Hull, Egmar LongoCampos, Taynah Neri Correia2020-05-122020-03-09CAMPOS, Taynah Neri Correia. Minha opinião importa: considerando a percepção dos pais para medidas de desfechos de crianças com síndrome congênita do zika. 2020. 95f. Dissertação (Mestrado em Saúde Coletiva - Facisa) - Faculdade de Ciências da Saúde do Trairí, Universidade Federal do Rio Grande do Norte, Natal, 2020.https://repositorio.ufrn.br/jspui/handle/123456789/28968Introduction: The outbreak of the Zika virus (ZIKV) in Brazil had devastating social, medical and financial consequences due to the emergence of the congenital Zika syndrome (SCZ). A new health condition that caused severe microcephaly, abnormal brain development, congenital anomalies, epilepsy, hearing and vision problems. Researchers and clinicians are following the children to understand the impact of the syndrome on child development, functioning and disability, but the measured results are heterogeneous and it is not clear how significant they are for families and children. There is still no consensus on which measures are relevant in SCZ. It is recommended that the family be involved in the development to ensure that the research process is appropriate to the patient's needs. Objectives: To identify parents' perspectives on relevant areas of functioning and disability that should be included as outcome measures for children with SCZ, guided by the International Classification of Functioning, Disability and Health (CIF). Methods: Qualitative, cross-sectional study, using the focus group method, developed in rehabilitation centers in two Brazilian states, RN and PB. 32 parents and / or caregivers of children with a confirmed diagnosis of SCZ participated. A guide based on the ICF and visual targets was developed to help understand the concepts. The groups were recorded and later transcribed in full. Three judges analyzed the content and, with the aid of the NVIVO software, significant units were coded using codes pre-defined by CIF chapters in their first and second level. Agreement was assessed using Kappa. Results: The saturation of responses occurred from the sixth group. Of the participants, 88% were mothers and 59% of the children were male, with a mean age of 32.5 months, all with GMFCS level V, 68,8% with vision problems, 31,3% hearing, 31,3% sleep and 34,4% epilepsy. The themes of functioning and disability were predominantly linked to activities and participation, environmental factors and bodily functions. Parents emphasized environmental factors, especially barriers such as health services, systems and policies. Conclusions: This is the first qualitative study that addresses the long-term results of children with SCZ using the ICF in Brazil. Although the parents referred to issues related to the movement, their main concerns involved environmental factors. These results reinforce the importance of including the parents' perspective when selecting or developing outcome measures for SCZ. There is an urgent need for environmental changes to improve the lives of children with SCZ and their families in Brazil.Acesso AbertoInfecção por Zika vírusVírus ZikaClassificação Internacional de FuncionalidadeIncapacidade e saúdeMedidas de associaçãoExposiçãoRisco ou desfechomasterThesisCNPQ::CIENCIAS DA SAUDE::SAUDE COLETIVA