Experience of parents of children with congenital heart disease: feelings and obstacles


  • Thaís Sena Mombach Barreto
  • Victória Tiyoko Moraes Sakamoto
  • Jardel Scremin Magagnin
  • Débora Fernandes Coelho
  • Roberta Waterkemper
  • Simone Travi Canabarro




Heart Defects, Congenital, Child, Hospitalized, Congenital Abnormalities, Parents.


Objective: understand the meaning of the experiences of parents of children with congenital heart disease regarding feelings, obstacles and expectations. Methods: exploratory 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.




How to Cite

Barreto, T. S. M., Sakamoto, V. T. M., Magagnin, J. S., Coelho, D. F., Waterkemper, R., & Canabarro, S. T. (2016). Experience of parents of children with congenital heart disease: feelings and obstacles. Rev Rene, 17(1), 128–136. https://doi.org/10.15253/2175-6783.2016000100017



Research Article

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