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Supporting seriously ill children and their families

Authors: Amissa Oude Egberik, Ayla Kruger, Doha Jarbandhan, Emelie Döring, Evelien van Winden, Julia van Gilst
Educational institution: The Hague University of Applied Sciences
Client: The Hague University of Applied Sciences, Vilans and Knowledge Center for Palliative Care for Children

Issue

We set to work on a pedagogical issue from practice that focuses on the care and support of seriously ill children and their families, in which the four living areas are central. There are four central life domains: medical, development, social and security (MKS, 2002). These four life domains are discussed in the experience stories that the parents will bring to the Wonder Labs. During the Wonder Labs, we look at how professionals can improve care in these areas. Within Wonder Labs, learning is based on experience stories. These are experiences of parents who have or had a seriously ill child (healed or deceased). Healthcare professionals, students and others involved in the care of the seriously ill child and the family can learn a lot from this. As a result, action and care can be further developed and improved. It is therefore important to conduct research to develop and design new ways of sharing experiences with each other.

Research question

'How can the effectiveness of 'Wonder Labs' be increased by means of new methods to look for depth in stories of experience and to contribute to the pedagogical climate/issue?'

End product

The end product consists of three methodologies; podcast, film and diary. Each method is elaborated on the basis of a script. See appendix 1. The scenarios consist of an initial phase in which the objective, rules and division of roles are described. Then the activities are written out intertwined with the five rooms of Wonder Labs. Subsequently, the working method (step-by-step plan) is described, so that the activity can be carried out in practice. Finally, it is described how the pedagogical climate is acquired within the meetings.

Advice

The new methods of increasing the effectiveness of the Wonder Labs and sharing the experience stories are through a film, a podcast and a diary. By having had contact with our contact person from Vilans several times, we have come up with these ideas that are in line with the Wonder Labs, as they are now. The new work forms therefore fit in well with the methods used for this. We feel that, through these new methods, new ways of thinking can be set in motion. This gives the Wonder Labs participants the option to see what would work best for them. One participant will benefit more from a podcast and the other participant from the diary. This can therefore be given attention prior to the meetings. We are pleased that we have been able to offer a certain diversity in this regard. Our recommendation is therefore that Wonder Labs can start using our three methods: the diary, the podcast and the film. Prior to the meeting, the preferred method can be discussed with the participating group. By working in this way, we hope that there will be more openness within the participating group and that there will be even more room to share stories in their own way. In addition, these methods are designed to look at the experience stories in a different way and to arrive at new perspectives and insights.

The main question not only includes the question of looking for more depth in the experience stories, but also the way in which Wonder Labs can contribute to the pedagogical climate and the pedagogical issues. We think it is important that Wonder Labs guarantees a good pedagogical climate in which the participants feel safe and dare to say more. This is not only important for sharing experiences, but also for showing what a good pedagogical climate looks and feels like. The care for the sick child is not only medical care, but also educational care.

Our recommendations for a good pedagogical climate are therefore; a quiet environment where the experience stories can be told, people treat each other with respect, the program is clear to everyone, this can provide peace, there is a sensitive responsive response to each other and participants support each other. In addition, it is also important that within the Wonder Labs there is an eye for the pedagogical issues from the experience stories and that they can also be identified. To support the clients in this, we have made a step-by-step plan as a handle and incorporated it into the scenarios.