The health and well-being of caregivers of children with cerebral palsy.
Child; Female; Humans; Male; Cohort Studies; Adult; Parent-Child Relations; Parents; Questionnaires; Middle Aged; Self Concept; Ontario; Severity of Illness Index; Longitudinal Studies; Professional-Patient Relations; Family Health; Stress; Adaptation; Psychological; Caregivers/psychology; Models; social support; Theoretical; disabled children; Caregivers/psychology; Cerebral Palsy/psychology; Cerebral Palsy/psychology; Child Behavior Disorders/etiology; Foster Home Care; Psychological/epidemiology/etiology; Psychological/epidemiology/etiology
OBJECTIVE: Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources over time. Although impaired motor function is the hallmark of the cerebral palsy (CP) syndromes, many children with this development disorder also experience sensory, communicative, and intellectual impairments and may have complex limitations in self-care functions. Although caregiving is a normal part of being the parent of a young child, this role takes on an entirely different significance when a child experiences functional limitations and possible long-term dependence. One of the main challenges for parents is to manage their child's chronic health problems effectively and juggle this role with the requirements of everyday living. Consequently, the task of caring for a child with complex disabilities at home might be somewhat daunting for caregivers. The provision of such care may prove detrimental to both the physical health and the psychological well-being of parents of children with chronic disabilities. It is not fully understood why some caregivers cope well and others do not. The approach of estimating the "independent" or "direct" effects of the care recipient's disability on the caregiver's health is of limited value because (1) single-factor changes are rare outside the context of constrained experimental situations; (2) assumptions of additive relationships and perfect measurements rarely hold; and (3) such approaches do not provide a complete perspective, because they fail to examine indirect pathways that occur between predictor variables and health outcomes. A more detailed analytical approach is needed to understand both direct and indirect effects simultaneously. The primary objective of the current study was to examine, within a single theory-based multidimensional model, the determinants of physical and psychological health of adult caregivers of children with CP. METHODS: We developed a stress process model and applied structural equation modeling with data from a large cohort of caregivers of children with CP. This design allowed the examination of the direct and indirect relationships between a child's health, behavior and functional status, caregiver characteristics, social supports, and family functioning and the outcomes of caregivers' physical and psychological health. Families (n = 468) of children with CP were recruited from 19 regional children's rehabilitation centers that provide outpatient disability management and supports in Ontario, Canada. The current study drew on a population available to the investigators from a previous study, the Ontario Motor Growth study, which explored patterns of gross motor development in children with CP. Data on demographic variables and caregivers' physical and psychological health were assessed using standardized, self-completed parent questionnaires as well as a face-to-face home interview. Structural equation modeling was used to test specific hypotheses outlined in our conceptual model. This analytic approach involved a 2-step process. In the first step, observed variables that were hypothesized to measure the underlying constructs were tested using confirmatory factor analysis; this step led to the so-called measurement model. The second step tested hypotheses about relationships among the variables in the structural model. All of the hypothesized paths in the conceptual model were tested and included in the structural model. However, only paths that were significant were shown in the final results. The direct, indirect, and total effects of theoretical constructs on physical and psychological health were calculated using the structural model. RESULTS: The most important predictors of caregivers' well-being were child behavior, caregiving demands, and family function. A higher level of behavior problems was associated with lower levels of both psychological (beta = -.22) and physical health (beta = -.18) of the caregivers, whereas fewer child behavior problems were associated with higher self-perception (beta = -.37) and a greater ability to manage stress (beta = -.18). Less caregiving demands were associated with better physical (beta = .23) and psychological (beta = .12) well-being of caregivers, respectively. Similarly, higher reported family functioning was associated with better psychological health (beta = .33) and physical health (beta = .33). Self-perception and stress management were significant direct predictors of caregivers' psychological health but did not directly influence their physical well-being. Caregivers' higher self-esteem and sense of mastery over the caregiving situation predicted better psychological health (beta = .23). The