Exploring lived experiences of Stillbirth - the need to change the focus of bereavement care to follow-on rather than follow-up

As part of the South Australian Stillbirth Autopsy and Investigation Project (SAIP): a group of women consented to sharing their lived experience of stillbirth. The women’s journeys were recorded, assessed and edited to form the application of learning component of an online education programme that focuses on stillbirth, shared decision making and bereavement follow-on care. The SAIP forms part of the SA response to the National Stillbirth Action and Implementation Plan. The women’s experiences were captured to inform 5 of the 14 key action areas, including ensuring culturally safe stillbirth prevention and care, increasing the uptake of autopsies and investigations following stillbirth, implementing best practice care (including bereavement care) for stillbirth, improving care in subsequent pregnancies, and to develop and implement evidence-based and culturally safe stillbirth education for health professionals. There are deficits in the current care and support received by parents despite current recommendations. The sharing of the lived experience of the women, identified gaps and highlighted where improvements could be made. Two strong themes emerged: the lack care for women and their families once discharged from hospital following stillbirth and subsequent pregnancy care after loss difficulties, demonstrating the need to shift the focus from follow-up to follow-on care. All women reflected that the pain and impact of the loss of a baby did not stop with the funeral or the closing of the episode of care and would value clinical practice improvement in bereavement care following-on from the birth of their babies. All women described the stress, anxiety and heartache in subsequent pregnancies following loss and the need for follow-on care to help them cope and manage pregnancy. The women’s stories were powerful and clearly articulated areas for improvement.