The terapeutic diagnostic itinerary of children and adolescents with cancer

• Grant number: 08/08556-0
• Support type: Regular Research Grants
• Duration: January 01, 2009 - December 31, 2010
• Field of knowledge: Health Sciences - Nursing - Pediatric Nursing
• Principal researcher: Regina Aparecida Garcia de Lima
• Grantee: Regina Aparecida Garcia de Lima
• Home Institution: Escola de Enfermagem de Ribeirão Preto (EERP). Universidade de São Paulo (USP). Ribeirão Preto , SP, Brazil

Abstract

Cancer is considered a public health issue in Brazil and in the world due to its high incidence and death rates; because of the high costs for its detection, diagnosis and treatment, as well as for the economic resources wasted from the decrease in the workforce potential. The diagnostic and therapeutic process of child/adolescent cancer does not involve only epidemiologic and biologic aspects. In the context of this disease, the social, emotional, affective, cultural, spiritual and relationship aspects are part of the experience. The concept of therapeutic itinerary and its different stages (pre-diagnostic, diagnostic, treatment, survival/cure and palliative care), with distinguishing signs and symptoms, is fundamental to comprehend the management of this process. The concept also regards the psychological, social, cultural, existential and spiritual dimensions, together with the organization of the health work and the impact of this work on the ones who carries it out. Therein, the studies found in the national literature are insufficient to comprehend the health care to children and adolescent with cancer that is being developed, as examples, the importance of early diagnosis; involvement of the family in the hospitalization process; family reorganization when facing the child/adolescent cancer; production of care not only in hospitals, but also in outpatient clinics, health units, support networks and at home; interventions that enlarges the diagnostic and therapeutic process in order to attend to the specificities of the triad child, adolescent and family; long-term care and follow-up management, instead of sporadic and tangential care; follow-up of the late effects in survivors; palliative care and valorization and defense of the quality of life. The researches proposed in this project, that has the diagnostic and therapeutic itinerary of children and adolescents with cancer as main theme, will allow the production of scientific evidences which will contribute to increase the comprehension of the care process, allowing for the proposal of a theoretical framework that covers the integration of knowledge and actions forming a comprehensive care, rather than attending only to the clinical and biological needs. From this broader context, the present project aims to comprehend the experience of the diagnostic and therapeutic itinerary of children and adolescents with cancer in order to establish knowledge that enables organizing extended health care practices. The organization of the objectives is proposed into four themes: diagnostic itinerary (subproject 1, 2); care (subproject 3, 6); survival/quality of life (subproject 5) and palliative care (subproject 4). Analytical categories, as technology, care and family will be used. The data collection will be done through observation and interview, completing with data from secondary source. In the analysis and interpretation of the empiric material, we assume that the human actions are based in the social meanings; that the products of the human mind include subjectivity, interests, emotions and values, and while describing and interpreting a phenomenon, we must concentrate and lean on the natural and social worlds that people inhabit. Among the interpretative approaches, we opted for the hermeneutics for placing the phenomena in a historical perspective, with its protagonists and institutions. The content analysis will be useful to identify values, judgments and peculiarities of the subjects and the ethnography for the interpretation of the phenomenon based in its cultural nature, according to each subproject. As these are researches involving human beings, we will follow the recommendations of the Resolution 196/96 by CNS. The results can contribute to enlarge the comprehension of the diagnostic and therapeutic itinerary through which children and adolescents with cancer, and their families, have passed. (AU)