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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

02/05/2021

Pubmed ID

33535863

Pubmed Central ID

PMC8594631

DOI

10.1177/1074840720987309

Scopus ID

2-s2.0-85100504914 (requires institutional sign-in at Scopus site)   20 Citations

Abstract

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 K

Author

Kathleen Mussatto Ph.D. Associate Professor in the School of Nursing department at Milwaukee School of Engineering




MESH terms used to index this publication - Major topics in bold

Adaptation, Psychological
Adult
Female
Humans
Hypoplastic Left Heart Syndrome
Infant
Mothers
Parents
Quality of Life