Handberg Charlotte, Kristensen Bente, Jensen Bente Thoft, Glerup Sarah, Pharao Antoniett Vebel, Strøm Jeanette, Werlauff Ulla
National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark.
Aarhus University, Denmark.
Glob Qual Nurs Res. 2024 Jun 24;11:23333936241262445. doi: 10.1177/23333936241262445. eCollection 2024 Jan-Dec.
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.
本研究的目的是调查患有神经肌肉疾病的女性在离家时需要排尿时所面临的挑战。本研究采用解释性描述方法和连贯感理论进行定性设计。研究方法是在一家专业康复医院对12名患有神经肌肉疾病的女性（3名能行走的和9名不能行走的）进行三次半结构化焦点小组访谈。我们发现，由于缺乏无障碍设施和身体功能受损，身体和功能障碍阻碍了离家时的排尿机会。心理社会影响与不便、对亲属的依赖、对污名化和尊严受损的恐惧以及持续的社会牺牲有关。社会并不总是能满足患有神经肌肉疾病的女性获得充足和公平卫生设施的挑战，因此这些女性常常不得不压抑排尿的基本需求。
