Rice Whitney S, Dakwa Melanie, Filippa Sofia, Parikh Ashi, Narasimhan Subasri
Department of Behavioral Social and Health Education Sciences, Rollins School of Public Health, Emory University, Atlanta, USA.
Center for Reproductive Health Research in the Southeast, Emory University, Atlanta, USA.
BMC Womens Health. 2025 Aug 21;25(1):401. doi: 10.1186/s12905-025-03942-6.
Endometriosis is a chronic gynecological condition that significantly affects quality of life in an estimated 10-15% of women of reproductive age, yet Black women in the United States remain underrepresented in endometriosis research, limiting the potential for application of innovation and discovery. This study addresses this critical gap in the literature by exploring the quality of life experiences of U.S. Black women with endometriosis.
Using a cross-sectional qualitative design, this study collected data from in-depth semi-structured interviews with 16 Black women aged 18-45 diagnosed with endometriosis from September-October 2021. Participants were recruited via purposive and snowball sampling through online platforms. Interviews explored the physical, psychosocial, and healthcare-related dimensions of quality of life, as well as perceptions of self-advocacy and resilience, and were video and audio recorded on Zoom and transcribed verbatim. Thematic data analysis was employed to generate themes.
Participants were regionally diverse, with most (44%) from the South and most (69%) were diagnosed by a medical professional. Five major themes emerged: (1) debilitating physical symptoms (blood clots, constipation, urogenital pain, etc.), (2) psychosocial impacts including emotional distress, social isolation, and altered self-perception, (3) complex and often negative healthcare navigation experiences, (4) the dual burden and empowerment of self-advocacy and resilience, and (5) lessons learned and calls to action for improved care.
This study offers a novel and nuanced sense of Black women's quality of life with endometriosis, including the intersecting physical, emotional, and structural factors that shape their experiences, and the deepened sense of strength and agency developed though them. The findings underscore the urgent need for culturally responsive, patient-centered care and consideration of Black women's voices in recommended pathways for future endometriosis research and more equitable clinical practice.
子宫内膜异位症是一种慢性妇科疾病，估计影响着10%至15%育龄女性的生活质量，但美国黑人女性在子宫内膜异位症研究中的代表性仍然不足，限制了创新和发现的应用潜力。本研究通过探索美国患有子宫内膜异位症的黑人女性的生活质量体验，填补了文献中的这一关键空白。
本研究采用横断面定性设计，通过对2021年9月至10月确诊为子宫内膜异位症的16名18至45岁黑人女性进行深入的半结构化访谈来收集数据。参与者通过在线平台采用目的抽样和滚雪球抽样的方式招募。访谈探讨了生活质量的身体、心理社会和医疗保健相关维度，以及自我倡导和恢复力的认知，并在Zoom上进行了视频和音频记录，逐字转录。采用主题数据分析来生成主题。
参与者来自不同地区，大多数（44%）来自南方，大多数（69%）由医学专业人员诊断。出现了五个主要主题：（1）使人衰弱的身体症状（血块、便秘、泌尿生殖系统疼痛等），（2）心理社会影响，包括情绪困扰、社会孤立和自我认知改变，（3）复杂且往往负面的医疗保健导航经历，（4）自我倡导和恢复力的双重负担与赋权，（5）经验教训以及改善护理的行动呼吁。
本研究提供了一种新颖且细致入微的黑人女性子宫内膜异位症生活质量观念，包括塑造她们经历的相互交织的身体、情感和结构因素，以及通过这些因素培养出的更强的力量感和能动性。研究结果强调了迫切需要提供具有文化响应性、以患者为中心的护理，并在未来子宫内膜异位症研究的推荐途径和更公平的临床实践中考虑黑人女性的声音。
