Revista de Hematología y Enfermedades Tromboembólicas
Acceso abierto

abstracto

The Experiences of Parents of Children with Sickle Cell Disease in the Tamale Metropolis, Ghana

Francis Borsongdeme Bayuo*, Winifred Pogsaa Wondong, Felix Apiribu, Edward Appiah Boateng, Philomena Ajanaba Asakeboba

Background: Sickle cell disease imposes complex demands on the lives of affected children and their families. Stress levels experienced by parents of children with sickle cell disease have been attributed to financial demands, physical burdens, maladaptive behaviors in children, feelings of social isolation and concerns about the child’s lifelong care. 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 the Tamale Metropolis, Ghana using the ABCX family stress model as the guiding theoretical framework.

Methodology: 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 with their corresponding sub-themes were derived from the data gathered. The major themes were the perception of SCD by participants, the burden of care and the resources used by parents. Participants had negative perceptions of SCD and mostly avoided disclosing their child’s sickling status due to fear of the stigmatization that seems rampant in their communities. Participants were reluctant to give birth again due to the challenges of caring for a child with sickle cell disease.

The study also found that having a child with SCD in a polygamous marriage is an emotional issue for the affected women as it leads to inferiority and inability to speak up. Resources used by participants were social support and coping strategies. Participants received significant social support from family members, friends, health providers, parent-to-parent support groups and the online community. Religion was used as a coping strategy to derive comfort from observing faith-based practices.

Conclusion: Participants mostly had negative perceptions of sickle cell disease and the implications of caring for children with SCD seem to add to the negative perceptions. Faith-based practices as well as a good support system aid parents in coping with the stresses of caring for their children with SCD. Genetic counselling 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. Increased efforts should be directed at addressing stigmatization associated with having a child with SCD within communities in the Tamale Metropolis.