ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2024
Caught between pity, explicit bias, and discrimination: a qualitative study on the impact of stigma on the quality of life of persons living with sickle cell disease in three African countries.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
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Who cites it
14 citing papers in PubMed, 1 synthesis or guideline pooled it, 19 citations in OpenAlex.
- Clinical and Genetic Predictors of Sickle Cell Nephropathy: A Global Systematic Review.Omics : a journal of integrative biology · 2025Pooled it
- Adherence to ready-to-use therapeutic food in older children with sickle cell anaemia and severe acute malnutrition: a mixed-methods study in a low-income setting.BMJ global health · 2025Trial
- Creative and Adaptive Solutions for Early Diagnosis of Sickle Cell Disease in Sub-Saharan Africa.American journal of hematology · 2026Review
- Barriers to sickle cell disease care: a biopsychosocial analysis mapped to the standards of care guidelines by the sickle pan African research consortium.Journal of public health (Oxford, England) · 2026Article
- Sickle cell disease and maternity care: A qualitative synthesis of women's and health providers experiences.PloS one · 2026Article
- Sickle cell disease knowledge, attitudes, and management practices among nurses in northern Ghana: a cross-sectional study.Frontiers in public health · 2026Article
- "I just want to be normal": Psychosocial experiences of adolescents and young adults with sickle cell disease in Kenya.Global mental health (Cambridge, England) · 2026Article
- Aging with Thalassemia and Sickle Cell Disease: A Gerontological Model of Accelerated Multimorbidity and Function-Centered Care Beyond Midlife.Mediterranean journal of hematology and infectious diseases · 2026Review
- Exploring the Lived Experiences of Adults With Sickle Cell Disease in Nigeria Using van Manen's Phenomenological Approach.Public health challenges · 2025Article
- From misconceptions to empowerment: assessing health and genetic literacy on thalassemia among Tunisian secondary school students.BMC public health · 2025Article
- Genetic self-counselors in Tunisia: the role of health education in hemoglobinopathies prevention among high school students.Orphanet journal of rare diseases · 2025Article
- The intersection of sickle cell disease, stigma, and pain in Africa.Hematology. American Society of Hematology. Education Program · 2024Review
- Perceptions and preferences for genetic testing for sickle cell disease or trait: a qualitative study in Cameroon, Ghana and Tanzania.European journal of human genetics : EJHG · 2024Article
- Sickle cell disease in Cameroon: Taking out the "neglect" and highlighting key opportunities for sustainable control.PLOS global public health · 2024Article
Corrections and comments
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Authors and funding
8 authors at 6 institutions in 5 countries.
Funding
Abstract
purposeSickle cell disease (SCD) is an inherited blood disorder characterized by unpredictable episodes of acute pain and numerous health complications. Individuals with SCD often face stigma from the public, including perceptions that they are lazy or weak tending to exaggerate their pain crisis, which can profoundly impact their quality of life (QoL).
methodsIn a qualitative phenomenological study conducted in Cameroon, Ghana, and Tanzania, we explored stakeholders' perceptions of SCD-related stigma using three analytical frameworks: Bronfenbrenner's Ecological Systems Theory; The Health Stigma and Discriminatory Framework; and A Public Health Framework for Reducing Stigma.
resultsThe study reveals that SCD-related stigma is marked by prejudice, negative labelling and social discrimination, with derogatory terms such as sickler, ogbanje (one who comes and goes), sika besa (money will finish), ene mewu (I can die today, I can die tomorrow), vampire (one who consumes human blood), and Efiewura (landlord-of the hospital), commonly used to refer to individuals living with SCD. Drivers of stigma include frequent crises and hospitalizations, distinct physical features of individuals living with SCD, cultural misconceptions about SCD and its association with early mortality. Proposed strategies for mitigating stigma include public health education campaigns about SCD, integrating SCD into school curricula, healthcare worker training and community engagement.
conclusionThe results highlight the importance of challenging stigmatizing narratives on SCD and recognizing that stigmatization represents a social injustice that significantly diminishes the QoL of individuals living with SCD.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.