The social meanings and implications of the Beta-thalassaemia trait among South Asian women in England.
The AIMS of this study are to: (1) To explore how South Asian women (those who have ethnic origins in India, Pakistan or Bangladesh) make sense of the beta-thalassaemia trait in the context of their everyday experiences and, in turn, how these experiences impact their identities. (2) To ascertain the extent of the assimilation and management of genetic information by women of South Asian origin. (3) To contribute towards the debate on the provision of culturally sensitive screening policies and the dissemination of genetic information and to analyse ways in which such policies can be improved. STUDY DESIGN: A qualitative modified grounded theory study comprising of semi-structured interviews conducted in English, Urdu, Punjabi, Sylheti and Hindi. Five geographical sites were selected for the study: three in London, one in the West Midlands and a further site in Northern England based on their high density of South Asian populations as indicated by the 1991 UK Census data. Purposive sampling ensured diversity in participant backgrounds (e.g. socio-economic, religion, marital, child’s health and age). Interviews were translated and transcribed by the researcher and the computer software NVivo was used to analyse the data. SAMPLE: Forty-one South Asian women who had been diagnosed with the beta-thalassaemia trait and two haemoglobinopathy nurse specialists who undertook the role of counselling. FINDINGS: The empirical findings revealed the importance of identity, faith, culture and diversity in how women managed the knowledge of the beta thalassaemia trait. Common perceptions held by health service staff of South Asian women being homogenous in attitudes to prenatal diagnosis and termination; as subjugated to their husbands in decision-making; and as fatalistic because of their religious convictions were shown by this study to be misconceived. South Asian women actively managed their trait within the context of their everyday socio-cultural and religious experiences. For example, liberal notions of ‘informed choice’ were found not to take account of the institutional importance of motherhood for South Asian women living in the UK. Their experience of beta-thalassaemia trait was also mediated through relations of power, both within kinship networks and between family and health professionals. In making sense of the genetic identities accorded to them by health professionals, they also re-interpreted, negotiated and contested the ethos of the screening and prenatal testing processes. The participants used power and positionality to relocate their sense of genetic responsibility away from the self onto others, employing geographical and cultural explanations to justify their apparent inaction in the face of biomedical expectations and assumptions. CONCLUSION: Women acted according to their perceptions of how others would perceive them if their trait were to be disclosed and as a result they presented and constructed the trait in order to preserve the ‘self’ within the context of their everyday life experiences which has implications for the delivery of appropriately targeted screening and health services.
- PhD