Exploring the quality of life of caregivers of children with sickle cell disease in a secondary health facility in Ghana

Objective: To explore the caregiving burden of caregivers of children with Sickle Cell Disease (SCD) to provide a foundation for policy interventions. Design: A qualitative study based on convenience sampling. Setting: The Sickle Cell Clinic of the Paediatric Department of a secondary health facility. Participants: Primary caregivers of children with SCD who had been attending the clinic for at least one year were included. Caregivers whose children had another chronic illness were excluded to avoid confounding. Eleven care-givers participated in the study. Interventions: No intervention. Main outcome measures: Caregiving burden among participants caring for children with Sickle Cell Disease (SCD). Results: The four main themes that emerged from the study were the financial, psychological, social, and physical burdens of caregiving. The financial and psychological burdens were noted to have the most substantial impact on their quality of life. Conclusion: Addressing the needs of caregivers of children with SCD goes beyond financial support. Providing psychological interventions is crucial to alleviating the emotional burden of the disease on caregivers. The study revealed the multifaceted challenges faced by caregivers; hence, the need for a holistic approach to support families affected by SCD in Ghana. Funding: None declared.