Experiences of communication in women with endometriosis: perceived validation and invalidation in different contexts, and associations with health-related quality of life

Abstract

Endometriosis, a chronic gynecological disease affecting approximately 10% of women of reproductive age, has a significant impact on physical and mental health. This cross-sectional study aimed to explore experiences of validating and invalidating communication in three contexts (with healthcare providers, employers, and family/friends), and whether this may predict health-related quality of life (HRQoL) in women with endometriosis. Data was collected through a digital survey distributed to women with self-reported endometriosis in Sweden. The survey included measures of validating and invalidating communication, depressive symptoms, anxiety, and HRQoL. A total of 427 women participated. The results indicated that women experienced varying levels of validating and invalidating communication in different contexts, with close family/friends providing the highest level of validation, and healthcare providers the lowest. Furthermore, a combined construct of high levels of validation and low levels of invalidation from healthcare providers and from close family and friends were significant predictors of HRQoL. These findings highlight the importance of supportive communication and understanding from healthcare providers and close social networks in promoting the well-being of women with endometriosis. Future research should further explore the impact of validating communication within healthcare settings and develop interventions to improve communication and support for women with endometriosis.