Seating and Mobility Concerns of Adults with Duchenne Muscular Dystrophy

Background : Appropriate wheelchair and seating systems are key to allow for the participation of people with Duchenne Muscular Dystrophy. There is little research that focuses on their long-term seating issues and what topics they want studied. Methods : This mixed-method study with adults with Duchenne used an Internet-based survey about wheelchair mobility and discomfort, followed by in-depth interviews. Unanticipated remarks in the interviews led to a second survey regarding the effects of cold weather on wheelchair driving. Descriptive and qualitative analyses were performed. Results : Thirty-seven individuals completed the original survey: 78% used a powered wheelchair, 58% were uncomfortable in their wheelchair, and 94% felt the need to change their seating position. In-depth interviews ( N = 9) revealed three themes: seating and pain management, caregiver cooperation, and temperature sensitivity. Almost all (8/9) interviewees explained that cold was a barrier to their participation. In the second survey ( N = 13), 11 reported that cold affected their driving, with 10 remarking that it prevented them from participating in daily life activities and 11 stating that the effects of cold on wheelchair driving should be studied. Conclusions : It is essential to ask end-users to identify key issues to ensure the relevance of research to people with disabilities.