"It doesn't get more normal than that!" - challenges with sexuality experienced by people with neuromuscular diseases and their needs for rehabilitation knowledge and guidance on sexual life.

Abstract

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. 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. The sexual expression of people with neuromuscular diseases was affected by three overall themes. <i>Knowledge and approach in society</i> 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. <i>Perceptions and notions</i> 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. <i>Self-confidence and autonomy</i> demonstrated how the personal assistants or partners play significant roles to ensure autonomy of people with neuromuscular diseases. 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.