Purpose: Previous literature has highlighted marginalisation and stigma of children with disabilities in developing countries, but few studies have explored the central care-giving environment and the relationship of the mother and her child with disabilities in this context. A group of women caring for children with disabilities in a low income community in Karachi, Pakistan was identified for the study. The aims were: (1) to explore the influence children with disabilities have on the daily lives of their mothers, (2) to describe the factors which influence the care-giving capacity of mothers.
Method: A participatory qualitative research design was implemented. A women's group of caregivers of children with disabilities was formed. Several different tools were used during the course of the group meetings to facilitate discussion including social mapping. A thematic analysis of issues around care-giving and the relationship between the mother and her child with disabilities was conducted.
Results: In a society where women may experience restrictions in freedom of movement and decision making, caring for a child with disabilities enabled women to move beyond traditional boundaries in seeking health and education services for their children. However, the gain in empowerment was counter-acted by a lack of care-giving support, a lack of appropriate services for health, rehabilitation and education of children with disabilities and stigma creating anxiety and stress for women.
Conclusion: While children with disabilities do have some positive effects on the lives of their mothers, there are many more factors which create anxiety for this group of mothers (including a lack of care-giving support and stigma). Community-based rehabilitation strategies should consider the care-giving environment of children with disabilities and shift from a child only to family focus. Interventions which support, empower and strengthen the capacity of mothers are essential for the well being of their children with disabilities.