Stigma Associated With Sickle Cell Disease in Kumasi, Ghana

Buser, Julie M.; Bakari, Ashura; Seidu, Abdul‐Aziz; Paintsil, Vivian; Osei‐Akoto, Alex; Amoah, Rexford; Otoo, Benjamin; Moyer, Cheryl A.

doi:10.1177/10436596211008216

Cited by 7 publications

(5 citation statements)

References 24 publications

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“…Other studies have focused on different regions in Ghana. 23 The five themes that occurred from the analysis indicate that for young people in this context, health-related stigma influences their experiences as persons with SCD in Ghana. Overall, the sources of stigmatisation were multilevel, with interpersonal and institutional stigma identified throughout the data.…”

Section: Discussionmentioning

confidence: 97%

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

Okoibhole

Ebenso

2023

International Health

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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.

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Section: Discussionmentioning

confidence: 97%

“…Further research on this topic is recommended, particularly research on the experiences of young adults in rural regions, as many misconceptions of SCD were described by participants and in previous studies as being from people in those areas. 23 , 26 …”

Section: Discussionmentioning

confidence: 99%

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

Okoibhole

Ebenso

2023

International Health

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“…Some African communities stigmatise individuals with haemoglobinopathies due to cultural beliefs and misconceptions. 51 This stigmatisation often arises from a lack of understanding of the genetic and biological basis of haemoglobinopathies, which can lead to harmful and discriminatory attitudes toward individuals with the condition. 52 Some communities view haemoglobinopathies as a result of witchcraft, curses, or other supernatural causes, leading to fear, ostracism and discrimination.…”

Section: Discussionmentioning

confidence: 99%

Bridging the gaps in newborn screening programmes: Challenges and opportunities to detect haemoglobinopathies in Africa

Twum,

Fosu,

Felder

et al. 2023

African Journal of Laboratory Medicine

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Background: Haemoglobinopathies, including sickle cell disease and β-thalassaemia, are monogenic disorders with a relatively higher prevalence among malaria-endemic areas in Africa. Despite this prevalence, most African countries lack the necessary resources for diagnosing and managing these debilitating conditions.Aim: This study provides a critical review of newborn screening for detecting haemoglobinopathies in Africa, highlighting challenges and proposing strategies for improved diagnosis and management.Methods: A literature search on haemoglobinopathies in Africa was conducted in PubMed, Google Scholar and ScienceDirect, using specific keywords and Boolean operators, including articles published from January 1981 to December 2022.Results: The data show that sickle cell disease is prevalent among populations in Central and West Africa; however, β-thalassaemia is prevalent among people in the northern parts of Africa. Newborn screening pilot initiatives for haemoglobinopathies were being implemented in Angola, Nigeria, Ghana, the Democratic Republic of Congo and the Republic of Benin. The cost of testing, lack of sufficient and accessible medical records, and inadequacy in healthcare infrastructure pose significant challenges in bridging the gaps in newborn screening. Furthermore, the stigmatisation and lack of awareness of haemoglobinopathies and access to newborn screening programmes pose additional challenges.Conclusion: This review highlights the challenges associated with haemoglobinopathy testing, effective strategies for mitigating these challenges, and future perspectives for expanding efforts toward detecting and managing these disorders across Africa. Providing affordable diagnostic tools, mobile clinics, government subsidies, education campaigns, and the implementation of electronic medical records systems could help bridge the gaps in newborn screening in Africa.What this study adds: The study presents a comprehensive view of newborn screening of haemoglobinopathies in Africa, provides a detailed outline of the challenges faced by newborn screening for haemoglobinopathies in Africa, and offers strategies for better diagnosis and care.

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“…Stigma in Ghana is not unique to cancer but is seen in a multitude of other diseases. For example, stigma has been documented in communicable diseases such as Human Immunodeficiency Virus (HIV) [ 52 – 54 ], Tuberculosis [ 55 ], Covid-19 [ 56 ], Ebola [ 57 ] and Hepatitis [ 58 ], as well as non-communicable diseases such as sickle cell disease, [ 59 ] diabetes, [ 60 ] and mental illness [ 61 ]. Stigmatised conditions can be unified by their commonalities in dimensions: aesthetics, concealability, disease course, disruptiveness, origin (whether it is controllable), peril (whether it is curable) [ 62 ].…”

Section: What Contextual Factors Contribute To the Cancer Burden In G...mentioning

confidence: 99%

A critical review and analysis of the context, current burden, and application of policy to improve cancer equity in Ghana

Tuck,

Cooper,

Aryeetey

et al. 2023

Int J Equity Health

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Background Cancer causes a major disease burden worldwide. This is increasingly being realised in low and middle-income countries, which account disproportionately for preventable cancer deaths. Despite the World Health Organization calling for governments to develop policies to address this and alleviate cancer inequality, numerous challenges in executing effective cancer policies remain, which require consideration of the country-specific context. As this has not yet been considered in Ghana, the aim of this review was to bring together and critique the social-environmental, health policy and system factors to identifying opportunities for future health policies to reduce cancer burden in the Ghanian context. A critical policy-focused review was conducted to bring together and critique the current health systems context relating to cancer in Ghana, considering the unmet policy need, health system and social factors contributing to the burden and policy advances related to cancer. Conclusion The findings highlight the changing burden of cancer in Ghana and the contextual factors within the socio-ecosystem that contribute to this. Policies around expanding access to and coverage of services, as well as the harmonization with medical pluralism have potential to improve outcomes and increase equity but their implementation and robust data to monitor their impact pose significant barriers.

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Stigma Associated With Sickle Cell Disease in Kumasi, Ghana

Cited by 7 publications

References 24 publications

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

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

Bridging the gaps in newborn screening programmes: Challenges and opportunities to detect haemoglobinopathies in Africa

A critical review and analysis of the context, current burden, and application of policy to improve cancer equity in Ghana

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