Every 15 minutes, somewhere in Europe, parents are told that their child has cancer. Despite the considerably less pessimistic outlook at diagnosis compared to a few decades ago, cancer remains the leading cause of death from disease in children. Research and the results obtained are improving rapidly, but cancer treatment remains a very serious matter. The UZ Brussel is therefore participating with other university hospitals in the BOOST research programme, through which care providers want to better attune the care process to the needs of patients and parents and make it easier for adolescent cancer patients to discuss difficult issues.
“We see in practice that this communication is sometimes difficult. Parents want to shield their children from the harsh reality, and children try to spare their parents and sometimes play down what they are going through. Healthcare providers are also sometimes in the dark about what they can say to parents, what the patient wants to know or what they are struggling with. Patients often do not dare to talk openly about their experience of treatment, what could be improved or what they absolutely do not want now or in the future. Or they haven’t given it much thought.”
To remedy this communication problem, researchers at UZ Brussel want to set up a scientifically based communication strategy, in which they can better align the wishes of young cancer patients and their parents with the care they receive. The research programme is based on a Dutch example of early care planning, the IMPACT programme, in which researchers focused on getting people to think about and discuss their wishes and preferences for if their health deteriorates, as well as broader related subjects. “We drew our lessons from that and, with the developers of IMPACT, patients, former patients, parents and caregivers, we expanded the programme and applied it to the Flemish context,” says van Driessche. “We do both qualitative and quantitative research into how young cancer patients and their parents experience the disease, what worries and fears they experience, what provides relief and comfort, and how and to what extent they communicate about this with each other. We don’t avoid difficult subjects such as dying but discuss the future and the expectations of care.”
Results in October 2023
To scientifically substantiate the research, the scientists involved in BOOST are working with two groups of families, one of which is participating in the programme and the other of which is not. The families do not know in advance which group they will belong to. Both groups are asked a series of questions. The families who follow the programme will have three conversations with a trained conversation facilitator over the course of two months. Two of those conversations are held with the parent(s) and child together, and one takes place with the child and the parent(s) individually. To make the conversation easier, the facilitators use discussion cards. Participants decide for themselves which topics they do or do not want to talk about. Questions on communication about the disease, care and the future between parents, children and the paediatric oncologist among the BOOST patients are then compared with those of the families not in the programme. In addition, interviews will be conducted to solicit their experiences with the BOOST programme, to see what can be improved.
“To bring the study to a successful conclusion, we need about 80 families over the entire pilot project,” says van Driessche. “Of those, about a quarter are already on the course. So we are still looking for families who want to get involved. The results of the BOOST programme will be ready in October 2023. It is possible that the accumulated expertise gained through this will be translated to other complex chronic conditions.”
“Parents want to shield their child from the harsh reality; children try to spare their parents and sometimes play down what they are going through”
“We are still looking for families who want to get involved”
Are you the parent of a child with cancer aged between 10 and 18, or do you know someone?
Would you like to help us learn more about the communication needs of parents and young people and ways to improve communication about current and future care? If you are interested in participating in the BOOST study or would like more information, please email [email protected]
VUB and cancer research
VUB is an Urban Engaged University that is firmly committed to the fight against cancer through scientific research. Scientists from various fields – medicine, bioengineering, pharmacy, physiotherapy, psychology – work together on an interdisciplinary basis. Fundamental and clinical scientific research into cancer go hand in hand, which is why the UZ Brussel, VUB’s university hospital, is an important partner in research, therapy and care. More awareness about cancer is needed for its prevention and cure, while more awareness about scientific research benefits the search for remedies and patient well-being. VUB is therefore grateful for an initiative such as World Cancer Day on 4 February.
The VUB Foundation helps to secure financial resources for research. With the VUB Yamina Krossa Fund, the VUB Foundation supports breast cancer research and the development of a potential cancer vaccine by Professor Damya Laoui and her team (VUB-VIB). The VUB-UZB Paul De Knop Fund is another initiative, established by the former VUB rector who was diagnosed with melanoma shortly after his mandate ended. During treatment by Prof Bart Neyns and his team at the UZ Brussel, Paul De Knop underwent immunotherapy, a promising immune system-based cell therapy. As a grateful patient, he set up the fund to help more people in need of treatment, quickly and more affordably.