Women with endometriosis: Experiences with pain management and views on optimal healthcare through the concept of health literacy.

BACKGROUND

Endometriosis is a chronic inflammatory disease, characterised by pain and potential fertility reduction, affecting 6%-10% of women. Pain management courses may promote self-care and enhance patient satisfaction. However, research into the experiences of participation in such courses are lacking.

OBJECTIVES

The study aims to describe the experiences of Norwegian women with endometriosis after pain management course and their view on optimal healthcare through organisational and individual health literacy.

DESIGN

Qualitative study as part of a randomised controlled trial (NCT05091268).

METHODS

Semi-structured individual in-depth interviews were conducted between August and November 2023 with 19 women diagnosed with endometriosis, recruited from two University hospitals specialising in endometriosis care, through a patient organisation and social media, after participation in a multidisciplinary pain management course.

RESULTS

Reflexive thematic analysis yielded two main themes: (1) Insightful experiences with individual health literacy and (2) frustrating experiences with organisational health literacy. Participants reported a positive shift in their ability to self-manage endometriosis following the pain management course, demonstrating a progression from passive to active participation in their own care. The participants also expressed a strong and recurring need for enhanced dissemination of information, including a need for post-diagnosis educational courses, highlighting a demand for ongoing, interactive support tailored to their condition.

CONCLUSION

A need emerges for improved dissemination of information, enhanced monitoring, and health expertise at an organisational level within the healthcare system. Thus, future health care services should aim to provide seamless, multidisciplinary treatment to improve patient satisfaction.

REGISTRATION

Trial registry name: Effect of Physical Activity and Pain Education on Endometriosis-Associated Pain.

REGISTRATION NUMBER

NCT05091268. URL: https://clinicaltrials.gov/study/NCT05091268.