Building a culture of engagement at a research centre for childhood disability
Childhood disability; Collaborative auto-ethnography; Family engagement in research; Organizational ethnography
Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement embedded in the wider infrastructure of organizations, and if so how? What are the long-term effects of engaging parents on research teams on the culture of how research is conducted? This study seeks to address these two gaps by examining how a culture of family engagement has been built over time at CanChild Centre for Childhood Disability Research at McMaster University in Ontario, Canada.
Pozniak K; Buchanan F; Cross A; Crowson J; Galuppi B; Grahovac D; Gorter JW; Hlyva O; Ketelaar M; Kraus de Camargo O; Krpan Mesic M; Martens R; McCauley D; Nguyen L; Palisano RJ; Phoenix M; Putterman C; Rosenbaum P; Sprung J; Strohm S; Teplicky R; Thomson D; Wright M
Research Involvement and Engagement
2021
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).
<a href="http://doi.org/10.1186/s40900-021-00319-5" target="_blank" rel="noreferrer noopener">10.1186/s40900-021-00319-5</a>
The health of primary caregivers of children with cerebral palsy: how does it compare with that of other Canadian caregivers?
Child; Female; Humans; Male; Adult; Middle Aged; Health Status; Caregivers/psychology; Cerebral Palsy; Telemeres; Employment/statistics & numerical data; Mental Health/statistics & numerical data
BACKGROUND: Caring for any child involves considerable resources, but the demands for these resources are often increased when caring for a child with a disability. These demands have implications for the psychologic and physical health of the caregiver (CG). Although a number of recent trends in health care stress the importance of studying and promoting the health of CGs of children with disabilities, the literature in this area exhibits 2 major weaknesses, ie, most studies draw conclusions from relatively small, potentially biased, clinic-based samples and the majority of work has focused on the psychologic health of CGs, whereas little research has been undertaken to study their physical well-being. The goal of this study was to compare the physical and psychologic health of CGs of children with cerebral palsy (CP) with that of the general population of CGs. METHODS: Data on the physical and psychologic health of 468 primary CGs of children with CP, drawn from 18 of 19 publicly funded children's rehabilitation centers in Ontario, Canada, were collected with a self-completed questionnaire and a face-to-face interview. Identical items and scales had been administered previously to nationally representative samples of the Canadian population in 2 large-scale Canadian surveys, ie, the National Population Health Survey (NPHS) and the National Longitudinal Study of Children and Youth (NLSCY). Subsamples of those data, restricted to adult residents of the province of Ontario who were parents, allowed a comparison of our sample of CGs of children with CP with parent samples from both the NLSCY (n = 2414) and the NPHS (n = 5549). OUTCOME MEASURES: Demographic variables included CG age, gender, education, income, and work-related variables. Psychologic health and support variables included social support, family functioning, frequency of contacts, distress, and emotional and cognitive problems. Physical health variables included the number and variety of chronic conditions, vision, hearing, and mobility problems, and experience of pain. RESULTS: CGs of children with CP had lower incomes than did the general population of CGs (proportion with income over 60,000 dollars: CG: 40.9%; NLSCY: 51.4%), despite the absence of any important differences in education between the 2 samples. Results showed that CGs of children with CP were less likely to report working for pay (CG: 66%; NLSCY: 81.2%), less likely to be engaged in full-time work (CG: 67.5%; NLSCY: 73.2%), and more likely to list caring for their families as their main activity (CG: 37.2%; NLSCY: 28.4%). Measures of support showed no difference in reported social support (CG: mean score: 14.5; SD: 3.4; NLSCY: mean score: 14.3; SD: 2.7) or family functioning (CG: mean score: 8.6; SD: 5.6; NLSCY: mean score: 9.0; SD: 4.9) between the 2 samples, although the CG sample did report a statistically greater number of support contacts (CG: mean score: 4.5; SD: 0.7; NPHS: mean score: 4.2; SD: 0.9). Measures of psychologic health showed greater reported distress (CG: mean score: 4.7; SD: 4.4; NPHS: mean score: 2.2; SD: 2.7), chronicity of distress (CG: mean score: 5.5; SD: 1.4; NPHS: mean score: 5.2; SD: 1.1), emotional problems (CG: 25.3% indicating problems; NPHS: 13.7%), and cognitive problems (CG: 38.8%; NPHS: 14.3%) among CGs of children with CP. They also reported a greater likelihood of a variety of physical problems, including back problems (CG: 35.5% reporting the condition; SE: 2.2%; NLSCY: 12.2%; SE: 0.7%), migraine headaches (CG: 24.2%; SE: 2.0%; NLSCY: 11.2%; SE: 0.7%), stomach/intestinal ulcers (CG: 8.4%; SE: 1.3%; NLSCY: 1.7%; SE: 0.3%), asthma (CG: 15.8%; SE: 1.7%; NLSCY: 6.3%; SE: 0.5%), arthritis/rheumatism (CG: 17.3%; SE: 1.8%; NLSCY: 7.3%; SE: 0.5%), and experience of pain (CG: 28.8%; SE: 2.1%; NPHS: 11.0%; SE: 0.5), as well as a greater overall number of chronic