Abstract Objective To translate the Leuven Knowledge Questionnaire for Congenital Heart Disease into Brazilian Portuguese and to validate its psychometric properties with parents and family caregivers of children with congenital heart disease. Method This was a six-step methodological study, including the translation, synthesis, back-translation, evaluation of the version translated by the committee of experts, pre-testing, and validation, for which two pilot tests were used including the think-aloud protocol. The content validity index and the frequency of socioeconomic data were calculated in a statistical programming environment. Results In content validation, the instrument showed good applicability among experts, with average content validity index of 0.8-1, while kappa agreement analysis was between 0.76 to 1; both results were considered adequate for validation. Conclusions The results suggest reliability among the evaluators, indicating the instrument’s accuracy and the possibility of using it to assess the knowledge of parents and family caregivers about congenital heart disease.

Objective understand the meaning of the experiences of parents of children with congenital heart disease regarding feelings, obstacles and expectations. Methods qualitative study conducted at a pediatric intensive care unit of a reference hospital. Participants corresponded to seven mothers and four fathers of children with congenital heart defect, surgically corrected and with more than 8 hours of admission, totalling 11 participants. Data collection was performed through semi-structured individual recorded interviews. Data were described according to thematic content analysis. Results five thematic categories emerged: (1) unpreparedness to face the problem; (2) feelings involved (3) factors that make difficult to face the problem; (4) factors that facilitate facing the problem; (5) spirituality. Conclusion each family is unique and needs support to better face the disease and its process. It is essential to develop interdisciplinary network support, providing comprehensive care.

Objetivo compreender o significado das vivências de pais de crianças com cardiopatia congênita com relação a sentimentos, obstáculos e expectativas. Métodos estudo qualitativo realizado em unidade de terapia intensiva pediátrica de hospital de referência. Participaram sete mães e quatro pais de crianças com cardiopatia congênita corrigida cirurgicamente e com mais de 8 horas de internação, totalizando 11 participantes. Coleta de dados foi realizada por entrevista semiestruturada individual e gravada. Os dados foram descritos segundo análise de conteúdo do tipo temática. Resultados foram construídas cinco categorias temáticas: (1) despreparo para o enfrentamento; (2) sentimentos envolvidos (3) fatores que dificultam o enfrentamento; (4) fatores que facilitam o enfrentamento; (5) espiritualidade. Conclusão cada família é única e necessita de apoio para melhor enfrentamento frente à doença e seu processo. É essencial desenvolver rede de suporte interdisciplinar, proporcionando assistência integral.