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多发性硬化症患者的康复体验——一项定性访谈研究。

Experiences of persons with multiple sclerosis with rehabilitation-a qualitative interview study.

机构信息

Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.

Institute of Medical Sociology, University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.

出版信息

BMC Health Serv Res. 2022 Jun 11;22(1):770. doi: 10.1186/s12913-022-08150-8.

Abstract

BACKGROUND

Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients' experiences and perspectives on inpatient rehabilitation in MS.

METHODS

We conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing-remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically.

RESULTS

As a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians' attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management.

CONCLUSION

Patients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant.

摘要

背景

多发性硬化症(MS)的管理包括不同的治疗方法。康复是 MS 改善功能、活动和参与的关键策略。作为一项关于患者对不同治疗方法整体体验的更大研究的一部分,本研究旨在概述不同患者对 MS 住院康复的体验和观点。

方法

我们在德国对 50 名多发性硬化症患者进行了以问题为中心的访谈,其中大多数为复发缓解型多发性硬化症患者。在招募过程中,我们使用了最大变异抽样法。数据采用主题分析法进行分析。

结果

分析结果确定了三个主要主题:1)决定康复的相关因素;2)康复环境体验;3)康复治疗的益处。治疗医生的态度对是否选择康复治疗有重大影响。在康复前设定目标被视为重中之重。与其他多发性硬化症患者交流经验是康复的主要益处之一,而对某些人来说,与日常生活的分离导致了一种更为模糊的态度,从对逃避日常琐事的欣赏到对行为改变的实质性管理。

结论

患者报告了在康复决策过程中的各种体验。医生的建议、目标设定和选择最合适的康复诊所被认为是最相关的。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/a94d/9188711/561e2113277c/12913_2022_8150_Fig1_HTML.jpg

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