Background: Sexual education and sexual health care are essential aspects of well-being, yet individuals with muscular dystrophies (MD) often encounter barriers in these areas. This study aimed to explore the sexual education and health care experiences of adults with MD across three domains: clinical settings, educational institutions, and the home environment.
Methods: We conducted qualitative interviews with 30 adults diagnosed with various forms of muscular dystrophy. The interviews focused on their experiences and perceptions related to sexual education and health care. Data were analyzed to identify common themes and challenges within each domain.
Results: Participants reported limited access to sexual education tailored to their needs, with significant gaps in all three domains. In clinical settings, many participants described a lack of proactive sexual health care discussions from providers. In educational settings, sexual education was often inadequate or non-existent, failing to address the unique needs of individuals with MD. Within the home, conversations about sexual health were frequently avoided, leaving individuals to seek information independently. Despite these challenges, some participants expressed awareness of and attempted to employ more adaptive strategies (e.g., self-education and seeking social and medical support), though these efforts were often hindered by discomfort or lack of support.
Conclusions: Adults with muscular dystrophy face significant challenges in accessing appropriate sexual education and health care. The findings highlight the need for more inclusive and proactive approaches within clinical, educational, and home environments to support the sexual health of this population. Addressing these gaps may improve overall quality of life and well-being for individuals with muscular dystrophies.