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

大多数有危险的新生儿(即在怀孕22至24周之间出生)死亡或遭受中度至 严重残疾。父母和医生面临着一个独特而不幸的挑战，即必须 在生命之初就做出“生命终结的决定”(EOL)。这些是高度“偏好敏感”的 决定，作为一个给定家庭的“正确答案”将在很大程度上取决于他们对死亡和 残疾，以及背景因素，如支助系统和其他应对资源。不幸的是，几乎没有 目前已知的父母的照顾目标--特别是他们的态度、感知和应对机制 与危险出生可能导致的死亡或长期残疾有关。虽然有危险的新生儿 给所有家庭带来巨大的情感和经济负担，这些负担最沉重的出生于 黑人家庭，因为黑人婴儿极早出生的可能性是 与白人婴儿相比。鉴于在成年人口中观察到的差异，在- 生命，以及在我们自己对危险分娩的研究中，仍然不清楚父母的偏好和 由于主观规范或文化期望，视角可能因种族或民族而有所不同。要提供 为家庭量身定做、以专利为中心的决策支持，至关重要的是我们要了解 他们的态度、看法和应对机制，以确保医生统一管理 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的计划。我们的 拟议的研究旨在：(1)利用定性方法前瞻性地评估态度、感知、 以及与死亡和残疾有关的应对机制 在作出关于危险分娩的决定时重要的其他因素；(2)获得初步的量化数据 评估孕妇及其伴侣的应对反应之间的关系或 支持人员、决策冲突、决策满意度和危险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、认知和应对机制 和不同种族的人口。为了实现这些目标，我们将招募30名获得 对危险分娩构成威胁或需要的妊娠并发症，以及妇女的伴侣 和/或其他重要的支持人员。面谈将在两个时间点进行，历时一年 3个月的时间，以探索决策审议、偏好构建、决策确定和 决策后的整合。此外，我们将评估应对反应，因为他们驾驭这些决策 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 决定性的心理健康结果。最后，使用在A1和A2中收集的数据，我们将定性和 定量比较不同人口统计特征(种族/民族)的数据，以确定是否出现主题 不同的，或者如果我们的量化指标存在差异。

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.