Andersen Karoline Yde, Ravn Sophie Lykkegaard, Krogh Marlene, Handberg Charlotte
Department of Public Health, Aarhus University, Aarhus, Denmark.
Specialized Hospital for Polio and Accident Victims, Roedovre, Denmark.
Disabil Rehabil. 2025 Mar;47(5):1146-1155. doi: 10.1080/09638288.2024.2364828. Epub 2024 Jun 11.
To investigate how people with neuromuscular disease or spinal cord injury experience living with a personal assistance service.
Qualitative study using the Interpretive Description methodology with Aaron Antonovsky's theory of sense of coherence as a theoretical framework. The method was semi-structured individual interviews ( and focus group interviews (. In all, 19 adults with neuromuscular disease () or spinal cord injury () participated. The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines.
Three themes were identified to understand living with personal assistance and how this affected everyday life: 1) 2) and 3) . Our findings provide an understanding of living with assistance and how it, among other things, is influenced by the legislation and the local authorities' administration of the service. Participants explained this by an experience of a sense of coherence.
For people with NMD and SCI, there are complex nuances associated with living with a personal assistance service. The findings illustrate that despite personal challenges of managing assistance services, it can meaningfully contribute to one's life by enhancing one's sense of coherence.
调查神经肌肉疾病或脊髓损伤患者在接受个人协助服务时的生活体验。
采用诠释性描述方法进行定性研究，以亚伦·安东诺夫斯基的连贯感理论作为理论框架。研究方法为半结构化个人访谈（以及焦点小组访谈（。共有19名患有神经肌肉疾病（）或脊髓损伤（）的成年人参与。本研究遵循定性研究报告统一标准（COREQ）指南。
确定了三个主题，以理解接受个人协助的生活以及这对日常生活的影响：1） 2） 以及3） 。我们的研究结果有助于理解接受协助的生活，以及它如何受到立法和地方当局服务管理等因素的影响。参与者通过连贯感的体验对此进行了解释。
对于患有神经肌肉疾病和脊髓损伤的人来说，接受个人协助服务存在复杂的细微差别。研究结果表明，尽管管理协助服务存在个人挑战，但它可以通过增强连贯感对个人生活做出有意义的贡献。
