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Parenting a child at home with hypoplastic left heart syndrome: experiences of commitment, of stress, and of love

Published online by Cambridge University Press:  06 June 2017

Annie M. Cantwell-Bartl  and
James Tibballs Open the ORCID record for James Tibballs [Opens in a new window]
Annie M. Cantwell-Bartl*
Affiliation:
Private Practice, Melbourne, Victoria, Australia
James Tibballs
Affiliation:
Private Practice, Melbourne, Victoria, Australia
*
Correspondence to: A. M. Cantwell-Bartl, 24 Market St, Kensington, Melbourne, Vic. 3031, Australia. Tel: +61 4 1987 5570; E-mail: anniecantwellbartl@gmail.com
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Abstract

Objective

To evaluate the experiences of parenting a child with hypoplastic left heart syndrome after the child has been discharged home from hospital.

Design

A study of the parents’ experiences using face-to-face interviews and psychometric measures with parents whose child had survived stage surgery.

Setting

Parents were interviewed within the home environment or within the hospital if that was their choice.

Subjects

A total of 29 parents (16 mothers and 13 fathers) of surviving children.

Intervention

A semi-structured face-to-face interview plus psychometric tests (parent demographics, Maslach Burnout Inventory, Impact on Family Scale, and the Psychological Check List – Civilian).

Measurements and main results

The parents’ experience in supporting a child with hypoplastic left heart syndrome is one of stress, of commitment, and of love. Although parents experienced joy in their child, they were also subjected to anxiety with four parents test positive to post-traumatic stress disorder and hypervigilance while monitoring their child’s condition. Parents lived with many difficulties, and demands.

Keywords

Hypoplastic left heart syndromeparentsstressgriefadaptation
Type
Original Articles
Information
Cardiology in the Young , Volume 27 , Issue 7 , September 2017 , pp. 1341 - 1348
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Copyright
© Cambridge University Press 2017 

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