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.
Front Digit Health. 2024 Jan 31;6:1138530. doi: 10.3389/fdgth.2024.1138530. eCollection 2024.
Amyotrophic Lateral Sclerosis (ALS) significantly impacts the lives of people with the diagnosis and their families. A supportive social environment is important for people with ALS to adopt effective coping strategies and health behaviours, and reduce depressive symptoms. Peer support can provide a supportive social environment and can happen in-person and online. Advantages of online peer support are that people can engage from their own home, at their own time and pace, and that it offers a variety of different platforms and modes of communication.
To (1) explore the benefits and challenges of online peer support for people with ALS, and (2) identify successful elements of online peer support for people with ALS.
The method selected for this systematic review was a narrative synthesis. Six databases were systematically searched in April 2020 for articles published between 1989 and 2020. The search was updated in June 2022. The quality of the included studies was assessed with the Critical Appraisal Skills Programme qualitative research checklist.
10,987 unique articles were identified through the systematic database search. Of those, 9 were included in this review. One of the main benefits of online peer support was that people could communicate using text rather than needing verbal communication, which can be challenging for some with ALS. Successful elements included using profile pages and graphics to identify others with similar or relevant experiences. Challenges included ALS symptoms which could make it difficult to use technological devices.
Peer support can provide a non-judgmental and supportive environment for people with ALS, in which they can exchange experiences and emotional support, which can help people in developing adaptive coping strategies. However, ALS symptoms may make it more difficult for people to use technological devices and engage in online peer support. More research is needed to identify what kind of specific barriers people with ALS experience, and how these could be overcome.
肌萎缩侧索硬化症（ALS）对确诊患者及其家人的生活产生重大影响。支持性的社会环境对于ALS患者采取有效的应对策略和健康行为以及减轻抑郁症状至关重要。同伴支持可以提供这样一个支持性的社会环境，并且可以通过面对面和在线的方式实现。在线同伴支持的优势在于人们可以在自己家中，按照自己的时间和节奏参与，并且它提供了各种不同的平台和交流方式。
（1）探讨在线同伴支持对ALS患者的益处和挑战；（2）确定在线同伴支持对ALS患者的成功要素。
本系统评价选择的方法是叙述性综合。2020年4月对六个数据库进行了系统检索，以查找1989年至2020年发表的文章。2022年6月更新了检索。使用批判性评估技能计划定性研究清单对纳入研究的质量进行评估。
通过系统的数据库检索共识别出10987篇独特文章。其中，9篇被纳入本综述。在线同伴支持的主要益处之一是人们可以使用文字进行交流，而无需口头交流，这对一些ALS患者来说可能具有挑战性。成功要素包括使用个人资料页面和图表来识别具有相似或相关经历的其他人。挑战包括ALS症状可能使使用技术设备变得困难。
同伴支持可以为ALS患者提供一个无评判且支持性的环境，在其中他们可以交流经验和情感支持，这有助于人们制定适应性应对策略。然而，ALS症状可能使人们更难使用技术设备并参与在线同伴支持。需要更多研究来确定ALS患者面临的具体障碍类型以及如何克服这些障碍。
