Applying the Pathways and Resources for Engagement and Participation Protocol Among People With Muscles Dystrophies

Sponsor
University of Haifa
Study ID
NCT06540365
Status
Not Yet Recruiting

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Conditions

Eligibility Criteria

Sex
MALE
Age
14 Years - 30 Years
Healthy Volunteers
Not accepted

Interventions

  • Pathways and Resources for Engagement and Participation (PREP) — BEHAVIORAL
    Each participant will work individually with an occupational therapist (OT) to pursue one leisure-oriented, community-based activity chosen by the young person. The participant will choose the community program using the PREP 5 steps (Make goals; Map out a plan; Make it happen; Measure the process and outcomes; Move forward). The OT will then search for the appropriate program, identify and remove potential environmental barriers to participation in that activity (e.g., accessibility, equipment), and educate program instructors regarding the person's specific needs. This process will include an expected 8 sessions lasting 12 to 18 weeks (depending on the assigned baseline length).

Study Details

Taking part in community activities is essential for health and well-being. Yet, it is highly restricted for young people with Duchenne and Becker Muscular Dystrophies (DBMD), especially as they grow into adulthood. The Participation Pathways and Resources for Engagement and Participation (PREP) intervention is designed to help remove barriers in the environment. This study aims to see if the PREP intervention is useful and practical for youth and young adults with DBMD. The main question is: How useful is the PREP intervention for improving participation in community-based activities chosen by the participants? Participants will start the study at different times (4, 5, or 6 weeks) and work one-on-one with an occupational therapist on a leisure activity of their choice. They will have eight sessions over 12 to 18 weeks to work on this activity. They will use the Canadian Occupational Performance Measure (COPM) every week to track their performance and satisfaction with the chosen activity before, during, and after the intervention. The findings of this study can guide clinicians, families, and policymakers to select effective approaches that promote the participation of youth and young adults with DBMD in 'real world' activities they choose. It can also increase motivation and compliance and reduce the burden on the healthcare system, families, and people with DBMD themselves.

Key Dates

Start date
Aug 31, 2024
Status verified
Aug 2024
Primary completion
Feb 28, 2025
Completion
Feb 28, 2025

Study Design

Enrollment
6 participants (estimated)
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
TREATMENT

Arms

  • Experimental: Community-Based activity program

Primary Outcome Measure

Canadian Occupational Performance Measure [ Time Frame: Up to 18 weeks (once a week, during base-line and intervention phase) ]

Central Contacts

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