Andersons pediatric cardiology 1893

understanding of program rationale and goals Providers must develop a clear understanding of individualized needs for each family and tailor discharge preparation to promote success.39 Parenting stress is prominent in families caring for children with all forms of congenital heart disease and even increased for parents caring for children with a functionally univentricular heart.40–42 Thus barriers for successful implementation of an interstage home monitoring program are ideally identified prior to discharge Families of children with a functionally univentricular heart report varying levels of stress, particularly at time of discharge to the home.13 Parental challenges and stressors may include language barriers, educational level, family support, socioeconomic burdens, and emotional distress, including feelings of fear, depression, or fatigue.13,40 Any of these issues may affect a family's readiness to learn and their ability to successfully carry out home monitoring and interstage cares Identified barriers warrant additional support from the cardiac team, social workers, psychologists, or parent support organizations, as available Ethnicity and socioeconomic factors have been associated with interstage mortality.6,21,43 Enrollment in a home monitoring program has effectively reduced interstage mortality across varying sociodemographic populations.3,6 Iterative parent education throughout the stage I palliation hospital stay is important for retention and mastery of skills, as well as anticipatory preparation for commonly encountered infant challenges that may in fact destabilize those infants with a dual-distribution circulation.39 Tools such as discharge-teaching checklists for parents and providers or visual diagrams depicting learning needs and referred to as “stepping stones” or “journey boards” (Fig 72.3) provide a family-friendly, coordinated, and standardized means of tracking the discharge planning process The strategy of having parents participate in an extended period of “rooming-in without monitors” or “24- to 48-hour care” is a valuable strategy often used just prior to discharge This exercise affords parents the opportunity to confirm a level of comfort performing daily tasks and mimic life at home while still having providers available for consultation In addition, this experience can ensure the provider team of parent competence and/or identify areas of care with which parents need additional reassurance or training FIG 72.3 Visual diagram depicting learning needs (referred to as “stepping stones” or “journey boards”) designed to provide a family-friendly, coordinated, and standardized means of tracking the discharge planning process (Courtesy the National Pediatric Quality Improvement Collaborative.) Transitional Care Care coordination from the inpatient to outpatient setting is vital to continued well-being during the interstage period This transition of care requires clear communication between providers, including referring cardiologists, primary care providers, and other subspecialists such as gastroenterologists.16 The absence of comprehensive and effective communication between health care providers can negatively impact patient outcomes Identification of a discharge coordinator who takes primary responsibility for overseeing the discharge process minimizes practice variation and aids in the care coordination efforts necessary to ensure a safe transition to home This responsibility often falls on advance practice providers whose roles overlap inpatient and outpatient care Vital components for transitional care are outlined as follows: ■ Identification of a specific team member to coordinate the discharge process ■ Use of a standard discharge checklist to ensure completion of tasks (Fig 72.4)  ... coordinated, and standardized means of tracking the discharge planning process (Courtesy the National Pediatric Quality Improvement Collaborative.) Transitional Care Care coordination from the inpatient to outpatient setting is vital to continued