Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome. J Fam Nurs 2021 Aug;27(3):222-234
Date
02/05/2021Pubmed ID
33535863Pubmed Central ID
PMC8594631DOI
10.1177/1074840720987309Scopus ID
2-s2.0-85100504914 (requires institutional sign-in at Scopus site) 20 CitationsAbstract
Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms. QOL scores generally declined over time, whereas self-reported well-being improved. Responses from mothers and fathers showed different trends, with mothers having worse scores on most measures and at most time points. Being a single parent was a risk factor for poorer family function, but not for lower individual QOL or well-being. Family characteristics, stress, and coping skills were predictive of outcomes. Parents' psychosocial responses to the challenges of life with infants with HLHS change over time. Individually tailored psychosocial support is needed.
Author List
Mussatto KA, Van Rompay MI, Trachtenberg FL, Pemberton V, Young-Borkowski L, Uzark K, Hollenbeck-Pringle D, Dunbar-Masterson C, Infinger P, Walter P, Sawin KAuthor
Kathleen Mussatto Ph.D. Associate Professor in the School of Nursing department at Milwaukee School of EngineeringMESH terms used to index this publication - Major topics in bold
Adaptation, PsychologicalAdult
Female
Humans
Hypoplastic Left Heart Syndrome
Infant
Mothers
Parents
Quality of Life