PREP Intervention for Youth with Physical Disabilities

Recruiting in Palo Alto (17 mi)

Overseen byDana Anaby, PhD

Age: < 65

Sex: Any

Travel: May Be Covered

Time Reimbursement: Varies

Trial Phase: Academic

Waitlist Available

Sponsor: McGill University

No Placebo Group

Trial Summary

What is the purpose of this trial?

The goal of this clinical trial is to learn about how a participation-based intervention builds capacity of youth with physical disabilities to pursue activities of their choice in the community. The investigators plan to examine in what ways working with a therapist to set up and engage in an 8-week self-chosen community-based activity builds capacity of youth with physical disabilities to pursue a new activity of their choice in the community without the support of a therapist. During this study, participants will be followed for 26 weeks. Youth will work with an occupational therapist (OT). * In the first week, the OT will meet with youth to set a community-based leisure goal. Examples of activities could include music, sports, cooking lessons, painting, or photography, in the youth's community. * The OT will work with youth to identify and remove barriers. They will also adapt the activity to help youth do the activity for 8 weeks. During this time, the OT will perform site visits to consult and support youths' involvement as needed. (Weeks #1-8) * Youth will have a four-week break after completing their first activity. (Weeks #9-12). Then, youth will be asked to choose a second (new) activity. They will try to start this activity for 8 weeks without the OT. (Weeks #13-20) * At the end of these 8 weeks, the same therapist will help the youth for 6 weeks if needed to do their second activity. (Weeks #21-26) Youth will be asked to complete the following online: 1. A standard demographic questionnaire (during the first meeting). 2. Rate their perceived performance in the chosen activity once a week. 3. A questionnaire about their daily participation in the community. This will be done at the start and end of the study. 4. A questionnaire about how well they feel they are able to do things. This will be done three times. 5. Share steps they take to participate in the activity. This will be done through a weekly diary entry. In addition, three one-on-one interviews (for about an hour each) will be done remotely (using Microsoft TEAMS) to share their experience pursuing their selected activities. Interviews will be done before starting their second (new) activity, after 8 weeks of pursuing the new activity on their own, and after 6 weeks with OT support. These interviews will be video, and audio recorded and transcribed. This study examines 'real-life' experiences and participation outcomes of youth with physical disabilities after a participation-based capacity-building intervention.

Research Team

Dana Anaby, PhD

Principal Investigator

McGill University

Eligibility Criteria

This trial is for young people with physical disabilities like cerebral palsy, spina bifida, or musculoskeletal disorders. They should be able to move around but may need some help with surfaces and stairs. It's not for those who've had the PREP program before or have severe intellectual or communication challenges.

Inclusion Criteria

I need help or tools to walk or climb stairs.

I have a physical disability like cerebral palsy or spina bifida.

Exclusion Criteria

I have previously undergone the PREP intervention.

I have severe intellectual disabilities or communication issues.

Treatment Details

Interventions

Pathways and Resources to Engagement and Participation (PREP) (Behavioural Intervention)

Trial OverviewThe study tests the 'PREP' intervention where youth work with therapists to pick and do a community activity they choose, like sports or arts, first with support then on their own. The goal is to see if this helps them start new activities independently.

Participant Groups

1Treatment groups

Experimental Treatment

Group I: Community-based activity programExperimental Treatment1 Intervention

Engagement in 8-week community-based activity program.