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Developing a sense of self-reliance: caregivers of infants with single-ventricle heart disease during the interstage period

Published online by Cambridge University Press:  24 June 2021

Flerida Imperial-Perez*
Affiliation:
Heart Institute, Section of Cardiothoracic ICU, Children’s Hospital Los Angeles, University of California Los Angeles School of Nursing, Los Angeles, CA, USA
MarySue V. Heilemann
Affiliation:
School of Nursing, University of California Los Angeles, Los Angeles, CA, USA
Lynn V. Doering
Affiliation:
School of Nursing, University of California Los Angeles, Los Angeles, CA, USA
Jo-Ann Eastwood
Affiliation:
School of Nursing, University of California Los Angeles, Los Angeles, CA, USA
Nancy A. Pike
Affiliation:
Heart Institute, Section of Cardiothoracic ICU, Children’s Hospital Los Angeles, University of California Los Angeles School of Nursing, Los Angeles, CA, USA
*
Author for correspondence: Flerida Imperial-Perez, Heart Institute, Cardiothoracic ICU, Children’s Hospital Los Angeles, 4650 Sunset Blvd, Los Angeles, CA, USA. Tel: 3233615658; Fax: (323)361-4018. E-mail: fimperial-perez@chla.usc.edu

Abstract

Background:

Caring for infants after the first-stage palliative surgery for single-ventricle heart disease bring challenges beyond the usual parenting responsibilities. Current studies fail to capture the nuances of caregivers’ experiences during the most critical “interstage” period between the first and second surgery.

Objectives:

To explore the perceptions of caregivers about their experiences while transitioning to caregiver roles, including the successes and challenges associated with caregiving during the interstage period.

Methods:

Constructivist Grounded Theory methodology guided the collection and analysis of data from in person or telephonic interviews with caregivers after their infants underwent the first-stage palliative surgery for single-ventricle heart disease, and were sent to home for 2–4 months before returning for their second surgery. Symbolic interactionism informed data analyses and interpretation.

Results:

Our sample included 14 parents, who were interviewed 1–2 times between November, 2019 and July, 2020. Most patients were mothers (71%), Latinx (64%), with household incomes <$30K (42%). Data analysis led to the development of a Grounded Theory called Developing a Sense of Self-Reliance with three categories: (1) Owning caregiving responsibilities despite grave fears, (2) Figuring out how “to make it work” in the interstage period, and (3) Gaining a sense of self-reliance.

Conclusions:

Parents transitioned to caregiver roles by developing a sense of self-reliance and, in the process, gained self-confidence and decision-making skills. Our study responded to the key research priority from the AHA Scientific Statement to address the knowledge gap in home monitoring for interstage infants through qualitative research design.

Type
Original Article
Copyright
© The Author(s), 2021. Published by Cambridge University Press

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