ArticleJournal of neuromuscular diseases2026
Moving beyond puberty: Listening to lived experience to expand sexual and reproductive healthcare for adults with muscular dystrophy.
Article in Journal of neuromuscular diseases, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
1 citing paper in PubMed.
- Navigating sexual health, fertility, and adult wellness in individuals with Duchenne muscular dystrophy: Current standards of care and future directions.Journal of neuromuscular diseases · 2026Review
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Authors and funding
8 authors.
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Abstract
Youth and adults with muscular dystrophy (MD) face sexual and reproductive healthcare barriers shaped by the physical, social, and emotional impacts of a progressive neuromuscular condition. Despite sexual health being central to well-being, it remains understudied, as the needs of disabled individuals are often overlooked due to misconceptions and false narratives of disinterest. To address this gap, we conducted semi-structured interviews with thirty adults with various MD types, exploring their sexual and reproductive healthcare experiences. Using a hybrid inductive-deductive thematic analysis, we identified six themes related to barriers in care: patient discomfort discussing sexual health and insecurity about disability or inexperience; provider discomfort and overemphasis on medical puberty; lack of private, confidential time with providers; unaddressed fertility and reproductive concerns; provider invalidation or assumptions about sexual or romantic interest; and reliance on self-education from pornography or online sources. We also identified six themes for actionable improvements: patients desired increased provider-initiated conversations; practical sexual health information including hygiene and self-care; dating and relationship guidance; mental health support and resources to counter negative media messages; education on safe options for sexual fulfillment; and community and peer connection resources. Overall, participants expressed a strong desire for proactive, confidential, and affirming care addressing the full spectrum of sexual health needs while integrating mental health and peer support. Findings highlight the urgent need for inclusive, accessible, and holistic sexual and reproductive healthcare tailored to the lived experiences of people with MD.
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