Skip to main content
Home  › ... Experiences › Experience meter for parents

Experience meter for parents

Because we can learn so much from you as a parent. As a parent of a terminally ill child, you go through a lot. We are curious how you experience or have experienced the care. And what that means to you. We appreciate it if you share your experiences. It holds up a mirror to us and shows what is going well and what could be improved, both at home and in the hospital. In this way you contribute to improving pediatric palliative care in the Netherlands.

Experience meter for parents

I want to share an experience, now what?

You share your story with us anonymously. Of course you can give permission to share your experiences anonymously. If you give permission, we will publish your story (anonymously) on the website . Here you can read stories from parents about how they experienced the care for their terminally ill child. About what is going well and what could be improved. And what that means for them.

"I think it's a very nice way to share your story and write it off, while you also have the idea that it won't be lost, but will find its way to a place where something will be done with it." – quote from a parent

On this site your experience will be read by fellow sufferers; parents who also have a child with a life-threatening or life-shortening condition. After all, your story can offer a lot of support and recognition. We also use your experiences to better meet the needs of families like yours.

We also share your story with healthcare professionals. This way we can hold up a mirror to them and show them what is going well and what can be improved. We also use your experiences as input to see which topics should be given priority and which we should therefore work on as soon as possible. And, where necessary, we involve politicians to realize improvements in pediatric palliative care even faster.

So we really do something with your story!

A few examples:

  • In 2018, ' patient journeys ' were created from experience stories, in which issues and bottlenecks emerge. After presenting this report to the Minister of Health, Welfare and Sport, the national work agenda for palliative care for children was drawn up on that basis.

  • Other stories showed that more attention is needed for psychosocial care. Partly because of this, the subsidy scheme for grief and loss counseling for seriously ill children and their families was created. The basic training for pediatric palliative care has also been revised and more attention is now being paid to psychosocial and spiritual care .

  • All stories make it clear that the importance of communication and cooperation must be emphasized. Every child and every family requires a different approach. More and more attention is paid to this during training and on the work floor.

How does it work?

Go to the Experience Meter and choose which of the two open questions you want to answer. It helps to choose the question that evokes a concrete memory. Describe the event in your own words. Try to substantiate your opinion or vision. This is followed by a few questions with which you can give meaning to your story according to the Sensemaker method. You then choose whether you want to share your experience (anonymously).

"As a parent it's nice to be able to tell your story in as much detail as possible, it helps me organize my thoughts."
– quote from a parent

Share as often as you want!
Share more stories? Please even! Fill in the Experience Meter as many times as you like. It is important to tell one event at a time. After answering a question and going through the steps you can click on 'share another experience'. You can also do this at a later time. If you choose to store cookies, static data such as diagnosis, hospital, region, etc. will remain. You don't have to fill that in again with a new story. Do you have questions about the Experience Meter? Then look at 'frequently asked questions.

The Experience Meter uses the Sensemaker methodology. Read more about this method in an interview with Friso Gosliga in the news item ' The Experience Meter: makes parents' experiences relevant to policy'.