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Mourning and aftercare conversations

Parents of seriously ill children have to endure a lot during the end of their child's life. Experience stories show that parents try to stay upright in order to take care of their child and to have a good time together, even though there is grief about the (approaching) loss of their child. Caregivers see and recognize the loss that parents suffer, but do not always know how best to stand next to parents and which care meets their needs.

Mourning and aftercare conversations

Insight into how parents experience loss and grief around the death of their child can help parents deal with their grief and provide caregivers with tools for guidance that meets the needs of parents.  

On this page you will find:

  • Insights into how parents deal with loss and grief;
  • Guidelines for parents and professionals about conducting aftercare interviews;
  • Information about an e-module on supporting parents in the event of loss and grief.

Dealing with loss and grief

Two short films, accompanied by images by the Sand Artist, provide insight into the experiences of parents with loss and grief in the last phase of their child's illness, and ways in which parents can find support in this.


Living with loss

This video is about feelings of loss and grief of parents after the death of their child and what can support them.

Living with loss


Aftercare conversations

The aftercare meeting usually takes place one to two months after the death of the child. It is a conversation between parents and one or more caregivers who have cared for their child. The aftercare meeting is intended to support parents. That is why it is important that the conversation offers space for what is important to them.  

Information for parents

As a parent, do you want to know how to prepare for an aftercare interview with care providers, or do you, as a care provider, want to offer parents the opportunity to prepare for an aftercare interview? The information video and the information brochure will help you with this.



Information for healthcare providers

This guide is intended to give you, as a care provider, insight into topics that often concern parents, in order to provide starting points for conducting the aftercare interview.

Supporting parents in grief

When their child's end of life approaches, parents often work hard to survive as parents, while there is a constant threat of disruption as they continue to have new experiences of loss due to the decline of their child. Difficult treatment decisions often have to be made in that context. To provide insight into the way in which parents deal with loss and grief in the phase in which their child is deteriorating and how to provide guidance, an interactive e-module has been developed in which you learn to offer appropriate guidance in an interactive manner.

About this research

The information and recommendations included here are based on interview research with experienced parents and caregivers, and are the result of the emBRACE study.

The emBRACE study is a project of UMC Utrecht; carried out in collaboration with the Wilhelmina Children's Hospital, the Princess Máxima Center for Pediatric Oncology, the Emma Children's Hospital, the Sophia Children's Hospital, the KinderThuisZorg Foundation, the Faculty of Social Sciences of Utrecht University, the Knowledge Center for Pediatric Palliative Care and the Child and Hospital Foundation. The project is funded by ZonMw.

Research team: Eline Kochen (project executor)
Marijke Kars (project leader)


Would you like to read more about the findings of the emBRACE study? In the list of scientific publications you will find the most recent publications of the research team on this theme.