PERCEPÇÃO DE PAIS QUE VIVENCIAM O CÂNCER DE CRIANÇAS E ADOLESCENTES, SEM POSSIBILIDADES DE TERAPIA CURATIVA

Abstract

This study aims to know the perception of the family of the child and the adolescent with cancer without possibility of curative therapy, in relation to the feelings and experiences, from the process of illness to, particularly, the care at the end of the patient's life. We defined this research as qualitative, since it used the semi-structured interview as the main data collection procedure. The interviews were conducted with parents of children with cancers at the time they attended the hospital for follow-up and consultation of their children. The research was developed at the Ambulatory of Oncology and Hematology of a hospital of great size and high complexity, located in Curitiba, Paraná State. The outpatient clinic is a reference for pediatric cancer treatment throughout the country. A total of 7 parents of children and adolescents with no possibility of cure were enrolled in the study. In addition to the information obtained in interviews, the data present in this dissertation were obtained by consulting the available medical records. Through the analysis of these elements, it was possible to know the perception of the parents and the feelings involved during the evolution of the disease. The experiments were summarized into three categories - composed of subcategories for better understanding. The first category presented is "Knowledge of the disease by parents", having as subcategories: Moment of diagnosis and feeling experienced; And Acceptance of incurability. The second framework is "Support Network", with subcategories: NGOs, Family, Money, Friends, Church and Social Network. The third is "Reconciling the new routine", with the subcategories: Family adaptation, Social life, Work relations. In the category "Knowledge of the disease by the parents" it was possible to verify that the families undergo a process of physical and emotional changes due to the illness, such as: impotence, anxiety, anxiety, fatigue, guilt, suffering, hopelessness, among other feelings. The sense of denial is also present at this stage, many are unaware of the disease as a child, and become aware from the moment the child begins treatment. However hope has always been reported by parents. In the category "Support Network" we find that they are of extreme importance in the care of children and adolescents with cancer or chronic diseases. This service should be expanded to provide support and support to both patients and their families. In the category "Reconciling the new routine", we evaluate that social life becomes limited: the routine becomes the child, the hospital and some moments at home. Often, parents can not dissociate themselves from their child's illness, forgetting their own lives. Therefore, it is extremely relevant to know all the difficulties faced by those responsible for children, as this is a way to facilitate care and attention with the patient.