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Patient Education vs. Patient Experiences of Self-advocacy: Changing the Discourse to Support Cancer Survivors

Abstract

A growing emphasis on patient self-advocacy has emerged in the public discourse on cancer survivorship. This discourse shapes patients’ conceptualizations about self-advocacy and in turn influences their health care attitudes and behaviors. The purpose of this discourse analysis is to explore the language of self-advocacy by comparing a published self-advocacy guide with the lived experiences of women with ovarian cancer. Data sources include (1) a self-advocacy patient education guide published by the National Coalition for Cancer Survivorship and (2) transcripts of focus groups conducted with ovarian cancer survivors. Discourse analysis techniques were used to take a close look at the language used by both to uncover the meaning each group ascribed to self-advocacy. Challenges and inconsistencies were noted between the patient education guide and transcripts including viewing self-advocacy as a skill set to assert one’s needs as opposed to a means by which to preserve a positive attitude and maintain a trusting relationship with health care providers, respectively. Some women saw themselves as self-advocates yet struggled to locate relevant health information and hesitated to upset their relationship with their health care providers. This analysis highlights tensions between the discourses and points to ways in which patient education materials can be adjusted to support cancer survivors in advocating for their needs according to their unique situations and preferences.

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Acknowledgments

We thank Mary Urban and the National Ovarian Cancer Coalition—Pittsburgh for their support of this study and dedication to ovarian cancer survivors. We also thank the National Coalition for Cancer Survivorship for use of their handbook, “Self-Advocacy: A Cancer Survivor’s Handbook” © 2013 National Coalition for Cancer Survivorship, All Rights Reserved. This material may not be reproduced, displayed, modified, or distributed without the express prior written permission of the copyright holder. For permission, contact info@canceradvocacy.org.

Funding

The authors disclosed receipt of the following financial support for the research and/or authorship of this article: Funding was received from the National Institute of Nursing Research (T32 NR011972) and the Judith A. Erlen Endowed Research Fund.

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Correspondence to Teresa L. Hagan.

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Hagan, T.L., Medberry, E. Patient Education vs. Patient Experiences of Self-advocacy: Changing the Discourse to Support Cancer Survivors. J Canc Educ 31, 375–381 (2016). https://doi.org/10.1007/s13187-015-0828-x

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Keywords

  • Self-advocacy
  • Discourse analysis
  • Patient education
  • Cancer