physical conditions (CG: 24.1% reporting no chronic conditions; NLSCY: 55.2%). CONCLUSIONS: Although many families cope well despite the added challenges of caring for a child with a disability, our findings suggest that the demands of their children's disabilities can explain differences in the health status of parents and that parents of children with CP are more likely to have a variety of physical and psychologic health problems. Many of these findings are consistent with a stress process model, in which stress from caregiving can directly or indirectly affect a variety of measures of health, although some of the findings (asthma and arthritis) seem to strain this hypothesis. Alternate interpretations of these findings include the possibility that parents who are in regular contact with the health care system may have more opportunities to discuss and receive attention for their own health concerns than do comparison adults or that the greater number of health issues reported by CGs is related to the nature of our study, perhaps leading these parents to focus on their health and well-being in more depth than is usually feasible in a population survey. CGs of children with CP also had lower incomes, despite the absence of any important differences in education. The findings are consistent with the idea that the financial burden of caring for a child with a disability results in part from a reduced availability of these parents to work for pay. IMPLICATIONS FOR SERVICE PROVIDERS: Physicians and other health care professionals should be aware of the important relationship between child disability and CG health. Family-centered policies and services that explicitly consider CG health are likely to benefit the well-being of both CGs and their families. Future work should address the extent to which the family-centeredness of services, as experienced by CGs, is associated with better health outcomes for parents and their families.
2004
Brehaut JC; Kohen DE; Raina P; Walter SD; Russell DJ; Swinton M; O'Donnell ME; Rosenbaum P
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/10.1542/peds.114.2.e182" target="_blank" rel="noreferrer">10.1542/peds.114.2.e182</a>
A home for medically complex children: the role of hospital programs
Child; Humans; home care services; Health Services Needs and Demand; Continuity of Patient Care; Models; Organizational; Disease Management; Hospitalized; Hospital-Based
The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care services. Despite concerted efforts to apply the medical home concept to the care of children with special healthcare needs, many barriers to its implementation still exist, in particular, for the subset of children with special healthcare needs who are medically complex. Applying the medical home concept to hospital-based care coordination may benefit both children with complex conditions and their families, as well as the community-based providers.
2008
Cohen E; Friedman J; Nicholas DB; Adams S; Rosenbaum P
Journal For Healthcare Quality
2008
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Journal Article
<a href="http://doi.org/10.1111/j.1945-1474.2008.tb01137.x" target="_blank" rel="noreferrer">10.1111/j.1945-1474.2008.tb01137.x</a>
The impact of a complex care clinic in a children's hospital
Cohen 2006 BMC HSR Refs
2010
Cohen E; Friedman JN; Mahant S; Adams S; Jovcevska V; Rosenbaum P
Child: Care, Health And Development
2010
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Journal Article
<a href="http://doi.org/10.1111/j.1365-2214.2009.01069.x" target="_blank" rel="noreferrer">10.1111/j.1365-2214.2009.01069.x</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
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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>
Evaluating health services delivery to children with chronic conditions and their families: development of a refined measures of processes of care (MPOC-20)
Cohen 2006 BMC HSR Refs
2004
King S; Rosenbaum P; King G
Child Health Care
2004
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Journal Article
<a href="http://doi.org/10.1207/s15326888chc3301_3" target="_blank" rel="noreferrer">10.1207/s15326888chc3301_3</a>
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
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Journal Article
<a href="http://doi.org/10.1542/peds.2004-1689" target="_blank" rel="noreferrer">10.1542/peds.2004-1689</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
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Journal Article
<a href="http://doi.org/10.1186/1471-2431-4-1" target="_blank" rel="noreferrer">10.1186/1471-2431-4-1</a>
Family and quality of life: key elements in intervention in children with cerebral palsy: Review
Rosenbaum P
Developmental Medicine & Child Neurology
2011
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.1469-8749.2011.04068.x" target="_blank" rel="noreferrer">10.1111/j.1469-8749.2011.04068.x</a>
Cerebral palsy: what parents and doctors want to know
Child; Humans; infant; Parents; Professional-Family Relations; Physician's Role; Patient Education as Topic; Forecasting; adolescent; Preschool; infant; Newborn; Developmental Disabilities/etiology; Cerebral Palsy/diagnosis/etiology/therapy; Research/trends
2003
Rosenbaum P
Bmj (clinical Research Ed.)
