JMIR Publications

ABSTRACT

Background:

Caregivers of children and youth with complex care needs (CCN) often require considerable support to ensure the well-being of their families. Social media presents an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are one way that 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 CCN is not known.

Objective:

This study aimed to: (1) explore the experiences of caregivers of children and youth with CCN who use a Facebook-based P2P support group to communicate; (2) understand their motivations to use the group; and (3) investigate its perceived impact on knowledge of programs and services and sense of community belonging in caregivers.

Methods:

A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based P2P support group for caregivers of children and youth with CCN in New Brunswick, Canada. The group was launched online in October 2020, during the COVID-19 pandemic, and resulted in 108 caregivers joining the group. An online survey was distributed, and semi-structured interviews were conducted in February 2021 with a sub-sample of members. Thematic analysis was used to identify, and report patterns related to caregiver experiences and perceived impacts of participation.

Results:

A sub-sample of members in the Facebook group completed the online survey (n=39) and interviews (n=14). Five themes emerged from interviews: (1) Safe Space; (2) Informational Support and Direction; (3) Virtually Connect with Peers; (4) Impact on Knowledge of Programs and Services; and (5) Degree of Community Belonging. Participants reported joining the group to obtain geographic-specific information support and to connect with peers. Many participants reported an improvement in 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 presents 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 online, geographic-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCN. This work further provides insight into the experiences and motivations of caregivers of children and youth with CCN who participate in a private social media environment.