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

Area of Science:

• Pediatrics
• Cardiology
• Psychology

Background:

• Infants with single ventricle heart disease require intensive home care during the interstage period.
• Caregivers traditionally rely on external support networks for respite.
• The COVID-19 pandemic disrupted these support systems due to social distancing measures.

Purpose of the Study:

• To explore the experiences of caregivers managing infants with single ventricle heart disease during the interstage period amidst the COVID-19 pandemic.
• To understand the psychosocial and lifestyle impacts on these caregivers.
• To identify the need for enhanced support systems.

Main Methods:

• Qualitative study utilizing Constructivist Grounded Theory methodology.
• 14 caregivers were interviewed once or twice between November 2019 and July 2020.
• Data collection included in-person or telephonic interviews.

Main Results:

• Caregivers developed a theory of "A Continuous Process of Compromise."
• Key concepts included "Accepting and adapting to a restrictive home environment" and "Reconciling what is and what is yet to come."
• Findings highlight significant psychosocial and lifestyle adjustments.

Conclusions:

• The study enhances understanding of the unique challenges faced by caregivers during the interstage period.
• Results underscore the critical need for targeted support for families managing complex pediatric conditions.
• The "Continuous Process of Compromise" framework offers insights into caregiver adaptation strategies.