Gerritzen Esther Vera, Lee Abigail Rebecca, McDermott Orii, Coulson Neil, Orrell Martin
Institute of Mental Health, Mental Health and Clinical Neuroscience, School of Medicine, University of Nottingham, Nottingham, United Kingdom.
Population and Lifespan Health, School of Medicine, University of Nottingham, Nottingham, United Kingdom.
JMIR Aging. 2022 Jul 27;5(3):e35425. doi: 10.2196/35425.
Parkinson disease (PD) significantly impacts the lives of people with the diagnosis and their families. In addition to the physical symptoms, living with PD also has an emotional impact. This can result in withdrawal from social roles, increasing the risk for social isolation and loneliness. Peer support is a way to stay socially connected, share experiences, and learn new coping skills. Peer support can be provided both in person and on the internet. Some of the advantages of online peer support are that it overcomes geographical barriers and provides a form of anonymity; moreover, support can be readily available when needed. However, the psychosocial impact of PD is still underresearched, and there is no systematic synthesis of online peer support for people with PD.
This review aims to explore the benefits and challenges of online peer support and identify successful elements of online peer support for people with PD.
The method selected for this systematic review is narrative synthesis. A total of 6 databases were systematically searched in April 2020 for articles published between 1989 and 2020. The quality of the included studies was assessed using the Critical Appraisal Skills Programme qualitative research checklist and the Downs and Black quality checklist.
A total of 10,987 unique articles were identified through a systematic database search. Of these 10,987 articles, 8 (0.07%) were included in this review. Of the 8 studies, 5 (63%) were of good or high quality, 2 (25%) were of medium or fair quality, and 1 (13%) study was of poor quality. Web-based platforms included discussion forums, a web-based virtual world, and Facebook groups. Most papers reported on text-based communication. The included studies reported on sharing social support and personal experiences. Successful elements included increasing similarity between members and offering the opportunity to directly ask questions to a physician. Challenges included members leaving without a warning and PD symptoms hindering the use of technology.
Peer support can improve social support and help people with PD in living meaningful and satisfying lives. Peer support is unique and cannot be replaced by family members, friends, or health care professionals. Online peer support can be a solution for those who do not have access to an in-person support group or whose PD symptoms restrict them from travelling. However, research on the personal experiences of those who engage in online peer support and potential barriers in accessing it remains limited. Future research could use qualitative methods to explore these fields further.
帕金森病（PD）对确诊患者及其家人的生活产生重大影响。除了身体症状外，患有帕金森病还会产生情感影响。这可能导致患者退出社会角色，增加社会隔离和孤独的风险。同伴支持是保持社交联系、分享经历和学习新应对技巧的一种方式。同伴支持既可以面对面提供，也可以通过互联网提供。在线同伴支持的一些优点是它克服了地理障碍并提供了一种匿名形式；此外，在需要时可以随时获得支持。然而，帕金森病的心理社会影响仍未得到充分研究，并且对于帕金森病患者的在线同伴支持也没有系统的综述。
本综述旨在探讨在线同伴支持的益处和挑战，并确定帕金森病患者在线同伴支持的成功要素。
本系统综述选择的方法是叙述性综合。2020年4月对6个数据库进行了系统检索，以查找1989年至2020年发表的文章。使用批判性评估技能计划定性研究清单和唐斯与布莱克质量清单评估纳入研究的质量。
通过系统的数据库检索共识别出10987篇独特的文章。在这10987篇文章中，有8篇（0.07%）被纳入本综述。在这8项研究中，5项（63%）质量良好或较高，2项（25%）质量中等或一般，1项（13%）研究质量较差。基于网络的平台包括讨论论坛、基于网络的虚拟世界和脸书群组。大多数论文报道了基于文本的交流。纳入的研究报道了分享社会支持和个人经历。成功要素包括增加成员之间的相似性以及提供直接向医生提问的机会。挑战包括成员无预警离开以及帕金森病症状妨碍技术使用。
同伴支持可以改善社会支持，并帮助帕金森病患者过上有意义和令人满意的生活。同伴支持是独特的，不能被家庭成员、朋友或医疗保健专业人员所取代。在线同伴支持对于那些无法参加面对面支持小组或其帕金森病症状限制其出行的人来说可能是一种解决方案。然而，关于参与在线同伴支持的人的个人经历以及获取在线同伴支持的潜在障碍的研究仍然有限。未来的研究可以使用定性方法进一步探索这些领域。
