Abstract
Introduction - The optimization of cancer care in adolescent or young adult patients (AYA) requires the contribution of the patients themselves, as they are builders and custodians of the experience that concerns them. A more multidimensional listening to these patients guarantees a better quality of life, in response to their specific needs. The present article describes how a congress between doctors, psychologists, nurses and AYA patients can be the context of exploration and collection of this important contribution. By offering these patients the opportunity to express thoughts, emotions and needs in terms of quality of life verbally and freely, such a congress becomes a privileged place for observation and analysis even of macro-group dynamics that otherwise would not have the possibility of making themselves visible. Methods - Through a qualitative research design, 35 Italian cancer patients (in active treatment or follow-up) aged between 18 and 24 years were involved in a plenary discussion during a congress (Rome, 11 November 2019). The structured interview asked them to express themselves on the issue of quality of life connected to the relationship dynamics with peers. The 55 responses collected were then subjected to thematic analysis. Results - The young people who attended expressed precise and extensive considerations regarding friendships and the value of interactions with patients of the same age. What emerged enabled to highlight the need of these patients to keep active the social group of reference and in particular the identity of each within it. This is significantly connected to the self-perceived quality of life, both during active treatments and afterwards (a phase described as complex and tiring). Discussion - The described experience underlines the importance for AYA cancer patients to express their reflections on health and quality of life issues. The relational dimension, especially regarding peers, is significantly connected to this, to one’s perception of identity and to the configuration of the “disease” reality, so health personnel are required to protect and attend to this aspect as one of the priorities of the treatment path. The setting offered by the congress also allowed personal expression even in the face of a group recognition that moves the subject from the Ego to the Us.