PhD defence V.W.G. (Vivian) Burgers

Below is a brief summary of the dissertation:

Due to the rapid developments in treatment options and accompanied increasing overall survival rates, an increasing number of adolescents and young adults (AYAs, aged 18-39 years at primary diagnosis) with an uncertain or poor cancer prognosis (UPCP) live for a longer period of time. In this thesis we identified AYAs with a UPCP as those with advanced cancer for which there is no reasonable hope of cure, indicating that they will die prematurely from cancer, but have no immediate threat of death. Given the unique age, developmental and disease characteristics of AYAs with a UPCP cancer prognosis, one can imagine that they experience different challenges than older adults with a UPCP and AYAs with a good prognosis. Given the gap in literature it is unknown how to best support these young people, let alone how to provide person-centred care for this unique group of patients. In the first chapters this thesis explored the daily life challenges, coping mechanisms and healthcare needs of AYAs with a UPCP. Furthermore, the challenges in clinical practice as experienced by healthcare professional were examined. A multicentre qualitative interview study was used. The last chapters documented the process of involving AYAs with a UPCP as partners in research. The findings in this thesis will act as input for the development of person-centred care for AYAs with a UPCP, taking into account their unique biopsychosocial perspective and needs, and the experiences and needs of the healthcare professionals.