Vulnerability and resilience of children with a chronic illness

Meet… Emma Berkelbach van der Sprenkel

In stressful periods, some children turn out to be more resilient than others. Which factors contribute to children’s resilience during stressful events? And how does this work in a more vulnerable group, such as children with chronic illnesses? ZonMw is funding a research project in which these questions take centre stage. Emma Berkelbach van der Sprenkel will start her PhD track to find the answers to these questions this summer.

What are you going to research?

“The goal of the research is to gain more insight into the vulnerability and resilience of children with chronic illnesses. I'll try to find answers to questions such as: How does a big stressor, like COVID-19, influence the well-being of children with chronic illnesses? What are factors that contribute to resilience? Which children would benefit from additional support? And how do we include those children in the decisions on what help is best for them? In order to find answers to these questions, we compare children with and without chronic illnesses. We research what the challenges and problems are that come with growing up with chronic illnesses, and what the consequences of COVID-19 were for this group of children.”

How do you research this?

“In 2016, the Wilhelmina Children's Hospital (WKZ) started the PROactive Cohort Study: a longitudinal cohort study, in which children with chronic illnesses and their parents annually complete questionnaires on all kinds of subjects involving well-being and functioning. The questions are about quality of life or fatigue, but also about social or emotional skills. With the answers from these questionnaires, we can see how these children are doing over longer periods of time; including around and during the corona pandemic. Earlier research showed that growing up with a chronic illness is connected at a group level to reduced psychosocial functioning and reduced well-being. As every child is unique, we will also zoom in from group level to an individual level. One particular child can handle stressful events better than another child. What are the risk factors and which factors are actually protective? With this knowledge, we can then think on how we as caregivers can help children even better in the future.”

Why is it important that this is investigated?

“The Verweij Jonker Institute proved in 2018 that over 1.3 million children in the Netherlands are growing up with chronic illnesses. Because options for treatment are increasing, children with chronic illnesses are growing older than before. They'll not only have to (learn to) deal with the illnesses, but also discover the impacts the illnesses have on their functioning and experience setbacks that come with the illnesses. We know children with chronic illnesses are more vulnerable as a group. Some of the children develop more psychosocial problems and could benefit from additional support. Others thrive or actually develop fewer problems. I think it's impressive to see that despite illnesses, children are often resilient. We can learn very much from that, such as finding starting points for interventions.”

I think it's impressive to see that despite illnesses, children are often resilient.

What is characterising for this research?

“Interdisciplinary collaboration. The topic is the result of an intensive collaboration between the strategic spearheads Child Health of WKZ/UMCU and Dynamics of Youth of Utrecht University. Several other parties are involved in the current project, including patient organization Stichting Kind & Ziekenhuis and the Institute for Positive Health. Besides the WKZ, the research is carried out in the Haaglanden MC and the Jeroen Bosch Hospital, so the findings from the PROactive cohort will also find their way to children with chronic illnesses in other hospitals. The research is focused on ‘deciding together’ and ‘the right healthcare in the right place’; very current themes that make collaboration between the academic and peripheral hospitals necessary. It's beautiful how this multidisciplinary collaboration comes about. I'm convinced that you amplify each other by collaborating with various parties from the care industry, in order to keep improving healthcare for children with chronic illnesses.”

What do you hope to discover in your research?

“I hope that we'll better understand what makes children with chronic illnesses vulnerable or resilient, for whom and when support can contribute, and which ways for this are the most suitable. We hope to find starting points for the use of existing and the development of new (preventive) interventions. A kind of blueprint to help and support children with chronic illnesses on a ‘bio-psychosocial level’. This way, we want to ensure that these children - despite the challenges that come with chronic illnesses – grow up as healthy as possible.”

Emma enrolled in University College Utrecht, where she studied medicine (Pre-Med) and psychology. After that, she enrolled in the Master’s programmes Clinical & Health Psychology and SUMMA, a four-year Master’s programme to become a medical doctor and clinical researcher. She started her research career in WKZ/UMCU - where she is currently working as a paediatrics resident (ANIOS). Emma has a big interest in both paediatrics and psychology. This summer, she will start her PhD track that combines these two fields of interest.