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Optimism despite profound uncertainty: school and social relationships in adolescents with single ventricle heart disease

Published online by Cambridge University Press:  12 November 2020

Jennifer K. Peterson Open the ORCID record for Jennifer K. Peterson [Opens in a new window] ,
Ellen F. Olshansky ,
Yuqing Guo ,
Lorraine S. Evangelista  and
Nancy A. Pike
Jennifer K. Peterson*
Affiliation:
Johns Hopkins University School of Nursing, Baltimore, MD, USA
Ellen F. Olshansky
Affiliation:
Sue and Bill Gross School of Nursing, University of California, Irvine, CA, USA
Yuqing Guo
Affiliation:
Sue and Bill Gross School of Nursing, University of California, Irvine, CA, USA
Lorraine S. Evangelista
Affiliation:
University of Texas Medical Branch School of Nursing, Galveston, TX, USA
Nancy A. Pike
Affiliation:
School of Nursing, University of California, Los Angeles, CA, USA Cardiothoracic Surgery, Children’s Hospital, Los Angeles, CA, USA
*
Author for correspondence: J. K. Peterson, PhD, APRN-CNS, CCNS, Johns Hopkins University School of Nursing, 525 North Wolfe St, Room 460, Baltimore, MD 21205, USA. Tel: +410 614 9242; Fax: +410 955 7463. E-mail: jpete107@jhu.edu
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Abstract

Background:

Survivors of single ventricle heart disease must cope with the physical, neurodevelopmental, and psychosocial sequelae of their cardiac disease, which may also affect academic achievement and social relationships. The purpose of this study was to qualitatively examine the experiences of school and social relationships in adolescents with single ventricle heart disease.

Methods:

A descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review.

Results:

Fourteen adolescents (aged 14 to 19 years) with single ventricle heart disease participated. Interviews ranged from 25 to 80 minutes in duration. Four themes emerged from the interviews, including “Don’t assume”: Pervasive ableism; “The elephant in the room”: Uncertain future; “Everyone finds something to pick on”: Bullying at school; “They know what I have been through”: Social support. The overall essence generated from the data was “optimism despite profound uncertainty.”

Conclusions:

Adolescents with single ventricle heart disease identified physical limitations and school challenges in the face of an uncertain health-related future. Despite physical and psychosocial limitations, most remained optimistic for the future and found activities that were congruent with their abilities. These experiences reflect “optimism despite profound uncertainty.”

Keywords

Fontan procedurequalitative researchacademic achievementpeer relationships
Type
Original Article
Information
Cardiology in the Young , Volume 31 , Issue 2 , February 2021 , pp. 252 - 259
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Copyright
© The Author(s), 2020. Published by Cambridge University Press

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