Exploring attitudes, perceptions, and coping from the perspective of families at risk of extremely preterm delivery

从极早产风险家庭的角度探讨态度、看法和应对方法

• 批准号: 9321493
• 负责人: BROWNSYNE M TUCKER EDMONDS
• 金额: $ 19.62万
• 依托单位: INDIANA UNIV-PURDUE UNIV AT INDIANAPOLIS
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-01 至 2019-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9321493
• 关键词: Address; Adult; Anxiety; Attitude; Beginning of Life; Birth; Caring; Centers for Disease Control and Prevention (U.S.); Cessation of life; Characteristics; Childhood; Conflict (Psychology); Data; Decision Making; Emotional; Ensure; Ethnic Origin; Family; Fathers; Gestational Age; Goals; Health Personnel; Health Status; Hispanics; Infant; Intensive Care; Interview; Knowledge; Legal patent; Literature; Low income; Measures; Mental Depression; Mental Health; Methodology; Methods; Neonatal Intensive Care; Outcome; Parents; Participant; Patient Preferences; Pattern; Perception; Persons; Phase; Physicians; Population; Population Heterogeneity; Post-Traumatic Stress Disorders; Pregnancy; Pregnancy Complications; Pregnant Women; Premature Birth; Provider; Race; Recruitment Activity; Research; Resources; Resuscitation; Resuscitation Decision; Risk; Sample Size; Stress; Support System; Survivors; Time; Uncertainty; Uterus; Ventilator; Woman; adverse outcome; contextual factors; coping; coping mechanism; cost; cultural values; disability; end of life; ethnic difference; ethnic diversity; expectation; experience; family support; infant death; minority communities; neonate; parental influence; patient oriented; periviable; preference; premature; prospective; racial and ethnic; racial difference; racial diversity; response; satisfaction; social norm

The majority of periviable neonates (i.e., born between 22 and 24 weeks gestation) die or suffer moderate to severe disability. Parents and physicians are faced with the unique and unfortunate challenge of having to make `end-of-life decisions' (EOL) at the very beginning of life. These are highly `preference-sensitive' decisions, as the `right answer' for a given family will depend largely on their perceptions related to death and disability, and contextual factors, such as support systems and other coping resources. Unfortunately, little is currently known about parent's goals of care—particularly their attitudes, perceptions and coping mechanisms related to the death or long-term disability that may result from periviable birth. And while periviable births present significant emotional and financial burdens for all families, these burdens are born most heavily by black families, as black infants are more than three times as likely to be born extremely premature as compared to white infants. Given the differences that have been observed in the adult population at the end-of- life, and in our own research with periviable births, it remains unclear whether parental preferences and perspectives may differ by race or ethnicity by virtue of subjective norms or cultural expectations. To provide culturally-tailored, patent-centered decision support for families, it is critically important that we understand both their attitudes, perceptions and coping mechanisms in order to ensure that physicians align management plans with parent's goals and preferences, and whether race or ethnicity influences parental perspectives. Our proposed study aims to: (1) Utilize qualitative methodologies to prospectively assess attitudes, perceptions, and coping mechanisms related to death and disability from the perspective of pregnant women, fathers, or important others when making decisions concerning periviable delivery; (2) Obtain preliminary quantitative data to assess the relationships between coping responses utilized by pregnant women and their partners or support persons, decision conflict, decision satisfaction, and mental health status following periviable birth; and (3) Compare the attitudes, perceptions, and coping mechanisms related to death and disability across racially and ethnically diverse populations. To accomplish these aims, we will recruit 30 women admitted with a pregnancy complication that poses the threat of or need for periviable delivery, along with the woman's partner and/or other important support person. Interviews will be conducted with participants at two time points over a 3-month period in order to explore decisional deliberation, preference construction, decision determination, and post-decisional consolidation. Additionally, we will assess coping responses as they navigate these decisional phases. Using validated scales, we will quantitatively assess coping responses, decision quality, and post- decisional mental health outcomes. Lastly, using the data collected in A1 and A2, we will qualitatively and quantitatively compare data across demographic characteristics (race/ethnicity) to determine if themes arise differentially or if there are differences in our quantitative measures.

大多数围存活新生儿（即，在妊娠22至24周之间出生）死亡或遭受中度至 严重残疾。父母和医生面临着独特而不幸的挑战， 在生命之初就做出“寿命终结决定"。这些是高度“偏好敏感”的 作为一个特定家庭的“正确答案”，决定将在很大程度上取决于他们对死亡的看法， 残疾和背景因素，如支持系统和其他应对资源。不幸的是， 目前了解父母的照顾目标，特别是他们的态度，看法和应对机制 与围产期分娩可能导致的死亡或长期残疾有关。虽然围产期分娩 目前所有家庭的重大情感和经济负担，这些负担是最沉重的出生， 黑人家庭，因为黑人婴儿极早产的可能性是黑人家庭的三倍多。 与白色婴儿相比。鉴于在2010年年底在成年人口中观察到的差异， 在我们自己对围产期分娩的研究中，仍然不清楚父母的偏好和 由于主观规范或文化期望，观点可能因种族或族裔而异。提供 为家庭提供文化定制的、以专利为中心的决策支持，至关重要的是， 他们的态度，看法和应对机制，以确保医生调整管理， 计划与父母的目标和偏好，以及种族或民族是否影响父母的观点。我们 拟议的研究旨在：（1）利用定性方法前瞻性地评估态度，看法， 从孕妇、父亲或儿童的角度， 在做出关于围产期分娩的决定时重要的其他因素;（2）获得初步的定量数据 评估孕妇及其伴侣使用的应对反应之间的关系， 支持人员、决策冲突、决策满意度和围产期分娩后的心理健康状况; (3)比较不同种族对死亡和残疾的态度、看法和应对机制 和不同种族的人口。为了实现这些目标，我们将招募30名女性， 与女性伴侣一起沿着造成围产期分娩威胁或需要围产期分娩的妊娠并发症 和/或其他重要的支持者。访谈将在两个时间点进行， 3-一个月的时间，以探索决策审议，偏好建设，决策确定， 决策后巩固。此外，我们将评估应对反应，因为他们导航这些决策 阶段。使用经过验证的量表，我们将定量评估应对反应，决策质量和后， 决策性心理健康结果。最后，使用A1和A2中收集的数据，我们将定性和 对人口统计学特征（人种/种族）的数据进行定量比较，以确定是否出现主题 或者我们的量化指标是否存在差异。

项目成果

Mode of delivery in the context of periviable birth: informed deference and shared decision-making.

围产期的分娩方式：知情尊重和共同决策。

• DOI: 10.1038/s41372-022-01537-9
• 发表时间: 2023
• 期刊: Journal of perinatology : official journal of the California Perinatal Association
• 作者: Bode,LeahM;Jager,ShannonM;Panoch,Janet;Hoffman,ShelleyM;Laitano,Tatiana;Kavanaugh,Karen;TuckerEdmonds,Brownsyne
• 通讯作者: TuckerEdmonds,Brownsyne