The quality of life and death of children with a (very) severe multiple disability is surrounded by all kinds of dilemmas. Those involved – parents, caregivers, volunteers, other family members – often find it difficult to talk openly about this. The Wonder Labs method helps to do just that. "In Wonder Labs, the 'real meeting' is central."

Paula van Driesten, Liesbeth Geuze, Meggi Schuiling and Tamara Streng met by chance 2 years ago. Paula had just published the book 'Close to the end of a child's life', in which she reports on the last year of life and the death of her son Tycho in photos and short texts. Tycho had the rare Sturge Weber Syndrome and died when he was 13. “I couldn't speak properly that last year of his life. I couldn't anymore. To be able to express my emotions, I started writing and taking pictures. The book helped me deal with Tycho's death.' Paula is a care photographer, assisted communication practitioner and project leader and client coordinator in care for the disabled. Liesbeth is a lecturer and researcher at The Hague University of Applied Sciences. She is conducting PhD research into the experiences of parents of children with a (very) severe multiple disability. 'For example, that many parents find it difficult to discuss questions and doubts about their child's quality of life with care providers.' Meggi Schuiling is director of the Knowledge Center for Palliative Care for Children. Tamara Streng is a consultant at Vilans. Together they introduced the Wonder Labs method in the Netherlands.

Learning from someone's experience story

Liesbeth had come across the Wonder Labs method during her research. 'The method was developed by the Danish professor Finn Hansen. The method focuses on learning from someone's experience story. With the feeling, the emotion and the wonder that come with it. That really appealed to me, but also to Paula, Meggi and Tamara.' Because it suited the goal they shared: improving the collaboration between professionals, students and parents.

The Wonder Labs method

Many parents of a child with a (very) severe multiple disability have questions about their child's quality of life. This can also lead to doubts about the medical treatment. Parents see discomfort or suffering in their child. But talking about those doubts is often difficult for parents and caregivers. The treatment options and the quality of life and death are sensitive subjects. In Wonder Labs, parents, caregivers and students meet each other. They discover how to talk about these topics together. The starting point in Wonder Labs is the experiences of parents. The focus is on what all participants feel about the experience story. Together they explore what they don't know yet. There is room for wonder and innovation. And for deepening and real contact.

The Wonder Labs method can also be used for other target groups and themes.

Close reading and close looking

Under the supervision of Tamara and Paula, pedagogy students from The Hague University of Applied Sciences set to work with the method. First with a practical translation. The Integrated Child Care Networks, part of the Knowledge Center for Palliative Care for Children, also took part. Liesbeth thought along fully. 'For example, we looked at ways in which participants could get to know the experience story,' says Liesbeth. “The first is telling. Think of a parent who shares his experience story or a professional storyteller who tells an experience story.' 'We added 'close reading' and 'close looking' to this,' says Paula. 'Those are ways of extracting the experience story from text or image.'

The value of good listening

The 4 initiators then put the method into practice 4 times. And that paid off a lot. “We saw that care providers in Wonder Labs gained more insight and a feeling for the perspective of the other person, that is, the parent,” says Meggi. 'They also experienced the value of listening carefully and making deeper contact. Parents felt taken seriously and heard. An equal relationship, in which professionals and experienced parents work together, is an important basis for appropriate care.'

Meeting each other as human beings

This equality is an important element in the Wonder Labs method. Paula: 'Wonder Labs focuses on 'real encounters'. Care providers, parents and students meet each other as human beings. If you don't automatically jump into your role of caregiver or parent, you can start to see each other. Parents can then see, for example, what is happening at the care provider. Humanity is an important condition for equality.' 'In Wonder Labs we therefore consciously take our time', adds Liesbeth. 'There is peace and therefore room for deepening. Barriers are falling. Being human is important, it's about learning from the other, from his experiences and motives.'

Connection

'It's valuable if you can teach students and young professionals the importance of making real connections and being human,' says Meggi. Or rather: to all professionals! That they learn that 'real' connection is essential.' 'Not just for families with a child with a (very) severe multiple disability', concludes Liesbeth. 'But in all complex care situations. So that quality of life and death can arise.'

View the Wonder Labs manual.