Interstage Home Monitoring After Newborn First-Stage Palliation for Hypoplastic Left Heart Syndrome: Family Education Strategies. 2017

Jo Ann Nieves, and Karen Uzark, and Nancy A Rudd, and Jennifer Strawn, and Anne Schmelzer, and Nancy Dobrolet
Jo Ann Nieves is a pediatric nurse practitioner in the neonatal high-risk cardiac surgery clinic and the adult congenital heart disease program at the Nicklaus Children's Hospital Heart Program, Miami, Florida. artnieves1@aol.com.

Children born with hypoplastic left heart syndrome are at high risk for serious morbidity, growth failure, and mortality during the interstage period, which is the time from discharge home after first-stage hypoplastic left heart syndrome palliation until the second-stage surgical intervention. The single-ventricle circulatory physiology is complex, fragile, and potentially unstable. Multicenter initiatives have been successfully implemented to improve outcomes and optimize growth and survival during the interstage period. A crucial focus of care is the comprehensive family training in the use of home surveillance monitoring of oxygen saturation, enteral intake, weight, and the early recognition of "red flag" symptoms indicating potential cardiopulmonary or nutritional decompensation. Beginning with admission to the intensive care unit of the newborn with hypoplastic left heart syndrome, nurses provide critical care and education to prepare the family for interstage home care. This article presents detailed nursing guidelines for educating families on the home care of their medically fragile infant with single-ventricle circulation.

UI MeSH Term Description Entries
D007223 Infant A child between 1 and 23 months of age. Infants
D007231 Infant, Newborn An infant during the first 28 days after birth. Neonate,Newborns,Infants, Newborn,Neonates,Newborn,Newborn Infant,Newborn Infants
D008297 Male Males
D008875 Middle Aged An adult aged 45 - 64 years. Middle Age
D003422 Critical Care Health care provided to a critically ill patient during a medical emergency or crisis. Intensive Care,Intensive Care, Surgical,Surgical Intensive Care,Care, Critical,Care, Intensive,Care, Surgical Intensive
D005190 Family A social group consisting of parents or parent substitutes and children. Family Life Cycles,Family Members,Family Life Cycle,Family Research,Filiation,Kinship Networks,Relatives,Families,Family Member,Kinship Network,Life Cycle, Family,Life Cycles, Family,Network, Kinship,Networks, Kinship,Research, Family
D005260 Female Females
D006699 Home Care Services Community health and NURSING SERVICES providing coordinated multiple services to the patient at the patient's homes. These home-care services are provided by a visiting nurse, home health agencies, HOSPITALS, or organized community groups using professional staff for care delivery. It differs from HOME NURSING which is provided by non-professionals. Domiciliary Care,Home Health Care,Care Services, Home,Home Care,Services, Home Care,Care, Domiciliary,Care, Home,Home Care Service,Service, Home Care
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D000328 Adult A person having attained full growth or maturity. Adults are of 19 through 44 years of age. For a person between 19 and 24 years of age, YOUNG ADULT is available. Adults

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