Experiences of Parents of Children with Sickle Cell Disease: A Study at 37 Military Hospital

Abstract

Sickle Cell Disease is the most common life-threatening hematologic disorder found in Ghanaian children. The present system of care of these children relies mostly on their parents. Studies have shown that caring for a child with SCD is associated with numerous hardships. However, there is a dearth of literature on the experiences of parents of children with SCD in Ghana. Therefore, this study explored the experiences of parents of children with SCD at the 37 Military Hospital, Ghana using the ABCX family stress model as the guiding theoretical framework. The qualitative research approach that is descriptive and exploratory was used. Using the purposive sampling technique, twelve (12) parents of children receiving care at 37 Military Hospital were engaged in a face-to-face interview. The interviews were audiotaped, transcribed verbatim and analysed using thematic content analysis. Five (5) major themes with their corresponding sub-themes were derived from the data gathered. These themes were; caring for a child with SCD, resources used by parents, perceptions about SCD, the outcome of caregiving (crises) and determinants of the burden of caregiving. The study revealed that parents caring for their children with SCD experience a heavy burden related to the health of the child, physical, financial, occupational/work-related challenges and burden related to health services. The parents expressed a lack of support, especially financial support. The caregiving role altered the physical and psychosocial health of parents who were primary caregivers. In conclusion, the physical and psychosocial health of parents who are primary caregivers should be considered paramount in the plan of care of children with SCD. In addition, there should be adequate financial support for parents caring for children with SCD.