Experiencing Anencephaly: A Parent's Perspective (S782)

Abstract

•Describe components contributing to the long-term impact of perinatal bereavement on parents as they traverse the unknown journey of perinatal loss associated with an anencephalic pregnancy.•Recognize the utility of the perinatal grief intensity scale (PGIS) and its application to daily practice during encounters with parents experiencing perinatal loss.•Identify barriers in attendees current work setting to providing bereaved parents with support and resources such as perinatal palliative care. Congenital anomalies are the leading cause of infant death in the United States. Nearly 25% or parents who experience perinatal loss develop long-term adverse psychosocial outcomes resulting from intense grief, such as depression, anxiety, substance abuse, posttraumatic stress disorder, and suicidal ideation. The majority of perinatal loss research has focused on miscarriage and stillbirth, necessitating investigation into the impact of lethal congenital anomalies. The purpose of this study was to explore the impact of the lived experience of parents with a history of a pregnancy complicated by anencephaly using hermeneutic interpretive phenomenology and the PGIS. This mixed methods pilot study included three open ended interviews followed by the administration of the PGIS. Interview transcripts were analyzed by a hermeneutic team using Heideggerian philosophy. The PGIS scores were analyzed and demographic characteristics were collected. Two women and one man participated. All participants were Caucasian, middle income, living in a suburban area. Three patterns emerged: Perinatal loss as a psychosocial journey, struggling with societal expectations, and communication as challenging. The PGIS scores indicated two of the three participants continue to experience intense grief at two and four years after their loss. None of the participants were referred to bereavement support or perinatal palliative care. Congenital anomalies such as anencephaly are a life altering event for parents, placing them at risk for persistent, intense grief. It is important to recognize parents at risk for intense grief and provide appropriate bereavement resources such as perinatal palliative care.