Resumo OBJETIVO Descrever as experiências de pais de crianças e adolescentes com leucemia quanto à transição de cuidados do hospital para o domicílio. MÉTODO Estudo qualitativo, descritivo, realizado com nove mães e dois pais, em um hospital público pediátrico de São Paulo-SP. Os dados foram coletados por meio de entrevistas semiestruturadas, de maio de 2016 a janeiro de 2017, organizados no software Atlas.ti 7® e submetidos à análise de conteúdo indutiva. Adotou-se a Teoria das Mudanças como referencial teórico. RESULTADOS A categoria central foi “A volta para casa: apropriando-se de uma nova realidade”, composta de três subcategorias: apreensão com a nova realidade de cuidados; impacto imediato das mudanças; e implementação do plano de orientações. CONCLUSÃO A transição para o domicílio fez com que os pais tivessem que se adaptar à nova e complexa realidade de cuidados. Melhorias no planejamento e sistematização da primeira alta mostram-se necessárias.
Aims: To describe the experiences of the parents of children with oncoh ematological diseases related to the continuity of treatment in the home environment. Methods: This is a case study report with a qualitative approach. The participant was a father of a child with leukemia. Findings: After diagnosis, the parents increased their child-related care. Accepting a cancer diagnosis is not easy, especially when it comes to childhood. The diagnosis of cancer caused a lot of pain to the father, who could not accept for a long time the fact that the son has a disease that carries with it an imminent threat of death. To take the child home was a terrifying situation. The physicians and social workers of the hospital passed a significant part of the information to the parents, and the nursing team did not have contact with the parents related to these orientations. Conclusions: The health team should be better prepared to assist families with children with oncohematological diseases. They should be able to answer the questions of the families at any time, and the nursing team, especially the nurse should be more involved in this process.
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