ABSTRACT
BACKGROUND: Parents who receive a diagnosis of a severe, life-threatening CHD for their foetus or neonate face a complex and stressful decision between termination, palliative care, or surgery. Understanding how parents make this initial treatment decision is critical for developing interventions to improve counselling for these families. METHODS: We conducted focus groups in four academic medical centres across the United States of America with a purposive sample of parents who chose termination, palliative care, or surgery for their foetus or neonate diagnosed with severe CHD. RESULTS: Ten focus groups were conducted with 56 parents (Mage = 34 years; 80% female; 89% White). Results were constructed around three domains: decision-making approaches; values and beliefs; and decision-making challenges. Parents discussed varying approaches to making the decision, ranging from relying on their "gut feeling" to desiring statistics and probabilities. Religious and spiritual beliefs often guided the decision to not terminate the pregnancy. Quality of life was an important consideration, including how each option would impact the child (e.g., pain or discomfort, cognitive and physical abilities) and their family (e.g., care for other children, marriage, and career). Parents reported inconsistent communication of options by clinicians and challenges related to time constraints for making a decision and difficulty in processing information when distressed. CONCLUSION: This study offers important insights that can be used to design interventions to improve decision support and family-centred care in clinical practice.
Subject(s)
Heart Defects, Congenital , Quality of Life , Adult , Child , Decision Making , Female , Fetus , Heart Defects, Congenital/therapy , Humans , Infant, Newborn , Male , Parents/psychology , PregnancyABSTRACT
This scientific statement summarizes the current state of knowledge related to interstage home monitoring for infants with shunt-dependent single ventricle heart disease. Historically, the interstage period has been defined as the time of discharge from the initial palliative procedure to the time of second stage palliation. High mortality rates during the interstage period led to the implementation of in-home surveillance strategies to detect physiologic changes that may precede hemodynamic decompensation in interstage infants with single ventricle heart disease. Adoption of interstage home monitoring practices has been associated with significantly improved morbidity and mortality. This statement will review in-hospital readiness for discharge, caregiver support and education, healthcare teams and resources, surveillance strategies and practices, national quality improvement efforts, interstage outcomes, and future areas for research. The statement is directed toward pediatric cardiologists, primary care providers, subspecialists, advanced practice providers, nurses, and those caring for infants undergoing staged surgical palliation for single ventricle heart disease.
Subject(s)
Enteral Nutrition , Home Nursing/methods , Hypoplastic Left Heart Syndrome/nursing , Monitoring, Physiologic/methods , Oxygen/blood , Weight Gain , American Heart Association , Caregivers/education , Checklist , Communication , Home Nursing/education , Humans , Hypoplastic Left Heart Syndrome/blood , Hypoplastic Left Heart Syndrome/physiopathology , Hypoplastic Left Heart Syndrome/surgery , Infant , Norwood Procedures/methods , Oximetry/methods , Palliative Care/methods , Patient Care Team/organization & administration , Patient Discharge/standards , Quality Improvement , Reoperation , Risk Factors , Transitional Care/organization & administration , Transitional Care/standards , United StatesABSTRACT
INTRODUCTION: To our knowledge, successful breastfeeding in the population with single ventricle congenital heart disease has not been reported in the literature, particularly during the interstage period. METHOD: A retrospective case study including inpatient nutrition and a complete history of daily logs with the home surveillance monitoring program was performed. RESULTS: Successful full breastfeeding (exceeding prescribed weight growth goals) after Stage I surgery was achieved during the interstage period. The infant was discharged at 3.41 kg, not consistently breastfeeding, and progressed to 7.05 kg at 5 months of age, fully breastfeeding. CONCLUSION: Supporting breastfeeding for infants who have undergone repairs for single ventricle anatomy can be challenging but can be accomplished. It requires a concerted team effort, clear communication, and collaboration among caregivers, the mother, and her supporters.
Subject(s)
Heart Defects, Congenital , Infant Nutritional Physiological Phenomena , Nutritional Support , Breast Feeding , Heart Defects, Congenital/therapy , Humans , Infant , Infant, Newborn , Male , Nutrition Assessment , Patient Discharge , United States , Weight Gain/physiologySubject(s)
Heart Defects, Congenital/complications , Heart Defects, Congenital/diet therapy , Nutrition Assessment , Nutritional Status , Child , Child Development/physiology , Child, Preschool , Constipation/diet therapy , Gastroesophageal Reflux/diet therapy , Heart Defects, Congenital/physiopathology , Humans , Infant , Infant Formula/methods , Infant, NewbornABSTRACT
A standardized medical regimen aimed at reducing pleural effusions after the Fontan operation was compared with a randomly selected retrospective cohort. The duration of chest tube drainage, hospital stay, and the need for pleural sclerosis were significantly reduced, indicating that postoperative management plays an important role in reducing this morbidity.
