The needs, preferences, and priorities for supportive healthcare in people living with endometriosis: A qualitative exploratory study

Although pain, poor quality of life and symptoms of anxiety and depression are common in people with endometriosis, consumer views regarding supportive care needs are limited. Using a descriptive phenomenological approach, three focus groups were conducted with 12 participants with endometriosis to understand their needs and priorities for supportive evidence-based healthcare. Template thematic analysis identified three overarching themes: (1) Endometriosis Is a Whole Person Disease , highlighting the physical and psychological challenges of endometriosis; (2) Current Gaps and Unmet Needs – The Disparity Between Individual Requirements and Available Services and Support , emphasising the impact of healthcare practitioner interactions, financial constraints, and information requirements; and (3) Endometriosis Needs Whole Person Solutions , identifying the need for interdisciplinary, person-centred care to enhance individual empowerment and healthcare decision-making. Given the high costs of healthcare and limited availability of practitioners familiar with endometriosis and whole-person approaches, development and evaluation of online supportive care programs may be beneficial.