Wasilewski Marina B, Kokorelias Kristina M, Nonoyama Mika, Dale Craig, McKim Douglas A, Road Jeremy, Leasa David, Tandon Anu, Goldstein Roger, Rose Louise
St. John's Rehab Research Program, Sunnybrook Research Institute, Toronto, Ontario, Canada.
Rehabilitation Sciences Institute, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada.
Digit Health. 2022 Nov 25;8:20552076221134964. doi: 10.1177/20552076221134964. eCollection 2022 Jan-Dec.
Family caregivers play an important role supporting the day-to-day needs of ventilator-assisted individuals (VAIs) living at home. Peer-to-peer communication can help support these caregivers and help them sustain caregiving in the community. Online peer-support has been suggested as a way to help meet caregivers' support needs.
A qualitative descriptive approach was used to elicit the perspectives of support received from caregivers who participated in a pilot web-based peer support program from October to December 2018. Data were collected through the transcripts of weekly online peer-to-peer group chats. Data were analyzed using an integration of thematic and framework analysis.
In total, eight caregivers and five peer mentors participated in the pilot. All five mentors and four of the caregivers participated in the weekly chats. We identified three themes, a) The experience of caregivers is characterized by unique challenges related to the complexity of VAI care including technology; b) Mentors and caregiver participants reciprocally share support; c) Despite hardships, there are things that make caregiving easier and joyful.
Our results add to the growing body of evidence pointing to the importance of online communities for supporting vulnerable caregivers. The reciprocal element of peer support, where trained mentors and untrained participants both benefit from support, can help sustain peer-support interventions. Despite the challenges of providing care to a VAI, there are facilitators that may help ease the caregiving experience and caregivers can benefit from ongoing support that is tailored to their needs along the caregiving trajectory.
家庭照护者在满足居家使用呼吸机辅助设备者（VAI）的日常需求方面发挥着重要作用。同伴间的交流有助于为这些照护者提供支持，并帮助他们在社区中持续提供照护服务。在线同伴支持被认为是满足照护者支持需求的一种方式。
采用定性描述性方法，以了解参与2018年10月至12月基于网络的同伴支持试点项目的照护者所获得的支持情况。通过每周在线同伴小组聊天记录收集数据。使用主题分析和框架分析相结合的方法对数据进行分析。
共有8名照护者和5名同伴导师参与了该试点项目。所有5名导师和4名照护者参与了每周的聊天。我们确定了三个主题：a）照护者的经历具有与VAI护理复杂性（包括技术方面）相关的独特挑战；b）导师和照护者参与者相互提供支持；c）尽管困难重重，但仍有一些因素使照护变得更容易且令人愉悦。
我们的结果进一步证明了在线社区对支持弱势照护者的重要性，这一证据越来越多。同伴支持的互惠元素，即受过培训的导师和未经培训的参与者都能从支持中受益，有助于维持同伴支持干预措施。尽管为VAI提供护理存在挑战，但仍有一些促进因素可能有助于缓解照护经历，并且照护者可以从沿照护轨迹根据其需求量身定制的持续支持中受益。
