情境因素对多发性硬化症和步态障碍患者使用移动辅助设备的参与感的影响:定性分析

IF 3 3区 医学 Q2 HEALTH CARE SCIENCES & SERVICES Health Expectations Pub Date : 2024-09-28 DOI:10.1111/hex.70033
Elise-Marie Dilger, Nadja Reeck, Dyon Hoekstra, Annett Thiele, Anna Levke Brütt
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引用次数: 0

摘要

简介多发性硬化症和步态障碍患者在参与活动时尤其容易受到限制。本研究旨在调查:(a) 从(打算)使用助行器具的多发性硬化症和步态障碍患者的角度来看,《国际功能、残疾和健康分类》(ICF)框架内哪些环境因素与参与相关;(b) 这些环境因素如何塑造参与的主观方面,包括基于健康和幸福的社会认同方法的联系感、效能感和意义感:我们对从四个在线焦点小组访谈中收集的数据进行了定性分析,每个访谈涉及四到六名(打算)使用助行器具的多发性硬化症和步态障碍患者(共 19 人),并对焦点小组访谈的参与者进行了 12 次个人在线访谈。分析按照库卡茨(Kuckartz)的定性内容分析方法进行:助行器、手动轮椅和电动轮椅/滑板车等助行设备被视为促进参与各种生活情境的工具,并通过提高独立性来增强效能感。在建筑障碍、道路、天气条件、公共交通以及缺乏整体无障碍服务和系统等方面遇到了挑战。虽然工具性支持可以减轻参与的难度,但也与效能感受损有关。人们认为态度很重要,尤其是从他人的角度理解多发性硬化症患者和步态障碍患者的经历,但往往缺乏这种态度,而且还存在歧视态度。在个人因素方面,对助行器具和疾病本身的接受被认为是保持参与生活的促进因素:本研究对现有文献进行了扩展,阐明了国际功能、残疾和健康分类中的环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)之间的相互联系。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宝贵的见解,有助于他们开发包容性环境,提高多发性硬化症和步态障碍患者的整体参与质量:本研究报告了(打算)使用助行器具的多发性硬化症和步态障碍患者的生活经历。研究小组与代表多发性硬化症患者利益的德国下萨克森州多发性硬化症协会的项目成员进行了密切交流,共同设计并开展了焦点小组访谈。焦点小组访谈的结果是设计参与式未来研讨会的基础,在该研讨会上,多发性硬化症患者和参与医疗过程的利益相关者共同制定了改善行动辅助设备供应的建议:试验注册:德国临床试验注册号:试验注册:德国临床试验注册号:DRKS00025532。
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Impact of Contextual Factors on the Perceived Participation of People With Multiple Sclerosis and Gait Impairment Using Mobility Assistive Devices: A Qualitative Analysis

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.

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来源期刊
Health Expectations
Health Expectations 医学-公共卫生、环境卫生与职业卫生
CiteScore
5.20
自引率
9.40%
发文量
251
审稿时长
>12 weeks
期刊介绍: Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.
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