Empowerment of families raising a child with a developmental disability: a multi-case study approach

Developmental disabilities (DDs) are lifelong conditions involving difficulties in the acquisition and execution of intellectual or social functions. Raising a child with a DD impacts the quality of life and socioeconomic stability of families. The global burden of DDs affects low- and middle-income countries disproportionately. Many families are bound by poverty when setting priorities for their child with a DD. Furthermore, structural inequalities impact their access to services. Caregivers of children with DDs often experience difficulties with claiming the rights of their family and exercising agency to support their children according to their needs. Therefore, empowerment of families and development of accessible support services is an important policy imperative and focus in global health research. The aim of this PhD project is to contribute to our understanding of empowerment of caregivers raising a child with a DD. I explored how social, economic, and cultural factors impact caregiver empowerment in different contexts. The project consists of three phenomenological, qualitative studies. First, I conducted an international study including data from focus group discussions with 15 respondents, and individual interviews with 25 participants from five continents. In this study I investigated perceptions of the role that context plays in the adaptation and implementation of caregiver-mediated interventions globally. I ran two analyses of this study, allowing for the exploration of key directions regarding service development and caregiver empowerment cross-culturally. I went on to use a multiple case study design to investigate caregiver empowerment in two specific contexts: Ethiopia (including data from 63 respondents) and Argentina (including data from 32 respondents). The methods of the two case studies were kept as similar as possible and comprised of perspectives from multiple stakeholders. Lastly, I conducted a comparative analysis of the 11 two case studies to identify key similarities and differences in caregiver empowerment across the two settings. Participants in all studies included stakeholders supporting children with DDs: health and education professionals, researchers, professionals in policymaking, and caregivers of children with DDs. I analysed data thematically. A key finding of this thesis was the need to position caregiver empowerment as a two-way process in which decision-making power is transferred among stakeholders. The goal of caregiver empowerment was conceptualised as removing barriers that would hinder caregivers from doing what they think is best for their child and family, on their own terms. To achieve this structural change, respondents emphasised the need to overcome social exclusion.