Purpose: To investigate challenges with sexuality experienced by people with neuromuscular diseases and their needs for knowledge and guidance on sexual life to target future rehabilitation services.
Materials and methods: 11 semi-structured individual interviews with 10 women and one man with neuromuscular diseases. The methodology was Interpretive Description, using the Crip Theory as the theoretical lens to guide the analysis.
Results: The sexual expression of people with neuromuscular diseases was affected by three overall themes. Knowledge and approach in society was characterized by a dichotomous relation of being disabled or nondisabled, causing the nondisabled to consider people with neuromuscular diseases to be asexual even though sexual notions were not affected by the neuromuscular disease. Perceptions and notions represented discovering and unfolding sexuality and how a limited representation of people with disabilities in the public discourse made it difficult to find inspirational role models. Self-confidence and autonomy demonstrated how the personal assistants or partners play significant roles to ensure autonomy of people with neuromuscular diseases.
Conclusion: The challenges related to how sexuality of people with neuromuscular diseses was affected by the lack of knowledge and general approach in society which was either silence or misconceived considerations. The healthcare professionals' reluctance toward addressing sexuality should be considered when planning rehabilitation services.
Keywords: Neuromuscular disease; crip theory; healthcare professionals; interpretive description; qualitative research; rehabilitation; sexuality; stigma.
To enhance the knowledge and strengthen rehabilitation counseling on sexuality for people with neuromuscular disease (NMD) it is important to provide:Knowledge from sexual advisors who can contribute with education of healthcare professionals for them to initiate conversations and counseling regarding sexual topics, and to expand the representation of disability in the sexuality debate.Knowledge and counseling, from health professionals on sexuality when living with a NMD that should be provided from an early stage of the disease and for parents of young people with NMD to decrease stigmatization and reduce taboo.Counseling and guidance from sexual advisors on how to practically perform sex with an impaired function and on attention on hiring personal assistants who can be trusted to support during intimate tasks.Professionally structured peer support for young and adult people with NMD to understand their sexual feelings and bodies through role models and shared experiences to enhance the feeling of belonging and normalcy.Information on possible exercises in physiotherapy for hips, legs, jaws which may promote flexibility and mobility.