How should parents treat their child

"Parents should be able to think in peace and with time which treatment they want for their child"

Dear Ms. Fuehrer, how can you help the parents of seriously ill children?

Monika Führer: Through our work, the parents concerned should feel heard, understood and well prepared for crises. Above all, we want to reduce the fears and obstacles that prevent parents, doctors and other professionals from talking openly and confidently about a child's serious illness, the prognosis and the opportunities and risks of medical measures.

In your research project PREPARE you developed a concept that should help these parents to make decisions.

The program aims to support parents in planning medical treatments for their critically ill child in advance. You should be able to calmly and with time consider which treatment you would like for your child if the disease progresses or becomes life-threatening. This can include, for example, formulating wishes for the last phase of life together. For many parents it is also important that not only medical questions are discussed, but also psychosocial and spiritual approaches are included.

How did you design your program so that you can achieve this important accompaniment?

The program has a modular structure. It can be used and combined flexibly. This makes it possible to cater to the very individual needs of the different families. A central point of the program is to start where the parents are at the moment and to repeat offers of conversation regularly.

How is your program going?

The program begins with the phase of getting to know each other between the family and the interviewing professionals. This phase is followed by the preparation of the actual advance planning process. Here the parents receive important information about the course and the goal of the discussion process. The following modules can be used flexibly. For example, the “view of the child” module enables parents to work out their child's abilities and difficulties in discussions with the specialists and to investigate what constitutes quality of life for the child and the family. The module, in which wishes for end-of-life care are discussed, is only used when parents feel ready to talk about these topics.

The program also includes materials for parents, for example a parents' diary, in which they can record questions, thoughts and worries and collect the minutes of discussions that they have created together with the specialists. But the sick children and adolescents themselves can also be included in the decision-making process. From our point of view, it is important that children and young people are given the opportunity to speak for themselves and ask questions in a way that is adapted to their age and development.

You have involved many different actors in the development of the program, in addition to specialists, for example, parents who have lost their children.

Even if the specialists in the Children's Palliative Center were able to gather a lot of expertise and experience in advance planning with seriously ill children and their parents, we were aware that we wanted to include the perspectives of all those involved in the development of the program. The perspective of orphaned parents was particularly important to us. We were very impressed by the willingness of the parents to contribute their own personal experiences and thereby help other families with seriously ill children.

On the other hand, we have placed value on including different specialist disciplines: specialists who conduct advance planning discussions and create documents together with the parents, but also specialists who are confronted with these documents in their everyday work and are supposed to implement them, such as social pedagogues and carers in integrative schools and kindergartens or emergency doctors and intensive care physicians.

The program also includes a training concept for professionals. What feedback do you get from the specialists?

The feedback from the specialists was consistently positive. You will find it helpful to be able to fall back on a structured guide and to receive specific assistance and tools for conducting discussions. And they really appreciate the flexibility of the program, as it creates the freedom to cater to the individual needs of families.

The first families have been able to take part in the program for a few months now. Can you already assess whether the program can help those affected in this very difficult situation?

The first families have given us very positive feedback. Often they are initially amazed at the amount of time healthcare professionals take to get to know the child as a person and to leave room for the parents' fears and worries. They experience it as positive that they are supported by the specialists in working out and appreciating the child's resources and quality of life. In the course of the process, they find this common ground to be very helpful, especially when it comes to difficult treatment decisions. The parents also see the special forms of interviewing as very positive: They feel that they have heard from the specialists and that they are properly understood.