Abstract
This article aims to understand how parents of children with microcephaly received the diagnosis. This qualitative study was conducted at State Referral Center for Children's Neurodevelopment, Care, and Rehabilitation (NINAR) in São Luís, Maranhão State, Brazil, from April 2017 to February 2018. Participants in the study included parents or guardians of children with microcephaly. Data collection included structured and semi-structured interviews with 3 couples, 16 mothers, and 1 great-grandmother, totaling 20 interviews. The sample was defined by the saturation criterion, and content analysis was performed according to the thematic modality. Eighteen interviewees reported that the diagnosis had been disclosed to them inappropriately and traumatically, sometimes linked to a sense of "end of life" and dissociated from orientation on ways to cope with the situation and care for the child. The diagnosis of microcephaly was disclosed by physicians in 15 of the 20 cases. Three other cases were disclosed as follows: one by a nurse, one by the mother-in-law (who had learned of the diagnosis from the physician), and one by a health department employee. The other two did not receive the diagnosis: one couple learned of the microcephaly from the infant's Certificate of Life Birth and the other associated the child's problem with information broadcast on the media. Three thematic lines were analyzed: omission of the diagnosis; process of disclosure of the diagnosis; and anticipation of the prognosis. The ways diagnosis of microcephaly was disclosed to families influenced how they accepted and coped with the situation.
Highlights
Os dois outros não receberam diagnóstico: um casal soube da microcefalia pela Declaração de Nascido Vivo e outro associou o problema do filho a informações veiculadas na mídia
Experiências vividas por mães de crianças com deficiência intelectual nos itinerários terapêuticos
Summary
Sendo três com o casal (pai e mãe), 16 com mães e uma com a bisavó, envolvendo 23 entrevistados. A notícia de que os filhos tinham microcefalia foi inesperada para 14 entrevistados. Todos esses casos foram confirmados com microcefalia após o nascimento das crianças, alguns tardiamente. Quanto ao momento do diagnóstico, além dos cinco que receberam a notícia durante o período gestacional, por meio da USG obstétrica, seis casos tomaram conhecimento da microcefalia ao nascer, um caso durante o trabalho de parto após realização de USG de emergência e os outros oito casos após o nascimento, variando de 11 dias a 9 meses. A informação foi dada por uma enfermeira, pela sogra (que soube pelo médico) e por uma funcionária da Secretaria de Saúde. Os dois outros não receberam diagnóstico: um casal soube da microcefalia pela Declaração de Nascido Vivo (DNV) e outro associou o problema do filho a informações veiculadas na mídia. As falas foram organizadas em três eixos temáticos que desvelam a forma como os entrevistados foram informados ou descobriram a doença do filho: omissão do diagnóstico, processo de comunicação do diagnóstico e antecipação de prognóstico
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