The Participation and Environment Measure for Children and Youth (PEM-CY): An innovative measure for home, school and community

In Brief © Wendy Coster, Mary Law, Gary Bedell, Mary Khetani, Dana Anaby, Rachel Teplicky and Chia-Yu Lin, 2013

What is the PEM-CY?

The Participation and Environment Measure for Children and Youth, or the PEM-CY, is a new measurement tool designed to help parents, service providers and researchers better understand the participation of children and youth. The PEM-CY measures participation in the home, school and community, along with environmental factors within each of these settings. It is the first tool of this type that measures participation and environmental factors at the same time. In this In Brief, we talk about why we developed this new measure, how we did it, and the potential benefits of using the PEM-CY.

Why did we develop the PEM-CY?

Participation in activities at home, school and in the community is an important part of childhood. Being involved in activities improves health and quality of life1 , and is an important goal of rehabilitation for children with disablities. 2 Parts of the environment (such as stairs or ramps, level of noise, attitudes of others and policies) can help or make it harder for children to participate. 3 We found that most of the measurement tools that looked at child and youth participation and the environment were long or they focused only on a particular type of disability or setting. 2 Many of these measures did not take family viewpoints into account and only covered some aspects of participation. 2 The purpose of this project was to develop a new measurement tool that would address these issues.

We wanted to develop a new measure that:

  • was short and could be filled out by parents,
  • captured a wide range of settings, activities, and environmental factors, and
  • reflected the viewpoints of families with children and youth of different ages, abilities, and backgrounds.

Who can benefit from using the PEM-CY, and how?

  • Parents can gain valuable information about their child’s participation and what environmental factors make the child’s participation easier or harder. Parents can use the information from the PEM-CY to help set goals for their child and come up with ideas to encourage participation.
  • Service providers can use information from the PEM-CY to identify activities in which the child is participating, highlight environmental features that may require attention, define therapy goals with the family, and identify strategies to improve participation.
  • Programs and agencies can use the PEM-CY to identify the type and extent of participation issues that children and youth within their program are facing, and to discover potential environmental supports that could help improve services and resource allocation.
  • Researchers can use the PEM-CY in research studies to examine the similarities and differences in participation across groups of children and youth, and across environments that differ in geographic locations, resources, or organizations.

How did we develop the PEM-CY?

This study included three major phases:

  • Phase 1: We began by reviewing the measurement tools that were already available. Then, we interviewed parents of children and youth with and without disabilities in groups and one-on-one. We combined information from these interviews to develop questions about participation and the environment (see In Brief titled “How Parents View Their Child’s Participation and Environment: Creating a Foundation for the PEM-CY” for more details about the interviews with parents).
  • Phase 2: The questions were then reviewed by experts and tested by parents. We revised the questions based on the feedback received during this phase.
  • Phase 3: We used a web-based survey to test the refined version of the PEM-CY with nearly 600 parents of children and youth aged 5 to 17 across Canada and the United States. We found that the PEM-CY was consistent in measuring participation and actually measured what we wanted it to measure (see In Brief titled “An Evaluation of the Participation and Environment Measure for Children and Youth (PEM-CY)” for more details about how we examined the quality of the PEM-CY).

What does the final version of PEM-CY look like?

The PEM-CY is for parents of children and youth aged 5 to 17, with and without disabilities.

It takes 25–40 minutes to complete.

A total of 25 types of activities are included. Examples are: “computer and video games” at home, “classroom activities” at school, and “neighborhood outings” in the community.

The 25 activities are grouped into three settings: home, school, and community.

For each setting, there are questions about participation and the environment:

Participation questions for each type of activity include:

  • Typically, how often does your child participate in 1 or more activities of this type?
  • The question is rated using an 8-point scale, from never to daily.
  • Typically, how involved is your child when doing these activities?
  • The questions are rated using a 5-point scale, from minimally involved to very involved.
  • Would you like your child’s participation to change in this type of activity?
  • Parents answer “Yes” or “No”. Those who answer “Yes” then select the type of change desired from a list of 5 options (e.g., more involved, less involved).

Environment questions are asked for each setting: 

  • Do the following environmental factors and activity demands help or make it harder for your child to participate in activities? 
  • Examples of environment factors and activity demands include: “physical layout of the home” and “social demands such as communication”. 
  • 4 response options are provided: not an issue, usually helps, sometimes helps/sometimes makes harder, usually makes harder. 
  • Are the following resources available and/or adequate to support your child’s participation? 
  • Examples of resources include: “supplies such as assistive devices or technology” and “information about activities, services, and programs”. 
  • 4 response options are provided: not needed, usually yes, sometimes yes/sometimes no, usually no.
  •  A sample from the community setting:

  • We also ask about strategies parents use to promote participation in each setting. 

The PEM-CY is currently available as a pdf and an electronic version that can be downloaded and completed on your computer. The electronic version includes a feature that produces a Participation Profile for the child based on the information provided. The Participation Profile will include a visual summary of the PEM-CY responses to make the results easy to understand. To find out how to get a copy of the PEM-CY, please visit our PEM-CY page in the Participation Knowledge Hub. 

What’s next? 

  • The Young Children’s Participation and Environment Measure (YC-PEM) is currently under development. The YC-PEM is designed for use by parents of children aged 1 to 5. 
  • The PEM-CY is also available in French, Korean, Portuguese and Spanish. Translation of the PEM-CY into other languages is underway. 

For more information on the Participation and Environment Measure for Children and Youth (PEM-CY) please contact Rachel Teplicky, the project coordinator (teplicr@mcmaster.ca). 

References

1. Law, M. (2002). Participation in the occupations of everyday life. American Journal of Occupational Therapy , 56, 640-679. 

2. Coster, W., Law, M., Bedell, G., Khetani, M., Cousins, M., & Teplicky, R. (2012). Development of the participation and environment measure for children and youth: Conceptual basis. Disability and Rehabilitation, 34, 238-246. 

3. World Health Organization. (2001). International classification of functioning, disability and health. Geneva, Switzerland: WHO. 

4. Bedell, G. M., Khetani, M. A., Cousins, M. A., Coster, W. J., & Law, M. C. (2011). Parent perspectives to inform development of measures of children’s participation and environment. Archives of Physical Medicine and Rehabilitation, 92, 765-773.