Parent perspectives to inform development of measures of children's participation and environment.

OBJECTIVE: To obtain parents' perspectives on children's participation and environment to inform the development of new measures. DESIGN: Descriptive design using qualitative methods with focus groups and semistructured interviews. SETTING: Focus groups and interviews with parents of children with disabilities were held on campus, in the home, and at community agencies; interviews with parents of children without disabilities were conducted in their homes. PARTICIPANTS: Parents (N=42): parents of children with disabilities (n=25) from the United States (n=14) and Canada (n=11) and parents of children without disabilities (n=17) from the United States. Most children (93%) were aged 5 to 16 years. Children with disabilities had diagnoses characterized by psychosocial, learning, attention, and sensory-processing difficulties. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Not applicable. RESULTS: Parents described common life activities and environmental factors that were similar to and expanded on categories currently reported in the literature. Differences identified among parents mainly focused on impairments and challenges of children with disabilities and concerns related to activities and programs designed for them. Parents spontaneously talked about participation and environmental factors together. Their descriptions consistently included information about features of the physical and social environment and other factors that influenced their child's participation, such as demands of the activity, parent strategies, and the child's age, preferences, and abilities. Parents' standards and expectations for their child's participation often varied depending on the specific setting, activity, and situation. CONCLUSIONS: Findings have informed the development of a parent-report measure that explicitly links participation and environmental factors specific to home, school, and community settings. Having 1 measure to assess participation and environment rather than using distinct tools to assess each construct separately should situate the child's participation in real-life contexts.

Exploring postinjury living environments for children and youth with acquired brain injury.

OBJECTIVES: To explore and describe the extent to which children and youth (10-18y) with acquired brain injury in Ontario are living in environments considered inappropriate, to describe the nature of services and supports in those environments, and to determine appropriate living environments for children and youth with acquired brain injury. DESIGN: A mixed-methods approach with a case-study design was used in which the living environment represented the case. This article reports on the qualitative component. SETTING: Community agencies and service providers. PARTICIPANTS: Forty-four service providers across a wide range of profit and nonprofit services for children and youth with acquired brain injury throughout the province of Ontario. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURE: Semistructured in-depth interviews with participants. RESULTS: Seven major themes emerged from the data: kids go home, a continuum of appropriateness, show me the way home, same chapter different story, cracking the acquired brain injury code, who said care was fair, and coping, and managing and advocating: new dimensions for families. Important service recommendations were also reported. CONCLUSIONS: Most children and youth with acquired brain injury are living at home. The level of appropriateness of the environment for children and youth after acquired brain injury can depend on multiple interrelated factors including type and severity of acquired brain injury, existing services and service delivery, acquired brain injury knowledge, and family's ability to cope and manage.