Supporting caregivers of children living with disability in a humanitarian context: realist-informed evaluation of the ‘Mighty Children’ programme in Afghanistan

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. Data are available on reasonable request.