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

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.