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Challenges Faced by Women With Neuromuscular Diseases When Having to Urinate Away From Home
Charlotte Handberg1,2, Bente Kristensen1, Bente Thoft Jensen2,3
1National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark.
The aim of this study was to investigate the challenges women with neuromuscular disease face when having to urinate when away from home. The design for this study was qualitative using the interpretive description methodology and the Sense of Coherence theory. The method was three semi-structured focus group interviews with 12 women (3 ambulant and 9 non-ambulant) with neuromuscular diseases at a specialized rehabilitation hospital. We found that physical and functional barriers hampered the opportunity to urinate when away from home due to lack of accessibility and impaired physical functioning. Psychosocial impacts were related to inconvenience and dependency on relatives, fear of stigmatization and impacted dignity, and the constant social sacrifices. The challenge of access to adequate and equitable sanitation for women with neuromuscular diseases is not at always met in society, and these women consequently often must resort to repressing the fundamental need to urinate.
The aim of this study was to investigate the challenges women with neuromuscular disease face when having to urinate when away from home. The design for this study was qualitative using the interpretive description methodology and the Sense of Coherence theory. The method was three semi-structured focus group interviews with 12 women (3 ambulant and 9 non-ambulant) with neuromuscular diseases at a specialized rehabilitation hospital. We found that physical and functional barriers hampered the opportunity to urinate when away from home due to lack of accessibility and impaired physical functioning. Psychosocial impacts were related to inconvenience and dependency on relatives, fear of stigmatization and impacted dignity, and the constant social sacrifices. The challenge of access to adequate and equitable sanitation for women with neuromuscular diseases is not at always met in society, and these women consequently often must resort to repressing the fundamental need to urinate.
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