‘The diagnostic consultation is such an important moment for families. By aligning as closely as possible with their needs, we can really make a difference,’ says Petra Buursma, health scientist and PhD candidate in the Grootenhuis group, who is defending her dissertation today.
What parents and children need during the diagnostic consultation
A diagnostic consultation is an intense moment for parents and children. In her PhD research, health scientist Buursma examined how patient-centered communication during this consultation contributes to trust, reduced anxiety, and better alignment between families and the pediatric oncologist. Her goal was to help families feel heard, supported, and well informed during one of the most difficult moments of their lives.
Patient-centered communication during the diagnostic process in children with acute leukemia
Patient-centered communication was studied using audio recordings of diagnostic consultations, interviews with parents and pediatric oncologists, and questionnaires about parental anxiety. Forty-six families participated in this study, which lasted four and a half years and focused on the diagnostic consultation for children with acute leukemia.
The key findings:
- Parents looked for support - Many parents tried to keep their emotions under control during the consultation. They preferred it when the oncologist responded to this in a warm way rather than directly asking about their emotions. Parents placed great value on practical information and on involving their child in the conversation, even at a young age. Otherwise, they wondered what their child understood from the consultation and felt responsible for explaining everything themselves.
- Pediatric oncologists constantly sought balance - They tried to provide enough information without overwhelming parents and offered reassurance where needed. Pediatric oncologists reported that maintaining this balance could be challenging, especially under time pressure and emotional strain. They prioritized information they considered relevant and helpful, with the aim of reducing the burden on parents.
- Pediatric oncologists integrated patient-centered communication well during diagnostic consultations - They asked questions, provided emotional support, and invited parents to share their perspective. This behavior appeared to be associated with lower levels of anxiety in parents.
- The child’s role in the consultation remained limited - Parents were actively involved, but children spoke little during the consultation.
- Recording the consultation for research purposes was generally well received - Parents and children did not mind that the consultation was recorded. Some pediatric oncologists did find it difficult to ask parents for consent, because they thought parents might find this uncomfortable.
From insights to concrete actions
Based on these insights, Buursma developed practical recommendations for pediatric oncologists. ‘I think it is encouraging that the findings from this research offer concrete opportunities to further improve care for families around the time of diagnosis.’ The recommendations will be incorporated into the training program at the Máxima Center.- Ask questions instead of making assumptions - Explicitly ask about the wishes of families to avoid well-intentioned but incorrect assumptions. The study showed that a pediatric oncologist’s impressions do not always align with the experiences and or needs of parents.
- Be transparent - Pediatric oncologists sometimes deliberately do not answer a question right away because they believe other information is more important at that moment. Parents appreciate hearing why their question is not yet being addressed. When this explanation is missing, it can create uncertainty. It helps when a physician briefly explains why a topic will be discussed later. This helps parents feel heard and better supported.
- Be aware of ‘double protection’ - When children and parents are present together, parents often focus continuously on what their child understands and feels. During the consultation, this can influence the way parents, children, and the physician communicate with each other.