Pediatria oncológica: o olhar dos profissionais hospitalares em torno das vivências das crianças, adolescentes e seus pais

Abstract

Epidemiological data on pediatric oncology reveal that scientific advance in this arena has greatly increased the chances of a cure. With the gradual increase in survival rates, there is no longer an exclusive focus on the imminent death of the child, and pediatric cancer is now considered a chronic disease. For that reason, the authors recently developed an exploratory study focused on the coping and adaptation processes to pediatric cancer. The phenomenological dimension and the psychosocial effects of the oncological disease on pediatric patients and their families were explored; more specifically: the difficulties, needs and concerns emerged in different stages of the processes (i.e. since the diagnosis to the, in some cases, the terminal stage). Concomitantly, the study aimed to identify the existing interventions in pediatric oncology services regarding these dimensions, as well as its contributions to the child’s and family’s well-being. Thirty semi-structured interviews with medical, social, psychological and educational staff that follow these families at internment and ambulatory services (at Hospital de S. João and Oporto’s Portuguese Institute of Oncology) were completed. Three focus-groups with hospital clowns from Operação Nariz Vermelho were also accomplished. Once again their perceptions regarding these children and family difficulties, needs and worries were examined. The decision for these professionals as main targets of the study resulted from ethical issues: the respect for the emotional distress and suffering of the protagonists of this process: the child/adolescent and family. After the interviews transcription, data were (still) qualitatively analyzed via WebQDA. In this communication preliminary results are presented.