S., Cantet, C., Morley, J. E., Thomas, D., Nourhashemi, F., et al. (2007). Wandering behavior and Alzheimer disease. The REAL.FR prospective study. Alzheimer Disease and Associated Disorders, 21(1), 31-38.
We evaluated the predictive value of wandering behavior at baseline for nutritional status, disability, institutionalization, and mortality in 686 Alzheimer disease community-dwelling subjects enrolled in the prospective REAL.FR study, France. Wandering behavior was defined using the Neuro-Psychiatric Inventory. The Mini-Nutritional Assessment and Katz Activity of Daily Living (ADL) scale were administered every 6 months during the 2 years of the study. Dementia severity was assessed using the Mini-Mental State Examination. Behavioral disturbances, comorbidities, medication, health care support, and burden status of the caregiver were assessed at the baseline visit. Outcomes of the 83 (12.2%) wanderers were compared with those of the nonwanderers. In the whole sample 30.1%/year subjects lost weight, 27.8%/year worsened their nutritional status, 55.1%/year decreased their ADL score, 11%/year reduced their ability to walk, 13.5%/year were institutionalized, and 6.2%/year died. Wanderers differed from non-wanderers by a higher frequency of decline of the ADL score (P < 0.001), and institutionalization (P < 0.001). Adjusted for baseline characteristics, risk of worsening the nutritional status, weight loss, decreased ADL score, and death were not statistically different between wanderers and nonwanderers. Risk for undernutrition and death are not increased in wanderers. Their higher risk of ADL disabilities and institutionalization are partly explained by their baseline characteristics. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Roth, D. L., Perkins, M., Wadley, V. G., Temple, E. M., & Haley, W. E. (2009). Family caregiving and emotional strain: Associations with quality of life in a large national sample of middle-aged and older adults. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 18(6), 679-688.
Purpose: This study examined the quality of life correlates of family caregiving and caregiving strain in a large national epidemiological sample. Methods: Structured telephone interviews were conducted with 43,099 participants as part of the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants completed the 12-item short form health survey (SF-12) and brief measures of depressive symptoms, social contacts, and caregiving strain. Results: Family caregiving responsibilities were reported by 12% of participants. Caregivers reported more quality of life problems than noncaregivers, but these effects were largely dependent on the perceived level of caregiving strain. High strain caregivers reported more problems with emotional distress, worse physical functioning, and fewer social contacts than noncaregivers. Conversely, caregivers who reported no strain from caregiving reported better quality of life than noncaregivers. Caregiving strain effects were not due to demographic differences or to more objective indicators of caregiving demand. Conclusions: Psychological and social indices of quality of life indicate prevalent problems among family caregivers who have experienced high strain from their caregiving responsibilities. Public health programs for disabled individuals should include assessments of strain on family caregivers and support services for those who report high levels of caregiving strain. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Rothman, G., Anderson, B. J., & Stein, M. D. (2008). Gender, drug use, and perceived social support among HIV positive patients. AIDS and Behavior, 12(5), 695-704.
We investigated the relationships among gender, drug use, and perceived social support in 176 HIV positive patients recruited with their informal caregivers in HIV clinics. Perceived caregiver support, emotional support, tangible support, and conflict were assessed. Current drug use was defined as heroin and/or cocaine use within 6 months prior to baseline. Gender was not significantly associated with any of the four outcomes. Current drug users reported significantly higher conflict in social relationships than nonusers, but was not significantly associated with the other three outcomes. However, significant heroin/cocaine use by gender interactions were observed; specifically, the negative associations between current drug use and perceived caregiver and emotional support were stronger among females than males. We concluded that recent heroin/cocaine use may be associated with dissatisfaction in perceived social support from most sources, with the strongest relationships amongst drug using females. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Rutter, M. (2008). Institutional effects on children: Design issues and substantive findings. Monographs of the Society for Research in Child Development, 73(3), 271-278.
In this commentary, the author addresses two main questions about the original monograph in this issue (see record 2008-17342-001). The two questions he addresses are: "Did the intervention change both staff and child rearing practice and behavior?" and "Did the institutional change benefit the children?" This monograph reports a truly pioneering study that includes a host of important lessons on how to undertake an institution-wide intervention and on how to ensure that this quasi-experiment went a long way down the road from observations to a likely plausible causal inference. The methodological innovations constitute one of the great strengths of this study, but also the substantive findings provide impressive evidence of the psychological benefits for children that can derive from an effective institutional intervention, as well as for a few caveats on the limitations of what can be achieved. It constitutes a splendid example of good translational science (Rutter & Plomin, 2008). (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Rydz, D., Shevell, M. I., Majnemer, A., & Oskoui, M. (2005). Developmental Screening. Journal of Child Neurology, 20(1), 4-21.
An estimated 5 to 10% of the pediatric population has a developmental disability. The current strategy to identify these children is through developmental surveillance, a continuous procedure in which the health professional observes the infant, takes a developmental history, and elicits any concerns that the caregiver might have. However, identification of delayed children is ineffective when based solely on routine surveillance. A necessary adjunct is developmental screening: the process of systematically identifying children with suspected delay who need further assessment. Screening tests greatly improve the rate of identification. With the advent of intervention programs and the support of organizations such as the American Academy of Pediatrics, the topic of developmental screening is a timely and essential one. This review aims to describe the properties of screening tests, to evaluate the available tools for developmental screening while providing a representative sample of the currently available developmental tests, and, finally, to evaluate the efficacy of intervention programs, a needed prerequisite to justify screening. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Salter-Goldie, R., King, S., Smith, M., Bitnun, A., Brophy, J., Fernandes-Penney, A., et al. (2007). Disclosing HIV diagnosis to infected children: A health care team's approach. Vulnerable Children and Youth Studies, 2(1), 12-16.
Telling children that they have HIV is a one of the most difficult psychosocial issues for parents and professionals caring for children with HIV. The literature presents three primary reasons for this: concerns for children's emotional well-being, fear that children will not be able to keep the secret within the family and maternal fear of blame when the virus is transmitted from mother to child. Through research and clinical experience, our HIV team has developed strategies for balancing the needs of parents and children through the three major stages of disclosure: pre-disclosure preparation; the disclosure event and immediate support; and post-disclosure: ongoing assessment, support and information. Before children are told about their HIV, we provide them with health information through partial truth-telling, building gradually upon their knowledge about their health while supporting their parents as they move towards disclosure. We provide support and information during the disclosure event, as planned with parents, and ongoing support after disclosure, as children gain knowledge and understanding of their health and HIV issues. We discuss issues such as multi-disciplinary communication and delayed disclosures. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Samuels, R. C., Liu, J., Sofis, L. A., & Palfrey, J. S. (2008). Immunizations in children with special health care needs in a medical home model of care. Maternal & Child Health Journal, 12(3), 357-362.
Objective: To assess whether a model of care with augmented services within an existing medical home could improve immunization rates for Children with Special Health Care Needs (CSHCN) and to evaluate the influence of family and practice characteristics on these children's immunization rates. Method: Participants were six general pediatric practices, CSHCN, and their families. Enhancements were added to the medical home for CSHCN, including additional nurse practitioner time. A prospective survey and chart review of volunteer families was made in 1998 repeating the chart review in 2000. Results: The immunization rates of CSHCN in the practices before the intervention were 83.4% for DTaP, polio and MMR and 80% if HIB and HepB were added. The intervention did not improve these already high rates. In regression models, children with late onset disorders were more likely NOT to be up-to-date (UTD) by 2 years of age (OR 3.29). CSHCN cared for by non-birth parents and CSHCN whose family incomes were greater than $40,000 per year were also more likely NOT to be UTD (OR 3.81, 2.75 respectively) as were patients of providers not satisfied with any aspect of serving patients (OR 3.29). Conclusions: In these practices already committed to a medical home model of care for CSHCN, immunization rates were at or above state and national averages before any intervention took place. Some groups of patients among these CSHCN were more likely to be delayed with immunizations, including those with late onset disorders and those with high family incomes. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Sandler, A. (2005). Placebo Effects in Developmental Disabilities: Implications for Research and Practice. Mental Retardation and Developmental Disabilities Research Reviews, 11(2), 164-170.
Recent clinical trials of secretin in children with autism showed robust placebo effects and no benefit of secretin over placebo. This article explores the reasons for the observed placebo effects, focusing on the heightening of positive expectancy by media attention and by the sensory experiences associated with intravenous injections. Comparisons are drawn with research involving other novel treatments and other clinical populations of children with developmental disabilities and neurobehavioral disorders. Research regarding mechanisms of placebo effects is reviewed, including patient and clinician attributes, expectancy effects, participation effects, changes in caregiver behavior, and conditioning. New evidence regarding the biological basis of placebo effects is briefly presented. Since placebo effects are ubiquitous and may operate by a variety of mechanisms, research design is critical in designing clinical trials and in evaluating other outcomes research. Measurement issues important for research in developmental disabilities are emphasized. Ethical concerns have been raised regarding the use of placebo in clinical research, but current analysis suggests that placebo controls are necessary and defensible on ethical grounds, if certain conditions are met. The study of placebo effects ("placebology") holds great promise as a new area of research in therapeutics. The author's research in the potential augmentation of stimulant effects in children with attention deficit/hyperactivity disorder (ADHD) by adding placebo in open label is briefly presented. The placebo has always been integral to the practice of medicine, but advances in scientific medicine and medical ethics have diminished the role and use of placebo in practice. An innovative approach to the ethical use of placebo is proposed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Sarajarvi, A., Haapamaki, M., & Paavilainen, E. (2006). Emotional and informational support for families during their child's illness. International Nursing Review, 53(3), 205-210.
Purpose: To describe and compare the support provided by nursing staff to families during their child's illness from the viewpoint of families and nurses. Method: A survey method was used. Data were collected by questionnaires planned for families and staff separately. The study population consisted of families who visited paediatric outpatient clinics, families with hospitalized children (n = 344) and the paediatric nursing staff (n = 60). Findings: Almost half of the families had received adequate emotional and informational support from the nursing staff for their physical and psychological reactions. One-fifth of the families reported that they had not been supported at all during the child's hospitalization. According to families and nurses, the support was provided in the forms of discussion, listening and giving time. Implications for practice: Families' and nurses' suggestions for development of support were related to the time resources of the staff, to the flow of information, to more client-centred attitudes, to being appreciated and listened to and to home care guidance. However, the pervasiveness of this problem in the international literature suggests that deeper consideration of possible underlying reasons for this phenomenon is called for. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Sawhney, I., Tajer, A., & Morgan, J. (2007). Copying clinical letters to patients: Views of people with learning disability and their carers. British Journal of Developmental Disabilities, 53(104,Pt1), 17-23.
