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Empowerment and Stigmatization: Patient Organizations, Gynecological Cancer and Changing Identities

Conference contribution
Authors Lisa Lindén
Published in Medical sociology (Working Group Number: 13), Sociologidagarna. Lund: 7-9 March, 2018
Publication year 2018
Published at Department of Sociology and Work Science
Language en
Keywords patient organizations, gynecological cancer, science and technology studies, medical sociology, gender, sexuality, ethnography
Subject categories Gender Studies, Technology and social change, Sociology (excluding Social Work, Social Psychology and Social Anthropology)


Gynecological cancer (GC) is easily seen as a shameful low-status cancer and is often associated with stigmatizing ideas about sexual lifestyle. This stands in contrast to a prevailing cancer survivorship discourse of the empowered, optimistic and heroic cancer survivor. Patient organizations (POs) work to change how GC is perceived by improving support for involved patients and their relatives, and by influencing research, media and policy. In this presentation, I present an ongoing online and offline ethnographic study on GC POs in Sweden and in the UK. The project’s aim is to gain knowledge about how GC POs challenge and/or reproduce ideas concerning what it means to be a GC patient and how they enact, negotiate and represent their cause (what they are fighting for). This focus enables insights on POs’ individual and organizational identity formation processes, including possible cross-national differences and gender and sexual politics involved. To gain knowledge about how POs work, POs’ activities are observed, key figures are interviewed and information material is analyzed. By combining cancer survivorship studies and PO studies from medical sociology and STS, the project hopes to push a scholarly discussion of cancer patient identity beyond a dichotomy between empowered survivors and stigmatized victims.

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