The social meanings of a child with sickle cell disease in Ghana : fathers' reactions and perspectives
Sickle cell disease (SCD) is a chronic inherited blood disorder affecting nearly a quarter of a million infants born in Africa each year. Historically it was estimated that over 95% of babies born with SCD in rural Africa died before 5 years old. In Kumasi, the second city of Ghana, where 2% of all babies born have SCD, the newborn screening programme has a survival to five years old of over 95%. Extensive information is available on the clinical aspects of SCD, but there is limited documentation on its social aspects. Existing literature on SCD is focussed on the US and UK experiences, and takes a predominantly medical perspective. US and UK sociological literature on SCD suggests the importance of the social context within which chronic illness is negotiated, that the impact of SCD is mediated through the experience of racism against minority ethnic groups, and the quality of access to good health services, and socio-economic position within a relatively wealthy overall economy. African social literature on SCD on the other hand has concentrated on anthropologically interesting lay meanings of SCD. Literature on caring for children with chronic illness has focussed on the role of mothers, with little attention to the fathers’ experiences. The aim of this study was to produce an in-depth social analysis of fathers’ perceptions of SCD, their feelings about the birth of a child with SCD, their role or lack of it in the care of such children and their views for improved care. Thirty-one in-depth, taped-recorded interviews were conducted with fathers of children with SCD. This data was supplemented by focus groups with nine mothers and seven health professionals. Interviews were conducted in the local Ghanaian language of Twi, and were translated and transcribed by the researcher into English for thematic analysis. Overall, the thesis emphasises that the experiences of fathers of children with SCD in Ghana can best be explained by a sociological analysis that incorporates an understanding of their expressed perceptions of the challenges of bringing up a child with SCD within a wider socio-cultural context greatly influenced by factors such as the formal and informal stages of courtship and marriage on negotiations of responsibility for children; the integral cultural imperative to bear children; negotiating gender roles in the household division of labour; the structural limitations imposed by a fee-for service treatment for SCD in Ghana; the widespread stigmatisation of SCD as a ‘bought’ disease; the construction of an understanding of SCD through a supernatural worldview; and the role of organised religion in shaping conceptions of marriage, sexual relations and attitudes to SCD and prenatal diagnosis. The evidence from this study carries considerable implications for the development of SCD services in Ghana, and indeed throughout Africa, suggesting that the socio-cultural factors affecting fathers’ perceptions of SCD should also inform health and social policies for SCD in areas including health care worker education, diagnostic and care services for patients and families, genetic counselling, health education and employment.