France-Dawson, Merry.; (1994) The social context of health care for minority ethnic groups diagnosed as having sickle cell conditions. Doctoral thesis , Institute of Education, University of London.

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Abstract

Health care needs are socially defined and care provision is dependent on these definitions. There is generally poor consideration of the needs of people with genetically determined conditions, especially when they are perceived to be rare. In Britain, sickle cell conditions mainly affect people of African and Caribbean ancestry. Sickle cell is considered to be rare by many health professionals despite the fact that 1 in 10 people from these ethnic groups carry the gene, and that each year more than 200 babies are born with serious sickle cell states in London alone. This study was conducted in two parts. Part 1 examines how much people who with one or more sickle cell genes know about the conditions. It investigates their experiences of and perceived need for health care and their attitudes regarding self-care. The study also examines whether clients have received genetic and other counselling, understood the information provided and whether they were encouraged to use positive health strategies to avoid ill health. Part 2 examines how the socialisation and education of nurses and health visitors may have affected their knowledge of sickle cell conditions. It assesses their experience of caring for people with the conditions and the contributions they could make to patient/client care. Statutory and voluntary sickle cell counsellors were also interviewed regarding the service they provided, their satisfaction with that service and their perceived needs for improving such services. The socialisation of individuals is discussed to show how the different racial groups (ie. largely carers versus clients) involved in the study, develop perceptions of each other, and how this could contribute to misconceptions on both sides as well as to the overall health problems of people with sickle cell conditions. Social environments (ie. housing, employment, education, racism and so on) are also discussed.

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