In this study, the authors tried to seek the views of patients with learning disabilities and their carers on the practice of copying clinical letters and their preference on the type of information to be included. A total of 41 patients took part in the survey, out of these 24 were living in the community and 17 were inpatients. This study provides a snapshot into the preferences of patients with learning disabilities and their carers. Caution should be shown in generalising the findings since this study is limited because of its small sample size. It demonstrates the need for further research to provide a better service for people with learning disabilities. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Scallon, M. J. (2008). The impact of social support and humor on levels of hope in individuals who are coping with HIV/AIDS. Dissertation Abstracts International: Section B: The Sciences and Engineering, 68(8-B), 5592.
This research study sought to understand how social support, humor, and hope impacted individuals who were coping with HIV/AIDS and it explored themes of participants who were living with the illness, using quantitative and qualitative methods. The participants were recruited from local support groups, in-home care facilities, and a physician's office. During Phase I, thirty-seven participants filled out questionnaires and thirty-six were used in the data analysis. It was hypothesized that there would be significant positive correlations between the three forms of coping (seeking instrumental social support, seeking emotional social support, and humor) and the levels of hope among individuals with HIV/AIDS. The results showed no significant positive correlation between these variables. Four men and two women who were living with HIV and/or AIDS were interviewed during Phase II. The procedure involved semi-structured, audiotaped, face-to face interviews, which lasted approximately 30-60 minutes each. One participant was interviewed by telephone. The questions pertained to coping and hope. Two primary categories regarding goals emerged: participants who identified goals and those who did not identify goals. Among these two categories, six secondary themes emerged: (a) implicit and explicit goals, (b) types of goals ("acceptance", "altruistic", and "accomplishment goals") during different stages of the illness, (c) hopeful cognitions reported, (d) use of humor to cope with HIV/AIDS, (e) use of social support, and (f) attribution of coping methods to personality factors. One limitation may have been the content of the questions. Future research could examine coping as their health improves. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Scelles, R., Avant, M., Houssier, F., Maraquin, C., & Marty, F. (2005). Adolescence and polyhandicap: Views across the advenance of the subject. Neuropsychiatrie de l'Enfance et de l'Adolescence, 53(6), 290-298.
This article deals with the principle research findings which, by adopting a clinical approach, aim to explore what the adolescent with polyhandicap, professionals, his members of family, persons unpaid live when the puberty append. The study uses the analysis of semistructured research interviews of siblings, parents, professional, persons unpaid which organize spare time and polyhandicap adolescent. All these persons note that appearance of puberty entails in a polyhandicap adolescent modification on comportment, on sexuality and provoke new awareness of consequences of disability on their life. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Scharlach, A. E., Giunta, N., Chun-Chung Chow, J., & Lehning, A. (2008). Racial and ethnic variations in caregiver service use. Journal of Aging and Health, 20(3), 326-346.
Objectives: This article examines whether race and ethnicity contribute to the differential use of caregiver support services, when controlling for caregiver and care recipient characteristics, as represented by predisposing, enabling, and need factors included in the Behavioral Model of Health Services Use. Methods: The study includes 1,508 individuals who provide care to an ill or disabled adult aged 50 or older, identified through a random digit dial telephone survey of California households. Logistic regression analysis is utilized to examine factors that predict use of caregiver support services. Results: Race and ethnicity do not contribute significantly to caregiver service utilization, when controlling for relevant covarying factors such as age, education, emotional support, family contribution, care recipient service use, and care recipient impairment. A significant interaction exists between ethnicity and family closeness, with reduced rates of service use among Asian and Pacific Island caregivers whose families are brought closer by the caregiving experience. Discussion: These findings suggest that racial and ethnic disparities in caregiver service use found at the bivariate level are attributable to covarying predisposing, enabling, and need factors. Further research and theoretical development are suggested to clarify the impact of sociocultural factors on caregiver service use. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Scharlach, A. E., Gustavson, K., & Dal Santo, T. S. (2007). Assistance received by employed caregivers and their care recipients: Who helps care recipients when caregivers work full time? The Gerontologist, 47(6), 752-762.
Purpose: This study examined the association among caregiver labor force participation, employees' caregiving activities, and the amount and quality of care received by care recipients. Design and Methods: Telephone interviews were conducted with 478 adults who were employed full time and 705 nonemployed adults who provided care to a family member or friend aged 50 or older, identified through random sampling of California households. We assessed care recipient impairment and service problems; the amounts and types of assistance received from caregivers, family and friends, and paid providers; and caregiver utilization of support services. Results: Care recipients of caregivers employed full time were less likely to receive large amounts of care from their caregivers, more likely to receive personal care from paid care providers, more likely to use community services, and more likely to experience service problems than were care recipients of nonemployed caregivers. Employed caregivers were more likely to use caregiver support services than were nonemployed caregivers. Implications: Accommodation to caregiver full-time employment involves selective supplementation by caregivers and their care recipients, reflecting increased reliance on formal support services as well as increased vulnerability to service problems and unmet care recipient needs. These findings suggest the need for greater attention to the well-being of disabled elders whose caregivers are employed full time. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Schechter, D. S., & Willheim, E. (2009). Disturbances of attachment and parental psychopathology in early childhood. Child and Adolescent Psychiatric Clinics of North America, 18(3), 665-686.
As the field of attachment has expanded over the past four decades, the perturbations in the relational context which give rise to disturbances of attachment are increasingly, though by no means conclusively, understood. In Part I, this article reviews the historical and current state of research regarding normative attachment classification, the diagnosis of Reactive Attachment Disorder, and the proposed categories of Secure Base Distortions and Disrupted Attachment Disorder. In Part II, the article explores the role of parental psychopathology and the manner in which disturbed caregiver self-regulation leads to disturbances in the mutual regulation between caregiver and infant. The question of the relationship between particular types of maternal pathology and particular forms of attachment disturbance is examined through recent research on the association between maternal posttraumatic stress disorder (PTSD), Atypical Maternal Behavior, and child scores on the Disturbances of Attachment Interview (DAI). The authors present original research findings to support that the presence and severity of maternal violence-related PTSD were significantly associated with secure base distortion in a community pediatrics sample of 76 mothers and preschool-age children. Clinical implications and recommendations for treatment of attachment disturbances conclude the article. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Schiller, J. G. (2009). The impact of attachment styles, health distress, and proximity on treatment outcomes in an HIV-positive cohort. Dissertation Abstracts International: Section B: The Sciences and Engineering, 69(11-B), 7149.
Attachment theory has been invoked as a means of gaining insight into the adherence and healthcare behaviors of the chronically and persistently ill. The primary research focus has been on the attachment style of the patient or client. Healthcare consumers, patients, or clients identified as having insecure styles are typically associated with poorer outcomes in correlational research. However, both attachment and adherence are relationship constructs that involve a caregiver and a care-recipient. This study examines how attachment theory contributes to a client's success in meeting health-related treatment outcomes by incorporating a more complete array of attachment components. It extends prior research by assessing the interplay between the attachment styles of both the client and a preferred provider, contact between both members of the relationship, and distress manifested by self-reported health distress. The participants were 168 HIV-positive adults receiving services at a busy outpatient case management program in the South Bronx, NYC, and 55 case manager providers who help clients address an array of medical and non-medical goals that impact overall HIV health. The average client age was 46; race was 51% Latino/Latina, 42% African American, and 3% White. Individual attachment styles were measured by the Bartholomew and Horowitz Relationship Questionnaire. Health Distress was measured by the Stanford Patient Education Research Center's modified version of the Medical Outcomes Study Health Distress Questionnaire. Using ANOVA, Pearson correlations, and means testing, the research questions analyzed were the percentage of goals met according to the styles of the client and the client's preferred provider; various relationships among attachment styles, goals met, and contacts with one's preferred provider; the relationship between health distress and contacts in relation to attachment style, and the relationship between health distress and goals met as related to style. The results suggest an interplay of attachment components beyond that of the client's individual style alone, notably the impact of health distress and the provider's attachment style. Insights gleaned from this study suggest that the healthcare consumer's ability to achieve health-related goals and maintain optimal health may be a characteristic of the partnership between the provider and consumer, as well as context. Keywords. attachment style, health distress, proximity, client-provider relationship, HIV, AIDS, adherence. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Schlesinger, A. B. (2008). In this issue/abstract thinking: Primary care providers and ADHD in community settings. Journal of the American Academy of Child & Adolescent Psychiatry, 47(7), 729-730.
Primary care providers (PCPs) are at the frontline of behavioral health care delivery. They are the first professionals whom most parents consult with concerns about childhood behavior, and they fill the gap for patients who do not have ready access to mental health insurance or services. Because PCPs provide the majority of treatment of attention deficit hyperactivity disorder (ADHD) in the United States, the American Academy of Pediatrics has highlighted the critical importance of the PCP's role in the evaluation and treatment of ADHD in two sets of published guidelines. Care coordination has been suggested as a vital component of long-term care for youths in the pediatric medical home, and evidence is beginning to accumulate that the presence of a medical home is correlated with positive health outcomes. It appears that components of the medical home concept, such as care coordination, have variable support and implementation among community pediatricians. Effective and efficient methods for the primary care treatment of ADHD must continue to be pursued to ensure provision of high-quality care to youths and their families. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Schoeder, C. E., & Remer, R. (2007). Perceived social support and caregiver strain in caregivers of children with Tourette's disorder. Journal of Child and Family Studies, 16(6), 888-901.
The research on Tourette's disorder (TD), a neuropsychological disorder consisting of motor and phonic tics, has largely focused on individuals with TD and not on the caregivers of children with TD. We investigated the effects of several variables on caregiver strain of caregivers of children with TD, including perceived social support, caregiver characteristics, and characteristics of the child's disorder. An online survey was completed by 140 caregivers of children with TD between the ages of 6 to 18 years. We performed a path analysis to examine the outcome of caregiver strain in relation to the research variables. Our results indicated that caregiver age, symptom severity of the child's TD, and perceived social support accounted for variance in caregiver strain, and that perceived social support was a partial mediator of child's symptom severity and caregiver strain. Symptom severity and caregiver strain were also related to the presence of other comorbid disorders, such as Oppositional Defiant Disorder (ODD), anxiety, or Attention Deficit Hyperactivity Disorder (ADHD) when compared to children either having no other comorbid disorders or other types of disorders. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Schormans, A. F., Coniega, M., & Renwick, R. (2006). Placement stability: Enhancing quality of life for children with developmental disabilities. Families in Society, 87(4), 521-528.
Quality of life for children with developmental disabilities (DD) has recently received increasing attention. This qualitative study examines quality of life for children with DD in care based on the perspectives of a small group of foster, adoptive and kinship caregivers. Placement stability is identified as a contributing factor to quality of life by using grounded theory methodology. Respondents expressed the importance of meeting the child's needs; provision of a family environment; and supporting the parents to support the child. The implications for child welfare practice are briefly discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Sherman, D. W., Ye, X. Y., McSherry, C. B., Parkas, V., Calabrese, M., & Gatto, M. (2007). Symptom assessment of patients with advanced cancer and AIDS and their family caregivers: The results of a quality-of-life pilot study. American Journal of Hospice & Palliative Medicine, 24(5), 350-365.
