Self-Management Among People Living With Endometriosis: A Qualitative Study

Self-management is pivotal for effective chronic disease management. However, this concept remains unexplored among people with endometriosis, who often experience chronic pain and significant impacts on their quality of life. This research explored participants' experience managing endometriosis and their understanding and integration of self-management into their lives. Inductive reflexive thematic analysis was used to analyze transcripts from 15 semi-structured interviews among people with endometriosis. The themes captured many aspects of self-management and included (1) perceptions of control, (2) engaging in self-management behaviors, (3) active decision-makers versus recipients of care, (4) establishing a patient-provider partnership, and (5) support is vital. The extent to which participants engaged in self-management varied, however, is consistent with self-management literature for other chronic conditions suggesting that there is a role for self-management among people living with endometriosis.