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


METHODS
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.


CONCLUSIONS
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.
Yousafzai
Aisha Khizar
AK
Department of Paediatrics and Child Health, Aga Khan University, Karachi, Pakistan. aisha.yousafzai@aku.edu
Farrukh
Zia
Z
Khan
Kausar
K
D000223:Adaptation, Psychological; D000293:Adolescent; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002668:Child Rearing / Q000523:psychology*; D002675:Child, Preschool; D003906:Developing Countries; D019988:Children with Disabilities / Q000534:rehabilitation; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D009034:Mother-Child Relations; D009035:Mothers / Q000523:psychology*; D010154:Pakistan; D011203:Poverty; D011788:Quality of Life; D012681:Sensitivity Training Groups; D012931:Social Environment; D057545:Social Stigma; D013315:Stress, Psychological / Q000175:diagnosis / Q000523:psychology / Q000534:rehabilitation