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.
Key Words
List of Abbreviations:
ASD (autism spectrum disorder), ICF (International Classification of Functioning Disability and Health), ICF-CY (International Classification of Functioning Disability and Health for Children and Youth)To read this article in full you will need to make a payment
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Article info
Footnotes
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.
Identification
Copyright
© 2011 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.
