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Navigating life with single-ventricle CHD: psychosocial needs across adulthood

Published online by Cambridge University Press:  18 November 2024

Maria E. Hoyos Open the ORCID record for Maria E. Hoyos [Opens in a new window] ,
Andrew Well Open the ORCID record for Andrew Well [Opens in a new window] ,
Heather Van Diest ,
Hannah Lopez ,
Marian Morris ,
Kathleen E. Carberry ,
Gregory Johnson ,
Charles D. Fraser Jr. ,
Carlos M. Mery Open the ORCID record for Carlos M. Mery [Opens in a new window]  and
Alexandra Lamari-Fisher Open the ORCID record for Alexandra Lamari-Fisher [Opens in a new window]
Maria E. Hoyos*
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA Department of Surgery and Perioperative Care, Dell Medical School at the University of Texas at Austin, Austin, TX, USA Value Institute for Health and Care, The University of Texas at Austin Dell Medical School and McCombs School of Business, Austin, TX, USA
Andrew Well
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA Department of Surgery and Perioperative Care, Dell Medical School at the University of Texas at Austin, Austin, TX, USA Value Institute for Health and Care, The University of Texas at Austin Dell Medical School and McCombs School of Business, Austin, TX, USA
Heather Van Diest
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA Department of Health Social Work, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
Hannah Lopez
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA Department of Health Social Work, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
Marian Morris
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA
Kathleen E. Carberry
Affiliation:
Value Institute for Health and Care, The University of Texas at Austin Dell Medical School and McCombs School of Business, Austin, TX, USA
Gregory Johnson
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA Department of Pediatrics, The University of Texas at Austin Dell Medical School, Austin, TX, USA
Charles D. Fraser Jr.
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA Department of Surgery and Perioperative Care, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
Carlos M. Mery
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA Department of Surgery and Perioperative Care, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
Alexandra Lamari-Fisher
Affiliation:
Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children’s Medical Center, Austin, TX, USA Department of Psychiatry and Behavioral Sciences, The University of Texas at Austin Dell Medical School, Austin, TX, USA
*
Corresponding author: Maria E. Hoyos; Email: [email protected]
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Abstract

Objective:

The population of adults with single-ventricle congenital heart disease (CHD) is growing. This study explores their lived experiences through an adult developmental psychology framework.

Methods:

Individuals aged 18 and older with single-ventricle CHD participated in Experience Group sessions and 1:1 interviews. Sessions were transcribed and analysed thematically. Themes were categorized by developmental domains and age group.

Results:

Of the 29 participants, 18 (62%) were female, 10 (35%) were emerging (18–29 years), 13 (45%) were established (30–45 years), and 6 (21%) were midlife adults (46–60 years). Emerging adults expressed reluctance to initiate romantic relationships and fear of burdening partners, while established adults reported strong relationships with partners deeply involved in caregiving. Emerging adults struggled with finding fulfilling work that meets their health needs, whereas established and midlife adults faced unemployment or early retirement due to health limits. Family dynamics shifted, with established and midlife adults educating their children to become caregivers. Physical limitations and low self-rated health were consistent across life stages, and midlife adults did not worry about traditional chronic conditions. Mental health concerns, including anxiety and depression, persisted across all life stages, but resiliency and positive affect were also evident.

Conclusion:

Adults with single-ventricle CHD experience developmental milestones differently, indicating the need for early anticipatory guidance in these domains to achieve optimal outcomes in adulthood.

Keywords

Hypoplastic left heart syndromeQualitative researchAdult developmental psychology
Type
Original Article
Information
Cardiology in the Young , Volume 34 , Issue 11 , November 2024 , pp. 2341 - 2348
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Copyright
© The Author(s), 2024. Published by Cambridge University Press

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