Mothers' experiences of caring for a child with severe brain injury in a disadvantaged community in the Cape Flats

Abstract

Health professionals have a limited understanding of the experiences of mothers caring for a child with traumatic brain injury (TBI) in a context of disadvantage. This may be due to the dearth of qualitative research on this topic in the South African context. This phenomenological study aimed to explore and describe the lived experiences of four mothers caring for their children with severe TBI in disadvantaged communities in the Cape Flats. Their lived experiences were described in terms of lived space, lived body, lived social relationships and lived time.  Two in-depth interviews were done with each of the four mothers. Interviews were transcribed verbatim and analysed inductively. Three themes which emerged from the analysis were: “personal burden of care”, “living a different life with a different child” and “holding onto faith and hope”. The findings highlighted that caring for a child with TBI changed the mothers’ circumstances in such a way that they had no time for themselves, because caring for and worrying about their children consumed their whole day.  They also experienced increased financial burden as they resigned from their employment to care for their children fulltime.  They had to change their parenting style as the children had different needs than before the TBI.  The mothers also identified many needs of their own, including the need for meaningful occupations and support.  However, they remained optimistic and experienced a stronger faith in God.  The findings stressed the need for intervention with these mothers to prevent a decline in their well-being.

Key words:  Traumatic brain injury, Disadvantaged community, Occupation, Well-being