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

Responsible Editor Nawi Ng, Umeå University, Sweden

Responsible Editor Nawi Ng, Umeå University, Sweden

Acknowledgments

None

Disclosure statement

No potential conflict of interest was reported by the authors.

Ethics and consent

This manuscript has not been submitted to any other publications for consideration. The data (reviewed material) are available with the authors and can be accessed upon request.

Paper context

Research approaches to the impact on Global South families living in poverty of caring for a child with disabilities are limited and disparate. We divide these into three categories, pertaining to family quality of life, interventions, and cultural meanings. Using Sen’s ‘capabilities’ model of poverty, this paper distils key insights for future research from this work, while critiquing theory and method for its limited applicability to LMI countries, and neglect of the family-disability-poverty nexus.

Additional information

Funding

No funding was received for the present paper.

Notes on contributors

Xanthe Hunt

XH conducted the brief review of the literature. BW and XH were both involved in the analysis, synthesis, and critical discussion of the results. Both authors were involved in writing the manuscript, and its revisions.

Brian Watermeyer

XH conducted the brief review of the literature. BW and XH were both involved in the analysis, synthesis, and critical discussion of the results. Both authors were involved in writing the manuscript, and its revisions.