The lived experience of parents whose children discharged to home after cardiac surgery for congenital heart disease

The lived experience of parents whose children discharged to home after cardiac surgery for congenital heart disease

Authors

  • Silvio Simeone General and Pediatric Cardiac Surgery Unit, Department of Advanced Biomedical Sciences, Federico II University Hospital, Naples
  • Nicol Platone G. Pasquinucci Heart Hospital, Gabriele Monasterio Foundation, Massa
  • Marco Perrone General and Pediatric Cardiac Surgery Unit, Department of Advanced Biomedical Sciences, Federico II University Hospital, Naples
  • Valentina Marras G. Pasquinucci Heart Hospital, Gabriele Monasterio Foundation, Massa
  • Gianluca Pucciarelli
  • Martina Benedetti G. Pasquinucci Heart Hospital, Gabriele Monasterio Foundation, Massa
  • Grazia Dell'Angelo General and Pediatric Cardiac Surgery Unit, Department of Advanced Biomedical Sciences, Federico II University Hospital, Naples
  • Teresa Rea Pubblic Health Department, Federico II University Hospital, Naples
  • Assunta Guillari Pubblic Health Department, Federico II University Hospital, Naples
  • Paola Da Valle G. Pasquinucci Heart Hospital, Gabriele Monasterio Foundation, Massa
  • Gianpaolo Gargiulo Haematology and HSCT Unit, Federico II University Hospital, Naples
  • Stefano Botti Haematology Unit, Azienda Unità Sanitaria Locale - IRCCS, Reggio Emilia
  • Giovanna Artioli Azienda Unità Sanitaria Locale - IRCCS, Reggio Emilia
  • Giuseppe Comentale General and Pediatric Cardiac Surgery Unit, Department of Advanced Biomedical Sciences, Federico II University Hospital, Naples
  • Salvatore Ferrigno General and Pediatric Cardiac Surgery Unit, Department of Advanced Biomedical Sciences, Federico II University Hospital, Naples
  • Gaetano Palma General and Pediatric Cardiac Surgery Unit, Department of Advanced Biomedical Sciences, Federico II University Hospital, Naples
  • Stefania Baratta G. Pasquinucci Heart Hospital, Gabriele Monasterio Foundation, Massa

Keywords:

health professions

Abstract

Background: Congenital Heart Diseases (CHDs) afflicting children are estimated in 8 per 1000 live births. Recent advances in surgery and medical treatments allowed an improvement in survival rates leading to changes in diseases management as chronic conditions. Parents involvement during clinical pathways is considered an essential component of care, but frequently they experience stress and anxiety conditions during the care path. These feelings are typical of the pre and peri-operative period, however they don’t disappear easily and sometimes they can increase after hospital discharge, affecting the family environment and its behaviors. Aim of the work: The purpose of this qualitative study is to examine the lived experience of parents during the time just after their children return home from hospital after undergoing surgery for CHD. Methods: Parents were enrolled and interviewed as a prepositive sampling until concept saturation using Cohen’s phenomenology approach. A quantitative approach was also applied using SF-12 questionnaire. The study was conducted in two Italian hospitals: the Pediatric Heart Surgery Center of the Fondazione Toscana G. Monasterio Institute in Massa and the Pediatric Cardiac Surgery Center of the Federico II University Hospital in Naples. Results: The main themes emerged after the analysis were “happiness and uncertainty”; “chronic psychophysical fatigue”; “the rediscovery of a strong link with health care professionals”. Conclusions: Fully understand the life experience of these families will allow the implementation of targeted health interventions through the implementation of shared strategies and tools to reduce families and children discomfort after hospital discharge.

 

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Published

04-04-2018

How to Cite

1.
Simeone S, Platone N, Perrone M, Marras V, Pucciarelli G, Benedetti M, et al. The lived experience of parents whose children discharged to home after cardiac surgery for congenital heart disease. Acta Biomed [Internet]. 2018 Apr. 4 [cited 2024 Jul. 23];89(4-S):71-7. Available from: https://www.mattioli1885journals.com/index.php/actabiomedica/article/view/7223