This longitudinal pilot study examined differences in demographic characteristics of 101 patients with advanced illness (cancer, AIDS) and 81 family caregivers, evaluated the reliability of the Memorial Symptom Assessment Scale for these patients and their family caregivers; obtained preliminary data regarding similarities or differences in the symptom experience of these patients and their family caregivers and changes in symptoms over time; and identified demographic variables that may be potential covariates related to the symptom experience. All demographic variables were significantly different for patients with advanced cancer and AIDS, and their symptom experience is similar only with regard to psychologic symptoms; however, based on the Memorial Symptom Assessment Scale, cancer and AIDS patients and their family caregivers have similar symptom experiences, indicating the need for palliative care for both patients and family. Further research is needed to establish the reliability of the Memorial Symptom Assessment Scale for use with family caregivers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Shumaker, S. A., Ockene, J. K., & Riekert, K. A. (2009). The handbook of health behavior change (3rd ed.). 827.
(from the cover) Numerous acute and chronic diseases can be prevented simply by maintaining healthy behavioral patterns. This handbook provides practical and authoritative health management information for both health psychologists and primary care physicians whose clients and patients suffer from health-related issues and risks. The text also serves as a useful resource for policy makers and graduate students studying public health or health psychology. This new edition of The Handbook of Health Behavior Change provides an updated and expanded view of the factors that influence the adoption of healthy behaviors. The contributors also examine the individual, social, and cultural factors that can inhibit or promote health behavior change. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Simon, C., Kumar, S., & Kendrick, T. (2008). Formal support of stroke survivors and their informal carers in the community: A cohort study. Health & Social Care in the Community, 16(6), 582-592.
This cohort study, aims to explore formal care provision to stroke survivors and their informal carers in the community in the UK. An initial cohort of 105 cohabitant carers of first-time stroke patients was recruited while the stroke patient was in hospital. Structured face-to-face interviews were carried out with carers prior to discharge of the stroke patient home, at 6 weeks after discharge, and 15 months after stroke. Questionnaires included measures of psychological health (CIS-R), physical health (self-rated health), social well-being (relationship quality and Sarason's social support questionnaire), handicap of the stroke survivor (Oxford Handicap Scale) and formal community support (amount of formal support and carer satisfaction). Multiple services were involved with most survivor-carer pairs (mean 5.4; range 2-9; SD = 1.7), and 74% of carers were satisfied with formal support provided. Number of services decreased with time (5.5 versus 4.1, t = 4.201, d.f. = 52, P < 0.001,95% confidence interval: 0.71-2.01) but not time allocated. Using stepwise linear regression, service provision early after discharge was predicted by: level of handicap, recruitment centre, carer self-rated health, number of informal supporters and other care commitments. Satisfaction was predicted by quality of informal support and activity restriction. Fifteen months after stroke, predictors of formal care were: level of handicap, quality of informal support and previous caring experience. Predictors of satisfaction were: quality of the relationship between the stroke survivor and carer, age and mood. Quality of services was good, but carers lacked information, had insufficient help and were not consulted enough. Carer distress is common, yet not currently a factor influencing support provision. Formal care provided adapts with time reflecting the importance of quality of support from friends and family rather than quantity of informal supporters. These factors should be taken into consideration when planning and providing formal support for stroke survivors and their carers. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Simon, M., Tackenberg, P., Nienhaus, A., Estryn-Behar, M., Conway, P. M., & Hasselhorn, H. (2008). Back or neck-pain-related disability of nursing staff in hospitals, nursing homes and home care in seven countries--results from the European NEXT-Study. International Journal of Nursing Studies, 45(1), 24-34.
Background: Musculoskeletal disorders are a widespread affliction in the nursing profession. Back or neck-pain-related disability of nursing staff is mainly attributed to physical and psychosocial risk factors. Objectives: To investigate which--and to what extent--physical and psychosocial risk factors are associated with neck/back-pain-related disability in nursing, and to assess the role of the type of health care institution (hospitals, nursing homes and home care institutions) within different countries in this problem. Design: Cross-sectional secondary analysis of multinational data of nurses and auxiliary staff in hospitals (n = 16,770), nursing homes (n = 2140) and home care institutions (n = 2606) in seven countries from the European NEXT-Study. Methods: Multinomial logistic regression analysis with raw models for each factor and mutually adjusted with all analysed variables. Results: Analysis of the pooled data revealed effort-reward imbalance as the predominant risk factor for disability in all settings (odds ratios for high disability by effort-reward ratio: hospital 5.05 [4.30-5.93]; nursing home 6.52 [4.04-10.52] and home care 6.4 [3.83-10.70] [after mutual adjustment of psychosocial and physical risk factors]). In contrast, physical exposure to lifting and bending showed only limited associations with odds ratios below 1.6; the availability and use of lifting aids was--after mutual adjustment--not or only marginally associated with disability. These findings were basically confirmed in separate analyses for all seven countries and types of institutions. Conclusions: The findings show a pronounced association between psychosocial factors and back or neck-pain-related disability. Further research should consider psychosocial factors and should take the setting where nurses work into account. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Simpson, Y. N. (2005). Home, School, and Community factors as predictors of quality of life of children and youth with disabilities. Dissertation Abstracts International: Section B: The Sciences and Engineering, 65(12-B), 6675.
There is a large body of research that suggests home, school, and community factors are related to child quality of life ratings, yet it remains unclear how these environmental factors and disabling conditions interact to affect the quality of life ratings of children with different disabling conditions. The purpose of this study was to examine the relationship between home, school, and community factors and the quality of life of children and adolescents with different disabling conditions. It is hypothesized that: (1) Home characteristics (family characteristics and family quality of life), school characteristics (school climate and student activity difficulties), and community characteristics, and available resources predict caregivers' ratings of quality of life for children and adolescents with disabling conditions. (2) Caregivers' ratings of child and adolescent quality of life will differ by family income, parent level of education, or location of residence? (3) Caregivers' ratings of child and adolescent quality of life will differ by type and severity of child disabling condition? Data on approximately 93 caregiver-child pairs drawn from extant data were analyzed for this study. The 93 child participants in the sample included 48 boys and 45 girls between birth and 23 years of age. The children and youth included in the study were developmentally disabled, deaf/hearing impaired, or suffered from a renal insufficiency. Results indicated that children and adolescents who lived in families with higher family quality of life ratings and communities with more resources were given higher quality of life ratings by their caregivers. Younger children and those who lived in more supportive and cohesive families were more likely to receive higher quality of life ratings from their caregivers. Further, the caregivers' quality of life ratings did not differ by family income, parent level of education, or location of residence. In addition, caregivers' ratings of child quality of life did not differ by the child's disabling condition or the severity of the disabling condition. Findings, limitations, implications and directions for future research are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Sinanan, A. N. (2008). The impact of child, family and child protective services factors on reports of child sexual abuse recurrence. Dissertation Abstracts International Section A: Humanities and Social Sciences, 69(4-A), 1546.
Child maltreatment is a phenomenon that has a long history in the United States (Pogge, 1992). Patterns of child sexual abuse are a common subject of research, although little has been documented regarding the incidence and risk factors for recurrence in large populations. Gaining knowledge of the risk factors correlated with child sexual abuse recurrence can affect and improve the assessment of a child's risk for re-abuse. Using secondary data analysis, this hypothesis-driven dissertation study sought to identify if certain child factors (e.g., age, gender, race/ethnicity, disabilities, prior victim of abuse, and relationship to perpetrator of abuse), family risk factors (e.g., substance abuse, domestic violence, inadequate housing and financial problems) and services provided by child protective services (e.g., family supportive services and family preservation services) increased the likelihood of reports of child sexual abuse recurrence, by type of reporter. The data used for this dissertation study was derived from the National Child Abuse and Neglect Data System (NCANDS) data set of 2002-2004. This dissertation study employed the ecological perspective by assuming the interrelatedness of the various components and levels of the ecological systems within which child sexual abuse reoccurs. In addition, general systems theory served as a framework for the investigation of the behaviors of reporting of sexual abuse by type of reporter. Results indicated that child disability, being a prior victim, having a perpetrator as a caregiver, family financial problems, and receiving family supportive services, increased the likelihood for reports of child sexual abuse by mandated reporters. Results from the Cox proportional hazards regression analysis signifies the likelihood of reports of child sexual abuse recurrence by mandated reporters is greatly influenced by services provided by child protective services and a child's race. This dissertation study makes a contribution to child maltreatment by recognizing sexual abuse cases present with unique indicators and risk factors that differ from other types of child maltreatment recurrence. The study of risk factors specifically related to child sexual abuse recurrence may improve the ability to assess the risk of future sexual abuse among those children already identified to child protective services. Based on these research findings, implications for social work practice, education, and research are also discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Singh, N. N., Lancioni, G. E., Winton, A. S., Wahler, R. G., Singh, J., & Sage, M. (2004). Mindful caregiving increases happiness among individuals with profound multiple disabilities. Research in Developmental Disabilities, 25(2), 207-218.
Using alternating treatments embedded within a multiple baseline across caregivers design, we measured baseline levels of happiness displayed by three adults with profound multiple disabilities when they engaged in leisure activities, each by a different pair of caregivers. Then, we taught mindfulness methods to one of each pair and measured the levels of happiness displayed by the individuals during the 8-weeks training for the caregivers. Finally, we measured the levels of happiness displayed by the three individuals for 16 weeks following the termination of mindfulness training. We found that, regardless of whether the level of happiness was initially observed to be high or low in the presence of a caregiver, it increased markedly when an individual interacted with a caregiver who received training in mindfulness when compared to the control caregiver, who did not receive such training. Our study provides evidence that increasing the mindfulness of a caregiver can produce a substantial increase in the levels of happiness displayed by individuals with profound multiple disabilities. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Sivec, H. J., Masterson, P., Katz, J. G., & Russ, S. (2008). The response of children to the psychiatric hospitalisation of a family member. AeJAMH, 7(2), 1-9.
The children of parents with mental illness face numerous challenges. While there is abundant evidence of an increased risk for mental health problems, there has been less written about the immediate impact of experiencing a parent's psychiatric crisis (e.g., hospitalisation). The current investigation aims to extend the current research literature by identifying clinical characteristics (i.e., symptoms of anxiety and/or depression), questions, and concerns reported by minor children when a significant caregiver in their life was hospitalised as the result of a serious mental illness. Standardised psychological tests of anxiety and depression were administered to 49 children, aged 7-17 years, at a time when a family member was admitted to a government-operated, psychiatric hospital. The children were also asked a set of structured questions in order to assess their concerns and questions at the time of a visit with their parent/relative at the hospital. Composite scores for the anxiety and depression scales fell within the normative range for the entire sample. However, roughly 40% of children produced at least one score that fell in the clinical range on anxiety subscales. Children reported that they were mainly happy to see their parent/relative in the hospital and eager to interact with them. The results are discussed in terms of ways to effectively meet the needs of a child whose parent or family member is hospitalised. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Slevin, E., McConkey, R., Truesdale-Kennedy, M., Barr, O., & Taggart, L. (2007). Community learning disability teams: Perceived effectiveness, multidisciplinary working and service user satisfaction. Journal of Intellectual Disabilities, 11(4), 329-342.
