A COM-B and Theoretical Domains Framework Mapping of the Barriers and Facilitators to Effective Communication and Help-Seeking Among People With, or Seeking a Diagnosis Of, Endometriosis

Abstract

Endometriosis is a chronic condition in which tissue resembling the endometrium grows outside the womb, causing severe chronic pain. People with endometriosis report difficulty in help-seeking and communicating with healthcare professionals, contributing to diagnosis delays and ineffective management. The present study aimed to identify barriers and facilitators to effective communication using the Theoretical Domains Framework (TDF) and COM-B model to inform behavior change intervention development. This study was a qualitative semi-structured interview and open-ended survey design. Thematic Analysis was utilized to identify barriers and facilitators to effective communication which were mapped to the TDF and COM-B model. Four women aged 25 to 44 with a formal diagnosis of endometriosis participated in interviews. Thirty-three participants, aged 20–48 years, participated in the online survey, 21 of whom had a diagnosis of endometriosis (12 were currently seeking diagnosis). Five COM-B domains were identified: reflective motivation, social and physical opportunity, physical and psychological capability. Ten TDF domains were reflected in concerns surrounding dismissal, disempowerment, social norms, beliefs about consequences, cognitive resources, reinforcement, and environmental context and resources, among others. This is the first study to identify barriers and facilitators of effective communication and help-seeking in light of established behavioral change theory and frameworks for comprehensive intervention design. This provides a comprehensive explanation of challenges in help-seeking for endometriosis and represents the first step in the development of complex interventions to improve help-seeking and communication for people with endometriosis. Interventions targeting salient barriers will have greater potential to change behavior and improve outcomes.