State of the science of care coordination, rurality, and well-being for infants with single ventricle heart disease in the Interstage period, an integrative review

Background: Ensuring the quality of interstage management of infants with single ventricle heart disease (SVHD) residing in rural communities is difficult. Tailored care coordination through parental discharge education, formal and informal care team and family communication, adequate access to healthcare, and informed provider handoffs are crucial to the infant's well-being and survival. Objective: To discuss the state of the science related to care coordination factors and infant wellbeing during the interstage period. Methods: An integrative review approach to synthesize findings across studies was used. Through constant comparative analysis, all articles were read and coded, broken down into “data bits” or key phrases. Results: Four major themes were inductively derived: 1) education and confidence-building, 2) communication for building relationships, 3) social work and related mental health support, and 4) availability of resources. Conclusions: Despite advances in cardiac surgery and related interventions, a clear gap exists regarding care coordination factors and infant well-being, especially in rural communities.