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探索平衡家庭锻炼在多发性硬化症日常管理中的整合及患者参与度:一项全面的定性分析

Exploring the integration and patient engagement of balance home exercises in the daily management of multiple sclerosis: a comprehensive qualitative analysis.

作者信息

Opsommer Emmanuelle, Ribeiro Carla, Carrard Sophie, Hilfiker Roger, Mbarga Josiane

机构信息

School of Health Sciences (HESAV), University of Applied Sciences and Arts Western Switzerland (HES-SO), Lausanne, Switzerland.

School of Health Sciences, HES-SO Valais-Wallis, Leukerbad, Switzerland.

出版信息

Disabil Rehabil. 2025 Jul;47(15):3938-3946. doi: 10.1080/09638288.2024.2435519. Epub 2024 Dec 4.

DOI:10.1080/09638288.2024.2435519
PMID:39629829
Abstract

PURPOSE

This study investigated the perceptions and experiences of patients with multiple sclerosis (MS) regarding a home-based balance exercises program, focusing on its practicality and perceived effects for daily management and the factors influencing its implementation.

MATERIALS AND METHODS

Employing a qualitative approach, semi-structured interviews were conducted with 18 patients with MS in Switzerland (13 women, 5 men; mean age 53 ± 11 years). The study used purposive sampling to ensure diverse representations. The exercise program included 19 tailored exercises, adapted by physiotherapists for each participant. Data analysis involved inductive thematic analysis to understand the practical implementation, challenges, and perceived benefits.

RESULTS

Key themes emerged, such as adaptability of exercises, implementation variability, approaches to integration, facilitators, obstacles, and perceived effects. Adaptability to fluctuating symptoms, individual lifestyle impacts, and variability in exercise practices were notable. Facilitators included personalized support from physiotherapists, while obstacles ranged from fatigue to complex exercise variants. Perceived effects varied, with some patients reporting physical and psychological benefits.

CONCLUSIONS

The study highlights diverse patient experiences with the balance exercises program. Key challenges included physical exertion and adapting to MS symptoms. Physiotherapists played a pivotal role in personalization and guidance. Despite challenges, patients demonstrated adaptability and proactive integration of exercises into their MS management.

摘要

目的

本研究调查了多发性硬化症(MS)患者对家庭平衡锻炼计划的认知和体验,重点关注其在日常管理中的实用性和感知效果以及影响其实施的因素。

材料与方法

采用定性研究方法,对瑞士的18例MS患者(13名女性,5名男性;平均年龄53±11岁)进行了半结构式访谈。本研究采用目的抽样以确保具有多样化的代表性。锻炼计划包括19项量身定制的练习,由物理治疗师为每位参与者进行调整。数据分析采用归纳主题分析法,以了解实际实施情况、挑战和感知到的益处。

结果

出现了一些关键主题,如练习的适应性、实施的变异性、整合方法、促进因素、障碍和感知效果。对症状波动的适应性、对个人生活方式的影响以及锻炼方式的变异性值得关注。促进因素包括物理治疗师的个性化支持,而障碍则从疲劳到复杂的练习变体不等。感知效果各不相同,一些患者报告了身体和心理方面的益处。

结论

该研究突出了患者在平衡锻炼计划中的多样化体验。关键挑战包括体力消耗和适应MS症状。物理治疗师在个性化和指导方面发挥了关键作用。尽管存在挑战,但患者表现出了适应性,并积极将锻炼融入其MS管理中。

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