The Experiences of Parents of Children with Sickle Cell Disease in a Metropolis in Ghana

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Abstract Problem: Sickle cell disease imposes complex demands on the lives of affected children and their families. In recent years, several studies have appraised the burden of care on parents of children with SCD in different parts of the world. This study explored the experiences of parents of children with SCD in a metropolis in Ghana, using the ABCX family stress model as the guiding theoretical framework. Methods The exploratory qualitative research approach was used. Thirteen (13) parents were purposively selected and engaged in individual, face-to-face interviews. The interviews were audio-recorded, transcribed verbatim, and analyzed using thematic content analysis. Results Three (3) major themes emerged namely, the perception of SCD by participants, the burden of care, and the resources used by parents. Participants had negative perceptions of SCD and were reluctant to give birth again due to the challenges of caring for a child with SCD. Resources used by participants were social support and coping strategies. Conclusions Genetic counseling before marriage should be highlighted in the awareness creation of SCD. Professional counseling services should be intensified to assist parents of children with SCD to promote their emotional health.

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