背景:有复杂护理需求(CCN)的儿童和青年的护理人员通常需要大量支持以确保其家庭的福祉。社交媒体提供了一个机会,可以通过计算机介导的交流来更好地支持护理人员,以获得社会支持。对等(P2P)支持组是照顾者获得所需支持的一种方式;然而,使用这些群体的照顾者的经验以及参与对患有CCN的儿童和青年的照顾者的感知影响尚不清楚.
目的:本研究旨在探索使用基于Facebook的P2P支持小组进行交流的CCN儿童和青少年照顾者的经验,了解他们使用团队的动机,并调查其对项目和服务知识以及护理人员社区归属感的感知影响。
方法:使用定性描述性设计来探索基于Facebook(元平台)的P2P支持小组对新不伦瑞克省CCN儿童和青少年的照顾者的经验和感知影响,加拿大。该组织于2020年10月在网络上启动,在COVID-19大流行期间,并导致108名护理人员加入该小组。分发了一份基于网络的调查,半结构化访谈于2021年2月进行,对成员进行了子样本。主题分析用于识别和报告与护理人员经验和感知的参与影响相关的模式。
结果:Facebook小组成员的子样本完成了基于网络的调查(39/108,36.1%)和访谈(14/108,12.9%)。采访中总共出现了5个主题:安全空间,信息支持和指导,与同行的基于Web的连接,对项目和服务知识的影响,以及社区归属感的程度。参与者报告说加入该小组是为了获得特定地理位置的信息支持并与同伴联系。许多参与者报告说,他们对计划和服务的了解有所改善,并感到与社区有联系;然而,观察时间短和照顾者人群的多样性被认为是社区归属感的障碍.
结论:社交媒体提供了一个重要的机会,可以促进患者和护理人员在可访问和有计划的环境中交流支持。这项研究的结果表明,参与基于网络的,特定于地理的P2P支持小组可以影响CCN儿童和青少年照顾者对服务和资源的感知知识以及社区归属感。此外,这项研究提供了深入了解参与私人社交媒体环境的CCN儿童和青少年照顾者的经历和动机。
BACKGROUND: Caregivers of children and youth with complex care needs (CCNs) often require considerable support to ensure the well-being of their families. Social media present an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are a way in which caregivers are accessing needed support; however, the experiences of caregivers who use these groups and the perceived impact that participation has on caregivers of children and youth with CCNs are not known.
OBJECTIVE: This study aimed to explore the experiences of caregivers of children and youth with CCNs who use a Facebook-based P2P support group to communicate, understand their motivations to use the group, and investigate its perceived impact on knowledge of programs and services and sense of community belonging among caregivers.
METHODS: A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based (Meta Platforms) P2P support group for caregivers of children and youth with CCNs in New Brunswick, Canada. The group was launched on the web in October 2020, during the COVID-19 pandemic, and resulted in 108 caregivers joining the group. A web-based survey was distributed, and semistructured interviews were conducted in February 2021 with a subsample of members. Thematic analysis was used to identify and report patterns related to caregivers\' experiences and perceived impacts of participation.
RESULTS: A subsample of members in the Facebook group completed the web-based survey (39/108, 36.1%) and interviews (14/108, 12.9%). A total of 5 themes emerged from the interviews: safe space, informational support and direction, web-based connection with peers, impact on knowledge of programs and services, and degree of community belonging. Participants reported joining the group to obtain geography-specific information support and connect with peers. Many participants reported an improvement in their knowledge of programs and services and felt connected to the community; however, the short observation period and diversity among the caregiver population were cited as barriers to community belonging.
CONCLUSIONS: Social media present an important opportunity to facilitate the exchange of support between patients and caregivers in an accessible and curated environment. Findings from this study suggest that involvement in web-based, geography-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCNs. Furthermore, this study provides insight into the experiences and motivations of caregivers of children and youth with CCNs who participate in a private social media environment.