Dying at the beginning of life

When parents receive a prenatal diagnosis of their child’s terminal condition, they are usually confronted with the decision to terminate the pregnancy. With this decision, parents are said to experience "chosen losses" and "lost choices", which makes clear the inevitability of the loss of a desired child. After termination of the pregnancy, the parents commonly experience grief reactions but also mental and psychiatric disorders. Studies have shown that caring for parents guided by their needs can ease their burden and support them as they deal with the death of the child regardless of whether they choose to continue or terminate the pregnancy. This study is investigating what care and support services are available in Switzerland today and examining whether changes are needed to make this care and support need- and family-oriented.

This project aims to throw light on having to deal with the death of the child from the perspective of the parents and health care professionals. Based on the findings, recommendations will be made for the design of future interprofessional care and support services. For this purpose, a minimum of 30 parents and 30 health care professionals will be questioned.

The results of this project will contribute towards a rethinking of current practice, based on the experiences of parents and health care profes-sionals. On this basis, recommendations will be made for improving care by and cooperation among health care personnel. All in all, this should contribute towards the prevention of serious health conse-quences in the long term.

Dying at life’s beginning