Cerebral Palsy Clinical Trial
Official title:
Examining Capacity Building of Youth With Physical Disabilities to Pursue Participation Following the Pathways and Resources for Engagement and Participation (PREP) Intervention. An Individual-based Mixed Methods Study.
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.
Status | Not yet recruiting |
Enrollment | 10 |
Est. completion date | September 2025 |
Est. primary completion date | September 2025 |
Accepts healthy volunteers | No |
Gender | All |
Age group | 15 Years to 24 Years |
Eligibility | Inclusion Criteria: - have a physical disability (e.g., cerebral palsy, spina bifida, musculoskeletal disorders) - restricted mobility, such as an inability to navigate all surfaces and stairs independently and safely without the use of aids, physical assistance or external support Exclusion Criteria: - have previously received the PREP intervention - severe intellectual disabilities and/or complex communication issues (due to the demands of completing questionnaires/diaries and interviews). |
Country | Name | City | State |
---|---|---|---|
Canada | Lethbridge-Layton-Mackay Rehabilitation Center of CIUSSS West-Central Montreal (Mackay site) | Montreal | Quebec |
Lead Sponsor | Collaborator |
---|---|
McGill University |
Canada,
Type | Measure | Description | Time frame | Safety issue |
---|---|---|---|---|
Other | Individual Semi-Structured Interviews | Three 1-hour semi-structured interviews will be completed with each youth to explore their experiences pursuing participation in a new activity after the initial PREP intervention. Specifically, an interview guide comprised of 12 open-ended questions will be used. | 3x (Week 12-before starting goal#2, Week 20-after 8 weeks independently pursuing goal#2, Week 26-after 6 weeks with therapist support for goal#2/end of study) | |
Other | Electronic PREP Diary | Structured activity log reflecting elements of the PREP Forms (e.g., environmental barriers, supports, and strategies) where youth will document actions they take towards pursuing a new goal over 14 weeks. | Weekly for 14 weeks (goal #2) | |
Primary | Canadian Occupational Performance Measure | A gold-standard 10-point scale that measures activity performance. Score ranges from 1 (unable to perform) to 10 (performs extremely well) | Weekly for 8 weeks Goal #1; Weekly for 14 weeks Goal #2 | |
Secondary | AIR Self-Determination Scale (Student Form) | The AIR-S profile is divided into four sections (6 items in each, rated on a 5-point scale) which make up two subscale scores: ability ('Things I do') and perception ('How I Feel') together provide a capacity score at home ('What Happens at Home') and school ('What Happens at School') provide an opportunity score. An overall percentage (out of 100%) for level of self-determination is determined if all sections are completed and can be used to compare within the individual across time. Scores within the capacity and opportunity subcategories can also be compared descriptively since the self-determination process is broken down into thinking-doing-adjusting. | 3x (Week 1-baseline, Week 12-before starting goal#2, Week 26-end of study) | |
Secondary | Youth, Young-adult Participation and Environment Measure (Y-PEM) - Community Domain | Self-reported participation-based measure capturing important aspects of participation.
Y-PEM Scales: Frequency (never = 0 to daily = 7); Involvement (minimally involved = 1 to very involved = 5); Desire for Change 1. No or yes, if yes, youth identify a) where change is desired (frequency, involvement, and/or variety), and b) be more/less involved; Features of the Environment (1= Usually makes harder, 2= Sometimes helps, sometimes makes harder, 3= Usually helps, 4= Not an issue); Perceived Adequacy / Availability of Resources (1= usually no, 2= sometimes yes, sometimes no, 3= usually yes, 4= not needed) |
2x (Week 1-baseline, Week 26-end of study) |
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