YouthREX Research Summaries ask Just Six Questions of research publications on key youth issues. These summaries get at what the youth sector needs to know in two pages or less!

1. What was this research about?
This research focuses on the experiences of youth with severe disabilities who participated in self-directed leisure activities. This research is important because, like most youth, young people with severe disabilities seek belonging, enjoyment, and relationships. Unfortunately, leisure time is often scheduled out of the day for youth with severe disabilities, who often require enhanced care-giving routines, additional time for planning and transportation, and for whom it may take more time to communicate. This research can help families and service providers improve the quality of care and of life for youth with severe disabilities.

2. Where did the research take place?
This research took place in southern Ontario, and included the Toronto, Hamilton, and Niagara regions.

3. Who is this research about?
This research focused on youth with severe disabilities. The authors use this term to describe youth who have ‘high levels of both impairment and social exclusion’. More specifically, the study examined youth ages 16-22 who have a complex physical disability that requires multiple caregivers or who require assistive technologies to communicate.

“…it is important not to assume that youth with severe disabilities are not enjoying their participation or are not benefitting from their leisure experiences… belonging, enjoyment, and control and choice can be high in chosen activity settings” (p. 1634).

4. How was this research done?
The researchers used a mixed methods approach to their study, meaning that they used both quantitative and qualitative methods to collect and analyze their data. The researchers engaged 12 youth participants over the course of four visits. During these visits, the youth participated in semi-structured interviews, chose between two different activities, and completed a questionnaire about their experience. Examples of the activities include: playing video games, watching television, going to the library or shopping mall, and going for a walk. The researchers observed the youth in their activity settings, held informal conversations with them, completed field notes, and supported them to take photos or videos that represented their experience.

5. What are the key findings?
The research findings can be summarized according to three main themes: Social Connection, Fun, and Autonomy.

a) Social Connection: The research identified the importance of social connections as this directly related to whether the youth found the chosen activity enjoyable. Youth cared more about who they spent time with, rather than what they were doing.

b) Fun: Youth value experiences that offer them a sense fun and freedom. Fun was valued highly, though each participant’s definition of fun varied. The youth appreciated different sensory experiences, as well as feelings of accomplishment, acceptance, and inclusion in their activities.

c) Autonomy: Youth described that being in control during participation in their activity was important to them. This included being supported to make their own choices and have their desires and voices heard and respected. This supported youth to have a sense of personal autonomy and exercise independence within the course of the day.

6. Why does it matter for youth work?
Current interventions with youth who have severe disabilities emphasize skill building rather than leisure activities. However, participation in leisure activities for these youth produces important outcomes related to experiencing a sense of belonging, fun, control and choice. While therapeutic rehabilitation interventions are important, other less clinical activities produce beneficial developmental outcomes; having fun and feeling a sense of belonging, agency, and control are important.

Service providers working with youth with severe disabilities should design programs and support practices that balance clinical skill-building therapeutic interventions with meaningful leisure activities. Each individual young person will have different preferences regarding ‘meaningful’ experiences; therefore, and wherever possible, the young person should be given the opportunity to choose.