A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana

Abstract

Background Sickle cell disease (SCD) describes a group of multisystem, genetic and stigmatising blood conditions that are prevalent in sub-Saharan Africa. Health-related stigma is a negative experience or adverse social judgement about a group based on an enduring feature conferred by a particular health problem. Literature shows that stigmatisation is experienced by people with SCD with negative implications on their lives. This study investigated self-reported views and lived experiences of young adults in Accra, Ghana, regarding SCD-related stigma and its impact on their lives. Methods Data were collected from 19 males and females with SCD using semi-structured individual interviews and focus group discussions. Transcripts were analysed using Braun and Clark's framework for thematic analysis. Results Five themes were identified: exclusion; status loss; SCD misconceptions; internalised stigma; and stigma and health outcomes. Overall, interpersonal and institutional levels of stigma were evident throughout the data with a lack of public education, limited specialist care and religion acting as determinants of SCD-related stigma. Conclusions Stigma has detrimental consequences for young adults with SCD. Multilevel stigmatisation of SCD at interpersonal and institutional levels should be addressed through multipronged approaches including increased public education, investment in specialist healthcare and collaboration with socioreligious institutions. Further research is needed to investigate the experiences of young adults in rural Ghana.

Sickle Cell Disease Awareness and Perception Among Christian Religious Leaders in Accra Metropolis: A Qualitative Study

“…The condition causes acute and chronic debilitating pain for people living with SCD (PLWSCD), especially during vaso-occlusive crises. Severe crisis of SCD contributes to recurrent disruption in academic work for school-going individuals, absenteeism at the workplace for workers, poor quality of life, caregiver pressure, patient and family stigmatization, the nancial burden on patients and families, and eventually death (Buser et al, 2021;Kato et al, 2018;Okoibhole & Ebenso, 2023;Ampomah, et al, 2022).…”

Needs assessment in adults and parents of children living with sickle cell disease in Jamaica

“…This happens in both high and low resourced settings and even in places where PLwSCD are not part of a visible minority, such as Jamaica and Ghana. 9,15,16 Tailored public education programs may address this issue specifically.…”