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Identifying gaps in parental support for families of children with hypoplastic left heart syndrome

Part of: Hypoplastic Left Heart Syndrome (HLHS)

Published online by Cambridge University Press:  10 May 2021

Meghan Landry ,
Meghan Katers ,
Erica Olson ,
Lynn Cern ,
Timothy J Nelson  and
Katherine A Campbell Open the ORCID record for Katherine A Campbell [Opens in a new window]
Meghan Landry
Affiliation:
Nursing Department, St. Catherine University, St. Paul, MN, USA
Meghan Katers
Affiliation:
Nursing Department, St. Catherine University, St. Paul, MN, USA
Erica Olson
Affiliation:
Nursing Department, St. Catherine University, St. Paul, MN, USA
Lynn Cern
Affiliation:
Wanek Program for Hypoplastic Left Heart Syndrome, Mayo Clinic, Rochester, MN, USA
Timothy J Nelson
Affiliation:
Center for Regenerative Medicine, Mayo Clinic, Rochester, MN, USA Division of General Internal Medicine, Mayo Clinic, Rochester, MN, USA Department of Molecular Pharmacology and Experimental Therapeutics, Mayo Clinic, Rochester, MN, USA Division of Pediatric Cardiology, Mayo Clinic, Rochester, MN, USA Division of Cardiovascular Diseases, Mayo Clinic, Rochester, MN, USA
Katherine A Campbell*
Affiliation:
Department of Interprofessional Education, St. Catherine University, St. Paul, MN, USA Women’s Health Integrative Research Center, St. Catherine University, St. Paul, MN, USA
*
Author for correspondence: Katherine A Campbell, PhD, St. Catherine University, 2004 Randolph Ave, St. Paul, MN55105, USA. Tel: 1-651-690-6179. E-mail: [email protected]
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Abstract

Purpose:

The purpose of this study is to identify gaps in support for parents of children with Hypoplastic Left Heart Syndrome.

Design and methods:

Using a mixed-methods approach, the researchers first studied the parental and care team experience through interviews of Hypoplastic Left Heart Syndrome mothers and members of the inter-professional care team and then conducted an international survey of 690 Hypoplastic Left Heart Syndrome primary caregivers to validate the qualitative findings.

Results:

Parental and care team interviews revealed three main gaps in parental support, including lack of open communication, unrealistic parental expectations, and unclear inter-professional team roles. Survey results found that parents whose children were diagnosed with Hypoplastic Left Heart Syndrome after birth indicated significant dissatisfaction with the care team’s open communication and welcoming of feedback (p = 0.008). As parents progress through the stages of surgical intervention, they also indicate significant dissatisfaction with the care team’s anticipation of parental emotional needs and provision of coping resources (p = 0.003).

Conclusions:

Parental support interventions should focus on providing resources to help parents cope, helping the care team model open communication, and welcoming feedback on the parental experience.

Practice implications:

Interventions should be piloted with parents who are in the later stages of the surgical intervention timeline or whose children were diagnosed after birth as they are the populations who perceived the least support within this study.

Keywords

Hypoplastic left heart syndrome (HLHS)congenital heart disease (CHD)parental supportfamily-centred careinter-professional care team
Type
Original Article
Information
Cardiology in the Young , Volume 32 , Issue 2 , February 2022 , pp. 215 - 222
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Copyright
© The Author(s), 2021. Published by Cambridge University Press

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Footnotes

*

indicates co-first authors

References

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