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Experiences of parents of children with hypoplastic left heart syndrome during their treatment: a qualitative study

Published online by Cambridge University Press:  03 April 2023

Agustín Silberberg Open the ORCID record for Agustín Silberberg [Opens in a new window] ,
Josefina Castro Méndez ,
Silvio F. Torres ,
Rafael Fraire ,
Alejandro Siaba Serrate ,
Christian Kreutzer ,
Mariana López Daneri  and
Thomas Iolster
Agustín Silberberg*
Affiliation:
Hospital Universitario Austral, Pilar, Buenos Aires, Argentina
Josefina Castro Méndez
Affiliation:
Hospital Universitario Austral, Pilar, Buenos Aires, Argentina
Silvio F. Torres
Affiliation:
Hospital Universitario Austral, Pilar, Buenos Aires, Argentina
Rafael Fraire
Affiliation:
Hospital Universitario Austral, Pilar, Buenos Aires, Argentina
Alejandro Siaba Serrate
Affiliation:
Hospital Universitario Austral, Pilar, Buenos Aires, Argentina
Christian Kreutzer
Affiliation:
Hospital Universitario Austral, Pilar, Buenos Aires, Argentina
Mariana López Daneri
Affiliation:
Hospital Universitario Austral, Pilar, Buenos Aires, Argentina
Thomas Iolster
Affiliation:
Hospital Universitario Austral, Pilar, Buenos Aires, Argentina
*
Author for correspondence: Agustín Silberberg, Hospital Universitario Austral and Facultad de Ciencias Biomédicas, Universidad Austral, Pilar, Buenos Aires, Argentina. E-mail: asilberb@cas.austral.edu.ar
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Abstract

Aim:

To investigate the opinion and personal experience of parents of children born with Hypoplastic Left Heart Syndrome and what advice they would give to other parents who have to decide between treatment options.

Methods:

We conducted a qualitative, descriptive and retrospective study by means of a survey directed to parents of children born with Hypoplastic Left Heart Syndrome in a tertiary hospital in Buenos Aires (Argentina). Their answers and data regarding medical procedures were analysed.

Results:

Parents of thirteen out of sixteen patients with Hypoplastic Left Heart Syndrome were surveyed. Norwood surgery had been performed in all the patients, many had received other procedures, and five had died. In relation to the decision-making process, sixty-one percent of parents would recommend other parents to remain at peace after having done everything possible and 54% would suggest to not feel guilt despite the final result. None of the parents would recommend rejecting surgical treatment and choosing comfort care.

Conclusion:

The majority of parents of children with Hypoplastic Left Heart Syndrome would recommend continuing with the therapeutic effort in order to feel at peace and reduce feelings of guilt.

Keywords

Hypoplastic left heart syndromequality of lifeguiltcomfort careparents perception
Type
Original Article
Information
Cardiology in the Young , Volume 33 , Issue 12 , December 2023 , pp. 2553 - 2558
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Copyright
© The Author(s), 2023. Published by Cambridge University Press

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