“It Wasn’t Until I Took the Reins and Said….” Power and Advocacy in Canadian Women’s Narratives of Polycystic Ovary Syndrome Diagnosis and Treatment*

Abstract

Gaps in health-care services for women with polycystic ovary syndrome (PCOS) are not isolated incidents. They are systemic and disadvantage women. In this study, we explored the juxtaposition of power and agency in diagnosis narratives collected from 72 Canadian women diagnosed with PCOS. Using Braun and Clarke’s inductive codebook thematic analysis, three themes of power were constructed: physicians as gatekeepers, oppression as intersectional, and antagonistic provider communications, leading to emotional and cognitive impacts. Themes of agency centered on education, active resistance strategies, and collective action. Implications for these findings are discussed in relation to women’s health equity.

Keywords:

• Polycystic ovary syndrome
• health-care delivery
• health equity
• critical feminist inquiry
• diagnosis narratives
• power
• advocacy

Acknowledgments

We wish to thank Chantal Vien, Carli Cristofari, Batoul Awada, Rachel Plowman, Zoha Salam, Amanda Bailey, Sanaya Dhabhar, Christine Elgie, and Nora McVinnie for their assistance in interviewing participants. We would also like to thank Chelsea Reaume for her help with transcription. We also wish to express our gratitude to our participants for sharing their personal PCOS diagnosis experiences with us.

Disclosure statement

The author has no potential conflicts of interest to disclose. The University of Windsor had any involvement in study design, in the collection, analysis or interpretation of data, in writing the report or in the decision to submit this article for publication.

Additional information

Funding

This work was supported by the University of Windsor with an Internal Women’s Grant awarded to the first author [eRSO #33937, 2017-2019].