Young adults with Duchenne muscular dystrophy (DMD) want to live meaningful, independent adult lives, but they face challenges participating in social activities, according to a recent survey published in the Journal of Neuromuscular Diseases.
The study, which included 43 young men with DMD, found that the most important areas affecting their lives were leisure and hobbies, special aids, social contacts, work and living situation.
Of those who shared their thoughts on living situations, 87% were satisfied with where they lived. For leisure activities, 85% of the participants were happy with their current hobbies. However, only 61% of the 21 participants who answered social questions were satisfied with their social contacts, and just 50% of 24 responding participants were satisfied with the aids and facilities they currently use. When it comes to employment, only 38% of the 18 participants who considered work important felt they could do it.
Key factors influencing their lives included accessibility, outdoor mobility, care facilities, self-confidence, knowledge of professionals and support from parents.
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Thirty parents also took part in the survey. They were less satisfied with their sons’ leisure activities and social lives, with only 17% saying they were happy with these areas. Parents also felt that there were limited opportunities for their sons to access the right support, find jobs or have intimate relationships.
The study also found that caregivers of young adults with DMD experience a higher level of burnout than reported in previous studies. Many of the young adults still relied on their parents for help with mobility, self-care, social activities and work, creating a high caregiver burden. This higher level of caregiver stress may be due to parents focusing on their child’s needs while neglecting their own, especially when there are challenges in accessing the necessary accommodations and aids.
“More focus and collaboration is needed between health care services, social services and occupation environments to empower people with DMD to live their desired adult life,” the authors said.
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