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First World-Wide Initiative on Social Studies of Haemoglobinopathies (WISSH) Conference, SICKLE CELL: THE NEXT 100 YEARS, De Montfort University, Leicester, UK April 14th-16th 2010.

A multi-disciplinary conference of social scientists met at the first international conference to focus on social research relating to sickle cell and thalassaemia, held at De Montfort University, Leicester, UK, April 14th-16th, 2010. The conference aimed to draw attention to the importance of social science research to the global effort of improving the lives of those living with haemoglobin disorders.  The conference was attended by  80 delegates from ten countries and included psychologists, sociologists, nurses, therapists, counsellors, social workers, health economists, social policy analysts, experts from medical humanities, and public health, as well as members of sickle cell NGOs.

In the opening plenary, Professor Kwaku Ohene-Frempong re-iterated the case for sickle cell disease to have a high public health profile in Africa, where it has had difficulty successfully competing for funds with diseases such as malaria, TB or HIV/AIDS. The under-five death rate from sickle cell disease (SCD) in rural Africa in the absence of medical interventions is as high as 98% and SCD is estimated to cause up to 20% of all deaths among children in West Africa in the most vulnerable ages. In contrast, Professor Ohene-Frempong cited a 95% under-fives survival rate among those successfully enrolled in the pilot newborn screening programme in Ghana.

In another plenary address, Professor Karl Atkin, a sociologist from the University of York, reviewed his extensive work on social policy and SCD and beta-thalassaemia major in the UK. Young people living with sickle cell or thalassaemia are generally very resilient in negotiating their lives. Their experience is not reducible to their condition, which is how they are often viewed by clinicians.

The third and final plenary speaker, Dr Jemima Dennis-Antwi of the International Confederation of Midwives in Ghana, spoke about her research on the perspectives of Ghanaian fathers of children with SCD detected through newborn screening. Contrary to expectations that families would stigmatize such children through associating them with the supernatural the fathers she interviewed stayed and supported their children with SCD. Their ongoing practical experiences of everyday caring for their child with SCD, sharing positive practical experience with other parents at support groups, and finding ways in resource-limited contexts of arranging basic health care counteracted feelings of despair.

In sessional papers Charles Jonassaint, PhD (Johns Hopkins University) reported that African-Americans who scored highly in terms of identifying with their African-American “racial” identity were more likely to be psychologically resilient with respect to their SCD and to have lower health care utilization. His paper was voted the best at the conference. Among other young researchers, Dr. Mary Catherine Beach (Johns Hopkins University) demonstrated the power of psychological research to change health care practice through presentation of an eight-minute educational DVD, professionally scripted, acted and produced, which was reported to have had impressive effects in reducing stereotyping of SCD patients by health care providers, diminishing the likelihood that people with SCD were seen as drug-seeking, manipulative or likely to exaggerate pain.  Melissa Creary of the US Centers for Disease Control and Prevention (CDC) drew attention to the types of ongoing misrepresentation of sickle cell trait in the media and the importance of educating journalists as part of public health strategies. Norris Igbineweka (Nigeria) adapted classic anthropology concepts of rites of passage, to throw new light on transitions from adolescence to adulthood in sickle cell. Gina Jae (USA) examined the social, ethical and financial contexts that together inform views of the conception of donor siblings to treat a child with SCD.

Psychology featured strongly in the conference sessions.  Trust, respect and mutual perceptions mediate the relationship between health care providers and people living with SCD (James Elander, UK); Fiona Ulph (UK) addressed familial influences on sickle cell screening; Nicky Thomas (UK) drew upon concepts of both felt and enacted stigma in connection with sickle cell. Anne-Marie Plass and colleagues (Netherlands/ Indonesia) and Bob Yamashita (San Marcos University) in their presentations on social aspects of thalassaemia, reminded conference attendees that however much sickle cell is a poor relation of the research world, thalassaemia is even more neglected, especially in social research.  A number of the conference papers were later developed to contribute to a special edition of the international journal Ethnicity and Health

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