When do you talk about loss and grief? And how do you handle that? Eline Kochen (project executor, UMC Utrecht) and Marijke Kars (project leader, UMC Utrecht) hope that the emBRACE* study will provide parents and caregivers with tools for dealing with grief and mourning among parents of seriously ill children around the end of their child's life.

The research arose from the needs of both parents and caregivers. “Parents experience an accumulation of loss experiences during the end of their child's life,” says Eline. “They like it when these experiences - and the grief associated with them - are given a place in the consulting room. This now also happens with some regularity, but it should have a firmer position. Care providers often find it a challenge how to discuss this with parents.”

Conversations in the field

The emBRACE study is built up from four perspectives. After an extensive literature search into theories about loss and grief, Eline approached doctors and nurses with the question of how they experience care around loss and grief. How is it offered, where do parents run into and what helps them. Follow-up interviews have also been investigated. This conversation usually takes place about 6-8 weeks after the death of a child. Several aftercare conversations were recorded and all those involved could tell how they experienced the conversation.

 Elaine in conversation

Keeping up as a parent

Subsequently, Eline spoke to parents of both seriously ill children and recently deceased children. What has come to them and at what moment do they experience the sadness and those feelings of mourning? How do they deal with that, is there room for it? And: what kind of support would they want or need?

Eline says: “It was very special to interview parents about their personal experience in such a vulnerable situation. That parents, in the midst of all the violence that plays out, allow me to question them about how they experience that. And thereby share their emotions and needs.”

“The parents have given us a lot of insights. They are constantly aware of the fact that their child is going to die. That there is a shortened lifespan and that they are moving towards the end of life. And even if it doesn't come up in a care conversation, that awareness is always there," says Eline.

Parents have to keep many different balls in the air. They are a spider in the web. Eline explains: “First of all, you want to be there for your child and the whole family. You want your child to get the most out of life and that you can shape your parenting properly. But also that you yourself stand up, that you are a fully-fledged discussion partner for healthcare providers. In the midst of that dynamic, parents also feel a sense of loss and grief. They try to keep that sadness as small and manageable as possible, so that there is more room to enjoy the fun things as well. They also try to focus on the good things that are still there and to realize the care for the child and family.”

At times, parents do come into contact with their grief, through the confrontation with the actual loss or with the intensity of the impending loss. The grief can then impose itself, or parents can make room for it by, for example, taking a short distance from the situation or by seeking support.

Insecurity

After all the conversations, it was striking that there is a lot of uncertainty in pediatric palliative care.

About the course of the disease in time and symptoms, but also uncertainty from the care provider about how parents respond in conversations. “Parents show crisis reactions during that period and it is difficult to respond if you are not used to this. And with that goes hand in hand: uncertainty about when are you doing the right thing?” Eline advocates embracing that uncertainty more. You don't want to solve it. “We have to learn to deal with it,” says Eline.

“Another important insight is that good care for loss and grief does not mean that it always has to be discussed. You can sometimes leave it if parents, for example, try to focus on the good and beautiful moments. Parents are very aware of their child's imminent end of life, but in many cases they want to minimize their feelings of loss and grief. To be able to do things that need to be done and to enjoy the time they still have with their child.”

From research to practice

The conversations yielded great insights. But how do you translate this into practice?

“As a basis, we contributed to the module 'bereavement and aftercare' within the revision of the guideline for palliative care for children. Our research team has developed the Loss and Mourning e-learning. In this e-learning we offer care providers practical tools and tips about dealing with loss and grief in parents. In addition, we have developed two leaflets for holding an aftercare interview. With the aim that the needs of both parties can be better reflected in that conversation and that they can both get more out of the conversation,” says Eline. There is a folder variant for healthcare providers that can provide guidance on which topics you can discuss and how you can introduce them. In addition, there is also a folder for parents that helps to prepare for the meeting. This gives them more control and they know what to expect.

“Finally, we also made three films. The first is about loss and grief for parents of a seriously ill child. The second is aimed at parents whose child has died. And the third is about the aftercare conversation. With these films we hope to offer parents support and recognition. We have asked parents to read along with us. And we especially asked them to think about how we can make the videos even better match the experience and needs of parents,” says Eline.

Eline hopes that loss and grief will become more normalized and healthcare providers will be able to deal with it appropriately. Even before the actual death.

Drive and dreams

Eline looks enthusiastic when she talks about her dream: “The healthcare of today is very good and as a result we also see that children with life-limiting or life-threatening conditions live longer. As a result, we see that other things play a role and become increasingly important in daily care: the psychosocial side and the influence of the illness on the family, including the experiences of loss. I hope that we can better integrate that psychosocial side into the daily care, which is already being offered at such a good level.”

Do you have questions about emBRACE?

Feel free to email Eline Kochen (project executor, Expertise Center Palliative Care Utrecht, UMC Utrecht) or Marijke Kars (project leader, Expertise Center Palliative Care Utrecht, UMC Utrecht) via emBRACE-study@umcutrecht.nl .

The folders, videos and e-learning will be available after the summer. More information about this will follow.

*The emBRACE study was realized with funding from ZonMw (project number: 844001506).