Exploring the Use of a Facebook-Based Support Group for Caregivers of Children and Youth with Complex Care Needs: Qualitative Descriptive Study

Abstract

Background: Caregivers of children and youth with complex care needs (CCN) require substantial support to ensure the well-being of their families. Web-based peer-to-peer (P2P) support groups present an opportunity for caregivers to seek and provide timely informational and emotional support. Despite the widespread use of social media for health-related support across diverse patient and caregiver populations, it is unclear how caregivers of children and youth with CCN use and potentially benefit from these groups. Objective: The aim of this study is to explore the use of a web-based P2P support group for caregivers of children and youth with CCN in New Brunswick, Canada, and investigate factors related to its use by members. Methods: The study sample consisted of individuals who joined a closed Facebook group and an analysis of content published to the group. In phase 1, a Facebook group was developed in consultation with a patient and family advisory council, and members were recruited to the group. Phase 2 of this study consisted of an observation period during which posts and related interactions (ie, likes, loves, and comments) by members were collected. In phase 3, a web-based survey was distributed, and semistructured interviews were conducted with a subsample of group members. Survey and interview data were analyzed using thematic analysis. Results: A total of 108 caregivers joined the Facebook group between October 2020 and March 2021. There were 93 posts with 405 comments and 542 associated interactions (448/542, 82.7% likes and 94/542, 17.3% loves). Of these 93 posts, 37 (40%) were made by group members, and 56 (60%) were made by moderators. Of the 108 members, a subsample of 39 (36.1%) completed a web-based survey, and 14 (13%) participated in the interviews. Content analyses of posts by members revealed that inquiry (17/37, 46%), informational (15/37, 41%), and emotional posts (4/37, 11%) were the most common. Emotional posts received the highest number of interactions (median 24.5). In total, 5 themes emerged from the interviews related to the use of the group and mediating factors of interactions between group members: resource for information, altruistic contribution, varying level of engagement, perceived barriers to and facilitators of group activity, and moderators as contributing members. Conclusions: These findings demonstrate that caregivers of children and youth with CCN seek geography-specific P2P support groups to meet informational and social support needs. This study contributes to the knowledge on how caregivers use Facebook groups to meet their support needs through moderate and passive engagement.