Navigating Endometriosis Care: A Content Analysis of Women's Online Accounts of Doctor-Patient Relationships

Abstract

Endometriosis is a chronic condition experienced by women of reproductive age, where endometrial-like tissue grows outside the uterus. Women's experiences of their interactions with doctors about endometriosis are under-researched. Online discussion forums provide an opportunity to conduct naturalistic observations of how women describe doctor-patient relationships in the context of endometriosis without researchers' influence. Therefore, the current study aimed to explore how women with endometriosis (suspected or confirmed) describe doctor-patient relationships in online accounts. One hundred and seventy-six opening posts made during March 2023, Endometriosis Awareness Month, by 160 posters to a Reddit endometriosis Subreddit, identified through a systematic search, were analysed using conventional qualitative content analysis. Five overarching categories were generated to summarise posters' doctor-patient relationships: "Communication', 'Accessing care', 'Negative healthcare experiences', 'Invalidation and dismissal', and 'Positive healthcare experiences'. Findings provide insight into how women with endometriosis interact with doctors and the difficulties they report encountering, such as doctors not being specialised in endometriosis, normalisation of pain, invalidation and dismissal, long delays, and challenges obtaining referrals and accessing appropriate care. Communication between doctors and patients must be improved to decrease long diagnostic delays and maximise patient satisfaction. Further research, including more naturalistic studies, about doctor-patient interactions for endometriosis would be beneficial and should include doctors' perspectives. Enhanced health professional training may also aid in optimising endometriosis care. Keywords: endometriosis; women; online accounts; doctor-patient relationships; conventional content analysis