The impact of chronic disease on families

What was the challenge?

Having a kidney disease has a huge impact on the life of a child, but also on the rest of the family. A kidney disease is complex: Next to the resulting physical complaints, it is also intertwined in one’s daily life and therefore influences the social-emotional lives of all family members. The Dutch Kidney Foundation (De Nierstichting) and the Dutch Kidney Patients Association (Nierpatiënten Vereniging Nederland) wanted to research what kind of information or support could aid young kidney patients and their parents in coping with the disease in daily life.

What did we do?

By doing in-depth research with both parents of kidney patients and professional caregivers, we mapped what kind of needs both the children and their parents have regarding support and information provision, and then designed concepts to meet these needs.

What did we discover?

We found that there is a wide range of information and support for the medical aspects of the disease, but not for the non-medical problems that families face in daily life, while this is where support is needed the most. By visiting young kidney patients and their families in their homes and doing in-depth interviews, we mapped the influence of the disease on their daily lives and discovered where there were opportunities to support in this.

He’s just a kid, he should be able to go crazy sometimes.

Mother of kidney patient

What did we deliver?

Together with design agency Reframing Studio, we translated the insights from the research phase into concrete solutions, which were later evaluated with professional caregivers, parents, and young kidney patients. One of these solutions was developed further: the ‘Young Hero’ training (Jonge Helden training). The main goal of the training is to make sick children more resilient. In close cooperation with child psychologists, we created different training courses for two age groups with fun assignments that help empower these children. The training courses were extensively tested with children from within the target group. In addition, we developed a coaching booklet for parents, with tips and tricks for the different courses.
The ‘Young Hero’ training can be found on

Service design

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