Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 Jul;13(4):443-450.
doi: 10.1177/21501351221099945. Epub 2022 May 18.

Caregiving for Interstage Infants: A Continuous Process of Compromise During the Pandemic

Flerida Imperial-Perez  1   2 , Nancy A Pike  1   2 , Lynn V Doering  2 , Jo-Ann Eastwood  2 , MarySue V Heilemann  2
Affiliations

Caregiving for Interstage Infants: A Continuous Process of Compromise During the Pandemic

Flerida Imperial-Perez et al. World J Pediatr Congenit Heart Surg. 2022 Jul.

Abstract

Background: Infants born with single ventricle heart disease require in-home medicalized care during the interstage period (time between the first and second staged heart surgery). These caregivers rely on extended family, friends, and hired caretakers to provide respite time. However, the coronavirus pandemic removed these families' options due to stay-at-home and social distancing directives. We explored the caregivers' experiences during the interstage period, including impacts on their lifestyle, as they managed their infants' critical needs during the coronavirus disease 2019 pandemic. Method: In-person or telephonic interviews of 14 caregivers interviewed once or twice were conducted between November 2019 and July 2020. Constructivist Grounded Theory methodology guided both data collection and analysis for the inductive and abductive exploration of caregivers' experiences. Results: Data analysis led to the development of 2 concepts: Accepting and adapting to a restrictive home environment and Reconciling what is and what is yet to come. Refinement of the relationship between the 2 concepts led to the development of a theory grounded in the words and experiences of the participants called: A Continuous Process of Compromise. Conclusions: Our findings increase understanding of caregivers' experiences related to psychosocial and lifestyle impacts and the need for additional support during the interstage period.

Keywords: Norwood procedure; congenital heart disease; home monitoring; hypoplastic heart syndrome.

PubMed Disclaimer

Conflict of interest statement

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Constructivist grounded theory approach: Concurrent data collection and analyses.
Figure 2.
Figure 2.
Grounded theory: caregiving for infants with single ventricle heart disease in the interstage period during COVID-19: A continuous process of compromise.
See this image and copyright information in PMC

References

    1. Benjamin EJ, Muntner P, Alonso A, et al.. Heart disease and stroke statistics—2019 update: a report from the American Heart Association. Circulation. 2019;139(10): e56‐e528. - PubMed
    1. Castellanos DA, Herrington C, Adler S, Haas K, Ram Kumar S, Kung GC. Home monitoring program reduces mortality in high-risk sociodemographic single-ventricle patients. Pediatr Cardiol. 2016;37(8):1575‐1580. - PubMed
    1. Nieves JA, Uzark K, Rudd NA, Strawn J, Schmelzer A, Dobrolet N. Interstage home monitoring after newborn first-stage palliation for hypoplastic left heart syndrome: family education strategies. Crit Care Nurse. 2017;37(2):72‐88. - PubMed
    1. Golfenshtein N, Hanlon AL, Deatrick JA, Medoff-Cooper B. Parenting stress in parents of infants with congenital heart disease and parents of healthy infants: the first year of life. Compr Child Adolesc Nurs. 2017;40(4):294‐314. - PubMed
    1. Hollingshead AA. Four-factor index of Social status1975, New Haven, CT.Charmaz K. Constructing Grounded Theory. 2nd ed.Sage Publications; 2014.

Publication types