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dc.contributor.authorDennis-Antwi, Jemimaen
dc.contributor.authorCulley, Lorraineen
dc.contributor.authorHiles, Daviden
dc.contributor.authorDyson, Simonen
dc.identifier.citationDennis-Antwi, JA; Culley, L; Hiles, D and Dyson, SM (2011) “I can die today, I can die tomorrow”: Lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition. In: Dyson, SM and Atkin, K [eds] (2012) Genetics and Global Public Health: Sickle Cell and Thalassaemia Routledge, pp.158-174.en
dc.description.abstractObjective To describe the lay meanings of sickle cell disease in the Ashanti region of Ghana. Design Depth interviews with 31 fathers of people with sickle cell disease; a focus group with health professionals associated with the new-born sickle cell screening programme, and a focus group with mothers of children with sickle cell disease. Results Whilst there are discourses that associate sickle cell with early or recurrent death, with supernatural undermining of family well-being, and with economic challenges in purchasing medical care, other discourses that value children and other family practices that resist stigma are also in evidence. Conclusion Lay perspectives on sickle cell disease are constructed in the contexts of enduring culture (the high value placed on children); changing culture (medicine and research as available alternative discourses to supernatural ones); altered material circumstances (new-born screening producing cohorts of children with sickle cell disease); changing political situations (insurance-based treatment); enhanced family resources (the experience of a cohort of young people with sickle cell disease). Above all the praxis of successfully caring for a child with sickle cell disease, and the political experience of sharing that praxis, stands in opposition to discourses of death and helps parents resist stigma and despair.en
dc.publisherRoutledge (Taylor & Francis)en
dc.subjectsickle cellen
dc.subjectchronic illnessen
dc.subjectlay perspectivesen
dc.subjectnewborn screeningen
dc.title“I can die today, I can die tomorrow”: Lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition.en
dc.typeBook chapteren
dc.researchgroupUnit for the Social Study of Thalassaemia and Sickle Cell
dc.researchgroupMary Seacole Research Centre
dc.researchgroupHealth Policy Research Unit
dc.researchinstituteInstitute for Allied Health Sciences Researchen
dc.researchinstituteCentre for Reproduction Research (CRR)en

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