Study about chronic conditions in childhood: suport for nursing care

Abstract

The increase in chronic conditions has caused changes in the morbidity and mortality profile of the child and adolescent population. These impose alterations in the contents of the national public health agenda and require approaches that are distinct from what is currently proposed by public health care policies. The explanations found in Brazilian literature are still insufficient to understand health care in chronic conditions, which is now taking the form of, for example, family participation and reorganization to cope with the chronic condition; care production not only in hospitals, but also in outpatient clinics, basic health units, home support networks; interventions that broaden the diagnostic and therapeutic process, attempting to attend to the singularities and specificity of the child, adolescent and family triad; care that is no longer sporadic and tangential but involving management and long-term follow-up; valuation of citizenship and defense of quality of life. These dimensions of child and adolescent care are contemplated in the WHO report on innovative care for chronic conditions. According to WHO, chronic conditions include apparently unrelated problem, such as: non transmissible diseases, mental disorders and structural disabilities. What these problems have in common is that they require continuous management for years or decades. The existence of a chronic condition in children or adolescents affects the entire family. Nursing research on chronic diseases is almost exclusively based on the biomedical research model. However, this tendency is gradually expanded by means of different approaches (phenomenology, anthropology, psychology, interaction); various diseases (cancer, diabetes, cystic fibrosis, infant rheumatoid arthritis, renal diseases); particular aspects of the disease (pain, progressiveness); responses to the disease (coping, management, uncertainty) and social consequences of the disease (stigma and quality of life). The general objective of this project is to study chronic conditions in children and adolescents, with a view to constructing knowledge to support the organization of broader care practices. We propose to organize the specific objectives in three themes: care production (objectives 2, 4, 8 and 9); family participation (objectives 1, 5, 6 and 7) and quality of life (objective 3). We will use analytic categories discussed in the Study Group on Child and Adolescent Health, such as: technology, care and family. As qualitative and quantitative approaches are not exclusive, data will be collected as follows: secondary source, observation and interview, separately or in combination. For discussions, we will use hermeneutics when phenomena need to be situated in a historical perspective, including their protagonists and institutions. Thematic analyses will be useful to identify the subjects’ values, judgments and particularities within a more comprehensive approach. As this research involves human beings, we will follow the recommendations of Resolution 196/96 by the National Health Council. The results can contribute to reach a broader understanding of chronic health conditions in children, adolescents and their families. (AU)