Melbourne Children's Global Health, Murdoch Children's Research Institute, Melbourne, Victoria, Australia
Albury Wodonga Health, Albury, New South Wales, Australia.
BMJ Glob Health. 2024 Sep 10;9(9):e012989. doi: 10.1136/bmjgh-2023-012989.
To ensure that humanitarian action is disability-inclusive, evidence is needed to understand how different strategies to support children living with disabilities and their families can work in these settings. Evidence from other contexts suggests support groups can improve caregiver quality of life (QOL). This study reports an evaluation of the ' programme a participatory educational support group programme for caregivers of children living with disability in Kabul province, Afghanistan.
We conducted a mixed-methods realist-informed before-and-after study to measure change in caregiver-reported QOL and explore how and for whom the programme worked, and in what contexts. Female caregivers of children with any disability were recruited through clinics in urban Kabul (n=3) and rural Paghman district (n=3). We collected quantitative data on QOL pre/post programme using the Paediatric Quality of Life Inventory Family Impact Module (PedsQL-FIM). Qualitative data were collected through facilitator and participant focus groups postprogramme.
118 caregivers participated in two cohorts (November 2020, February 2021). Caregivers expressed a significant increase in QOL from baseline to programme completion (t(125)=-10.7, p≤0.0001). Participation in cohort 2 was associated with the greatest PedsQL-FIM change.Qualitative data revealed positive changes postprogramme in five key areas: caregiver mindset, parenting practices, disability-inclusive behaviours, psychological well-being and child functioning. These changes were seen as both outcomes and mechanisms influencing the primary outcome of QOL. Mechanisms that mediated these changes included increased knowledge of disability and the core acceptance and commitment therapy components of mindfulness and acceptance.
The caregiver support programme for children living with disability in Afghanistan was associated with improved caregiver QOL. Further studies are warranted to explore pathways to scale, sustainability and potential application in other settings.
为确保人道主义行动包容残疾问题，需要有证据来了解支持残疾儿童及其家庭的不同策略在这些环境中如何发挥作用。来自其他背景的证据表明，支持小组可以提高照顾者的生活质量（QOL）。本研究报告了对“阿富汗喀布尔省残疾儿童照顾者参与式教育支持小组方案”的评估。
我们进行了一项混合方法的真实主义知情前后研究，以衡量照顾者报告的 QOL 变化，并探索该方案如何以及为何在何种情况下为谁发挥作用，以及在何种情况下发挥作用。通过喀布尔市（n=3）和农村帕格曼区（n=3）的诊所招募有任何残疾儿童的女性照顾者。我们使用儿科生活质量清单家庭影响模块（PedsQL-FIM）在方案前/后收集 QOL 的定量数据。方案后通过协调员和参与者焦点小组收集定性数据。
共有 118 名照顾者参加了两个队列（2020 年 11 月，2021 年 2 月）。照顾者的 QOL 从基线到方案完成有显著提高（t（125）=-10.7，p≤0.0001）。参加第二队列与 PedsQL-FIM 变化最大有关。方案后定性数据显示五个关键领域的积极变化：照顾者思维模式、育儿实践、残疾包容行为、心理健康和儿童功能。这些变化既是结果，也是影响 QOL 主要结果的机制。调节这些变化的机制包括对残疾的认识增加，以及正念和接纳的核心接受和承诺疗法成分。
阿富汗残疾儿童照顾者支持方案与照顾者 QOL 的提高有关。需要进一步研究探索扩大规模、可持续性以及在其他环境中的潜在应用途径。
