Living with disabled children in Malawi: Challenges and rewards

BACKGROUND: Rehabilitation personnel need to be sensitive to the cultural aspects that constitute the environment of a disabled child's family life. OBJECTIVES: The aim of this study was to gain insight on how families experience parenting of disabled children and how the families experience the support provided by the rehabilitation system in Malawi. METHOD: An anthropological field study combining interviews and observations was conducted in a rural district of Malawi in 2011. Permission was granted to follow four families, and this study presents the stories of two families, whose children have severe disabilities. We used phenomenological and narrative analyses to make sense of the stories. RESULTS: The findings indicate that families with disabled children invest time and emphasise care for their disabled children. They feel enriched by their experience despite challenging situations with little support from the rehabilitation services. High standards of care demonstrating positive and moral attitudes have earned these families respect in their communities. Storytelling has created an opportunity for the families to understand and interpret their challenging situation with inherent contextual meaning. CONCLUSION: This study shows that families with disabled children draw on cultural and structural strengths that rehabilitation professionals should be aware of in their support to mothers and other caregivers of children with disabilities.