%0 Thesis
%9 Doctoral
%A Darr, A.R.
%B Genetics
%D 1991
%F discovery:1317782
%I University of London
%P 311
%T The social implications of thalassaemia major among Muslims of Pakistani origin: family experience and service delivery
%U https://discovery.ucl.ac.uk/id/eprint/1317782/
%X 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.
%Z Thesis digitised by British Library EThOS