Mekhuri Samantha, Dale Craig, Buchanan Francine, Hammash Nouma, Ambreen Munazzah, Saha Sian, Rose Louise, Amin Reshma
Department of Paediatrics, Division of Respiratory Medicine, The Hospital for Sick Children, 555 University Avenue, Toronto, ON, M5G 1X8, Canada, 1 6472807374.
Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, ON, Canada.
J Med Internet Res. 2025 Jul 28;27:e72141. doi: 10.2196/72141.
Family caregivers have primary responsibility for providing care in the home for people with neuromuscular diseases (NMDs). This may negatively affect caregiver health. Peer support may enhance quality of life and reduce stress among family caregivers, but few trials have been conducted in NMD caregivers. Therefore, we conducted a randomized controlled trial with a nested qualitative evaluation (this report) of a 12-week digital peer support intervention for family caregivers of children and adults with NMD.
The aim of the study is to gain insights into the perspectives of intervention participants and peer mentors regarding their experiences with the trial's digital peer support program.
We conducted a nested exploratory qualitative study (August 2022 to March 2024), recruiting participants who were randomized to the intervention arm of the randomized controlled trial and study mentors. We conducted semistructured interviews via videoconferencing. Homophily theory and the theoretical framework of acceptability informed our analyses.
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 that 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 digital format, with participants valuing emotional and informational support. However, challenges in relating to each other's situations due to participant and mentor heterogeneity in the extent of the care recipient's needs were perceived to limit benefit.
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 digital and flexible format was an important facilitator. An important barrier was participant-mentor heterogeneity resulting in reduced perception of homophily. These findings can inform the development of other digital peer support programs to alleviate caregiver burden and isolation and provide emotional relief and informational guidance.
家庭照护者主要负责在家中照顾患有神经肌肉疾病（NMDs）的患者。这可能会对照护者的健康产生负面影响。同伴支持可能会提高生活质量并减轻家庭照护者的压力，但针对NMDs照护者进行的试验很少。因此，我们开展了一项随机对照试验，并对针对患有NMDs的儿童和成人的家庭照护者进行的为期12周的数字同伴支持干预进行了嵌套式定性评估（本报告）。
本研究的目的是深入了解干预参与者和同伴导师对试验数字同伴支持项目体验的看法。
我们开展了一项嵌套式探索性定性研究（2022年8月至2024年3月），招募随机分配到随机对照试验干预组的参与者和研究导师。我们通过视频会议进行了半结构化访谈。同质性理论和可接受性理论框架为我们的分析提供了指导。
我们采访了21名参与者和10名导师，确定了四个主题：（1）项目参与动机，（2）项目期望与赞赏，（3）项目适宜性，（4）同伴导师-学员二元组。我们发现，由于现有的照护者负担和社会隔离，参与者有动力加入该项目。参与者和导师赞赏该项目的社区感和灵活的数字形式，参与者重视情感和信息支持。然而，由于参与者和导师在受照护者需求程度上存在异质性，在理解彼此情况方面存在挑战，这被认为限制了受益。
同伴支持被认为在减轻照护者负担和社会隔离方面可能有益，营造了一种提供情感和信息支持的社区感。数字和灵活的形式是一个重要的促进因素。一个重要的障碍是参与者-导师异质性导致同质性感知降低。这些发现可为其他数字同伴支持项目的开发提供参考，以减轻照护者负担和隔离，并提供情感缓解和信息指导。
