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


  • Lowton, Karen


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.

Suggested Citation

  • Lowton, Karen, 2003. "'Double or quits': perceptions and management of organ transplantation by adults with cystic fibrosis," Social Science & Medicine, Elsevier, vol. 56(6), pages 1355-1367, March.
  • Handle: RePEc:eee:socmed:v:56:y:2003:i:6:p:1355-1367

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    References listed on IDEAS

    1. Miller, Douglas L. & Paxson, Christina, 2006. "Relative income, race, and mortality," Journal of Health Economics, Elsevier, vol. 25(5), pages 979-1003, September.
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    3. Victor R. Fuchs & Mark B. McClellan & Jonathan S. Skinner, 2004. "Area Differences in Utilization of Medical Care and Mortality among U.S. Elderly," NBER Chapters,in: Perspectives on the Economics of Aging, pages 367-414 National Bureau of Economic Research, Inc.
    4. Christopher J. Ruhm, 2000. "Are Recessions Good for Your Health?," The Quarterly Journal of Economics, Oxford University Press, vol. 115(2), pages 617-650.
    5. Alberto Alesina & Reza Baqir & William Easterly, 1999. "Public Goods and Ethnic Divisions," The Quarterly Journal of Economics, Oxford University Press, vol. 114(4), pages 1243-1284.
    6. Michael Grossman, 1976. "The Correlation between Health and Schooling," NBER Chapters,in: Household Production and Consumption, pages 147-224 National Bureau of Economic Research, Inc.
    7. Jennifer M. Mellor & Jeffrey Milyo, 1999. "Re-Examining the Evidence of an Ecological Association between Income Inequality and Health," Discussion Papers Series, Department of Economics, Tufts University 9922, Department of Economics, Tufts University.
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    Cited by:

    1. Lowton, Karen, 2005. "Trials and tribulations: Understanding motivations for clinical research participation amongst adults with cystic fibrosis," Social Science & Medicine, Elsevier, vol. 61(8), pages 1854-1865, October.


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