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语境因素对使用移动辅助设备的多发性硬化症和步态障碍患者感知参与度的影响:定性分析。

Impact of Contextual Factors on the Perceived Participation of People With Multiple Sclerosis and Gait Impairment Using Mobility Assistive Devices: A Qualitative Analysis.

机构信息

Junior Research Group for Rehabilitation Sciences, Department of Health Services Research, School of Medicine and Health Sciences, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany.

Research Group for Education and Didactics in Chronic and Progressive Diseases and Physical Disabilities, Department of Special Needs Education and Rehabilitation, School of Educational and Social Sciences, Carl von Ossietzky University of Oldenburg, Oldenburg, Germany.

出版信息

Health Expect. 2024 Oct;27(5):e70033. doi: 10.1111/hex.70033.

Abstract

INTRODUCTION

People with multiple sclerosis and gait impairment are particularly susceptible to facing restrictions in their participation. This study aims to investigate (a) which contextual factors within the framework of the International Classification of Functioning, Disability and Health (ICF) are relevant for participation from the perspective of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices, and (b) how these contextual factors shape the subjective facets of participation, including a sense of connection, efficacy and meaning, based on the social identity approach to health and well-being.

METHODS

We conducted a qualitative analysis on data gathered from four online focus group interviews, each involving four to six people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices (totalling N = 19), and 12 individual online interviews conducted with participants from the focus group interviews. The analysis followed the qualitative content analysis according to Kuckartz.

RESULTS

Mobility assistive devices such as walkers, manual wheelchairs and electric wheelchairs/scooters were seen as facilitators that enabled participation in various life situations and enhanced a sense of efficacy by promoting independence. Challenges were encountered in relation to architectural barriers, pathways, weather conditions, public transportation and the lack of integral accessibility to services and systems. Although instrumental support could ease participation, it was also associated with an impaired sense of efficacy. Attitudes, particularly developing an understanding of the experiences of people with multiple sclerosis and gait impairment from others' perspectives, were considered important but often lacking, and discriminatory attitudes were experienced. On the level of personal factors, acceptance of both the mobility assistive devices and the disease itself were seen as facilitators for maintaining involvement in life situations.

CONCLUSIONS

This study extends the existing literature by shedding light on the interconnectedness of contextual factors within the ICF and various facets of perceived participation, including a sense of connection, efficacy and meaning. These findings provide valuable insights for stakeholders such as urban planners and policymakers in developing inclusive environments that enhance the overall quality of participation for people with multiple sclerosis and gait impairment.

PATIENT OR PUBLIC CONTRIBUTION

This study reports on the lived experiences of people with multiple sclerosis and gait impairment who (intend to) use mobility assistive devices. The research team stood in close exchange with project members of the German Multiple Sclerosis Society Lower Saxony, a group representing the interests of people with multiple sclerosis, to design and conduct the focus group interviews. The results from the focus group interviews were the basis for the design of a participatory future workshop in which people with multiple sclerosis and stakeholders involved in the healthcare process collaboratively developed recommendations for improving the provision of mobility assistive devices.

TRIAL REGISTRATION

German Clinical Trials Register number: DRKS00025532.

摘要

简介

多发性硬化症和步态障碍患者特别容易面临参与受限的问题。本研究旨在调查(a)在国际功能、残疾和健康分类(ICF)框架内,哪些与多发性硬化症和步态障碍患者(打算)使用移动辅助设备的参与相关的情境因素,以及(b)这些情境因素如何根据健康和幸福感的社会认同方法塑造参与的主观方面,包括联系感、效能感和意义感。

方法

我们对来自四个在线焦点小组访谈的数据进行了定性分析,每个访谈涉及四到六名(打算)使用移动辅助设备的多发性硬化症和步态障碍患者(共 19 名),并对焦点小组访谈中的 12 名参与者进行了 12 次单独的在线访谈。分析遵循了 Kuckartz 的定性内容分析方法。

结果

助行器、手动轮椅和电动轮椅/滑板车等移动辅助设备被视为促进因素,使患者能够参与各种生活情境,并通过促进独立性增强效能感。患者在遇到建筑障碍、路径、天气条件、公共交通以及缺乏对服务和系统的整体无障碍性等方面存在挑战。尽管工具性支持可以促进参与,但它也与效能感受损有关。态度,特别是从他人的角度理解多发性硬化症和步态障碍患者的体验,被认为是重要的,但往往缺乏这种态度,而且还会经历歧视性态度。在个人因素方面,接受移动辅助设备和疾病本身被视为维持对生活情境参与的促进因素。

结论

本研究通过揭示 ICF 内的情境因素与感知参与的各个方面(包括联系感、效能感和意义感)之间的相互关系,扩展了现有文献。这些发现为城市规划者和政策制定者等利益相关者提供了有价值的见解,有助于他们营造包容性环境,提高多发性硬化症和步态障碍患者的整体参与质量。

患者或公众贡献

本研究报告了多发性硬化症和步态障碍患者(打算)使用移动辅助设备的生活体验。研究团队与德国下萨克森州多发性硬化症协会的项目成员密切合作,设计并进行了焦点小组访谈,该协会代表了多发性硬化症患者的利益。焦点小组访谈的结果为参与式未来研讨会的设计提供了基础,在研讨会上,多发性硬化症患者和参与医疗保健过程的利益相关者共同制定了改善移动辅助设备供应的建议。

试验注册

德国临床试验注册编号:DRKS00025532。

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