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Communicating endometriosis: health professionals' experiences

Endometriosis is a painful condition affecting 1.6 million women in the UK and this study explores the perspectives of health professionals when providing care and communicating the symptoms and treatments of endometriosis to patients. 

Endometriosis project large

Researchers 

Research background

Endometriosis, or ‘endo’, affects 1.6 million women in the UK; comparable to the number of women living with diabetes, yet there is considerably less awareness. Poor patient-practitioner communication around endo symptoms (including the stigmatised topics of painful intercourse and heavy menstruation) is a barrier to a timely diagnosis. This study would be the first UK-based research focusing on health professionals’ experiences of diagnosing and treating endo, and the first to adopt an interdisciplinary approach (combining sociology of health and critical linguistics) to do so.

Research aims 

This study explores health professionals’ perspectives on providing care for and communicating with patients with (suspected) endometriosis.

Results

  • Two to three publications in peer-reviewed journals in interdisciplinary social health and/or linguistics journals (e.g. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, Discourse and Communication and/or Human Reproduction
  • Two substantive funding applications: one to the NIHR’s Research for Patient Benefit programme (‘Educating Endo’ a programme for patients, practitioners and the public) and to one to Welcome Trust  (to create a consortium of social endo research and identify and generate needed endo research)  
  • A report of progress against milestones to the HELS project review committee (including a mid-project presentation to share progress)  
  • A final report with recommendations in an accessible, shareable format to be distributed widely to health practitioners and a final report for research participants, PPI members and all stakeholders  
  • Joint BCU, MMU and Endo UK press release   
  • Presentations at HELS, BCU and MMU conferences and key national conferences (BSA’s Medical Sociology, Endometriosis UK’s ‘Endometriosis Research Now’ 2020 conference, and/or one practitioner conference)