Tistad Malin, Hultman Lill, Wohlin Wottrich Annica, von Koch Lena
Care Sciences and Society, Department of Neurobiology, Karolinska Institutet, Huddinge, Sweden.
School of Health and Welfare, Dalarna University, Falun, Sweden.
J Med Internet Res. 2025 Mar 25;27:e67658. doi: 10.2196/67658.
Stroke and other acquired brain injuries (ABIs) can present challenging experiences for individuals, both in recovery of functions affected by visible or invisible impairments and in learning to live with the new situation. Research has shown that sharing experiences face-to-face in peer groups can be beneficial during recovery. However, there is limited knowledge about the lived experiences of people with ABI who participate in online peer-to-peer groups.
The aim of our study was to explore the lived experiences of participating in online peer-to-peer groups for people with ABI, where participants themselves set the agenda.
Members of 2 Facebook groups (FBGs) for people with ABI were invited to participate in this study, and 20 individuals were included (14 women and 6 men; age range 24-74 years). One FBG focused on stroke and the other on fatigue caused by ABI. One group was private, and the other group was public. Data were collected through semistructured interviews, in which participants were encouraged to describe their experiences of engaging in FBGs in detail. The interviews were conducted over telephone or Zoom and digitally recorded. The audio recordings were then transcribed verbatim, resulting in 224 pages of text, and analyzed using the empirical phenomenological psychological method.
The analysis presented a common meaning structure with 1 main characteristic that is, "validating self," common for all 20 participants, and 3 subcharacteristics, that is, "learning-having one's own experiences confirmed," "adjusting self-building competence and self-compassion," and "supporting others-becoming a valued lived-experience expert/authority." Together, the subcharacteristics reflected a process of validating self from newcomer to lived-experience expert or authority. In this process, members of FBGs moved from being newcomers with pronounced needs for support and to learn and to have their experiences confirmed by others with similar experiences. Thus, participants were building competence and developing self-compassion. Gradually, they assumed the role of advisors, mentors, or coaches, acknowledging their experiences and competence as valuable to others, thereby validating themselves as compassionate lived-experience experts or authorities in supporting others.
Participation in online peer-to-peer groups can offer unique opportunities for individuals with ABI to validate self through processes that involve learning, developing self-compassion and compassion for others, and offering support to others with similar experiences. Given that rehabilitation after an ABI is often of limited duration and that positive experiences can be achieved over time through involvement in digital peer-to-peer support, health care professionals should assist patients by providing information and directing them to digital networks for people with ABI. However, when recommending the use of online peer-to-peer support, impairments and insufficient digital competence that may complicate or prevent the use of social media should be assessed and support provided when relevant.
中风和其他后天性脑损伤（ABI）对个人来说可能是具有挑战性的经历，无论是在受可见或不可见损伤影响的功能恢复方面，还是在学会适应新情况方面。研究表明，在同伴群体中面对面分享经历在恢复过程中可能有益。然而，对于参与在线对等群体的ABI患者的生活经历了解有限。
我们研究的目的是探索ABI患者参与在线对等群体的生活经历，其中参与者自己设定议程。
邀请了两个面向ABI患者的脸书群组（FBG）的成员参与本研究，纳入了20名个体（14名女性和6名男性；年龄范围24 - 74岁）。一个FBG关注中风，另一个关注ABI引起的疲劳。一个群组是私密的，另一个群组是公开的。通过半结构化访谈收集数据，鼓励参与者详细描述他们参与FBG的经历。访谈通过电话或Zoom进行并数字录音。录音随后逐字转录，形成224页文本，并采用实证现象学心理学方法进行分析。
分析呈现了一个共同的意义结构，有1个主要特征，即“自我验证”，这对所有20名参与者来说是共同的，还有3个子特征，即“学习——自己的经历得到确认”、“自我调整——培养能力和自我同情”以及“支持他人——成为有价值的生活经验专家/权威”。这些子特征共同反映了一个从新手到生活经验专家或权威的自我验证过程。在这个过程中，FBG的成员从有明显支持需求、需要学习并让他人确认自己经历的新手，转变为逐渐培养能力并发展自我同情的人。渐渐地，他们承担起顾问、导师或教练的角色，承认自己的经历和能力对他人有价值，从而将自己验证为在支持他人方面富有同情心的生活经验专家或权威。
参与在线对等群体可以为ABI患者提供独特的机会，通过涉及学习、培养自我同情和对他人的同情以及为有类似经历的人提供支持的过程来实现自我验证。鉴于ABI后的康复通常持续时间有限，并且通过参与数字对等支持随着时间推移可以获得积极体验，医疗保健专业人员应通过提供信息并引导患者加入面向ABI患者的数字网络来帮助他们。然而，在推荐使用在线对等支持时，应评估可能使社交媒体使用复杂化或阻碍其使用的损伤和数字能力不足情况，并在相关时提供支持。
