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.
Though relatively rare, periviable birth is among the leading causes of infant death and childhood disability, with disproportionate impact in low-income and minority communities. The CDC estimates that extremely premature deliveries such as these result in societal costs exceeding $26 billion dollars annually, but the emotional costs and mental health impact of periviable birth on families has yet to be measured or well- understood. This study proposes to collect preliminary data to understand family perspectives on death, disability, and coping in order to develop decision-support that will help families make more informed, high- quality decisions about periviable delivery management.
