Caregiver Perception of Sickle Cell Disease Stigma in Ghana: An Ecological Approach

Abstract

Introduction: Sickle cell disease (SCD) stigma is a major community health issue. The challenges of caring for someone with SCD can be overwhelming. We explored stigma and related factors for caregivers of pediatric patients with SCD in Kumasi, Ghana.

Method: Guided by the Ecological Systems Theory, we used in-depth interviews with a semistructured guide to learn about the perception of stigmatization for Ghanaian caregivers of patients with SCD.

Results: Overall, participants were knowledgeable about SCD. We identified three themes, including (1) blame for SCD, (2) public misconception about SCD, and (3) shame for the financial burden of SCD.

Discussion: Findings demonstrate the need to design an SCD stigma reduction program for caregivers, families, and the community. Providers need to consider SCD stigma and interaction with multiple ecological levels, including the family, community, health care system, culture, and health policy in Ghana. Findings can be used as a catalyst to explore the reduction of stigmatization in other sub-Saharan countries.

Keywords: Ghana; Sickle cell disease; caregivers; ecological systems theory; stigma.