“You’re on a Rollercoaster, Just Hold On”: The Lived Experience of the Dyad Following a Fetal Death

Abstract

Purpose:Pregnancy and birth is often a joyous period for a dyad. In the instance of fetal death, however, dyads are met with a devastating loss of their child, the hope for the future, and the new reality of becoming a bereaved parent. The purpose of this qualitative study was to investigate the lived experience of the dyad following a fetal death and capture the essence of the grief journey.Study design and methods:A hermeneutic phenomenological study was performed using van Manen’s method for data collection and analysis. Semi-structured interviews were conducted via Zoom. Participants were recruited from national and local agencies providing education and resources about perinatal loss. Data analysis utilized the Dedoose software platform to track qualitative coding.Results:Ten dyads (20 individuals) from the United States and Canada participated. The data revealed four major themes with several subthemes. The major themes were as follows:“The child I’ll never really know”: Pregnancy loss grief; “You’re on a rollercoaster, just hold on”: The emotional journey; Climbing uphill: Barriers to healing; andResurfacing from grief: Healing after loss.Clinical implications:The death of a fetus over 20 weeks gestation provides a unique experience of grief. The findings support the need for additional resources needed beyond the hospital by nurses or other providers to facilitate healing and minimize complicated grief. Furthermore, the findings support the need for increasing awareness among healthcare providers and peers about how to communicate and care for dyads experiencing fetal death.