The locus of care for people with learning disabilities has shifted from institutional/residential care to community care, with Community Learning Disability Teams (CLDTs) providing support for people with learning disabilities, and their family caregivers, in the community. A survey of the perceived effectiveness of 145 CLDT members, 27 family caregivers and 21 people with a learning disability was undertaken. Findings suggest high levels of perceived effectiveness with the services provided by the CLDTs, but caregivers gave the lowest satisfaction ratings. Although overall effectiveness was rated highly there is no room for complacency. There was limited evidence to support the view that multidisciplinary CLDTs are more effective than unidisciplinary teams. Further research is required in this area and ongoing evaluation of the effectiveness of CLDTs is suggested. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Sloman, K. N., Vollmer, T. R., Cotnoir, N. M., Borrero, C. S., Borrero, J. C., Samaha, A. L., et al. (2005). Descriptive analyses of caregiver reprimands. Journal of Applied Behavior Analysis, 38(3), 373-383.
We conducted descriptive observations of 5 individuals with developmental disabilities and severe problem behavior while they interacted with their caregivers in either simulated environments (an inpatient hospital facility) or in their homes. The focus of the study was on caregiver reprimands and child problem behavior. Thus, we compared the frequency of problem behavior that immediately preceded a caregiver reprimand to that immediately following a caregiver reprimand, and the results showed that the frequency of problem behavior decreased following a reprimand. It is possible that caregiver reprimands are negatively reinforced by the momentary attenuation of problem behavior, and the implications for long- and short-term effects on caregiver behavior are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Smith, J., Forster, A., & Young, J. (2004). A randomized trial to evaluate an education programme for patients and carers after stroke. Clinical Rehabilitation, 18(7), 726-736.
Objectives: To evaluate the effectiveness of an education programme for patients and carers recovering from stroke. Design: Randomized controlled trial. Subjects and setting: One hundred and seventy patients admitted to a stroke rehabilitation unit and 97 carers of these patients. Interventions: The intervention group received a specifically designed stroke information manual and were invited to attend education meetings every two weeks with members of their multidisciplinary team. The control group received usual practice. Measures: Primary outcome was knowledge of stroke and stroke services. Secondary outcomes were handicap (London Handicap Scale), physical function (Barthel Index), social function (Frenchay Activities Index), mood (Hospital Anxiety and Depression Scale) and satisfaction (Pound Scale). Carer mood was measured by the General Health Questionnaire-28. Results: There was no statistical evidence for a treatment effect on knowledge but there were trends that favoured the intervention. The education programme was associated with a significantly greater reduction in patient anxiety score at both three months (p =0.034) and six months (p =0.021) and consequently fewer 'cases' (Hospital Anxiety and Depression Scale anxiety subscale score >=11). There were no other significant statistical differences between the patient or carer groups for other outcomes, although there were trends in favour of the education programme. Conclusion: An education programme delivered within a stroke unit did not result in improved knowledge about stroke and stroke services but there was a significant reduction in patient anxiety at six months post stroke onset. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Smith-Olinde, L., Grosse, S. D., Olinde, F., Martin, P. F., & Tilford, J. M. (2008). Health state preference scores for children with permanent childhood hearing loss: A comparative analysis of the QWB and HUI3. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 17(6), 943-953.
Purpose: The aim of this study was to compare two preference-weighted, caregiver-reported measures of health-related quality of life for children with permanent childhood hearing loss to determine whether cost-effectiveness analysis applied to deaf and hard of hearing populations will provide similar answers based on the choice of instrument. Methods: Caregivers of 103 children in Arkansas, USA, with documented hearing loss completed the Quality of Well-Being Scale (QWB) and the Health Utilities Index Mark 3 (HUI3) to describe the health status of their children. Audiology and other clinical measures were abstracted from medical records. Mean scores were compared overall and by degree of hearing loss. Linear regression was used to correlate preference scores with a four-frequency pure-tone average, cochlear implant status, and other factors. Results: Mean preference scores for the QWB and HUI3 were similar (0.601 and 0.619, respectively) although the HUI3 demonstrated a wider range of values (-0.132 to 1.000) compared to the QWB (0.345-0.854) and was more sensitive to mild hearing loss. Both measures correlated with the pure-tone average, were negatively associated with comorbid conditions and positively associated with cochlear implant status. In the best fitting regression models, similar estimates for cochlear implant status and comorbid conditions were obtained from the two measures. Conclusions: Despite considerable differences in the HUI3 and the QWB scale, we found agreement between the two instruments at the mean, but clinically important differences across a number of measures. The two instruments are likely to yield different estimates of cost-effectiveness ratios, especially for interventions involving mild to moderate hearing loss. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Soodeen, R.-A., Gregory, D., & Bond, J. B., Jr. (2007). Home care for older couples: "It feels like a security blanket . . .". Qualitative Health Research, 17(9), 1245-1255.
In this article, the authors explore the home care experience as described by older physically impaired individuals and their caregiving spouses. Separate face-to-face semistructured interviews were carried out with each spouse from nine couples. Analysis of the interview data revealed four themes. For care receivers the themes were Independence and Developing a Trusting Relationship With Home Care Workers. Relief and Continuity were voiced by the caregiving spouses. The authors show how these themes relate to the participants' sense of security, which emerged as a key underlying concept in the home care experience. This study adds to the home care and caregiving literature as it expands our understanding of the relationship between formal and informal caregiving, highlights issues and concerns older couples face as they receive home-based care, and includes both older spouse caregivers and their direct-care recipients. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Stancin, T., Wade, S. L., Walz, N. C., Yeates, K. O., & Taylor, H. (2008). Traumatic brain injuries in early childhood: Initial impact on the family. Journal of Developmental and Behavioral Pediatrics, 29(4), 253-261.
Objective: The purpose of this study was to examine factors that affect parental burden and distress during the first few months following a traumatic brain injury (TBI) in young children. Methods: Participants were consecutively enrolled children ages 3 through 6 years with either a TBI (n = 89; 21 severe, 22 moderate, and 45 complicated mild) or orthopedic injury (OI; n = 119) requiring hospitalization. During the post-acute period, parents provided information regarding the preinjury family environment and current caregiver functioning and injury-related burden. Results: Compared with parents of young children with OI, parents of children with TBI reported greater overall caregiver burden and greater burden related to the injury. Parents of children with severe TBI also reported more stress with spouses and siblings and higher levels of parental depression and global distress relative to the OI comparison group. Parents of 5- to 6-year-old children reported significantly higher levels of both injury-related burden and distress than parents of 3- to 4-year-old children. Parents of children with mild TBI based on the Glasgow Coma Scale (GCS) who also had positive neuroimaging findings reported greater injury-related burden than parents of children with moderate TBI. Parents reported using a variety of coping strategies, with higher levels of denial and disengagement corresponding with greater injury-related burden and distress. Conclusions: Consistent with previous research on family adaptation to TBI in school-age children, chronic life stresses and interpersonal resources accounted for significant variance in measures of acute injury-related burden and parental distress in parents of younger children, although differences were small. TBI severity defined by GCS scores alone may not be sufficient to identify families at risk of increased burden. Findings suggest that services aimed at facilitating family adjustment following TBI in young children may need to consider a broader definition of risk factors when identifying families who would benefit from interventions. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Stephens, M. A. P., & Franks, M. M. (2009). All in the family: Providing care to chronically ill and disabled older adults. Qualls, Sara H, 61-83.
(from the chapter) As individuals advance into the later years of life, they become increasingly vulnerable to chronic health problems as well as physical and mental limitations associated with these conditions. In fact, if they live long enough, they will certainly develop one or more chronic illnesses. Moreover, the chances are quite good that they will ultimately need help with performing even simple daily activities, and that they will be cared for by one or more of their family members. Our chapter aims to illuminate the many ways in which the health status and health-care needs of older adults have profound implications for their families. To set the stage for our chapter, it may be helpful to think as we do that chronic illness is a family problem rather than solely a problem of the afflicted individual. In this chapter, we review chronic illness and disability in late life as well as trends in family caregiving. We focus on adult-daughter caregivers who at midlife are attempting to balance their parent-care responsibilities with the challenges of their mother, wife, and employee roles.' We review theoretical and empirical literature that bears on the experiences of women in multiple roles that include parent care. Our review highlights the programmatic research that we and out colleagues have conducted since the early 1990's. We end this chapter with a discussion of social policies that affect women in midlife, including implications of out work on women attempting to balance multiple roles. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Stetz, K. M., & Brown, M.-A. (2004). Physical and Psychosocial Health in Family Caregiving: A Comparison of AIDS and Cancer Caregivers. Public Health Nursing, 21(6), 533-540.
The objectives of this study were to compare cancer and AIDS family caregivers in regard to their physical and emotional health. The sample consisted of 26 caregivers of persons with cancer or AIDS. Study participants completed a questionnaire that included measures of depression, grief, symptoms of stress, caregiving demands, interpersonal relationships, health status, and quality of life. The data revealed that both AIDS and cancer caregivers reported high levels of stress and depression as compared to community norms. No significant differences were found between AIDS and cancer caregivers for any of the scale scores; however, the two groups differed on several individual subscales. Cancer caregivers demonstrated higher social functioning and were more likely to report that the work of caregiving itself disrupted their ability to socially engage with others. In contrast, AIDS caregivers were more likely to report that their own health limited their ability to socialize. Even though AIDS caregivers experienced less family support than cancer caregivers, they reported more rewards from caregiving. Results suggest that support delivered to caregivers emphasize a more inclusive approach to program delivery, versus a disease-specific perspective, in order to increase the depth and breath of services provided to families undertaking these challenges. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Stevens, B., McKeever, P., Law, M. P., Booth, M., Greenberg, M., Daub, S., et al. (2006). Children Receiving Chemotherapy at Home: Perceptions of Children and Parents. Journal of Pediatric Oncology Nursing, 23(5), 276-285.
The aim of this descriptive exploratory study was to determine the perspectives of parents and children with cancer on a home chemotherapy program. Qualitative analyses were used to organize data from 24 parents and 14 children into emerging themes. Themes included (1) financial and time costs, (2) disruption to daily routines, (3) psychological and physical effects, (4) recommendations and caveats, and (5) preference for home chemotherapy. When home chemotherapy was compared with hospital clinic-based chemotherapy, parents reported fewer financial and time costs and less disruption to their work and family schedules, and children reported more time to play/study, improved school attendance, and engagement in normal activities. Although some parents felt more secure with hospital chemotherapy, most found it more exhausting and stressful. At home, children selected places for their treatment and some experienced fewer side effects. Although some coordination/communication problems existed, the majority of parents and children preferred home chemotherapy. Home chemotherapy treatment is a viable, acceptable, and positive health care delivery alternative from the perspective of parents and children with cancer. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Storch, E. A., Lehmkuhl, H., Pence, S. L., Jr., Geffken, G. R., Ricketts, E., Storch, J. F., et al. (2009). Parental experiences of having a child with obsessive-compulsive disorder: Associations with clinical characteristics and caregiver adjustment. Journal of Child and Family Studies, 18(3), 249-258.