use of more stress management strategies was also associated with better psychological health of caregivers (beta = .11). Gross income (beta = .08) and social support (beta = .06) had indirect overall effects only on psychological health outcome, whereas self-perception (beta = .22), stress management (beta = .09), gross income (beta = .07), and social support (beta = .06) had indirect total effects only on physical health outcomes. CONCLUSIONS: The psychological and physical health of caregivers, who in this study were primarily mothers, was strongly influenced by child behavior and caregiving demands. Child behavior problems were an important predictor of caregiver psychological well-being, both directly and indirectly, through their effect on self-perception and family function. Caregiving demands contributed directly to both the psychological and the physical health of the caregivers. The practical day-to-day needs of the child created challenges for parents. The influence of social support provided by extended family, friends, and neighbors on health outcomes was secondary to that of the immediate family working closely together. Family function affected health directly and also mediated the effects of self-perception, social support, and stress management. In families of children with CP, strategies for optimizing caregiver physical and psychological health include supports for behavioral management and daily functional activities as well as stress management and self-efficacy techniques. These data support clinical pathways that require biopsychosocial frameworks that are family centered, not simply technical and short-term rehabilitation interventions that are focused primarily on the child. In terms of prevention, providing parents with cognitive and behavioral strategies to manage their child's behaviors may have the potential to change caregiver health outcomes. This model also needs to be examined with caregivers of children with other disabilities.
2005-06
Raina P; O'Donnell M; Rosenbaum P; Brehaut J; Walter SD; Russell D; Swinton M; Zhu Bin; Wood E
Pediatrics
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1542/peds.2004-1689" target="_blank" rel="noreferrer">10.1542/peds.2004-1689</a>
Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario
Child; Cross-Sectional Studies; Female; Humans; Male; Adult; Attitude to Health; Health Services Accessibility; Socioeconomic Factors; Patient Acceptance of Health Care; Sex Factors; Quality of Health Care; Respite Care; Non-U.S. Gov't; Research Support; social support; caregivers; Cerebral Palsy/complications/rehabilitation
OBJECTIVE: To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. METHODS: A total of 468 caregivers were interviewed about their experience with formal respite services. Interviews were part of a larger cross-sectional study on caregiver health. Caregivers were asked about their knowledge of formal respite services; their use of formal respite services in the past year; financial implications relating to formal respite use; perceived barriers to formal respite service use; and reasons for not using formal respite services (if applicable). RESULTS: Nearly half (46%) of caregivers in the sample reported using respite services in the past year. Most of the caregivers who used respite services used more than one source of respite, had services provided in their home, often for less than 1 day, and reported using them more than six times. The most commonly cited reason for using formal respite services was for a planned break. Many factors influenced caregivers' use of formal respite services. Caregivers who had a child with a lower level of function, with multiple additional conditions, or who was male, were more likely to use formal respite services. Although over 90% of caregivers indicated that respite use is beneficial for both their family and child, over 60% reported facing many barriers while attempting to access respite services. CONCLUSION: Results from this cross-sectional study indicate that caregivers who used respite services used them frequently for breaks from caregiving. Caregivers described facing many barriers while attempting to access respite services therefore to improve caregiver's experience with respite services, strategies are suggested.
2004
Damiani G; Rosenbaum P; Swinton M; Russell D
Child: Care, Health And Development
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1111/j.1365-2214.2004.00391.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2004.00391.x</a>
Caregiving process and caregiver burden: conceptual models to guide research and practice.
Child; Humans; Longitudinal Studies; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Caregivers/psychology; Models; Parents/psychology; Psychological; Stress; disabled children
BACKGROUND: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. DISCUSSION: Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. SUMMARY: This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.
2004-01
Raina P; O'Donnell ME; Schwellnus H; Rosenbaum P; King G; Brehaut J; Russell D; Swinton M; King S; Wong M; Walter SD; Wood E
Bmc Pediatrics
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1186/1471-2431-4-1" target="_blank" rel="noreferrer">10.1186/1471-2431-4-1</a>