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

Presented in part to the American Occupational Therapy Association, April, 21, 2009, Houston, TX.
https://doi.org/10.1016/j.apmr.2010.12.029Get rights and content

Abstract

Bedell GM, Khetani MA, Cousins MA, Coster WJ, Law MC. 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.

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.

    Reprints are not available from the author.

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