The Experience Meter offers parents of children who need palliative care the opportunity to share their story and experiences in care. In doing so, they contribute to improving pediatric palliative care in the Netherlands.

How does the Experience Meter work?

The Experience Meter uses the Sensemaker methodology. This method has been developed to get as close as possible to the experiences people have with regard to a certain subject, in this case: pediatric palliative care.

Very open questions are asked with which a story can begin. Parents are free to name whatever they want. It really is their own story, although it is a short and concise story. The interpretation only comes afterwards and it is given by the parent himself.

Friso Gosliga has been involved in the development of Sensemaker from the start, he says: "The unique thing about Sensemaker is that good quality information is retrieved on a quantitative scale. Most systems can only retrieve one of the two. Or retrieve a lot of general information in a large-scale investigation, so that you miss some signals. Or obtain good, targeted information with a small-scale survey that is completed by a limited number of people. Sensemaker can do both: a large-scale, high-quality investigation. In addition, the stories that are shared are not interpreted by an external professional, but precisely by the narrator (the parent) himself. This gives the shared experience even more meaning. And where in a mass study the averages are read and the deviating signals are ignored, Sensemaker picks up this unique information .”

Why does the Dutch Center of Expertise in Children's Palliative Care use Sensemaker , what is the added value?

Friso: “In addition to the fact that you can reach people on a large scale with this method and still conduct high-quality and representative research, the Knowledge Center was looking for a way to collect real experiences so that they can learn from them. They were looking for the most direct line to parents and their experiences, without noise in between. Thanks to the Sensemaker method, the story of the parent with experience goes straight to the Dutch Center of Expertise in Children's Palliative Care. 'From practice to policy.' By sharing their stories, parents actually help to further optimize the policy on pediatric palliative care. An enormous added value!”

The Experience Meter has completed the pilot phase. What are the results of this?

“During the pilot, 17 experience stories were received. All these stories have been carefully read and analysed,” says Carolien Huizinga, policy development project officer at the Dutch Center of Expertise in Children's Palliative Care. “A total of 15 themes emerged from this analysis. Three main themes were selected from this: recognition – communication – organization of care. Dutch Center of Expertise in Children's Palliative Care will work with these themes. For example, they wants to ensure that pediatric palliative care becomes a permanent part of training for doctors, it wants to discuss the topics indicated by parents with, for example, health insurers, municipalities and politicians, and the Dutch Center of Expertise in Children's Palliative Care wants to use this input to ensure that current policy is tightened and, where necessary, new policy is introduced. In addition, the feedback on the methodology itself was used to further refine the Experience Meter in terms of content and design.”

What happens to the stories parents share in the Experience Meter?

Carolien: “If parents give permission, their story will be shared with other parents with a child who needs palliative care. A story can offer parents in the same situation a lot of support and recognition. The experiences are also shared with healthcare professionals and politicians. In this way, the Dutch Center of Expertise in Children's Palliative Care can hold up a mirror to them and show them what is going well and what can be improved, in order to realize improvements in pediatric palliative care even faster.

That is why we warmly invite parents to share their experiences with us, as often as they wish.”

The Experience Meter can be found at: https://www.kindzorgervaring.nl.

To ask? info@kinderpalliatief.nl