Parent Needs and Strategies for Promoting Child Participation: What We Learned from Developing the Participation and Environment Measure for Children and Youth (PEM-CY)
In the In Brief titled “An Evaluation of the Participation and Environment Measure for Children and Youth (PEM-CY)”, we talked about how we tested the PEM-CY with nearly 600 parents of children and youth across Canada and the United States. This helped us understand how well the PEM-CY performed as a measurement tool. It also provided an opportunity for parents to tell us about their needs and the strategies they have developed for promoting their child’s participation in the home, school and community settings. This In Brief will focus on what parents told us.
How did we gather information about parent needs and strategies?
In the last phase of the PEM-CY development, we used a web-based survey to test the PEM-CY with parents of children with and without disabilities in Canada and the United States (see the In Brief titled “An Evaluation of the Participation and Environment Measure for Children and Youth (PEM-CY)” for more details). The PEM-CY includes open-ended questions that ask parents to share things that they or other family members do to help their child participate successfully in everyday activities. We reviewed their written responses to identify common and unique points shared by these parents. We also compared the results between parents of children with and without disabilities to see if there were any differences between the two groups.
What do parents need to promote their child’s participation?
Parents of children with disabilities:
Identified over three times as many needs as parents of children without disabilities
The top four needs across home, school and community settings included: one-to-one support, equipment and physical design modifications, access to more programs, funding
Parents of children without disabilities:
- Also listed “access to more programs” and “funding” as the top needs across home, school and community settings
What strategies do parents use to promote their child’s participation?
The most common strategies for both groups of parents included:
doing an activity with their child, such as playing basketball together
actively looking for ways their child could participate at home, school and in the community, such as organizing play dates with other children
attending a child’s event, such as a recital or competition
providing positive reinforcement, such as giving praise or rewards
making participation “fun”
Although the two groups of parents shared similar strategies, the examples provided by parents of children with disabilities tended to be more disability-specific. For example, they would talk about investigating programs within the community that would suit the child and his/her abilities.
Other common strategies identified by parents of children with disabilities included:
finding or creating opportunities for their children to participate in activities with other children
encouraging and helping children to get involved in activities with friends
setting up the activity and environment to match the child’s abilities and interests, with attention to his/her physical, cognitive and/or social needs
preparing the child for successful participation, such as helping the child develop skills needed for the activity ahead of time
driving children to activities, or providing other means of transportation, such as a taxi
educating their children about ways to participate and its benefits
educating others (including instructors, teachers, other parents and the children’s friends) about what their child can do and the things the child needs to help him/her be part of the activity
We have learned a great deal about parent needs and strategies for promoting child participation from this test of the PEM-CY. While there were some similarities in the identified needs and strategies between the parents of children with and without disabilities, parents of children with disabilities clearly identified many more needs than the parents with children without disabilities. Their identified needs and strategies also represented a variety of physical and social barriers associated with their child’s disability. The findings suggest that asking parents about needs and strategies is an important part of a therapy assessment because it enables parents to share their expertise in promoting the child’s participation. To learn more about this part of the study, please refer to:
Bresnahan, J., Hamilton, A., Hollebone, S., Lakatos, H., Memole, L., & Bedell, G. (April 2012). Parent Needs & Strategies for Promoting Child Participation. Poster presented at the American Occupational Therapy Association Conference, Indianapolis, IN.
For more information on the Participation and Environment Measure for Children and Youth (PEM-CY), please contact Rachel Teplicky, the project coordinator (firstname.lastname@example.org).