The social implications of thalassaemia major among Muslims of Pakistani origin: family experience and service delivery

This thesis is about the experience of Muslim British Pakistani families coping with thalassaemia (a chronic, inherited blood disorder) and the implications for service delivery. Its central concern is to illustrate that simplistic and culturally-biased assumptions are an unsatisfactory base on which to devise health service delivery for minority populations, and that with careful study it is possible to deliver culturally sensitive and appropriate services. The thesis is written in four parts. The first part contains the research methods and the clinical aspects of thalassaemia. It also provides an introduction to the families in the study. The British Pakistani population is considered in the context of migration to Britain, which has created a plural society requiring adaptations to services to meet the diverse health needs of the different ethnic minorities. The second part deals with the socio-economic and cultural background of British Pakistanis in Pakistan: this (is) crucial to an understanding of their present situation. Family dynamics, marriage patterns and decision-making processes are explored, as is the central role of religion and kinship networks in the lives of British Pakistanis. It also examines their settlement process and present living conditions and illustrates how the social structures prevalent in Pakistan have been re-established in England, albeit in a modified form. The third part documents, using case studies, the experiences of British Pakistani families with thalassaemic children. These are analysed to highlight deficiencies in health service delivery and areas where cultural misconceptions exist. These areas require attention to provide an effective genetic counselling service for this population. The final part examines the social and clinical implications of consanguineous marriage. It gives the results of a study showing increased frequency of consanguineous marriage among British Pakistanis than among Pakistanis in Pakistan. It then illustrates how kinship networks within communities practising this marriage pattern provide an opportunity to offer a genetic counselling service in a unique way, by making positive use of the practice. This proposed approach applies not only to thalassaemia but also to other inherited diseases