Participation Knowledge Hub
What is participation?
Participation is defined by the World Health Organization as “involvement in life situations”. 1 At home, school and in their communities, children and youth take part in a wide range of activities, such as playing games and team sports, doing arts and crafts, joining a youth group, or going to the movies with friends. Participation in everyday activities plays a key role in child and youth development. 2,3
Children and youth with disabilities; however, are often more restricted in their participation than are their typically developing peers. 4-6 There are many things that can impact a one’s ability to participate, including a person’s abilities, skills, and preferences, as well as their health condition. In addition, the environment also plays an important role in successful participation. 1,7
What is the environment and why is it important?
When considering the environment, the first thing that usually comes to mind is the physical environment (e.g., the presence of elevators and ramps, access to buildings and public transportation). However, a person’s environment includes many other things, such as the social environment (e.g., family and peer support), attitudes of others, and institutional policies (e.g., availability and cost of programs, waiting time).
In many situations, especially those involving children with lifelong health conditions, changing the environment can be a much more practical way to enable participation than trying to change the child’s physical characteristics and/or abilities. As such, the environment is recognized as an important area of focus for families, researchers and clinicians.
Throughout this Participation Knowledge Hub, you will find information about participation and the environment, along with tips and strategies for making child and youth participation the best it can be!
How can we measure participation?
PREP – Pathways and Resources for Engagement and Participation – is an evidence-based approach to occupational therapy that focuses on enhancing participation through modifying the environment. Using this skills-based approach, occupational therapists work with the client (and his/her parent or caregiver when appropriate) to identify aspects of the environment and the activity that either support or hinder participation. LEARN MORE
The PEM-CY is a measure that evaluates participation in the home, at school, and in the community, alongside environmental factors within each of these settings. PEM-CY is the first measure of its kind as it assesses both participation and environmental factors in the same framework. LEARN MORE
“I think that it opened their eyes to what is possible and what they could do with their child and what they could do with their family.” - Occupational Therapist on the PREP – Pathways and Resources for Engagement and Participation
Participation 101: Tip Sheets
The Participation 101 Tip Sheets provide information about a broad range of participation topics. These Tip Sheets apply to children and youth of all abilities and were designed with input from parents, occupational therapists and representatives from community organizations. You can print the Tip Sheets, customize them or use them as inspiration for developing additional participation specific topics.
- Change Rooms
- Having Fun On Halloween!
- Joining a New Sports Team
- Making it Work & When to Move On...
- Trying a New Activity
I Want to Participate In...
The “I Want to Participate In…” series of Tip Sheets provide examples of a wide range of leisure activities and are designed for use by children and young adults. Developed with input from families, occupational therapists and representatives from community organizations, these Tip Sheets highlight the use of a strengths-based, skills-based approach to participation. You can print the Tip Sheets, customize them or use them as a template for other leisure activities.
Participation Information for Programs & Agencies
The Participation Information Forms for Programs and Agencies were developed with input from community organizations, parents and occupational therapists. Using a skills-based and strengths-based approach to participation, these Tip Sheets represent a broad range of leisure activities and were designed to enable parents to provide information to a program or agency about their child/youth’s abilities and goals. The focus on the child’s abilities and goals will foster positive communication and problem-solving between families and program staff. You can print these forms, customize them or use them as a template for other leisure activities and community programs/events.
What Participation Means to Me
"What Participation Means to Me" features video clips of young adults who were part of a Participation Intervention study at CanChild. In the clips, the participants answer the question, "What does participation mean to me?" and talk about what it was like to focus on achieving their leisure-based participation goals.
This section will also include a "What Participation Means to Me" template to be used by families, children and young adults to submit inspiring participation stories. Start planning your submission and watch for this template to become available.
There are a lot of great websites that provide information about participation and stories that will inspire you to get involved in new activities. Below is a list of websites we have reviewed. These recommended websites provide reliable, useful information for children, youth and parents. Please let us know if you have other websites you like us to review by sending an email to Rachel Teplicky.
About the Participation Knowledge Hub
The Participation Knowledge Hub is an evidence-based online resource for sharing information about child and youth participation. The materials that are available on the Participation Knowledge Hub, including Participation Tip Sheets, success stories, and research summaries, have been developed with input from families, service providers, and researchers. We envision that the Participation Knowledge Hub will become a go-to resource for current, dependable, practical information about child and youth participation.
The people behind the Knowledge Hub are researchers from universities across Canada and the United States:
- Mary Law, McMaster University, CanChild
- Rachel Teplicky, McMaster University, CanChild
- Chia-Yu Lin, McMaster University, CanChild
- Laura Turner, McMaster University, CanChild
- Wendy Coster, Boston University
- Gary Bedell, Tufts University
- Mary Khetani, Colorado State University
- Dana Anaby, McGill
Our research team works in partnership with individuals and organizations who also strive to promote and share knowledge about children's participation and environment. We partner with:
- Families of children and youth with and without disabilities;
- Service providers who provide healthcare, education, social and recreational services;
- Organizations such as children's treatment and rehabilitation centres, hospitals, and health care organizations;
- Researchers and university educators in Canada, United States, and around the world;
- Policy analysts and decision-makers.
The development of the Participation Knowledge Hub is funded by the Knowledge Translation Supplement Grant from the Canadian Institutes of Health Research. Previous research focused on development and validation of the Participation and Environment Measure for Children and Youth (PEM-CY) was funded by National Institute on Disability and Rehabilitation Research (NIDRR).