Original articleParent Perspectives to Inform Development of Measures of Children's Participation and Environment
Section snippets
Methods
This study used a descriptive design and qualitative methods with focus groups and interviews. Recruitment began when approval for this study was obtained from the institutional review boards of 3 universities involved in data collection. A purposeful maximum variation sampling strategy33 was used to gather information from parents who were expected to have different experiences related to their children's participation and who were interacting with different social services, education, and
Participants
Forty-two parents participated in this study. There were 25 parents of children with disabilities: 14 from the United States (Greater Boston area, MA) and 11 from Canada (Greater Hamilton area, Ontario). There were 17 parents of children without disabilities from the United States (Greater Boston, MA). All parents were English speaking. The children discussed by parents in this study lived at home, except for one 15-year-old girl with severe mental illness from Canada who lived in a residential
Discussion
Findings of this study offer additional insights from parents about important aspects of children's participation and environment that have informed the design of a parent-report measure of children's participation and environment. Findings are discussed as they relate to (1) the impact of disability, (2) the ICF,3, 19 (3) understanding children's participation and environment, and (4) implications for the design of measures of children's participation and environment.
Conclusions
Findings from this study have suggested a number of important considerations for the design of parent-report measures of participation and environment for children with and without disabilities. Although our focus was to inform the design of population-based measures, the knowledge gained from this study also had implications for both individualized (child- and family-centered) and program-level assessment. These findings have informed our development of a parent-report measure currently being
Acknowledgments
We thank the agencies that helped us access families of children with disabilities, Tufts University Department of Occupational Therapy graduate students for recruiting and interviewing families of children without disabilities, and our research team colleagues who assisted with the research described in this article: Rebecca Braman, MS, OTR, Haley Jepson, MS, OTR, Ying Chia Kao, MA, OTR, Jessica Kramer, PhD, OTR, Angela Lollini, MS, OTR, Brittany Ryan, BS, Rebecca Slavin, MS, Jessica Telford,
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Supported by the U.S. Department of Education, National Institute on Disability and Rehabilitation Research (grant no. H133G070140).
No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated.
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