We examined parental experience of having a child with obsessive-compulsive disorder (OCD) in 62 parent-child dyads. Youth with a primary diagnosis of OCD and their parent(s) were administered the CY-BOCS jointly by a trained clinician. Parents completed several measures about their child's OCD-related impairment and accommodation, emotional and behavioral functioning, parental distress, caregiver stress, and parental experiences of having a child with OCD. Results indicated that parents of children with OCD are considerably distressed about their child's condition. As expected, negative parental experiences (e.g., anxiety about child's condition, uncertainty about their future) were directly related to OCD symptom severity and impairment, as well as child internalizing and externalizing problems, family accommodation of symptoms, and caregiver strain. The presence of emotional resources was negatively related to most outcomes, although some of these relationships did not achieve statistical significance. The presence of internalizing symptoms mediated the relationship between parental experiences and parental distress. Given these findings, addressing parental experiences as part of a family based cognitive-behavioral treatment program for pediatric OCD may help reduce parental distress and improve patient prognosis. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Straus, M. A., & Kantor, G. K. (2005). Definition and measurement of neglectful behavior: Some principles and guidelines. Child Abuse & Neglect, 29(1), 19-29.
Suggests a definition of child neglect, provides a conceptual analysis of that definition, and identifies principles, criteria, and problems in creating measures of neglect, including measures based on caregiver self-report and child-report data. A lack of clarity in definition and a paucity of standardized, reliable, and valid measures is a serious handicap to progress in research on the causes and effects of maltreatment and developing prevention and treatment programs. Neglectful behavior is a multidimensional phenomenon and there is virtually no information on the extent to which the different dimensions have similar or different causes and consequences. A major difficulty with conceptualizing and measuring neglectful behavior is the lack of empirical evidence of each neglectful behavior that might be harmful. The analysis in this article leads to the conclusion that assessing both neglectful behavior and harm to a child separately can make an important contribution to research and can also enhance providers' abilities to target intervention and identify appropriate intervention modalities for perpetrators and victims of neglectful behavior. Implications for the development of new measures for use in research on neglect are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Strober, E. (2005). "Is Power-sharing Possible?" Using Empowerment Evaluation with Parents and Nurses in a Pediatric Hospital Transplantation Setting. Human Organization, 64(2), 201-210.
This article describes the evaluation of an innovative empowerment project aimed at improving nurse-family communication in a pediatric transplantation setting. Empowerment and family-centered care models were employed to reduce barriers to communication and build partnerships. The goals of the project were to facilitate empowerment, power-sharing, and joint decision-making among nurses and families. Families gained insight into biomedical culture, culminating in the creation of a handbook for navigating biomedical culture, which they site as empowering. However, major barriers exist to achieving the remaining goals. Although nurses involved with the project value the principles of joint decision-making and power-sharing abstractly, they are reluctant to incorporate them into their practice. They describe them as at odds with tasks and roles they must accomplish. Foucault's insights on clinical power assist in understanding why this project was successful in creating partnerships in some areas, but not accomplishing power-sharing at a structural and practical level. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Studts, C. R. (2008). Improving screening for externalizing behavior problems in very young children: Applications of item response theory to evaluate instruments in pediatric primary care. Dissertation Abstracts International Section A: Humanities and Social Sciences, 69(3-A), 1160.
Externalizing behavior problems in very young children are associated with an array of negative and costly long-term outcomes. Pediatric primary care is a promising venue for implementing screening practices to improve early identification of this social and public health problem. In this setting, screening requires a brief, easily scored instrument which can detect sub-clinical to clinical levels of the latent construct within the context of early childhood development. Further, items used should perform consistently with children of all sociodemographic backgrounds. This study applied item response theory analyses to investigate the precision, utility, and differential item functioning (DIF) of items measuring externalizing behavior problems in two caregiver-report questionnaires: the PSC-17 (Gardner et al., 1999) and the BPI (Peterson & Zill, 1986; Zill, 1990). Caregivers (N=900) of children ages 3 to 5 responded to both instruments and a sociodemographic questionnaire in the waiting rooms of four pediatric primary care clinics. Sociodemographic characteristics of the children were diverse: 47% were female, 50% were of minority race, and 43% were of low socioeconomic status (SES). Eighteen items comprising the instruments' combined externalizing subscales were evaluated for (a) levels of externalizing behavior problems best measured, and (b) DIF exhibited by child sex, race, and SES. Samejima's (1969) graded response model was fit to the data, and two methods of DIF-detection were employed. Estimation of item parameters allowed consideration of the levels of externalizing behavior problems at which each item was most informative. Five items were found to measure only low to average levels of externalizing problems in the target population, while the remaining 13 were informative at sub-clinical to clinical levels. Significant DIF was detected in 8 of 18 items by child sex, race, or SES. A set of 4 items was identified which (a) provided the most information at sub-clinical to clinical levels of externalizing behavior problems, and (b) exhibited the least amount of DIF by child sex, race, and SES. These items may constitute a promising tool for screening purposes with preschool-aged children in the primary care setting, potentially improving early identification of very young children with externalizing behavior problems. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Sung, L., Klaassen, R. J., Dix, D., Pritchard, S., Yanofsky, R., Ethier, M.-C., et al. (2009). Parental optimism in poor prognosis pediatric cancers. Psycho Oncology, 18(7), 783-788.
Objective: The objectives were to describe parent-rated and physician-rated prognosis in a wide range of pediatric cancers and to describe the prevalence and predictors of parental prognostic optimism in poor prognosis pediatric cancer patients. Methods: This Canadian multi-institutional cross-sectional study included children with cancer receiving any type of active treatment. The primary caregiver rated child prognosis on a 5-point categorical rating scale. For each child, five pediatric oncologists rated prognosis according to child- and disease-related characteristics. Results: Of the 395 included families, 42 (10.6%) of parents rated prognosis as excellent or very good for children in whom physicians rated prognosis as poor. In multiple regression analysis, in comparison to parents of children with leukemia and lymphoma, parents of children with solid tumors (odds ratio (OR) 11.3, 95% CI 4.6, 27.8; P = 0.0009) and brain tumors (OR 7.5, 95% CI 2.7, 21.1; P = 0.09), parents of children with relapsed disease (OR 10.7, 95% CI 3.6, 31.3; P<0.0001) and parents with greater dispositional optimism (OR 1.1, 95% CI 1.0, 1.2; P = 0.008) were more likely to have optimistic prognostic estimates in the setting of physician-rated poor prognosis. Conclusion: Approximately 10% of parents have optimistic prognostic estimates in the setting of physician-rated poor prognosis. Families of children with solid tumors and relapsed cancer and parents who were more optimistic were more likely to be optimistic in the poor prognosis setting. More research is needed to understand the impact of such discrepancies in prognosis on processes and outcomes. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Surkan, P. J., Dickman, P. W., Steineck, G., Onelov, E., & Kreicbergs, U. (2006). Home care of a child dying of a malignancy and parental awareness of a child's impending death. Palliative Medicine, 20(3), 161-169.
In this population-based study, we found that parents who are aware that their child will die from a malignancy are more likely to care for their child at home during the child's last month of life compared to parents who are not aware. End-of-life home care was comparable to hospital care for satisfactory pain relief, access to pain relief and access to medications for other physical symptoms. Using an anonymous postal questionnaire, we obtained information from 449 parents in Sweden who had lost a child due to a malignancy between 1992 and 1997, 4 to 9 years before participating in our study. The prevalence of dying at home and being cared for at home during the last month of life was 23.7% when parents realized intellectually more than 1 month in advance that the child would die (versus 12% who did not), 28.7% for parents who sensed that the child was aware of his or her imminent death (versus 7.8% who did not sense this) and 21.9% for those who received information that the child's illness was incurable (versus 9.4% who did not receive the information). Prevalence of children's unrelieved pain was 11.6% for those receiving home care and 15.3% for those receiving care outside the home. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Swango-Wilson, A. (2008). Caregiver perceptions and implications for sex education for individuals with intellectual and developmental disabilities. Sexuality and Disability, 26(3), 167-174.
Caregivers are important to the educational experiences of individuals with intellectual and developmental disabilities. Sexuality is an area of concern for many caregivers and parents. This study explores the relationship of caregiver perception of sexuality of individuals with intellectual and developmental disabilities, the caregiver perception of agency support for sex education, and their perception of their ability to participate in a sex education program designed specifically for individuals with intellectual and developmental disabilities. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Szilagyi, M. (2009). Children with special health care needs in foster care in the United States. Burns, Claire, 114-121.
(from the chapter) The United States (USA), like the United Kingdom (UK), has children for whom out-of-home care is deemed essential for issues of safety or health. Out-of-home care in both countries is intended to be a time of healing for children and families and a window of opportunity during which families can acquire services they need to successfully reunite with their children. The governments of both countries have responded in recent years to the growing body of evidence about what children need to thrive, passing legislation intended to provide for the needs of children in out-of-home care, protect them and foster permanency for them. In the USA, there is, of course, a subset of children and adolescents in foster care whose health issues are so significant as to place them in that unique category, called for the purposes of this book, disabled children. As in the UK, the number of children with severe developmental, behavioural and/or emotional conditions dwarfs those with complex physical health issues, sometimes also referred to as multiply-disabling conditions. The overall health status of the 510 000 children and adolescents in foster care in the USA is so poor that the American Academy of Pediatrics (AAP) now recognizes the entire foster care population as a population of 'children with special health care needs'. Given the high prevalence of chronic medical (35-60%), mental health (60-80% of children over age 4 years), developmental (60% of children under age 5 years), educational (45% of children 6-11 years) and dental (30-40%) health conditions, this designation is well-warranted, although it has yet to be translated into coherent policy or result in any re-allocation of health resources. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Tarleton, B., & Ward, L. (2005). Changes and choices: Finding out what information young people with learning disabilities, their parents and supporters need at transition. British Journal of Learning Disabilities, 33(2), 70-76.
This article provides an overview of the methods and findings of a project, commissioned by the Social Care Institute for Excellence, to explore the information needs of young people with learning disabilities, their families and supporters at transition. It describes how a group of young people with learning disabilities were trained in research methods and undertook four focus groups with other young people with learning disabilities in England and Wales. Parallel focus groups involving their parents and supporters were conducted at the same time, facilitated by a family carer and professional respectively. The different kinds of information required are summarized: for example, all three groups wanted information about getting a job and going to college and about the transition process generally, but there were also differences in emphasis between the groups, which are described. Key issues in providing information at transition in ways likely to be most accessible to the different stakeholders are outlined. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Teare, J. (2008). Caring for children with complex disabilities. Teare, Jean, 75-91.
