Aims: This protocol describes a study aiming to: (1) describe pathways and experiences of women's symptom recognition, appraisal and management of endometriosis; and (2) identify differences in pathways and experiences among a socioeconomically and racially diverse group of women.
Design: Descriptive qualitative study with stratified purposeful sampling.
Methods: Data will be collected from a minimum of 24 women with provider-presumed or surgically confirmed diagnoses across two time points. The study will recruit across socioeconomic status (SES) and race/ethnicity (non-Hispanic White, non-Hispanic Black, and Hispanic/Latina) to ensure diversity of the sample. Recruitment will occur at a large public hospital in the southeastern United States (US). Participants will be interviewed using semi-structured interview guides informed by Elder and Giele's Life Course perspective approaching women as active beings in dynamic systems shaped by: 1) their location in time and space; 2) linked lives; and 3) human agency, and 4) the time of their lives. Each woman's experiences, symptoms, and contacts with health-care systems will be mapped to trace their diagnostic pathways. Coded interviews and data will undergo within- and across-case analysis to identify similarities and differences in their experiences. Institutional review board approval was obtained June 2019.
Discussion: The participants' diagnostic maps will enable us to distinguish the differences in pathways and experiences between and across groups. Findings will inform the development of interventions aimed at shortening the time to diagnosis.
Impact: This will be the first study to compare pathways to diagnosis of endometriosis in a socioeconomically and racially diverse sample of US women using the life course perspective. The results from this research stand to inform future interventions aimed at helping women achieve more timely diagnoses.
目的: 此方案描述了一项研究,该研究旨在(1)描述女性子宫内膜异位症症状识别、评估和管理途径和经历,以及(2)在社会经济和种族多元化的女性群体中找出途径和经历的不同。 设计: 有层次有目的的抽样描述性定性研究 方法: 将从至少24名在两个时间点内经提供者推断或是经外科诊断确诊的女性中收集数据。该研究将招募不同社会经济地位和种族/民族(非西班牙裔白人、非西班牙裔黑人和西班牙裔/拉丁裔)的人,以确保样本的多样性。招募工作将在美国东南部的一家大型公立医院进行。参与者将使用由Elder and Giele's Life Course视角提供的半结构化访谈指南进行访谈,该指南将女性视为动态系统中的活跃生物,由以下因素塑造:1)她们在时间和空间中的定位;2)相联系的生活;和3)人类能动性以及4)生命中的时间。每名女性的经验、症状和与医疗系统的接触都将绘制成图形,以追踪其诊断途径。加密访谈和数据将在案例分析中进行,以找出她们经历中的异同。2019年6月获得机构审查委员会批准。 讨论: 参与者的诊断图将便于我们区分不同群体之间途径和经历的差异。研究结果将有助于制定旨在缩短诊断时间的干预措施。 影响: 这将是首次按照Life Course的视角,收集美国女性的社会经济和种族多元化样本,比较子宫内膜异位症诊断途径的研究。这项研究的结果将为今后帮助女性获得更及时诊断的干预措施提供信息。.
Keywords: delay; diagnosis; disparities; endometriosis; equity; life course; midwives; nurses; nursing; pathway; protocol; qualitative interview.
© 2020 John Wiley & Sons Ltd.