Experiences, Motivations, and Perceived Impact of Participation in a Facebook-Based Support Group for Caregivers of Children and Youth With Complex Care Needs: Qualitative Descriptive Study
Bibliographic record
Abstract
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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.005 | 0.008 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.007 | 0.004 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".