Abstract
Background: Family caregivers have primary responsibility for providing care in the home for people with neuromuscular diseases (NMD). This may negatively affect caregiver health. Peer support may enhance quality of life and reduces stress among family caregivers, but few trials have been conducted in NMD caregivers. Therefore, we conducted a randomized controlled trial (RCT) with a nested qualitative evaluation (this report) of a 12-week virtual peer support intervention for family caregivers of children and adults with NMD.
Objective: To gain insights into the perspectives of intervention participants and peer mentors regarding their experiences with the trial’s virtual peer support program.
Methods: We conducted a nested exploratory qualitative study (August 2022 to March 2024), recruiting participants who were randomized to the intervention arm of the RCT and study mentors. We conducted semi-structured interviews via video conferencing. Homophily theory and the Theoretical Framework of Acceptability informed our analyses.
Results: We interviewed 21 participants and 10 mentors, identifying four themes: (1) Program Participation Motivators; (2) Program Expectations and Appreciation; (3) Program Appropriateness; and (4) The Peer Mentor-Mentee Dyad. We found participants were motivated to join the program due to existing caregiver burden and social isolation. Participants and mentors appreciated the program’s sense of community and flexible virtual format, with participants valuing the emotional and informational support. However, challenges in relating to each other’s situations due to participant and mentor heterogeneity in the extent of care recipient’s needs were perceived to limit benefit.
Conclusions: Peer support was perceived as potentially beneficial in relieving caregiver burden and social isolation creating a sense of community that provides emotional and informational support. The virtual and flexible format was an important facilitator. An important barrier was participant-mentor heterogeneity resulting in reduced perception of homophily. These findings can inform development of other virtual peer support programs to alleviate caregiver burden and isolation and to provide emotional relief and informational guidance.
Objective: To gain insights into the perspectives of intervention participants and peer mentors regarding their experiences with the trial’s virtual peer support program.
Methods: We conducted a nested exploratory qualitative study (August 2022 to March 2024), recruiting participants who were randomized to the intervention arm of the RCT and study mentors. We conducted semi-structured interviews via video conferencing. Homophily theory and the Theoretical Framework of Acceptability informed our analyses.
Results: We interviewed 21 participants and 10 mentors, identifying four themes: (1) Program Participation Motivators; (2) Program Expectations and Appreciation; (3) Program Appropriateness; and (4) The Peer Mentor-Mentee Dyad. We found participants were motivated to join the program due to existing caregiver burden and social isolation. Participants and mentors appreciated the program’s sense of community and flexible virtual format, with participants valuing the emotional and informational support. However, challenges in relating to each other’s situations due to participant and mentor heterogeneity in the extent of care recipient’s needs were perceived to limit benefit.
Conclusions: Peer support was perceived as potentially beneficial in relieving caregiver burden and social isolation creating a sense of community that provides emotional and informational support. The virtual and flexible format was an important facilitator. An important barrier was participant-mentor heterogeneity resulting in reduced perception of homophily. These findings can inform development of other virtual peer support programs to alleviate caregiver burden and isolation and to provide emotional relief and informational guidance.
| Original language | English |
|---|---|
| Journal | Journal of Medical Internet Research |
| Publication status | Accepted/In press - 30 May 2025 |
Keywords
- family caregivers
- neuromuscular disease
- peer support
- digital
- qualitative