Surviving the death of a baby : end of life and the enormity of grief

Aim To explore parents’ experiences and perceptions of support during and following the death of their baby. Study design An interpretative phenomenological approach was adopted with in-depth unstructured interviews undertaken with seven participants whose baby had died in a north west neonatal intensive care unit. The study was conducted in a way that was sensitive and respectful to undertaking research with bereaved parents. Data were analysed using interpretative phenomenological analysis to describe and interpret parental experiences. Findings Four superordinate themes emerged from the data analysis: ‘the enormity of grief’, ‘being isolated’, ‘trying to survive’ and ‘routes to an improved future’. Parents’ grief experiences were at times insurmountable and they perceived that their grief was not always understood by family and friends, and that health professional support was variable. The ‘Neonatal Grief Sandstorm’ visual tool is offered as a way for both professionals and bereaved parents to visualise and discuss common experiences of bereaved parents. Outcomes This thesis has represented the voices of parents and their perspective following neonatal bereavement. This appears to be the first study in the world to link neonatal end of life care to parents’ grief experiences, and the first use of interpretative phenomenological analysis to facilitate the parent’s voice on experiences of and life after a neonatal death. The study provides insight into mothers’ and fathers’ grief experiences after the death of a baby in a neonatal unit. A novel finding was the significance of obstacles to high quality neonatal end of life care and the negative effect that this had on perceived quality of care and grief experiences. The Neonatal Grief Sandstorm is the first visual tool of its kind in neonatal palliative, end of life and bereavement care