Children with physical disabilities are at increased risk of limitations to participation in everyday activities. This study describes research examining the participation of children in day‐to‐day formal and informal activities (excluding mandated academic schooling). Using the Children's Assessment of Participation and Enjoyment (CAPE) measure, data on participation patterns were collected from 427 children (229 males, 198 females; mean age 10y [SD 2y 4mo]; range 6–14y) with physical limitations and from their families. The primary types of physical disability in the sample included cerebral palsy, spina bifida, acquired brain injury, and musculoskeletal limitations. Findings indicate a broad range of diversity and intensity of participation, with proportionately greater involvement in informal rather than formal activities. Significant differences in participation and enjoyment were found between males and females, and for children more than 12 years of age. Children's participation was less diverse in families reporting lower income, single‐parent status, and lower respondent parent education. These findings provide a foundation for an improved understanding of the participation of children with physical disabilities, which can assist families and service providers in planning activities that fit with their child's preferences and ensure active participation.
BackgroundParental 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.DiscussionEvidence 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.SummaryThis 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.
Participation in everyday activities is considered to be a vital part of children's development, which is related to their quality of life and future life outcomes. Research studies indicate that children with disabilities are at risk for lower participation in ordinary activities at home and in the community. This article presents a conceptual model of 11 environmental, family, and child factors that are thought to influence children's participation in recreation and leisure activities. The article outlines the existing evidence for the influence of these factors on one another and on children's participation. The review encompasses four bodies of literature: the participation of children or adults with disabilities, the risk and resilience of children facing adversity, the determinants of leisure and recreation activities, and the factors influencing physical activity and exercise. The proposed model is expected to be a useful tool for guiding future research studies and for developing policies and programs for children with disabilities and their families.
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