What Is Shared in an Online Peer-Support Group Run by Stroke Survivors? An Exploratory Study With a Participatory Approach

IF 3.2 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2025-09-25 DOI:10.1111/hex.70440

Malin Tistad, Lill Hultman, Jeanette Nelson, Fredrik Sandman, Mikael Åkerlund, Ulla-Karin Schön, Lena von Koch

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引用次数: 0

Abstract

Background

Many stroke survivors face disabilities that can have a substantial lifelong impact on both their own and their significant others' life situations. Online groups on social media can serve as forums for peer support among people sharing a common experience. However, there is limited knowledge about online peer-support groups for people living with the consequences of stroke that are initiated and managed by stroke survivors themselves.

Objective

The aim of this study was to explore and describe what stroke survivors and their significant others share in posts and comments in a Facebook group for stroke survivors, initiated and run by stroke survivors.

Methods

In this participatory, exploratory and qualitative study, three stroke survivors, engaged as co-researchers with no previous research experience, identified Facebook as an important context for sharing experiences and peer support. Data were collected by summarizing posts and comments from a Facebook group over 3 months and analyzed using the principles of inductive qualitative content analysis.

Results

In total, 5 categories and 11 subcategories were created. The categories Narrating About Everyday Life with the Consequences of Stroke, Dealing with the Emotional Struggle of Poststroke Life, Making Progress and Enjoying Everyday Life, Navigating Societal Services and Societal Demands and Continuing Everyday Life describe narratives, questions and requests for other members' experiences related to challenges and situations that the group's members faced post-stroke.

Conclusion

We conclude that there is considerable breadth in the topics and issues discussed in the online forum, reflecting that a stroke affects many areas of life for both stroke survivors and their significant others. Furthermore, online peer-to-peer support for stroke survivors have the potential to provide a context for sharing experiences and knowledge, and for developing experiential knowledge. Clinical implications are that rehabilitation professionals can inform stroke survivors about the existence of online peer-to-peer groups, include the ability to use social media in assessments of activity performance, and, if relevant, support stroke survivors' use of social media.

Patient or Public Contribution

Stroke survivors identified Facebook as a context for the study. They collaborated in data collection, analysis, interpretation and discussion of findings and are co-authors.

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中风幸存者的在线同伴支持小组分享了什么？参与式方法的探索性研究。

背景：许多中风幸存者面临的残疾可能对他们自己和他们重要的其他人的生活状况产生重大的终身影响。社交媒体上的在线小组可以作为分享共同经历的人们之间的同伴支持论坛。然而，对于由中风幸存者自己发起和管理的中风后遗症患者的在线同伴支持小组的了解有限。目的：本研究的目的是探索和描述中风幸存者和他们的重要他人在中风幸存者的Facebook小组中分享的帖子和评论，该小组由中风幸存者发起和运营。方法：在这项参与性、探索性和定性研究中，三名中风幸存者作为共同研究人员，没有任何研究经验，将Facebook视为分享经验和同伴支持的重要环境。数据是通过汇总一个Facebook群组3个月以上的帖子和评论来收集的，并使用归纳定性内容分析的原则进行分析。结果：共建立5大类11亚类。“中风后日常生活的叙述”、“处理中风后生活的情感斗争”、“进步和享受日常生活”、“驾驭社会服务和社会需求”和“继续日常生活”这几个类别描述了小组成员在中风后面临的挑战和情况下对其他成员经历的叙述、问题和要求。结论：我们得出的结论是，在线论坛中讨论的主题和问题相当广泛，反映了中风影响中风幸存者及其重要他人生活的许多领域。此外，对中风幸存者的在线点对点支持有可能为分享经验和知识以及发展经验知识提供环境。临床意义在于，康复专业人员可以告知中风幸存者在线点对点群体的存在，包括在评估活动表现时使用社交媒体的能力，并且，如果相关的话，支持中风幸存者使用社交媒体。患者或公众贡献：中风幸存者将Facebook作为研究的背景。他们在数据收集、分析、解释和研究结果讨论方面进行了合作，并且是共同作者。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

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.