Natalie Evans, Noorwhiza Ahmadi, Alice Morgan, Sadia Zalmai, Kate M Milner, Mohamed Faiz Atif, Hamish R Graham
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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. Results 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. Conclusion The Mighty Children 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. Data are available on reasonable request.","PeriodicalId":9137,"journal":{"name":"BMJ Global Health","volume":"67 1","pages":""},"PeriodicalIF":7.1000,"publicationDate":"2024-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Supporting caregivers of children living with disability in a humanitarian context: realist-informed evaluation of the ‘Mighty Children’ programme in Afghanistan\",\"authors\":\"Natalie Evans, Noorwhiza Ahmadi, Alice Morgan, Sadia Zalmai, Kate M Milner, Mohamed Faiz Atif, Hamish R Graham\",\"doi\":\"10.1136/bmjgh-2023-012989\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"Introduction 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 ‘ Mighty Children’ programme a participatory educational support group programme for caregivers of children living with disability in Kabul province, Afghanistan. Methods 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. Results 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. Conclusion The Mighty Children 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. 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引用次数: 0
摘要
导言 为确保人道主义行动兼顾残疾问题,我们需要证据来了解支持残疾儿童及其家庭的不同策略如何在这些环境中发挥作用。来自其他环境的证据表明,支持小组可以改善照顾者的生活质量(QOL)。本研究报告对 "全能儿童 "计划进行了评估,该计划是一项参与式教育支持小组计划,面向阿富汗喀布尔省的残疾儿童照顾者。方法 我们采用混合方法进行了一项真实的前后对比研究,以衡量照顾者报告的 QOL 变化情况,并探索该计划如何发挥作用、对谁发挥作用以及在什么情况下发挥作用。我们通过喀布尔市区(3 人)和帕格曼农村地区(3 人)的诊所招募了残疾儿童的女性照顾者。我们使用儿科生活质量量表家庭影响模块(PedsQL-FIM)收集了计划前后生活质量的定量数据。计划结束后,通过主持人和参与者焦点小组收集定性数据。结果 118 名护理人员参加了两次培训(2020 年 11 月和 2021 年 2 月)。从基线到计划完成,护理人员的 QOL 有了明显提高(t(125)=-10.7,p≤0.0001)。参加第二组计划的护理人员的 PedsQL-FIM 变化最大。定性数据显示,计划结束后,以下五个关键领域发生了积极变化:照顾者心态、养育实践、残疾包容行为、心理健康和儿童功能。这些变化被视为影响 QOL 这一主要结果的结果和机制。影响这些变化的机制包括对残疾的进一步了解,以及接受和承诺疗法的核心内容--正念和接受。结论 针对阿富汗残疾儿童的 "强大儿童 "照顾者支持计划与照顾者 QOL 的改善有关。有必要开展进一步研究,以探索扩大规模的途径、可持续性以及在其他环境中的潜在应用。如有合理要求,可提供相关数据。
Supporting caregivers of children living with disability in a humanitarian context: realist-informed evaluation of the ‘Mighty Children’ programme in Afghanistan
Introduction 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 ‘ Mighty Children’ programme a participatory educational support group programme for caregivers of children living with disability in Kabul province, Afghanistan. Methods 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. Results 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. Conclusion The Mighty Children 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. Data are available on reasonable request.
期刊介绍:
BMJ Global Health is an online Open Access journal from BMJ that focuses on publishing high-quality peer-reviewed content pertinent to individuals engaged in global health, including policy makers, funders, researchers, clinicians, and frontline healthcare workers. The journal encompasses all facets of global health, with a special emphasis on submissions addressing underfunded areas such as non-communicable diseases (NCDs). It welcomes research across all study phases and designs, from study protocols to phase I trials to meta-analyses, including small or specialized studies. The journal also encourages opinionated discussions on controversial topics.