(from the introduction) Discusses the care of children with complex disabilities, as improvements in health technology have led to long term survival of children with continuing and life-long care needs. The financial, social and physical demands of caring upon the family are considered in the context of multiple services and professionals that are available to help support the child and family. Key working and transitional care from child to adult services are discussed, as aspects of continuing support to children and young people with complex disabilities. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Teti, D. M. (2005). Integrating Perspectives in Treating Infant Mental Health Problems. PsycCRITIQUES, 50(20), No Pagination Specified.
Review of book Treating Parent-Infant Relationship Problems: Strategies for Intervention edited by Arnold J. Sameroff, Susan C. McDonough, and Katherine L. Rosenblum (see record 2004-16378-000). This book is based on the premise that infant mental health is best conceptualized in terms of the quality of the infant's relationship with his or her caregivers. This is not the first attempt to describe infant mental health in this way, but this volume, with its cross-disciplinary synthesis, makes the most powerful statement to date that infant-parent relationships are clinically and developmentally significant and can be successfully treated. The editors have pulled together an impressive group of contributors from such fields as clinical psychology, developmental psychology, psychiatry, social work, occupational therapy, and pediatrics. The book is impressive in its breadth, yet it is straightforwardly organized, manageable, and, for the most part, highly readable. The first section (Themes) contains three chapters that provide a strong conceptual foundation for the remaining chapters in the book. The second section (Variations, with seven chapters) focuses on different approaches used in intervention with (typically) mother-infant relationship problems. In the final chapter, Emde, Everhart, and Wise specifically address the potential effects that relationships established between the therapist and parent can have on other relationships of significance to the infant and parent. The authors introduce the concept of "leverage," which pertains to the choices of when, where, and how to intervene so that one's efforts yield the greatest benefit to the larger network of relationships in which the parent is involved. The reader comes away from the book with an understanding that infant-parent relationships are clinical entities in their own right, provide the best view of an infant's mental life, and are amenable to treatment that can use one or more ports of entry to effect change, depending on the nature of the problem. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Thorpe, L. (2008). Patterns of aging in adults with intellectual disabilities. Dissertation Abstracts International: Section B: The Sciences and Engineering, 68(9-B), 5892.
Changes in health care and increasing provision of community services have resulted in an increased number of community dwelling older adults with intellectual disabilities (ID), leading to questions about future planning for service delivery. Although selected aspects of functioning have been explored in various research studies, less longitudinal information pertaining to broad aspects of health is available to planners. This longitudinal project was designed over 10 years ago with the primary purpose of exploring individual and systemic issues in the health needs of this challenging population, leading to improved service planning. Cross-sectional and longitudinal health data were collected from 360 adults with intellectual disabilities (ID) recruited from social services agencies from across the province of Saskatchewan. Data collection included caregiver information, chart information and directly administered tests of selected aspects of cognitive functioning. Formal data-collection occurred every second year for a maximum of four test times, and was supplemented by follow-up phone calls. Analysis of study results showed that young, rather than older people without DS had a greater severity of health needs related to their underlying conditions, and more problematic behavioral and mental health issues. The reason for this was likely the increased survival of multiply handicapped young people, and the increasing trend for these people to be maintained in the community rather than in large institutions. This population was more likely to receive psychotropic medications, both for underlying problems such as seizure disorders, but also for difficult behaviors such as aggression. On the other hand, adults with DS had relatively fewer problems in their younger adult years, but had increasing problems as they aged. Most aspects of functioning were decreased in the older compared to the younger cohorts, which was consistent with the longitudinal, individual level data showing yearly declines in most measured skills. These declines were greater than those found in adults without DS. Although yearly declines were noted inmost age cohorts, the largest declines were noted in the oldest age groups, 50 years and over, suggesting that, while aging related decline was present from an early age, declines severe enough to suggest a dementing process probably do not start until after middle age. Declines in visual memory appear to precede those in praxis. Mortality was increased with age, lower baseline functioning, DS, male gender, and baseline depressive symptoms. The use of aging programs did not change much during the course of the study, but interesting differences in service use between people with and without DS were noted. Adults with DS were more likely than those without DS to participate in generic aging services, which was thought to be due to people with DS presenting with more typical, Alzheimer type behaviors, rather than severe behaviors such as aggression. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Tierney, A. J. (2008). AIDS and odds. Journal of Advanced Nursing, 63(4), 321.
Comments on an article by Olagoke Akintola (see record 2008-10428-005). The author highlights the stresses that face volunteer caregivers for AIDS sufferers in South Africa. The study was carried out in two semi-rural communities and his ethnographic study involved interviewing 20 volunteer caregivers, also accompanying some of them on home visits in order to observe and document their experiences. 'Defying all odds' emerged as the overall theme from the author's analysis of the stresses and coping mechanisms of volunteer caregivers. The need for volunteer AIDS caregivers to be better supported is the obvious message that we take from this paper. But, for those of us who live in other parts of the world that are now less-affected by AIDS, and where services and support are in place, this study has an important subtext. It confronts us with a stark reminder of the continuing blight of AIDS for countries such as South Africa where almost half of all deaths are caused by AIDS, rising to over 70% in the 15-49 years age group. Poverty, war and government inaction are some of the many reasons why HIV/AIDS has not been contained. Failure to invest now in stemming AIDS will only result in future costs continuing to escalate. Meantime, every day, thousands of people will die from AIDS. The odds are stacked against success. But failure really is unthinkable. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Tilford, J. M., Grosse, S. D., Robbins, J. M., Pyne, J. M., Cleves, M. A., & Hobbs, C. A. (2005). Health state preference scores of children with spina bifida and their caregivers. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 14(4), 1087-1098.
Cost-effectiveness evaluations of interventions to prevent or treat spina bifida require quality of life information measured as preference scores. Preference scores of caregivers also may be relevant. This study tested whether the preference scores of children with spina bifida and their caregivers would decrease as disability in the child increased. Families of children aged 0-17 with spina bifida (N = 98) were identified using a birth defect surveillance system in the state of Arkansas. Primary caregivers of children with spina bifida identified other families with an unaffected child (N = 49). Preference scores for child health states were determined using the Health Utilities Index - Mark 2 (HUI2). Caregiver preference scores were determined using the Quality of Well-Being (QWB) scale. Children with spina bifida were categorized into three disability levels according to the location of the child's lesion. Mean preference scores declined for both affected children and the primary caregiver as disability in the child increased. In multivariate analysis, the preference score of the child was a significant and positive predictor of the primary caregiver's preference score. A more modest association was found for caregiver health preference scores by lesion location. The findings can inform cost-effectiveness evaluations of interventions to treat or prevent spina bifida. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Trute, B., & Hiebert-Murphy, D. (2005). Predicting family adjustment and parenting stress in childhood disability services using brief assessment tools. Journal of Intellectual & Developmental Disability, 30(4), 217-225.
Background: The utility of two "psychosocial sensor measures" was explored for triage use in childhood disability services to detect households at longer-term risk for parent and family distress. Method: Approximately 6 months after entering childhood disability services, mothers and fathers in 111 Canadian families with a young child with a developmental or cognitive disability identified their family service needs and parenting morale. One year later parents completed standardised measures of parenting stress and family adjustment. Results: Two brief measures assessing family counselling needs and parenting morale detected longer-term family maladjustment from the independent perspectives of mothers and fathers. Although mothers' parenting stress in the longerterm was detected by the set of measures, fathers' parenting stress was only detected by their parenting morale. Conclusions: Brief empirical measures with high face validity may facilitate the process of assessment of service needs, and may help in the early identification of families with higher priority for psychosocial family support resources in childhood disability services. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Urkin, J., Bilenko, N., Bar-David, Y., Gazala, E., Barak, N., & Merrick, J. (2008). Who accompanies a child to the office of the physician? International Journal of Adolescent Medicine and Health, 20(4), 513-518.
The arrival of a minor, unaccompanied by a parent, for a clinic visit, is challenging to the physician with legal, ethical, and practical implications. This prospective study, conducted in three community pediatric clinics, examined the relationship of accompanying persons to the minors visiting the clinics. About 90% of the 1,104 visits were with an accompanying parent, mostly a mother. Over 9% of minors, especially adolescents, arrived at the clinic unaccompanied by a parent. A regression analysis demonstrated that for each increase of one month in age there was a 2% increased chance for a visit without a parent (p < .0001). Adolescents were more likely to be among the 6% of minors, who visited the clinic alone, with a rate 0.066 per 1,000 visits in the more affluent community, compared to 0.019 and 0.016 in the middle and low income communities (p < .001). Physicians as well as parents should be made aware of the regulations regarding accompaniment of minors on a visit to the clinic. Policies regarding unaccompanied visits should take into account the risk posed by the absence of a parent versus the right of adolescents for independence and privacy. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Urso, A. M. (2007). The reality of neonatal pain and the resulting effects. Journal of Neonatal Nursing, 13(6), 236-238.
Neonatal pain management has been an issue haunting the healthcare industry for the last two decades. It seems that only now are neonatal caregivers becoming more educated and conscientious of how important this issue is in the proper care of infant patients. However, progress still needs to be made in the establishment of pain management protocols in neonatal care settings worldwide. These protocols include proper assessment, proper treatment, family involvement, and adequate caregiver education. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
van Hooren, R., Widdershoven, G., van der Bruggen, H., van den Borne, H., & Curfs, L. (2005). Values in the care for young persons with Prader-Willi syndrome: Creating a meaningful life together. Child: Care, Health and Development, 31(3), 309-312.
Background: Caregivers sometimes feel frustrated by present emphasis on self-determination in the care for individuals with an intellectual disability. They are confronted with situations in which there is a conflict between providing high quality care and respecting the client's autonomy. Such conflicts are prominent in the care for people with Prader-Willi syndrome (PWS). This condition is characterized by overeating behaviour which frequently leads to serious obesity. The central question in the present study is how persons involved, parents and professional caregivers, deal with the problems of the prevention of obesity in young individuals with PWS in everyday life. Method: In-depth qualitative interviews were conducted with 23 parents and 14 professional caregivers of 18 persons with PWS. The interview data were analysed using the constant comparative method as described in grounded theory. Results: On the basis of analysis of the interviews four values emerge that parents and professional caregivers indicate as relevant and directive to their acting towards the child or the client: physical health, well-being, freedom and responsibility, and a liveable life. Furthermore, caregivers mentioned several enabling and limiting conditions that influence these values. And they named several interventions they used to realize the values. Conclusion: Of importance is the question how to create life in such a way that it is acceptable and meaningful for everybody involved. By building up a relationship to which acceptance and trust are central, a certain amount of independence and responsibility can be promoted. By creating trust it is possible to deal with rules in a less rigid way and to look where there is room for choices. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Vargas, C. M., & Prelock, P. A. (2004). Caring for children with neurodevelopmental disabilities and their families: An innovative approach to interdisciplinary practice. 372.
