Care perspectives: Mothers of children with disabilities in a peri-urban setting in South Africa

Abstract

Background: Within lower- to middle-income countries, mothers of children with disabilities often bear the burden of caregiving for their children, and experience various familial, systemic, structural and sociocultural challenges to the fulfilment of this role. Objectives: This article discusses the barriers and enablers to caregiving experienced by mothers of children with disabilities living in a peri-urban setting in South Africa. Method: A qualitative study using in-depth interviews was implemented with six mothers of children with disabilities, recruited through total population sampling. Interviews were conducted in three South African languages – English, isiXhosa and Afrikaans. The interviews were translated, transcribed and analysed thematically. Results: Key challenges experienced in care giving include poverty, a sense of abandonment and communal stigma. Despite the challenges, the mothers identify spirituality and empathetic healthcare workers as a support for caregiving. Conclusion: Mothers of children with disabilities experience isolation and stigmatisation, are often alienated from accessing community structures on an equal basis with others, creating a barrier to caregiving for these mothers. An inclusive and targeted approach is needed to raise awareness and create peer support groups for mothers of children with disabilities. Contribution: A sense of isolation, financial challenges and familial abandonment are significant challenges for mothers of children with disabilities, but they find strength in spirituality. Spiritual belief systems and collaboration with community and spiritual leaders are advocated for ongoing communal support for mothers of children with disabilities. An inclusive, authentic intersectoral collaboration is needed to enhance caregiving capacity for mothers of children with disabilities.