Expectant parents are devastated and unprepared when they learn that their fetus has a condition that is incompatible with extrauterine life (such as trisomy 13, 18, or renal agenesis). Parents who choose to continue with the pregnancy turn to health care providers for guidance and expertise regarding treatment options and to help them deal with their distress but this support is often not available. Approximately 2% of all pregnancies are complicated by lethal fetal diagnoses (LFD) that leave parents and care providers with multiple, complex needs and options to address but with few evidence-based resources and supports. Emotional and physical distress, and intense grief are common reactions of the estimated 125,000 mothers per year in the US receiving these diagnoses. More needs to be known about parents'experiences, needs, and responses in order to inform the development of responsive health care services, such as perinatal palliative care. No US prospective studies on continuing pregnancy with LFD are reported in literature. The purpose of this naturalistic, contemporaneous study is to describe parents'experiences of continuing pregnancy with a known lethal fetal diagnosis (LFD), and to examine the parents'needs and responses to health care provider interactions across the perinatal period (prenatal, intrapartal, and postnatal. Using interview data collected from 16 mothers and fathers (or support persons) over four sequential interviews, the specific aims are: (1) To describe the on-going perinatal experiences of mothers and fathers (or support persons) after they receive a lethal fetal diagnosis and decide to continue the pregnancy. (2) To examine parents'needs from and responses to interactions with health care providers regarding pregnancy with a LFD, across the perinatal period and (3) To identify the revised developmental tasks of pregnancy undertaken by mothers and fathers in continuing pregnancy with a lethal fetal diagnosis across the perinatal period. This naturalistic study is grounded in the understanding that pregnancy is a developmental process with inherent predictable psychological tasks, but recognizing that the crisis of knowing baby's condition logically alters the psychological tasks of pregnancy in unknown ways. This study's innovation lies in its unique aims, timeliness, contemporaneous design, developmental perspective, and inclusion of both parents. Sixteen women and their spouse/partner/support person will be recruited from one of two regional perinatal centers in central New York, who meet the following: are 18 years or older, fetus with lethal diagnosis, 18 to 28 weeks gestation, and English-speaking. Data will be gathered through 4 semi-structured interviews across 6-8 months. Results will be a description of key themes of parental experience (including gender difference) over time, across pregnancy and post birth, psychological tasks for parents, and parental needs and responses to health care providers across the perinatal period. The long term goal of the study proposed here is to test a model of perinatal care, informed by these findings, that supports and addresses these parents'needs.
It is estimated that over 125,000 couples each year learn through prenatal testing that their unborn child has a fatal diagnosis, and they choose to continue their pregnancy. Having a diagnosis without accompanying understanding and support from health care providers is due, in part, to lack of knowledge. In this study parents will tell their stories of continuing pregnancy, birth, and infant death. It is hoped that best care will be developed from what is learned, so that future parents will receive support and information, so they can grieve and optimize their short time with their baby.