“I can die today, I can die tomorrow”: Lay perceptions of sickle cell disease in Kumasi, Ghana at a point of transition.

Date

2012-01

Advisors

Journal Title

Journal ISSN

ISSN

DOI

Volume Title

Publisher

Routledge (Taylor & Francis)

Type

Book chapter

Peer reviewed

Yes

Abstract

Objective

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.

Description

Keywords

sickle cell, chronic illness, genetics, lay perspectives, culture, newborn screening, stigma, Ashanti, Ghana

Citation

Dennis-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.

Rights

Research Institute

Institute for Allied Health Sciences Research
Centre for Reproduction Research (CRR)