What are the unmet care and support needs of children living with a parent diagnosed with advanced cancer: a mixed methods study using qualitative interviews, a quantitative survey and big data

10-2020 to 09-2023

A significant part of the people diagnosed with incurable cancer, have young children. The last couple of years, attention for the quality of the care for these patients is clearly increasing. A positive tendency that, more recently, also applies to their caregivers. As of late, there is a growing awareness that due to the increasing group of people with problems, support outside of the professional environment is needed. The wider social circle can play its part, by granting informal support to the families that are involved. The patients’ children, however, seem to have specific problems that can show up until after the decease. However, high quality research on the care needs of these children is scarce. The same goes for efficient care interventions. That is why in this project we will develop a tool that can measure the care needs as well as their formal care and the informal support, followed by a multicenter questionnaire study (in four hospitals) among children of parents with advanced cancer
diagnosis, and a study on population level, using administrative data that compare the health care for these children with the care that is given to children of parents who don’t have advanced cancer. By
doing this, we can obtain insights into the care needs, the formal care and informal support, and also about the existing risk groups. This knowledge can help us to develop interventions and tools that tackle the unmet care needs of this somewhat neglected group.

The Research Foundation – Flanders (FWO)