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Why aftercare is important

When a child dies, parents and any siblings must reconnect with their lives. While your child is no longer physically present, the bond remains. That bond gradually transforms. This process can evoke significant tension and painful emotions. Aftercare provided by caregivers who know the family well can support this process. It helps to reflect on what happened and get answers to questions. This support in the initial period after the death helps prevent complicated grief and contributes to greater peace and stability in the long term.

What does aftercare include?

1. Attention and support surrounding the death

  • Sharing care for the child (e.g. washing, dressing) if parents feel comfortable with this.
  • Assisting with practical matters such as laying out the body and removing materials from the home.
  • Ensure a calm and respectful end to care.

2. Aftercare discussions with healthcare providers

Aftercare meetings usually take place about six to eight weeks after the death of a child. Parents and caregivers reflect together. The meeting provides an opportunity for:

  • Looking back on the care and the last period.
  • Discuss what went well and what raises questions.
  • Helping to understand why certain choices have been made in healthcare.
  • Share how you are doing, as a parent and as a family.

This is often done with a pediatric nurse who already knows the family well and who remains a trusted contact. Clarity about the course of the illness and the care provided helps parents move forward.

3. Attention for the whole family

  • How are the parents and siblings doing?
  • Are there signs of prolonged or stalled grief?
  • Do you need additional help from a grief counselor, psychologist or spiritual counselor?

During aftercare sessions, caregivers assess how each family member is doing. They watch for signs of overload, depression, anxiety, or stagnant grief. If necessary, they provide referrals to specialized support services such as a grief counselor, psychologist, or spiritual counselor.

4. Information and support

Many parents are in a daze during the end-of-life phase. It's precisely then that it's difficult to understand what aftercare options are available. Caregivers explain what to expect, what support is available, and how the family can move forward during this difficult time.

resources
fa-tools

Practical tools

The emBRACE study examined how parents experience the loss and grief surrounding the death of their child, and what helps them. The results led to the development of practical tools, including videos featuring parents' experiences and aftercare conversations, information for parents, and guidance for healthcare providers. The materials were developed in collaboration with parents who have experienced this themselves, supplemented with the expertise of healthcare professionals.

Revision of the guideline on palliative care for children

The revised Palliative Care for Children guideline, which was revised in 2022, also includes a section on loss, grief, and aftercare. This section outlines, among other things, the components that aftercare/bereavement care should include. The Palliative Care for Children guideline provides professionals, parents, and caregivers with tools and a reference guide to further improve the care of children with life-shortening or life-threatening illnesses and their families.

Aftercare in the Pediatric Nursing teaching module

A specific teaching module has been developed on the psychosocial aspects of pediatric palliative care, which also addresses aftercare. This module is incorporated into the curricula of several (continuing) pediatric nursing programs: the Erasmus MC Healthcare Academy, the VU-Amstel Academy Amsterdam, and the Radboud Health Academy.

Psychosocial aspects training module

The letter from Neeltje Staats

Give parents time and opportunity to recover somewhat

Working on reimbursement for aftercare

Currently, there is no reimbursement available for families for aftercare consultations. The Dutch Healthcare Institute considers aftercare to be covered by the Health Insurance Act (Zvw) and the Long-Term Care Act (Wlz). In practice, however, there is no separate reimbursement for it. Current care rates usually allow for one or two consultations, which is insufficient for many families. Research shows that healthcare providers often provide additional aftercare on a voluntary basis. This is caring and valuable, but not a permanent solution.

Together with parents, advocacy and professional associations, and the trade association for integrated childcare (BINKZ), we are working on a clear definition of what constitutes good aftercare and the level of support families need. If this definition and scope are covered by insured care, we will advocate for appropriate reimbursement. This ensures that families can count on the aftercare they need after the death of their child, provided by healthcare providers they already know. These include not only medical specialists but also pediatric nurses in tertiary, secondary, or primary care settings, general practitioners, and other healthcare professionals such as physiotherapists.

Aftercare in trade journal

The scientific monthly journal Acta Paediatrica published a report that provides insight into the content of aftercare conversations between parents and healthcare providers (EN).


Aftercare in trade journal

Latest news

Revision of the Palliative care for children guideline

Kinderpalliatief Kinderpalliatief
Written on: 25 November 2022

The guideline bundles all knowledge on the topics of symptoms, decision-making and organization of care.

Today is a special day. The revised guideline Palliative care for children has been published. The guideline provides professionals, parents and caregivers with tools and a reference work to improve the care for children with a life-shortening or life-threatening illness and their families.

The first palliative care guideline for children was published in 2013. Evidence based and for the 1st , 2nd and 3rd line. In the years before, there were clear signs that there was a need for knowledge. Experience with palliative care for children was already being gained in all kinds of places, but this knowledge and experience was not easily shared, so that everyone had to reinvent the wheel. This came to an end with the 2013 directive.

The guideline bundles all knowledge on the topics of symptoms, decision-making and organization of care. Within these chapters there are all kinds of subchapters that show what is important to do and what is important not to do. The guideline provides guidance and forms, as it were, a new practice of evidence-based palliative care for children.

Input from parents

A lot has changed since 2013. New developments in the Netherlands and worldwide are given a place in the new guideline. The revision was created through close collaboration between healthcare professionals, researchers and parents. These parents played an important role. For example, they indicated which additions were necessary and they assessed the written texts. In this respect, the revised guideline clearly differs from the old guideline: parental input was already considerable, but this guideline has increased many times over. That's special.

Modernize and add chapters

The biggest change is that chapters have been added and some pieces have been modernized. An important addition is the chapter 'refractory symptoms', which includes palliative sedation and abstinence from fluids and nutrition. Refractory symptoms are physical or psychological symptoms for which treatment is not effective (sufficiently quickly) or is accompanied by unacceptable side effects. Think of dyspnea (shortness of breath, tightness of the chest), pain or delirium/restlessness. Partly as a result of a study among children aged 1-12 who receive palliative care, these two components have been greatly expanded and thus form an important stepping stone for careful action to take place.

In addition, a chapter on Advance Care Planning (ACP) and shared decision making, psychosocial care and aftercare and grief was added. Psychosocial care, attention for the entire family and aftercare is much more often used as regular care.

Doctors, nurses and parents indicated that the above topics needed elaboration. The new directive responds to that question. In addition, constant consideration has been given to the wish that the guideline should be easily accessible to other professional groups than doctors. And for parents and children themselves.

“The great strength of this guideline is that healthcare professionals and parents felt the need to pool knowledge so that it could also be used in practice. In addition, both the content and the creation are unique from an international perspective. In addition, it is really special that this guideline is linked to the project of the Individual Care Plan, where the translation is made of the generic knowledge from the guideline into a form that can be used by the patient. There is little point in drawing up a guideline if we have not also considered how it can be put into practice and how we can ensure that it works. A lot of thought has gone into this guideline.”

- Eduard Verhagen, pediatrician and professor of pediatric palliative care at the UMC Groningen


More information

You can find the new guideline here.

The guideline is a collaboration of more than 60 working group members in pediatric palliative care, parents and professional associations. The guideline was developed under the leadership of representatives from the Princess Máxima Center for Pediatric Oncology (chair Erna Michiels, coordinator Kim van Teunenbroek, Renée Mulder and Leontien Kremer), UMC Groningen (vice chair Eduard Verhagen), Stichting Kind en Ziekenhuis (Hester Rippen), IKNL (Brigitt Borggreve) and Knowledge Center for Pediatric Palliative Care (Johannes Verheijden).

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