2003
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/10.1136/bmj.326.7396.970" target="_blank" rel="noreferrer">10.1136/bmj.326.7396.970</a>
Perspectives on transitions: rethinking services for children and youth with developmental disabilities
Child; Humans; Male; United States; Disability Evaluation; adolescent; Adolescent Transitions; Adolescent Health Services/standards; Developmental Disabilities/rehabilitation; Health Services Needs and Demand/organization & administration
Transition to adulthood for youth with developmental disabilities has become an important concern internationally of service providers working with these young people. Reflecting on the useful review by Binks and colleagues in this issue of the Archives, we argue as developmentalists that this is an ideal time to step back from our traditional preoccupation with "treatment" of childhood disability and to reconsider broadly what our goals for intervention ought to be. We invoke the concepts of the International Classification of Functioning, Health and Disability framework and draw on research that taps the voices of young people with disabilities-voices we believe have a lot to tell us about what has and has not worked for them. We suggest that there are unparalleled opportunities to enhance transition to adulthood for young people with developmental disabilities, in part by a feed-forward of the best of childhood services, and to work to prevent many of the difficulties faced by the current generation making this challenging transition.
2007
Rosenbaum P; Stewart D
Archives Of Physical Medicine And Rehabilitation
2007
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/10.1016/j.apmr.2007.06.001" target="_blank" rel="noreferrer">10.1016/j.apmr.2007.06.001</a>
Development, reliability and validity of a new measure of overall health for pre-school children
PedPal Lit; Cohort 2 (AUS)-150 VLBW 3-years old from Australia
2005
Saigal S; Rosenbaum P; Stoskopf B; Hoult L; Furlong W; Feeny D; Hagan R
Quality of Life Research
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/10.1007/s11136-004-4228-7" target="_blank" rel="noreferrer">10.1007/s11136-004-4228-7</a>
Structural equation and log-linear modeling: a comparison of methods in the analysis of a study on caregivers' health
Child; Cross-Sectional Studies; Female; Humans; Male; Adult; Logistic Models; Questionnaires; Self Concept; Socioeconomic Factors; Ontario; Health Status; Linear Models; Adaptation; Psychological; Family/psychology; social support; disabled children; Cerebral Palsy; Telemeres; Caregivers/psychology/statistics & numerical data
BACKGROUND: In this paper we compare the results in an analysis of determinants of caregivers' health derived from two approaches, a structural equation model and a log-linear model, using the same data set. METHODS: The data were collected from a cross-sectional population-based sample of 468 families in Ontario, Canada who had a child with cerebral palsy (CP). The self-completed questionnaires and the home-based interviews used in this study included scales reflecting socio-economic status, child and caregiver characteristics, and the physical and psychological well-being of the caregivers. Both analytic models were used to evaluate the relationships between child behaviour, caregiving demands, coping factors, and the well-being of primary caregivers of children with CP. RESULTS: The results were compared, together with an assessment of the positive and negative aspects of each approach, including their practical and conceptual implications. CONCLUSION: No important differences were found in the substantive conclusions of the two analyses. The broad confirmation of the Structural Equation Modeling (SEM) results by the Log-linear Modeling (LLM) provided some reassurance that the SEM had been adequately specified, and that it broadly fitted the data.
2006
Zhu B; Walter SD; Rosenbaum P; Russell DJ; Raina P
Bmc Medical Research Methodology
2006
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/10.1186/1471-2288-6-49" target="_blank" rel="noreferrer">10.1186/1471-2288-6-49</a>