People with neuromuscular diseases and their relatives' perspectives on challenges in everyday life and healthcare.

IF 2.3 Q3 CLINICAL NEUROLOGY Neurodegenerative disease management Pub Date : 2023-10-01 Epub Date: 2023-12-11 DOI:10.2217/nmt-2023-0008
Charlotte Handberg, Ulla Werlauff
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Abstract

Objective: People with a neuromuscular disease (NMD) often experience challenges in everyday life and healthcare. Aim: To investigate experiences of and perspectives on challenges in everyday life and healthcare of people with NMDs and their relatives to gain new insights into how life-long rehabilitation can be tailored. Patients & methods: The design was qualitative using the interpretive description methodology and the Sense of Coherence theory. An ethnographic fieldwork was conducted where 45 persons with NMD and their relatives were included for interviews and participant observations. Results & conclusion: People with NMDs continually adapt to a changing functioning and balance their need for knowledge with their dependency on help when navigating the healthcare system. Structured, professionally facilitated peer support is needed.

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神经肌肉疾病患者及其亲属对日常生活和医疗挑战的看法。
目的:神经肌肉疾病(NMD)患者经常在日常生活和医疗保健方面遇到困难。目的:调查神经肌肉疾病患者及其亲属在日常生活和医疗保健中遇到的挑战的经历和观点,以便对如何定制终身康复有新的认识。患者与方法:采用解释性描述方法和 "连贯感 "理论进行定性设计。对 45 名 NMD 患者及其亲属进行了人种学实地调查,并对他们进行了访谈和参与观察。结果与结论:NMD 患者不断适应不断变化的功能,并在驾驭医疗保健系统时平衡他们对知识的需求和对帮助的依赖。需要有组织的、专业的同伴支持。
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CiteScore
4.30
自引率
0.00%
发文量
35
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