Equipment for Duchenne Muscular Dystrophy
In this film you will hear four young men living with Duchenne muscular dystrophy (DMD) and fourteen parents of sons with DMD describing their experiences with accessing, using, and paying for equipment. Some of these young men and parents come from the same families, totaling to ten families represented. The film is designed to be useful for people and families living with DMD, clinicians, and policy makers.
We aimed to hear a wide range of perspectives, with the original aim being to interview an equal number of young men living with DMD and parents of children with DMD. However, we were able to engage with more parents of children with DMD. Despite attempts at maximum variation sampling, most participants identified as white and female. Interviews for this film were also conducted in one Midwestern state in 2025-2026. Other states and counties may have different insurance policies affecting peoples’ experiences. For example, in some states, individual counties play a role in shaping Medicaid policy.
This project was made possible by funding from the Department of Neurology in the School of Medicine and Public Health at the University of Wisconsin-Madison.
Please click here to download a summary of actionable takeaways and resources. Please contact the UW-Madison Qualitative and Health Experiences Research lab (qherlab@fammed.wisc.edu) to learn more about this project or share your experiences watching this film.