Parent Perspectives to Inform Development of Measures of Children's Participation and Environment

Bedell GM, Khetani MA, Cousins MA, Coster WJ, Law MC. Parent perspectives to inform development of measures of children's participation and environment.ObjectiveTo obtain parents' perspectives on children's participation and environment to inform the development of new measures.DesignDescriptive design using qualitative methods with focus groups and semistructured interviews.SettingFocus 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.ParticipantsParents (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.InterventionsNot applicable.Main Outcome MeasureNot applicable.ResultsParents 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.ConclusionsFindings 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.