CRIANÇAS E ADOLESCENTES COM NECESSIDADES ESPECIAIS DE SAÚDE (CRIANES) EM PAÍSES MEMBROS DA ORGANIZAÇÃO PARA A COOPERAÇÃO E DESENVOLVIMENTO ECONÔMICO (OCDE) E BRASIL: SÍNTESE DE EVIDÊNCIAS

Abstract

Background: Children and youth with special health care needs (CYSHCN) have additional needs that impose an increasingly high cost burden on families and countries.The vulnerability of this population group should be recognized and addressed by governments in the form of public policies. Objectives: To map the evidence on terminology, definitions, classifications, and public health policies for CYSHCN in member countries of the Organization for Economic Cooperation and Development (OECD) and Brazil. Method: Three scoping reviews were conducted based on the JBI Manual for Evidence Synthesis framework, and reported according to the PRISMA-ScR checklist and Population–Concept–Context (PCC) mnemonic strategy, irrespective of language or time frame.For the three scoping reviews conducted, two independent reviewers read article titles and abstracts, and subsequently their full texts, to screen literature sources.Results providing answers to the research question were presented in the formof figures, tables, and a descriptive text.The content concerning definitions related to CYSHCN was processed with IRaMuTeQ software for dendrogram and similitude analyses. Results: No record of public policies were found for most of the countries surveyed. The records available revealed differences in approach and methods, irrespective of care delivery level (primary, secondary, tertiary). Six classification schemes were found, originating from the United States, Chile, and Brazil, with the United States accounting for 50% of the output. Subgroups of CYSHCN with differing degrees of complexity were found, as were two populations of children and youth: those with social needs and those with disabilities.The sample consisted of 55 articles with different terminologies and 35 articles with definitions from OECD countries. Definitions were subjected to dendrogram and similitude analyses. Some articles failed to define the terminology adopted, or made use of variable, subjective definitions. Conclusion: Records involving national public health policies proved scarce in most of the countries surveyed, suggesting gaps in the provision of policies, compounding the vulnerability and lack of visibility of CYSHCN and their families.The wide range of terminologies and definitions may compromise the communication, understanding, and accuracy of research results.Improving consensus definitions may yield better results and optimize the use of resources in health care. A classification based on degrees of complexity can help plan and define where in the health care network the needs of these users can be met, allocating the necessary resources according to medical complexity to best cater for their current condition. Descriptors: Child Health; Terminology; Children with Disabilities; Health Policy; Review.