Macquarie University
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Qualitatively Exploring Challenges in Treatment Decision-Making for Endometriosis

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posted on 2024-05-17, 00:54 authored by Lynda Fallon

Endometriosis is a chronic systemic inflammatory disease with often-debilitating symptoms. It has no cure, and research reports widespread dissatisfaction among people living with endometriosis (PLWE) about treatment management. In the absence of a gold-standard treatment, the best symptom management approach is highly dependent on individual patient preferences and values, making shared decision-making (SDM) vital. Patient decision aids (PtDAs) are interventions which promote patient decision-making and SDM, but there is no comprehensive PtDA for endometriosis, and research on the decisional support needs of individuals with this condition is sparse. This qualitative research explored the facilitators, challenges and support needs of treatment decision-making by PLWE, canvassing the perspectives of both patients and healthcare professionals (HPs). Transcribed data from online focus groups of Australian adults with endometriosis (N = 41), and interviews with Australian HPs specialising in endometriosis care (N = 13) were thematically analysed using the template approach and verified using multiple coders. Both groups identified challenges in: accessing valid and trustworthy information about endometriosis and its treatments; the need for PLWE to self-advocate; a mismatch in priorities between some PLWE and HPs; and maintaining psychological health despite the emotional toll of decision-making. Novel findings included the heavy emphasis individuals with endometriosis placed on family needs when choosing treatments, and maladaptive levels of hope potentially clouding PLWE decision-making. The combined findings highlight that people living with endometriosis face difficulties in assessing and choosing treatments, indicating that a comprehensive PtDA intervention could support and facilitate decision-making and SDM in endometriosis symptom management.


Table of Contents

Chapter 1. Thesis Background and Overview -- Chapter 2. Perceived Challenges in Treatment Decision-Making for Endometriosis – People Living With Endometriosis Perspectives -- Chapter 3. Perceived Challenges in Treatment Decision-Making for Endometriosis – Healthcare Professional Perspectives -- Chapter 4. Critical Analysis and Thesis Conclusion -- Appendices -- List of Tables

Awarding Institution

Macquarie University

Degree Type

Thesis MRes


Master of Research

Department, Centre or School

School of Psychological Sciences

Year of Award


Principal Supervisor

Kerry Sherman

Additional Supervisor 1

Annie Lau


Copyright: The Author Copyright disclaimer:




210 pages

Former Identifiers

AMIS ID: 350235

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