Examining Capacity Building of Youth With Physical Disabilities to Pursue Participation Following the PREP Intervention.

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Participation of youth with disabilities is severely restricted by environmental barriers, leading to poorer transition outcomes as compared to their peers without disabilities. In pediatric rehabilitation, capacity building - a process encompassing change in knowledge and skills focusing on future growth and development of the client's potential - is necessary for creating sustainable change toward participation outcomes. Building capacity of youth to develop and use solution-based strategies in new contexts is critical for making a successful transition to adulthood. The PREP (Pathways and Resources to Engagement and Participation) is one example of a participation-based intervention that aims to build capacity of youth to solve problems through removing environmental barriers and building support for participation in a 'real-world' context. PREP, which includes 5 standardized steps, i.e., Make goals; Map out a plan; Make it happen; Measure the process and outcomes; and Move forward, has been shown to significantly improve participation in self-chosen activities of youth with physical disabilities ages 12-25. However, outcomes related to building capacity of youth to problem-solve and pursue sustainable participation beyond the support of a therapist have not been evaluated. This study addresses the gap in knowledge by exploring 'real-life' experiences and participation outcomes of youth with physical disabilities after a participation-based capacity-building intervention. This study aims to understand in what ways the PREP intervention builds capacity of youth with physical disabilities to pursue participation in new self-chosen activities. The main questions it aims to answer are: 1) What are the experiences of youth with physical disabilities as they pursue a new self-chosen activity (goal #2) for 14 weeks (8-weeks independently, and 6-weeks with OT support), starting 4 weeks after completion of the initial PREP intervention (goal #1)?; 2) To what extent does youth's participation in a new self-chosen activity (goal #2) change over 14 weeks of pursuing the new activity (8-weeks independently, and 6-weeks with OT support) in terms of trend and level, starting 4 weeks following completion of the initial PREP intervention for goal#1? and 3) How do youth's experiences pursuing participation in a self-chosen activity following the intervention relate to data measuring levels of participation in the new activity over time, while also considering youth's levels of self-determination and overall community participation profiles? A 26-week individual-based convergent mixed methods design will explore the capacity building process and outcomes following the completion of the PREP intervention. Ten youth with physical disabilities (ages 15-24), will complete the PREP for one goal with the therapist for 8 weeks. Four weeks after completion, youth will work independently toward a new goal for 8 weeks, after which they will be supported by a therapist for an additional 6 weeks if needed to achieve their new goal. Youth will be interviewed at three time points to explore their experiences working towards their new goal (QUAL). Youth will document the process (i.e., strategies, challenges) of pursuing their new goal through a weekly PREP diary over 14 weeks (QUAL). Changes in participation levels for goals are measured weekly using the COPM over 8 weeks (goal#1) and 14 weeks (8 weeks without the therapist and 6 weeks with therapist support for goal#2) (QUAN). The resulting 20 trajectories of change (10 for goal#1 and 10 for goal #2) are analyzed visually for trend and level. To complement COPM data collected for the new goal, the weekly PREP diary, completed over the 14 weeks, will undergo inductive content analysis and will be used to describe youth's participation over time providing context about the trends and levels observed for each youth's pursuit of their new activity (QUAL). The 30 transcripts (10 youth x 3 interviews) are analyzed using inductive reflexive thematic analysis. Data collected from all sources (COPM, diary, interviews) is triangulated to account for the process of capacity building and its outcomes. A joint display organized by participant will be used for a side-by-side comparison of quantitative and qualitative results. An iterative process will be used to compare results within and across participants to look for potential inconsistencies or complementary findings between the sets of data. Meta-inferences are generated by comparing QUAN (COPM score/trajectories) and QUAL data (interviews and diary entries). The meta-inferences generated through the joint display and additional insights will be discussed using a narrative approach. Data will also be collected to describe the sample of youth in terms of their current community participation profiles (using the Youth, Young-adult Participation and Environment Measure; Y-PEM) and self-reported levels of self-determination (using the American Institutes for Research - Student Self-Determination Scale; AIR-S). Detailed information about the participants can inform how the intervention is applicable to different individuals, thus supporting the uptake of research into practice. The research team includes 4 international and interdisciplinary experts from the fields of occupational therapy, social work, and psychology, all with extensive knowledge in participation-based interventions as well as experience conducting complex clinical trials. This project also involves intersectoral partnerships with managers/local decision-makers from both the clinical and non-clinical communities who all have a special interest (and knowledge) in transitioning of youth with physical disabilities to adult roles and adult care. With diverse backgrounds including rehabilitation services, social and recreation organizations (from both public and non-profit sectors), and individuals with lived experience of disability, these partners form a rich consultative committee to advise the project. This study will contribute evidence towards the long-term impacts following a participation-based capacity building intervention for youth with physical disabilities. Additionally, this study will contribute to our understanding of the elusive yet important construct of capacity-building. Such new knowledge may advance methods for evaluating efficiency of participation-focused interventions and may be of interest to both clinicians and decision-makers.