Development of a novel, patient-centered measure of reproductive autonomy in the healthcare context

在医疗保健环境中开发一种新颖的、以患者为中心的生殖自主权测量方法

• 批准号: 10508732
• 负责人: Mehret Birru Talabi
• 金额: $ 20.63万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-08-01 至 2024-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10508732
• 关键词: Access to Information; Adherence; Advocate; Age; Autoimmune Diseases; Behavior; Black race; Caring; Chronic; Chronic Disease; Clinical; Color; Complex; Contraceptive Agents; Contraceptive methods; Counseling; Country; Decision Making; Developed Countries; Development; Disease; Economics; Environment; Ethnic Origin; Evaluation; Exercise; Family Planning; Female; Future; Goals; Health; Health Planning; Health Promotion; Healthcare; High Risk Woman; Human Rights; Infant Mortality; Information Services; Interview; Investigation; Justice; Lead; Life; Light; Link; Low income; Maternal Health; Maternal Mortality; Measures; Mediating; Mediator of activation protein; Medical; Medical Ethics; Modeling; Outcome; Patients; Perception; Personal Satisfaction; Persons; Plant Roots; Pregnancy; Premature Birth; Prevalence; Preventive healthcare; Process; Property; Psychometrics; Quality Indicator; Race; Recommendation; Reporting; Reproductive Health; Research; Risk; Role; Services; Shapes; Socioeconomic Status; Stigmatization; Structural Racism; Structure; Time; Trust; United States; Validity and Reliability; Woman; Work; adverse maternal outcomes; base; child bearing; cognitive interview; cohort; concept mapping; ethnic minority; experience; explicit bias; field study; follow-up; health care settings; implicit bias; indexing; infant outcome; marginalized population; maternal morbidity; maternal outcome; novel; patient oriented; perinatal outcomes; preference; pregnancy prevention; pregnant; prevent; racial minority; reproductive; reproductive outcome; rheumatologist; satisfaction; social; social health determinants; socioeconomic disparity; women of color

ABSTRACT The United States has among the worst maternal and infant outcomes of developed countries, which are disproportionately experienced by people who are racial or ethnic minorities, poor, and/or have chronic medical illnesses. The ability for women to actualize their reproductive decisions around pregnancy, pregnancy prevention, and termination, may require the involvement of clinicians, who may (or may not) facilitate access to reproductive services. Thus, to better understand the root causes of adverse maternal and perinatal outcomes, we believe that the reproductive healthcare setting requires closer investigation. Studies overwhelmingly suggest that people who are socially marginalized or have chronic and complex medical illnesses experience negative reproductive health care encounters. Such encounters may prevent patients’ access to the information, services, and supports needed to make and execute reproductive decisions that align with their values and priorities. Patients who perceive that their reproductive autonomy has been undermined in the healthcare context may feel disempowered, distrustful of their clinicians and the health care environment, and unlikely to follow clinical recommendations or receive follow-up care— all of which may have deleterious effects on their health and well-being. Thus, the extent to which people experience reproductive autonomy in healthcare settings may be a critical but understudied factor in understanding how the healthcare environment may influence maternal health and outcomes. No quantitative measure exists to capture this construct or link it to patient-centered or clinical outcomes. We therefore propose to develop a novel measure of Reproductive Autonomy in Healthcare (RAH). We will refine our preliminary conceptualization of RAH through qualitative interviews and concept mapping. We will use this framework to generate preliminary items for the RAH measure. We will refine the items with guidance from an interdisciplinary panel of content experts and cognitive interviews with patients. Finally, we will field test the RAH measure among reproductive-age women who are socially marginalized and/or have chronic diseases to assess its acceptability and evaluate its preliminary psychometric properties. In future work, we will validate the RAH measure in a large cohort of diverse women and evaluate the potential roles of RAH as a mediator or moderator of downstream clinical outcomes in women at high risk for preterm birth, and maternal morbidity and mortality.

抽象的 美国是发达国家最糟糕的母亲和婴儿成果之一 种族或少数民族的人（贫穷和/或慢性病）经历了不成比例的经历 医学疾病。妇女在怀孕期间实现其生殖决定的能力 预防和终止可能需要临床医生的参与，他们可能（或可能）促进访问 生殖服务。为了更好地了解不良母亲和围产期的根本原因 结果，我们认为生殖医疗保健设置需要进行更深入的调查。研究 绝大多数表明，社会上被边缘化或具有慢性和复杂的医学的人 疾病经历了负面的生殖医疗保健遭遇。这样的遭遇可能会阻止患者 访问做出和执行与一致的生殖决策所需的信息，服务和支持 其价值观和优先事项。认为自己的生殖自主性受到破坏的患者 在医疗保健环境中，他们的临床医生和医疗保健可能会感到无能 环境，不太可能遵循临床建议或接受后续护理 - 所有这些都可能拥有 对他们的健康和福祉的有害影响。那是人们体验生殖的程度 医疗保健环境中的自治可能是了解医疗保健如何了解的关键因素 环境可能会影响孕产妇的健康和结果。没有定量措施来捕获这一点 构建或链接到以患者为中心或临床结果。因此，我们建议开发一种新颖的测量 医疗保健生殖自治（RAH）的生殖自治。我们将完善我们对RAH的初步概念化 通过定性访谈和概念映射。我们将使用此框架生成初步项目 用于RAH测量。我们将在内容专家跨学科小组的指导下完善这些项目 和与患者的认知访谈。最后，我们将在复制时期测试RAH测量 社交边缘化和/或患有慢性疾病以评估其可接受性并评估其妇女 初步心理测量特性。在以后的工作中，我们将验证大量队列中的RAH测量 多样化的妇女并评估RAH作为下游临床的调解人或主持人的潜在作用 在早产以及产妇发病率和死亡率高风险的女性中结果。