(from the jacket) Children with neurodevelopmental disabilities such as mental retardation or autism present multiple challenges to their families, health care providers, and teachers. Professionals consulted by desperate parents often see the problems from their own angle only, and diagnosis and intervention efforts wind up fragmented and ineffective. This book presents a model multidisciplinary approach to care, family-centered and collaborative, that has proven effective in practice. A pillar of the approach is recognition of the importance of performing culturally competent assessment and adjusting service delivery so that it is responsive to cultural differences. Detailed case stories illuminate the ways in which the approach can help children with different backgrounds and different disabilities. Most chapters include, besides references, study questions, lists of resources, and glossaries to facilitate easy comprehension by professionals with different backgrounds--in special education, communication sciences and disorders, clinical and counseling psychology, neuropsychology and psychiatry, social work, pediatrics-- and program administrators as well as students, trainees, and educated parents. Caring for Children With Neurodevelopmental Disabilities and Their Families constitutes a crucial new resource for all those professionally and personally concerned with these children. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Wade, S. L., Taylor, H., Yeates, K. O., Drotar, D., Stancin, T., Minich, N. M., et al. (2006). Long-term Parental and Family Adaptation Following Pediatric Brain Injury. Journal of Pediatric Psychology, 31(10), 1072-1083.
Objective: To determine whether parents of children with traumatic brain injuries (TBI) report increased injury-related burden, distress, and family dysfunction and to examine the effects of attrition on the results. Methods: Children with severe TBI, moderate TBI, and orthopedic injuries were followed at six time points from baseline to 6 years after injury. Parents completed measures of injury-related burden, psychological distress, and family functioning at each assessment. Mixed model analysis was used to examine long-term changes. Results: Attrition was higher among families in the severe TBI group with lower burden thereby amplifying group differences. The severe TBI group reported higher injury-related burden over time after injury than the other groups. Family functioning was moderated by social resources. Families of children with severe TBI and low resources reporting deteriorating functioning over the follow-up interval. Conclusions: Although environmental advantages moderate long-term effects on family functioning, families of children with severe TBI experience long-standing injury-related burden. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Washio, M., Arai, Y., Yamasaki, R., Ide, S., Kuwahara, Y., Tokunaga, S., et al. (2005). Long-Term Care Insurance, Caregivers' Depression and Risk of Institutionalization/Hospitalization of the Frail Elderly. International Medical Journal, 12(2), 99-103.
Background: In Japan, the environment for the elderly and their caregivers has undergone momentous changes. The public long-term care insurance system for the elderly took effect in 2000 and influenza vaccination came to be officially recommended for the elderly in 2001. Purpose: This paper describes caregivers' depression and the risk of institutionalization/hospitalization of the frail elderly. Methods: A series of studies on depression/burden among caregivers of the frail elderly and the risk of institutionalization/hospitalization of the elderly persons before and after the introduction of the public longterm care insurance system is introduced. Results: The depressive rate of caregivers was 53% before the public long-term care insurance system, and 3 years after the introduction of this insurance system, it decreased to 43%. Risk factors for caregivers' depression were a large amount of time spent on caregiving, little time to go out without accompanying their charges, a small number of family members, having no family member to help with caregiving, a low level of caregivers' utilization of social services, financial burden and behavioral disturbances of the frail elderly. Pneumonia and risk factors for caregivers' depression were risk factors for institutionalization/hospitalization, while having family doctors in clinics and caring for severely disabled elderly were protective factors. Conclusion: These findings indicate that prevention of pneumonia (e.g. preventing colds or flu) as well as reducing the caregiver's burden may be important to continue caring for the frail elderly at home. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Weiss, J. A., & Diamond, T. (2005). Stress in Parents of Adults with Intellectual Disabilities Attending Special Olympics Competitions. Journal of Applied Research in Intellectual Disabilities, 18(3), 263-270.
Background: It is important to determine how programmes serving the individual with intellectual disability may also help to reduce stress in parents of adult children with intellectual disabilities. The aim of this study was to test whether parents who frequently watch their children at Special Olympics (SO) competitions report less stress than those who watch with less frequency. Methods: A total of 57 mothers and 39 fathers completed the Parenting Stress Index in reference to their children with intellectual disability, whose ages ranged from 17 to 42.3 years. Frequency of parental attendance at competition and volunteering for SO was also assessed. Results: Parents who frequently attended their children's competitions reported less stress than those who attended with less frequency. Mothers who volunteer, reported more child-related stress than those who did not. A number of other gender-specific relations were found. Conclusions: These results support the hypothesis that parents who frequently see their children compete in SO have a more positive parent-child experience than those who do not attend with the same frequency. Experimental research, with controlled pre-post designs, is needed to directly assess any causal effect. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Wheeler, H. J. (2005). The importance of parental support when caring for the acutely ill child. Nursing in Critical Care, 10(2), 56-62.
Level 2 or above paediatric care may need to be instigated in an adult, critical care environment prior to retrieval to a specialist centre. To facilitate safe, effective and appropriate care of the child, it is essential that staff are aware of the precise needs of paediatric patients and the importance of parental involvement. The importance of parental support for the critically ill child is examined. Staff perceptions of parental need in comparison to actual need are explored to facilitate support for parents that will then aid paediatric recovery. Recommendations on how such information can be disseminated to staff are discussed. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Whetten, K., Leserman, J., Lowe, K., Stangl, D., Thielman, N., Swartz, M., et al. (2006). Prevalence of Childhood Sexual Abuse and Physical Trauma in an HIV-Positive Sample from the Deep South. American Journal of Public Health, 96(6), 1028-1030.
We examined prevalence and predictors of trauma among HIV-infected persons in the Deep South using data from the Coping with HIV/AIDS in the Southeast (CHASE) study. Over 50% of CHASE participants were abused during their lives, with approximately 30% experiencing abuse before age 13, regardless of gender. Caregiver characteristics were associated with childhood abuse. Abuse is related to increases in high-HIV-risk activities. The findings help explain why people engage in such high-risk activities and can provide guidance in designing improved care and prevention messages. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Wight, R., Beals, K., Miller-Martinez, D., Murphy, D., & Aneshensel, C. (2007). HIV-related traumatic stress symptoms in AIDS caregiving family dyads. AIDS Care, 19(7), 901-909.
This study assesses HIV-related traumatic stress symptoms in 135 AIDS caregiving family dyads in which the caregiver is a midlife or older mother or wife, and the care-recipient is her HIV-infected adult son or husband. Symptoms of HIV-related traumatic stress can be reliably measured in these dyads, with both caregivers and care-recipients reporting avoidant and intrusive thoughts. Among care-recipients, high symptoms are associated with high daily living assistance requirements, low dyadic adjustment, and high constriction of social activities. Among caregivers, high symptoms of traumatic stress are associated with being HIV positive, feeling overloaded by caregiving demands, and perceiving high levels of HIV stigma. Caregiving mothers and wives may feel traumatized 'courtesy' of their loved one's HIV infection, the caregiving scenario, or the resultant caregiving stress. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Williams, C. C., & Mfoafo-M'Carthy, M. (2006). Care: Giving, Receiving and Meaning in the Context of Mental Illness. Psychiatry: Interpersonal and Biological Processes, 69(1), 26-46.
Understanding the dynamics of caregiving is essential to providing effective support to individuals and families living with serious mental illnesses. Yet, research in this area has typically explored caregiving without consulting mentally ill people. This paper adds this overlooked viewpoint by exploring the experience of care relationships by people diagnosed with schizophrenia. A secondary analysis of interview data from 21 individuals reveals that relevant dimensions of care relationships include: providers of care; types of care received; self-care; contested practices in care; negotiating practices; recipients of care; and types of care provided to other people. Addressing care within this broader conceptualization can contribute to developing interventions for individuals and families that more fully recognize the potential for people with mental illnesses to be active participants in care relationships. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Williamson, G. M., Martin-Cook, K., Weiner, M. F., Svetlik, D. A., Saine, K., Hynan, L. S., et al. (2005). Caregiver Resentment: Explaining Why Care Recipients Exhibit Problem Behavior. Rehabilitation Psychology, 50(3), 215-223.
Objective: To determine how attributions caregivers make about the source of problem behavior of frail, older care recipients may contribute to caregiver resentment of care recipients and obligations associated with providing care. Design: Cross-sectional interview data, screened according to primary cause of need for care. Participants: 103 caregiver-care recipient dyads in which care recipient was cognitively impaired (CI; n = 72) or physically disabled without cognitive impairment (n = 31). Outcome Measure: 17-item Caregiver Resentment Scale. Results: Caregivers of CI elders reported providing more care in response to CI-related care recipient disturbing behavior. However, beyond the source of impairment, disturbing (externally attributable) behavior typical of CI, and amount of care provided, resentment was predicted by controlling and manipulative (internally attributable) care recipient behavior. Conclusions: Caregivers are more resentful when care recipients are difficult in ways that they can attribute to the person rather than to the illness. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Witmans, M. B., Dick, B., Good, J., Schoepp, G., Dosman, C., Hawkins, M. E., et al. (2008). Delivery of pediatric sleep services via telehealth: The Alberta experience and lessons learned. Behavioral Sleep Medicine, 6(4), 207-219.
Concerns regarding a child's sleep, identified by a caregiver or by the health care practitioner, are commonly raised but often left unexplored. Families in geographically isolated areas, with limited access to specialty services such as pediatric sleep medicine, are at increased risk for unmet treatment needs. Telehealth is a potential vehicle for delivery of these specialty services and overcoming barriers in diagnosing and treating sleep disorders in children by improving access and enhancing support for the families in their communities. This article describes the initiation of a pilot program in the delivery of multidisciplinary pediatric sleep medicine services via telehealth in Alberta, Canada. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Wittich, A. R., Mangan, J., Grad, R., Wang, W., & Gerald, L. B. (2007). Pediatric Asthma: Caregiver Health Literacy and the Clinician's Perception. Journal of Asthma, 44(1), 51-55.
Health literacy was assessed in pediatric asthma caregivers attending a university-based clinic. The medical provider's perception of caregiver health literacy was also examined. Eighty-six percent of the caregivers had adequate health literacy, 4% and 10% had marginal and inadequate health literacy, respectively. Health literacy was significantly higher for caregivers who were younger (p = 0.039) and had a higher level of education (p = 0.037). An agreement analysis revealed moderate agreement between provider perception of caregiver's health literacy and measured health literacy (Kappa = 0.51). The results suggest that medical providers may not accurately assess caregivers' actual health literacy level. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Wodehouse, G., & McGill, P. (2009). Support for family carers of children and young people with developmental disabilities and challenging behaviour: What stops it being helpful? Journal of Intellectual Disability Research, 53(7), 644-653.
