Growing up with a chronic kidney disease has a big impact on the life of a child. Daily activities become challenging, medicines influence their looks and behaviour, they have to eat differently, and they have to deal with uncertainties. The disease is intertwined in their daily life as well as the lives of all family members. Dealing with the practical, social, and emotional challenges requires adaptability and resilience of both the child and the child's family.
Nierstichting Nederland (the Dutch Kidney Foundation) started a campaign called Jonge Helden (Young Heroes) that aims to show the invisible struggles of children with kidney disease as well as their strength and perseverance. As part of this campaign, Reframing Studio and Emotion Studio explored how children with chronic kidney disease and their families can be supported in their daily life.
Together with Emotion Studio, we started the project by interviewing children with kidney disease, their families and their professional caregivers. We researched their challenges, emotions, needs and aspirations. A main finding was the identification of eight different roles a parent shifts between when taking care of their child: besides being a loving parent, they for example also have to take on the role of a nurse, a planner, and a coach. Each role calls for different skills and for a different interaction with their child. Furthermore, we discovered that most of the current interventions and services focus on practical roles, whereas support for social-emotional roles is missing.
Based on the research results, we developed several concepts: such as a tool that helps families involve their social environment with caretaking tasks to a service that connects families to other families in a similar situation. In several co-creation sessions with amongst others psychologists, teachers, dieticians, parents, and children we designed exercises that help children and their families to deal with social and emotional challenges that they encounter in their daily life. This 'resilience training for families' was selected for realisation.
The resilience training consists of playful exercises for children and their families that help them to feel empowered in their daily life. Step by step they learn to deal with both social and emotional challenges that impact their daily lives. The exercises cover six topics: (1) having worries, (2) dealing with annoying questions, (3) eating differently, (4) resting and recovering, (5) coping with anger, and (6) missing things in school. The exercises come with a coaching manual for parents that provides background information and extra guidance.
Families can download the exercises for free and print them out. Some clinicians have put the exercises in their waiting room or refer families to the website. For each topic there is a version available for the age group 4 - 7 and 8 - 12.