The Quality of Life of Children with Advanced Cancer: The Perspective of Children and Parents.

Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little empirical data on this topic. In order to identify dimensions of QoL in this context, we have, in a previous study, interviewed professionals who accompanied children with advanced cancer. The results highlighted the traditional dimensions of physical, psychological and social well-being, as well as original dimensions such as pleasure and the present moment. However, to provide an effective understanding of QoL, it is essential to capture the perspective of children and parents. This study aims to describe the QoL in the context of PPC in oncology according to children's and parents' the representations. Using a qualitative research design, we interrogated, through semi-structured interviews, children with advanced cancer treated at the CHU Sainte-Justine Hemato-Oncology department and their parents. The method of inductive thematic analysis was selected to lead a thematic tree of QoL dimensions. Children and parents confirmed the psychological, social and physical well-being dimensions. They also validated the dimensions reported by the professionals while reformulating them in a way that is more representative of their experience. These dimensions' description clarify care criteria allowing to maintain and improve the QoL of children with advanced cancer. Such clarification provides a framework of practice suitable for interdisciplinary communication. It is also useful for the development of a QoL assessment tool as well as for the development of common care goals.