Family Quality of Life in Ethiopia: Exploring the Perceptions of Family Members of Children with Disabilities and Support Providers

Abstract

Background: Family quality of life (FQOL) is an important outcome for families of children with disabilities globally; however, minimal research has focused on families in low-income contexts, specifically in Africa. Research has primarily conceptualised FQOL from the perspectives of mothers in high-income countries. Additionally, support provision is associated with improved FQOL, but further research is needed to understand how support can practically meet families’ diverse needs in low-income contexts. Purpose: This dissertation sought to understand how Ethiopian families of children with various disabilities conceptualise FQOL and how their support needs, and the provision of support contribute to FQOL. Method: I conducted three inter-related studies, starting with a scoping review to identify factors that contribute to FQOL for families of children with disabilities in African contexts. I subsequently conducted two exploratory descriptive qualitative studies, first with Ethiopian family members of children with disabilities, and then with support providers. Results: Although similar factors contribute to FQOL internationally, poverty, stigma, and spirituality are particularly prominent in African contexts. In Ethiopia specifically, families experienced significant poverty and stigma, and spirituality was foundational to their lives and FQOL. They also described FQOL in terms of relationships within the family and with community, and they sought self-sufficiency, primarily through education and employment. However, with the enormous responsibilities of raising a child with a disability, they recognised their need for, and overall inadequacy, of support. Ethiopian support providers affirmed the centrality of spirituality, relationships, and self-sufficiency for FQOL, and described various ways they support families, emotionally, physically, materially, and informationally. Yet, they also experienced challenges and needed support to contribute positively to FQOL. Conclusions: Culture and context influence FQOL, and understanding FQOL from the perspective of Ethiopian families of children with disabilities can help to direct appropriate and feasible support provision. Recognising the foundational role of spirituality, providing holistic support, and awareness-raising to minimise disability stigma are crucial for supporting FQOL. All stakeholders, including families, communities, support providers, and government, must work collaboratively to address the needs of families of children with disabilities to enhance FQOL and allow children with disabilities and their families to truly flourish.