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'Double or quits': perceptions and management of organ transplantation by adults with cystic fibrosis

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posted on 2023-06-08, 20:51 authored by Karen LowtonKaren Lowton
Medical sociologists have often considered lay perceptions of the risks of medical interventions, yet in many empirical studies respondents are people who are not likely to be exposed to a particular intervention. Furthermore, it has been well documented that risk perceptions may change over time and with diminishing health state. This paper explores perceptions and management of the risks of organ transplantation amongst adults with cystic fibrosis (CF), the most common autosomal recessive genetic disease in the UK. Although the focus of medical research is now on providing gene replacement therapy to this group, transplantation is currently the last treatment that an adult with CF can be offered when all other treatment has failed to maintain their health. Thirty-one respondents with varying degrees of health state from a specialist CF centre were interviewed as part of a larger study concerning perceptions of health and risks of treatment. Interviews were audiotaped, transcribed and analysed using ATLAS-ti. During analysis respondents' transcripts were divided into two groups: firstly those who did not anticipate needing a transplant in the near future (if at all) and secondly those who were currently being considered for transplantation, on the transplant list, or who had already received donor organs. The paper focuses on themes arising from interview transcripts and finds that although the focus of risk differs between the two groups, the influence of luck is perceived as strong for both groups and emotion work features heavily in those undergoing the transplant process. Contrary to previous research, fears of inheriting donor characteristics are not found amongst adults with CF, but rather body components are commodified when talking of both giving and receiving organs. © 2002 Elsevier Science Ltd. All rights reserved.

History

Publication status

  • Published

File Version

  • Accepted version

Journal

Social Science and Medicine

ISSN

0277-9536

Publisher

Elsevier

Issue

6

Volume

56

Page range

1355-1367

Department affiliated with

  • Sociology and Criminology Publications

Full text available

  • Yes

Peer reviewed?

  • Yes

Legacy Posted Date

2015-05-20

First Open Access (FOA) Date

2016-03-22

First Compliant Deposit (FCD) Date

2015-05-19

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