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Description
This capstone project took place in collaboration with UK Pediatric Therapies and UK NEMO Clinic in Lexington, KY. This project focused on the ACOTE areas of Program Development, Education, and Advocacy, with the goal of determining a need for caregivers and children with Duchenne Muscular Dystrophy (DMD), and to develop a comprehensive educational resource to fill the gap and meet this need. DMD is a progressive neuromuscular disease that impacts motor function in boys. As the disease progresses, motor function becomes increasingly impacted, resulting in decreased functional independence. A needs assessment, literature review, observation of evaluations and doctors appointments, discussions with other members of the interdisciplinary team, and caregiver questionnaires identified caregiver burden, anxiety and fear over their child's health condition, and a risk for child adverse mental health effects and learned helplessness secondary to DMD. Based on these findings, a comprehensive and holistic educational resource for caregivers of children with DMD was developed. The deliverable for this project includes a comprehensive resource, as well as smaller resources, divided up by stage of disease progression and specific domains of occupation. Project effectiveness was evaluated through collaboration and discussion with my project mentor, as well as other members of the DMD interdisciplinary team at UK. Based on recommendations, edits and updates were made to the resource. Throughout this project, I strengthened my leadership through communication with clients, caregivers, and members of the interdisciplinary team. The role of OT was highlighted by providing a comprehensive educational guide through the holistic lens of occupational therapy, focusing on providing client and caregiver resources across all facets of life. This resource advanced OT by reinforcing its role and its unique perspective to client care. Providing comprehensive and inclusive resources for lifelong and/or progressive health conditions should be considered and implemented into future practice.
Graduation Date
2026
Keywords
Duchenne Muscular Dystrophy, Pediatrics, Caregiver, Learned Helplessness, Occupations, Progressive
Disciplines
Occupational Therapy
Degree Type
Book
Site Mentor
Beth George, MSOT, OTR/L
Comments
Link to Presentation: https://youtu.be/26xBb8nBacY