A web of gaps: a discussion of research strands concerning Global South families with a disabled child

Abstract

Background: In low- and middle-income countries (LMICs), limited access to a range of supports means that families often carry primary responsibility for the care of a disabled child. The impact of this responsibility is poorly understood. Objective: To present a selective review, critique, and comparison of the prominent areas of research aimed at understanding families with disabled children in the Global South. Design: We compare and critically discuss prominent bodies of literature concerning the family-disability-poverty nexus in LMICs. Results: Three prominent bodies of literature concerned with families with a disabled child in LMICs are reviewed. These were selected based on their relative prevalence in a large review of the literature, and comprise (1) work concerning quality of life (FQOL) of families with a disabled child; (2) interventions aimed at supporting families with a disabled child in LMICs; and (3) the ways in which culture mediates the families’ experience of disability. FQOL research points to poverty as a primary source of family distress, and directs our focus towards families’ own expertise in coping with their circumstances. Intervention literature from LMICs highlights the family as the unit of analysis and praxis concerning disabled children, and reminds us of the contextual factors which must be considered when working with their families. Conclusions: Culturally oriented research on poverty, disability, and the family nuances our understanding of the locally-determined priorities of families with a disabled child in LMICs. All three research strands carry benefits, limitations and gaps. The complexity of understanding families with a disabled child in LMICs comes to the fore, directing us away from narrow application of any single theoretical or research framework. Future researchers may draw on insights provided here in creating a more integrated approach.

Keywords

• disability
• low- and middle-income countries
• poverty
• amartya sen