Open Collections

McKay, Emily

University of British Columbia

Background: Patients with endometriosis experience a high symptom burden and decreased quality of life. There are known provider education gaps regarding detection and diagnosis of endometriosis. Many patients with endometriosis navigate the healthcare system for years before they are diagnosed. Racialized patients face additional barriers when navigating the healthcare system, including difficulty finding a healthcare provider who will validate their experience of pain. Purpose: The purpose of this study was to learn if patients with endometriosis report experiences of respect and autonomy on their journey to receiving a diagnosis of endometriosis. Methods: This study was conducted as a cross-sectional study. Validated survey tools to measure respect and autonomy in childbirth were adapted for use in patients with endometriosis. A patient research advisory board was composed to review the accessibility of the survey. Participants were primarily recruited through the British Columbia Women’s Hospital Chronic Pelvic Pain and Endometriosis Clinic. Other organizations with increased sample diversity were also included to increase the diversity of the sample. Results: The mean score of respectful care was 48.41 (SD = 5.01), indicative of low overall respect. The mean score for total autonomy is indicative of low autonomy with a mean of 24.10 (SD = 8.35). While a diverse sample was included (25% non-white, 12.6% gender-diverse, 28.6% non-heterosexual), the sample size in each group did not generate significant power to stratify the results based on sociodemographic variables like race, gender identity or sexual orientation. Implications: Further research is needed to replicate this study with a larger sample size to detect these potential differences in care experiences amongst racialized and gender-diverse populations. Overall, patients with endometriosis are disrespected and have few opportunities to demonstrate autonomy in their care. Education to increase awareness about endometriosis and ensure timely diagnosis of endometriosis is essential to improve experiences of care for patients.

Text

2023-04-20

Attribution-NonCommercial-NoDerivatives 4.0 International

http://hdl.handle.net/2429/84371

Nursing

University of British Columbia

UBCV

http://creativecommons.org/licenses/by-nc-nd/4.0/