Background: Many family carers find the support they receive in respect of their child's challenging behaviour unhelpful. This study sought to identify carer perceptions of the ways in which support is unhelpful and how it could be more helpful. Methods: Thirteen mothers, caring for a child with intellectual disability and challenging behaviour, were interviewed. Parental perceptions and concerns regarding support received were investigated. Transcribed interviews were analysed using interpretive phenomenological analysis. Results: Parents reported problems with generic disability services including accessing good services, obtaining relevant information, working relationships with professionals and issues with respite provision. Concerns were also expressed about challenging behaviour-specific provision including ineffective strategies being suggested, an apparent lack of expertise, insufficient input and their child's exclusion from services. Conclusions: More preventative approaches, more widespread adoption of effective behaviour management and improved partnership between professionals and families appear needed. Increasing family support may be ineffective if not accompanied by greater insight into the factors related to effectiveness and recognition of the role of informal support. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Wolff, J. L., & Kasper, J. D. (2006). Caregivers of Frail Elders: Updating a National Profile. The Gerontologist, 46(3), 344-356.
Purpose: Family caregivers comprise the backbone of long-term-care provision in the United States, yet little is known about how the composition and experience of family caregiving has changed over time. Design and Methods: Data are drawn from the 1989 and 1999 National Long-Term Care Survey and Informal Caregiver Survey to develop nationally representative profiles of disabled older adults and their primary informal caregivers at two points in time. Results: The proportion of chronically disabled community-dwelling older adults who were receiving informal assistance from family or friends declined over the period of interest, whereas the proportion receiving no human help increased. On average, recipients of informal care were older and more disabled in 1999 than in 1989. Primary caregivers were children (41.3%), spouses (38.4%), and other family or friends (20.4%); children were more likely and others less likely to serve as primary caregivers in 1999 relative to 1989. Primary caregivers provided frequent and high levels of help at both points in time. A striking increase was found (from 34.9% to 52.8%) in the proportion of primary caregivers working alone, without secondary caregiver involvement. Implications: In the context of projected demographic trends and budgetary constraints to public health insurance programs, these data underscore the importance of identifying viable strategies to monitor and support family caregivers in the coming years. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Wolosin, R. J. (2005). HIV/AIDS Patient Satisfaction With Hospitalization in the Era of Highly Active Antiretroviral Therapy. JANAC: Journal of the Association of Nurses in AIDS Care, 16(5), 16-25.
The purpose of this study was to investigate how HIV/AIDS patients evaluate hospitalizations and to contrast such evaluations with those of inpatients who were diagnosed with pneumonia or pleurisy. In all, 302 satisfaction survey records collected in 2002 from patients of U.S. hospitals were analyzed. Potential confounding variables were kept constant or statistically controlled. Patients with HIV/AIDS rated their care lower than patients with pneumonia or pleurisy. The survey section, Tests and Treatments, yielded a significant effect of diagnosis. In addition, there was a significant effect of diagnosis for two survey items: skill of the person who took your blood, and skill of the person who started the intravenous line. Results were discussed in terms of caregiver attitudes toward HIV/AIDS patients, and implications for nursing care were drawn. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Yantzi, N. M., Rosenberg, M. W., & McKeever, P. (2007). Getting out of the house: The challenges mothers face when their children have long-term care needs. Health & Social Care in the Community, 15(1), 45-55.
In most industrialised countries, the care needs of those who are sick, disabled and frail are increasingly met in peoples' homes. One of the implications of this shift in the site of care is that individuals with long-term care needs and their family care providers experience social and spatial isolation. Many are housebound and most face considerable challenges in getting out of the house. This paper illuminates these challenges as they are experienced by mothers of children with long-term care needs, and the resulting isolation and disconnection that they experience. Eleven semistructured interviews were conducted in two regions of Ontario, Canada. Grounded theory informed the analysis of the mothers' accounts of their experiences of getting out of the house. The present findings are derived from a larger investigation of the meanings and experiences of the home as a place of caring for families with children who have long-term care needs. Secondary analysis of the data found that three main challenges restricted the mothers' abilities to leave their houses. Mothers experienced difficulties getting out of the house when they attempted to leave with the child, and when the child was left with an alternative care provider. Physical challenges were associated with the work and planning required in moving the child's equipment and supplies, meticulous planning of the outing within the daily schedule, and navigating barriers in the built and natural environments. Social challenges reflected the lack of people within the mothers' social network of family and friends who have the knowledge and expertise to care for the child. Service challenges resulted from the gaps between the policies and practices of paid respite, and the conditions that must be satisfied in order for mothers to be able and/or willing to leave the house. The authors also examined the reasons why some of the mothers worked from home, and the strategies that they used to get out of the house for employment. In this paper, the authors discuss each challenge, and how it contributes to the mothers' social and spatial isolation. The mothers' experiences elucidate the differences between living in a community and being part of a community. The consequences of the isolation on mothers' daily lives are not recognised in home and community care policy. The suggestions that are put forward concerning paid respite have relevance for home and community care policy and practice. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Young, A. F., & Chesson, R. A. (2008). Determining research questions on health risks by people with learning disabilities, carers and care-workers. British Journal of Learning Disabilities, 36(1), 22-31.
Here we describe the process by which research questions were developed for reducing health risks for people with learning disabilities. A participatory approach was used to give service users and carers a clear voice in deciding questions, thereby setting the research agenda. Audio-taped interviews and focus groups were used. Forty people (20 service users, 10 carers, 10 care-workers) were recruited and gave consent for interview. Interviews incorporated scenarios and these were used to describe two different types of health risks: (i) those relating to lifestyle, and (ii) those associated with unrecognized illness. Participants were invited to specify a research question for each scenario. A total of 78 questions were identified, and from these, six key themes emerged. The themes were validated using three separate focus groups (service users, carers, care-workers). From this process six final questions encompassing participants' key research concerns were produced. Questions were resubmitted to participants for prioritizing, using a postal voting system (75% response rate). The research clearly demonstrates that people with learning disabilities and carers can identify and prioritize research questions they consider significant for improving health. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Yu, C., Lee, A., Wirrell, E., Sherman, E., & Hamiwka, L. (2008). Health behavior in teens with epilepsy: How do they compare with controls? Epilepsy & Behavior, 13(1), 90-95.
The goal of the study was to determine if adolescents with epilepsy have poorer health behavior than healthy controls. Health behavior was compared in two cohorts: cognitively normal teens aged 11-16 with epilepsy and similarly aged controls. Teens completed the Health Behaviour in School-Aged Children (HBSC) and Piers-Harris II, and the primary caregiver completed the Family Assessment Measure III. Forty-four teens with epilepsy and 119 orthopedic controls returned questionnaires. Adolescents with epilepsy had poorer health behavior than controls (P < 0.003). They felt significantly less positive about their health (P < 0.01) and were less physically active (P < 0.02). Poorer family function (P < 0.05) and lower self-esteem (P < 0.001) were predictors of poorer health behavior. Given the increased prevalence of comorbid diseases in adults with epilepsy, clinicians should routinely query teens with epilepsy regarding health behavior and provide anticipatory guidance and appropriate interventions for poor health behavior choices. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Zampelli, A. R. (2007). Improving quality of life at home for pediatric patients and families with primary immune deficiencies using subcutaneous immune globulin infusions. Home Health Care Management & Practice, 19(6), 431-435.
Pediatric patients diagnosed with primary antibody deficiencies often require lifelong immune globulin replacement to help protect them from life-threatening infections. Although this is not a cure or a treatment for the disorder, replacement therapy is necessary to maintain health. The two current viable routes for immune globulin replacement are intravenous or subcutaneous. For many patients, subcutaneous infusions improve quality of life by offering greater independence and better control of the therapy situation and daily life. Subcutaneous infusions have been shown to be easy for both adult patients and children and their parents and to be safe, with minimal or no systemic reactions and no transmission of the hepatitis C virus. All of these factors are very important when considering replacement therapy. Home nursing care and support can also help provide additional support to improve treatment outcomes to enhance quality of life. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).
Zarit, S. H. (2009). Empirically supported treatment for family caregivers. Qualls, Sara H, 131-153.
(from the chapter) Caring for a family member with dementia or another late-life disability is a challenging and often stressful process. As other chapters in this volume have observed, family caregivers are at increased risk of mental health problems, physical illness, and mortality compared to people the same age who are not caregivers. This is a high price to pay, although some caregivers take on the task willingly and without complaint. In this situation, the clinical specialist in geropsychology can make a valuable contribution by drawing upon a wide range of clinical skills that have proven efficacy in helping caregivers manage the stressors in their lives, thereby reducing the threat to their health and emotional well-being. This chapter reviews a growing body of evidence on treatments and other interventions for family caregivers. Several comprehensive meta-analyses have been published in recent years. These reviews provide useful descriptive and quantitative information on the effects of interventions. Rather than cover the same material, I have decided to highlight those clinical approaches that appeal the most promising. My goal is to build toward an empirically validated tool kit for clinicians for reducing stress on caregivers. The information presented here will be followed in subsequent chapters by more detailed discussions of promising clinical techniques. The chapter is divided into three sections. First, as a foundation, I examine some of the goals and assumptions about clinical interventions with caregivers. Second, I provide a brief overview of the most frequent clinical components of caregiver interventions. Finally, I turn to the findings from specific empirical studies, examining approaches that have support and discussing some of the problems in the research literature that need to be taken into account in interpreting the findings. (PsycINFO Database Record (c) 2009 APA, all rights reserved).
Zesiewicz, T., Pater-Larson, A., Hauser, R., & Sullivan, K. (2007). Social Security Disability Insurance (SSDI) in Parkinson's disease. Disability and Rehabilitation: An International, Multidisciplinary Journal, 29(24), 1934-1936.
Objective: Parkinson's disease (PD) causes significant economic burden for patients and caregivers. Social Security Disability Insurance (SSDI) provides insurance to workers in the United States who have been gainfully employed, but who are no longer able to work due to a medical condition. We performed a descriptive pilot study that examined PD patients' experience with SSDI. Methods: PD patients who were diagnosed with PD prior to age 60 and were followed at an academic movement disorders center were consecutively invited to participate in a survey concerning their employment history and experience with SSDI. Results: All 68 invited patients participated in the study (mean age 58 years, mean disease duration 9.5 years). Eighty-two percent of patients felt that they were too disabled to work full time at a mean of 3.4 years after PD diagnosis. Patients applied for SSDI at a mean of 5 years after diagnosis, and two-thirds of PD patients who applied for SSDI obtained it on their first attempt. The primary debilitating symptom that subjectively contributed to work disability was fatigue (49% of patients). Patients who successfully acquired SSDI had extensive documentation of physician visits, and the aid of a disability lawyer. Conclusions: Patients felt they were too disabled to work full time at a mean of 3.4 years after diagnosis. Those who applied for SSDI did so at a mean of 5 years after diagnosis. Patients who obtained SSDI awards had extensive documentation of medical records or the help of a disability lawyer. (PsycINFO Database Record (c) 2009 APA, all rights reserved) (journal abstract).