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Parents’ preparedness for their infants’ discharge following first-stage cardiac surgery: development of a parental early warning tool

Published online by Cambridge University Press:  19 July 2016

Kerry L. Gaskin ,
David J. Barron  and
Amanda Daniels
Kerry L. Gaskin*
Affiliation:
Department of Nursing, Midwifery and Paramedic Science, Institute of Health and Society, University of Worcester, Henwick Grove, Worcester, United Kingdom
David J. Barron
Affiliation:
Department of Cardiac Surgery, Birmingham Children’s Hospital, Steelhouse Lane, Birmingham, United Kingdom
Amanda Daniels
Affiliation:
Cardiac Unit, Birmingham Children’s Hospital, Steelhouse Lane, Birmingham, United Kingdom
*
Correspondence to: K. L Gaskin, Senior Lecturer in Children’s Nursing, Department of Nursing, Midwifery and Paramedic Science, Institute of Health and Society, University of Worcester, Henwick Grove, Worcester WR2 6AJ, United Kingdom. Tel: +01 905 855 156; Fax: 01905 855132; E-mail: k.gaskin@worc.ac.uk
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Abstract

Aim

The aim of this study was to explore parental preparedness for discharge and their experiences of going home with their infant after the first-stage surgery for a functionally univentricular heart.

Background

Technological advances worldwide have improved outcomes for infants with a functionally univentricular heart over the last 3 decades; however, concern remains regarding mortality in the period between the first and second stages of surgery. The implementation of home monitoring programmes for this group of infants has improved this initial inter-stage survival; however, little is known about parents’ experiences of going home, their preparedness for discharge, and parents’ recognition of deterioration in their fragile infant.

Method

This study was conducted in 2011–2013; eight sets of parents were consulted in the research planning stage in September, 2011, and 22 parents with children aged 0–2 years responded to an online survey during November, 2012–March, 2013. Description of categorical data and deductive thematic analysis of the open-ended questions were undertaken.

Results

Not all parents were taught signs of deterioration or given written information specific to their baby. The following three themes emerged from the qualitative data: mixed emotions about going home, knowledge and preparedness, and support systems.

Conclusions

Parents are not adequately prepared for discharge and are not well equipped to recognise deterioration in their child. There is a role for greater parental education through development of an early warning tool to address the gap in parents’ understanding of signs of deterioration, enabling appropriate contact and earlier management by clinicians.

Keywords

Hypoplastic left heart syndromeheart defectsCHDinfantsparentsfamilypatient discharge
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Issue 7 , October 2016 , pp. 1414 - 1424
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Copyright
© Cambridge University Press 2016 

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