Financial strain and resilience: a qualitative exploration of parental perspectives on caring for children with sickle cell disease in Ghana.

Background: In Ghana, nearly one in four (25%) of the population are sickle cell disease carriers. Furthermore, 2% of all babies born (20 for every 1000 live births) has sickle cell disease. However, little is known about how parents negotiate the financial challenges facing parents of a child with sickle cell disease. This study explores the financial difficulties of parents and children living with sickle cell disease.

Methods: The study adopted a qualitative approach. Twenty-seven parents were purposively selected from a sickle cell clinic in Accra, Ghana. Data collection was through an in-depth, face-to-face interview, using an interview guide based on the research objectives, and analyzed using thematic analysis.

Result: The findings showed that parents faced multiple financial difficulties (both direct and indirect) as they met the direct cost of medications, routine laboratory investigations, and hospital admissions. The National Health Insurance scheme does not wholly cover these costs. Families also describe more indirect costs, such as those associated with maintaining their child's well-being alongside those connected to their caring responsibilities, including the impact of giving up work and reducing working hours. Findings highlight the most pressing challenge, including the lack of access to financial support and a more general lack of understanding of the difficulties they faced on the part of policymakers.

Conclusion: Supporting sickle cell parents' financial needs would improve their emotional and social well-being, enabling them to be more effective family carers.