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A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana
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...
Autores principales: | , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629955/ https://www.ncbi.nlm.nih.gov/pubmed/36594277 http://dx.doi.org/10.1093/inthealth/ihac087 |
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author | Okoibhole, Lydia O Ebenso, Bassey |
author_facet | Okoibhole, Lydia O Ebenso, Bassey |
author_sort | Okoibhole, Lydia O |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-10629955 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-106299552023-11-08 A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana Okoibhole, Lydia O Ebenso, Bassey Int Health Original Article 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. Oxford University Press 2023-01-03 /pmc/articles/PMC10629955/ /pubmed/36594277 http://dx.doi.org/10.1093/inthealth/ihac087 Text en © The Author(s) 2023. Published by Oxford University Press on behalf of Royal Society of Tropical Medicine and Hygiene. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted reuse, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Original Article Okoibhole, Lydia O Ebenso, Bassey A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana |
title | A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana |
title_full | A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana |
title_fullStr | A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana |
title_full_unstemmed | A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana |
title_short | A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana |
title_sort | qualitative study on stigma experienced by young adults living with sickle cell disease in accra, ghana |
topic | Original Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10629955/ https://www.ncbi.nlm.nih.gov/pubmed/36594277 http://dx.doi.org/10.1093/inthealth/ihac087 |
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