ArticleEthnicity & health
'All her children are born that way': gendered experiences of stigma in families affected by sickle cell disorder in rural Kenya.
Article in Ethnicity & health. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 59 papers.
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Who cites it
59 citing papers in PubMed, 112 citations in OpenAlex.
- Lived experiences of parents of children with genetic and neurodevelopmental disorders accessing genetic services in Rwanda: barriers and enablers.Journal of community genetics · 2026Article
- Prevalence of Depression and Suicidality Among Children and Adolescents with Sickle Cell Anaemia in Eastern Uganda.Research square · 2026Article
- Experiences of stigmatization and its impacts among individuals living with hereditary diseases and family members in Portugal: an exploratory study.Journal of community genetics · 2025Article
- Exploring the quality of life of caregivers of children with sickle cell disease in a secondary health facility in Ghana.Ghana medical journal · 2025Article
- Barriers, facilitators and recommendations for the implementation of newborn sickle cell screening program in tribal communities: findings from a qualitative multicentric study in India.The Lancet regional health. Southeast Asia · 2025Article
- Indian Council of Medical Research (ICMR)-Sickle cell disease (SCD) Stigma Scale for India (ISSSI): development and psychometrics.The Lancet regional health. Southeast Asia · 2025Article
- High acceptability of newborn screening for sickle cell disease among post-natal mothers in Western Kenya.PloS one · 2025Article
- Hidden stories of caregivers with children living with sickle cell disease in Uganda: Experiences, coping strategies and outcomes.PloS one · 2025Article
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- The intersection of sickle cell disease, stigma, and pain in Africa.Hematology. American Society of Hematology. Education Program · 2024Review
- Article
- A qualitative study on stigma experienced by young adults living with sickle cell disease in Accra, Ghana.International health · 2023Article
- Global, regional, and national prevalence and mortality burden of sickle cell disease, 2000-2021: a systematic analysis from the Global Burden of Disease Study 2021.The Lancet. Haematology · 2023Article
- Access to healthcare for people with sickle cell disease: Views of healthcare professionals on policies and practices.Molecular genetics & genomic medicine · 2023Article
- Expecting more: the case for incorporating fertility services into comprehensive sickle cell disease care.The Lancet. Haematology · 2023Review
- Caregivers' Perspective on the Psychological Burden of Living with Children Affected by Sickle Cell Disease in Kinshasa, the Democratic Republic of Congo.Children (Basel, Switzerland) · 2023Article
- Article
- Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers.PLOS global public health · 2023Article
- Penicillin V prophylaxis uptake among children living with sickle cell disease in a specialist sickle cell clinic in Ghana: A cross-sectional study.Health science reports · 2022Article
- Family quality of life for families of children with disabilities in African contexts: a scoping review.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2022Article
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Authors and funding
3 authors at 2 institutions in 2 countries.
Funding
Abstract
objectivesTo explore early experiences of sickle cell disorder (SCD) in families with a young affected child, and the way these experiences influence relations within families. To consider ways in which stigma could be counteracted in health and research programmes in sub Saharan Africa.
designA qualitative study was conducted in a rural area of coastal Kenya including in-depth interviews with 13 families affected by SCD and 12 staff of a local biomedical research progamme. Purposive selection aimed to maximize diversity in socioeconomic and educational status, religion, severity of illness burden and religion amongst families and draw on relevant experience for staffs. Interviews were recorded, transcribed and analysed using the constant comparative method for family interviews and a thematic framework approach for staff data.
resultsLow initial recognition of SCD and its cause were associated with lay practices of surveillance within affected families, contributing to stigmatisation that occurred independently of genetic knowledge. Blame was often placed on mothers, including a risk of blame for misaligned paternity. Mothers are often particularly affected by SCD through the loss of independent livelihoods and their limited options in coping with this chronic condition.
conclusionsMothers of children with SCD were particularly vulnerable to stigmatisation within families, with underlying structural influences that suggest these findings may apply to other similar settings in Africa, and have relevance for other genetic conditions. The potential, nature and form of stigmatisation point to the role of effective communication and SCD management in addressing for blame and discriminative effects of having a child with SCD. The findings highlight the importance of broader social programmes targeting underlying gender and economic inequalities.
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