A source of strength and empowerment? An exploration of the influence of disabled children on the lives of their mothers in Karachi, Pakistan

Abstract

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.

Keywords:

• Children
• empowerment
• Pakistan
• mothers

Acknowledgements

The authors are grateful to the mothers and sisters, our research partners, who shared their experiences of caring for a child with disabilities. The authors would also like to acknowledge the efforts of the dedicated research team who facilitated meetings, collected and coordinated the data and enthusiastically participated in discussions with all stakeholders. The authors would like to thank Ms. Ayesha Aziz for her excellent work as research coordinator for the team at the Aga Khan University.

Declaration of interest: This research article is an output of the Research Programme Consortium on Women's Empowerment in Muslim Contexts, led by the City University of Hong Kong. It has been made possible by funding from the UK Department for International Development (DFID) for the benefit of developing countries. The views expressed are not necessarily those of DFID.