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

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.

Stigma Associated With Sickle Cell Disease in Kumasi, Ghana.

INTRODUCTION: People with sickle cell disease (SCD) often face stigmatization in Ghana and elsewhere in Africa. Research is needed to understand whether it is necessary to design an SCD stigma reduction program in the Ghanaian setting. The aim of this study was to explore the perception of stigmatization for adults with SCD in Kumasi, Ghana. METHODOLOGY: Using in-depth qualitative interviews, researchers conducted a phenomenological study to investigate the perception of stigmatization for people with SCD in Kumasi, Ghana. Snowball and purposive sampling was used to identify the participants. RESULTS: Participants (n = 12) were mostly female, Akan, and Christian. Researchers categorized three main themes: (a) Feelings of social isolation, (b) Fear of disclosure, and (c) Bullying about physical appearance. DISCUSSION: The findings highlight the need to develop effective strategies to counteract stigma. Transcultural health care providers can implement stigma reduction interventions that might be applicable throughout Africa where findings are likely to resonate with patients with SCD.