How Parents View Their Child’s Participation and Environment: Creating a Foundation for the PEM-CY
In the In Brief titled “The Participation and Environment Measure for Children and Youth (PEM-CY): An innovative measure for home, school and community”, we talked about why we developed the PEM-CY, how we did it, and the potential benefits of using this new measure. In the first phase of the PEM-CY development, we interviewed parents in small groups (i.e., focus groups) and individually to learn about their views on children’s participation and the environment. This helped us to make sure that the content of PEM-CY is consistent with parents’ ideas. This current In Brief includes more details about what we learned from parents about their child’s participation and the impact of the environment on participation.
What was involved in the first phase of developing the PEM-CY?
We started by interviewing small groups of parents of children and youth with disabilities. We then did one-on-one interviews with parents of children and youth with and without disabilities. We were very interested in hearing from parents of children with intellectual, emotional and behavioural disabilities because the current research had focused more on those with physical disabilities. All group and oneon-one interviews were done in English and lasted about 60 to 90 minutes. We used question guides to help us explore parents’ views on children’s participation and the environment. For example, we asked the parents what the word ‘participation’ meant to them, and what helped or made it harder for their child to participate in important activities.
All interviews were audiotaped and then written out word for word. Each written account (or transcript) was reviewed to make sure they were accurate. Members of our research team then read through each transcript, first on our own and then together, to identify common and unique points shared by the parents. We asked ten parents to review our prepared summary to make sure that their opinions were accurately noted.
What did we learn from our parent participants?
Parents, regardless of whether or not their child had a disability, identified similar important activities across home, school and community settings.
Parents talked about a wide range of factors that influenced their child’s participation, such as child factors (e.g., personality, preference), activity features and demands (e.g., degree of challenge), physical environment (e.g., design of buildings and other indoor and outdoor spaces), social and family environment (e.g., relationships and family involvement, attitudes of others in the community), services, resources (e.g., time and money) and policies.
Parents shared strategies that they used to promote their child’s participation, such as providing encouragement and rewards. However, only parents of children with disabilities talked about how they put in efforts at home to prepare their child for participating in specific activities at school and in the community. For example, they talked about taking time each morning to “preview” the schedule for the day. These parents also talked about modifying the physical, cognitive & social demands of activities and environments, and finding suitable programs for their child to promote their child’s participation.
Parents discussed qualities of participation. For example, they used terms such as frequency, involvement and initiative to describe participation.
Parents included information about the environment (e.g., physical environment, social demands of the activity) when they talked about their child’s participation.
Parents emphasized that their child’s participation may vary depending upon the activity, setting and situation.
How did these parents’ ideas help us with the design of the PEM-CY?
Findings from the parent interviews provided us with insights about child and youth participation and the environment. This valuable information helped us lay a solid foundation for developing the PEM-CY, that:
included a wide range of important activities and environmental factors in home, school, and community settings;
captured ways that parents understand and evaluate participation (e.g., “participation is about frequency and involvement” and “whether a parent desires change in their child’s participation”);
asked parents about the strategies they used to promote their child’s participation in different settings; and
included questions about participation and environment in one measure.
The PEM-CY is currently available as a pdf and an electronic version, which can be downloaded and completed on your computer. To learn more about the PEM-CY, please refer to the In Brief titled “The Participation and Environment Measure for Children and Youth (PEM-CY): An innovative measure for home, school and community”.
To learn more about this phase of the study, please refer to:
Bedell, G., Khetani, M., Cousins, M., Coster, W., & Law, M. (2011). Parent perspectives to inform development of measures of children's participation and environment. Archives of Physical Medicine and Rehabilitation, 92, 765-773.
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)