There is a clear need for knowledge, information and guidance on this. During the introductory lesson on pediatric palliative care, students always have questions such as "what do you tell a child?" and "how do you approach the conversation about grief and loss?" but also "where can the parents go?" and "how do you fulfill the wishes of parents and child?". During the introductory lesson there is no room to discuss these issues in detail and to go into them in depth.

In the meantime, a number of (further) training courses in (child) nursing have already embedded the teaching module psychosocial aspects of pediatric palliative care in their curricula. Namely: the Care Academy Erasmus MC, the Vu-Amstel Academy Amsterdam and the Radboud Health Academy.

Guest lecturer explains

Guest lecturer Agmar Butcher, affiliated with the Knowledge Center for Palliative Care for Children, provides these guest lessons and is happy to talk about them:

“The exact content and depth of the lesson varies slightly,” Agmar explains . introduction lesson - connecting theory to practice . This makes it an impactful lesson, because the experiential story is central and the theory is interwoven around it".

In addition to the knowledge and theory about loss and grief, the lesson also deals with case studies and/or attention to practical experiences of the students. In addition, Agmar pays attention to awareness of its own actions regarding these subjects.

The themes that are covered are:

• (psychosocial) guidance during the palliative process and towards death.
• the impact on the entire family system.
• advance care planning with regard to psychosocial aspects
• bad news approach
• a long palliative phase versus a short terminal phase and what that means for the psychosocial aspects

Many practical tips

In the lesson, many practical tips and advice are given on how to start the conversation, what nurses themselves can do and parents can offer when it comes to tangible memories and building blocks for later. An example of such an assignment is the 'Kletsspot' with question cards developed by NIK Utrecht. Various propositions and dillemas are described and students discuss them in groups and plenary. "It is nice to see what is released and what happens in such a group."

It is also very important to discuss matters. Agmar explains: "If you enter into a conversation with attention and empathy about topics such as imminent death, loss, mourning and death, the conversation is less charged." "Make it negotiable", Agmar teaches the students. "Because by not raising or discussing certain topics yourself, the other person sometimes doesn't dare either. It is good to realize that parents choose their own moment when they are ready to discuss certain themes. In addition, attention is also paid Involving the siblings in the palliative process, especially after death, is very important, as it is important to match the age of the child and the stage of mourning he/she is in. Furthermore, aftercare is extremely important for recovery care."

Wish

Agmar has another wish for the future: "It would be nice if more hours were made available within the training module to give the psychosocial domain within child palliative care the necessary and correct attention. Ultimately, it should be standard in the training. "

Interested?

Interested in a guest lesson on psychosocial aspects of pediatric palliative care? Or would you like to discuss what we can do for your study programme? Please contact the training coordinator Marjolein Koot ( m.koot@kinderpalliatief.nl ).