An integrated methods study of the experiences of youth with severe disabilities in leisure activity settings: the importance of belonging, fun, and control and choice

Abstract

Purpose: The aim was to examine the leisure activity setting experiences of two groups of youth with severe disabilities – those with complex continuing care (CCC) needs and those who have little functional speech and communicate using augmentative and alternative communication (AAC). Method: Twelve youth took part in a mixed methods study, in which their experiences were ascertained using qualitative methods (observations, photo elicitation and interviews) and the measure of Self-Reported Experiences of Activity Settings (SEAS). Data integration occurred using a “following a thread” technique and case-by-case analysis. Results: The analysis revealed several highly valued aspects of leisure activity setting experiences for youth, including engagement with others, enjoying the moment, and control and choice in selection and participation in activity settings. Conclusions: The findings provide preliminary insights into the nature of optimal activity settings for youth with severe disabilities, and the mediators of these experiences. Compared to other youth, the data illustrate both the commonalities of experiences and differences in the ways in which these experiences are attained. Implications for research concern the utility of mixed methods approaches in understanding the complex nature of participation experiences. Implications for clinical practice concern the importance of not assuming the nature of youths’ experiences.

Implications for Rehabilitation

• Service providers can lose sight of the importance of broader concepts of belonging, fun, and control and choice when providing interventions that focus on “participating” in an “activity” to build specific skills.

• In addition to the skill-based outcomes for youth with disabilities that are valued by the rehabilitation system, we suggest that consideration needs to be given to other types of outcomes that matter to youth, such as participating in a leisure activity for the sake of belonging or having fun.

• It is important not to assume that youth with severe disabilities are not enjoying their participation or are not benefiting from their leisure experiences.

• It is important not to “over-therapize” youth with disabilities and promote a balanced approach to therapy and leisure participation, by discussing with youth and families the beneficial developmental outcomes that can accrue from leisure activities.

• Activity setting
• experience
• leisure
• participation
• recreation
• severe disability
• young adults
• youth

Acknowledgements

We extend our thanks to other team members, including Beata Batorowicz, Yani Hamdani, Patty Rigby, Margot McMain-Klein, the youth and families who participated in the study, and the service providers and managers at participating children’s treatment centers who assisted with study recruitment.