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Congenital cardiac surgery and parental perception of risk: a qualitative study

Published online by Cambridge University Press:  13 September 2019

Robyn R. Lotto Open the ORCID record for Robyn R. Lotto [Opens in a new window] ,
Ian D. Jones ,
Rafael Guerrero ,
Ram Dhannapuneni  and
Attilio A. Lotto
Robyn R. Lotto*
Affiliation:
Faculty of Health, Liverpool John Moores University, Liverpool, UK
Ian D. Jones
Affiliation:
Faculty of Health, Liverpool John Moores University, Liverpool, UK
Rafael Guerrero
Affiliation:
Department of Cardiac Surgery, Alder Hey Children’s Hospital, Liverpool, UK
Ram Dhannapuneni
Affiliation:
Department of Cardiac Surgery, Alder Hey Children’s Hospital, Liverpool, UK
Attilio A. Lotto
Affiliation:
Faculty of Health, Liverpool John Moores University, Liverpool, UK Department of Cardiac Surgery, Alder Hey Children’s Hospital, Liverpool, UK
*
Author for correspondence: R. R. Lotto, Faculty of Health, Liverpool John Moores University, Webster Street, Liverpool L3 2ET, UK; E-mail: r.r.lotto@ljmu.ac.uk
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Abstract

Introduction:

The way risk is interpreted by parents of children undergoing congenital cardiac surgery is poorly documented. Literature suggests clinicians have concerns that parents may not understand the complexity of procedures. Conversely, some parents perceive an unnecessary over-emphasis of risks.

Aim:

To explore how risk is encountered by parents of children who are undergoing cardiac surgery, in order to deliver effective and compassionate care.

Methods:

A qualitative approach was adopted. Interviews were undertaken with 18 parents (mothers n = 10; fathers n = 8). Recordings were transcribed verbatim and analysed using a constant comparative-based approach.

Findings:

Three themes emerged from the data: the nature of risk, reflecting the complexity of parental perception of risk and the influence of the doctor–parent relationship; presenting risk, highlighting the way in which risk is presented to and interpreted by parents; and risk and responsibility, examining the way in which parents engaged with risk and the impact of this on their relationship.

Conclusions:

The way in which risk is perceived by parents is complex and multi-factorial. The doctor–parent relationship is key to parental engagement. However, parents manage risk and uncertainty through a number of mechanisms, including those perceived as being not rational. This can cause tension, particularly when required to engage in informed decision-making.

Keywords

Qualitativecongenital cardiac surgeryrisk perception

Information

Type
Original Article
Information
Cardiology in the Young , Volume 29 , Issue 11 , November 2019 , pp. 1361 - 1367
Copyright
© Cambridge University Press 2019 

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