TY  - UNPB
TI  - The social implications of thalassaemia major among Muslims of Pakistani origin: family experience and service delivery
UR  - https://discovery.ucl.ac.uk/id/eprint/1317782/
AV  - public
EP  - 311
N1  - Thesis digitised by British Library EThOS
ID  - discovery1317782
M1  - Doctoral
A1  - Darr, A.R.
PB  - University of London
Y1  - 1991///
N2  - 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.
ER  -