학술논문

Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome.
Document Type
Article
Source
Journal of Family Nursing. Aug2021, Vol. 27 Issue 3, p222-234. 13p.
Subject
*PARENT attitudes
*WELL-being
*MOTHERS
*ADAPTABILITY (Personality)
*STATE-Trait Anxiety Inventory
*STATISTICS
*PREDICTIVE tests
*SOCIAL support
*HYPOPLASTIC left heart syndrome
*PARENTS of children with disabilities
*SELF-evaluation
*RESEARCH methodology
*MULTIPLE regression analysis
*FATHERS
*BURDEN of care
*RISK assessment
*PSYCHOLOGICAL tests
*T-test (Statistics)
*PSYCHOSOCIAL factors
*QUALITY of life
*QUESTIONNAIRES
*DESCRIPTIVE statistics
*REPEATED measures design
*CHI-squared test
*RESEARCH funding
*FAMILY relations
*PSYCHOLOGICAL adaptation
*STATISTICAL sampling
*DATA analysis software
*STATISTICAL correlation
*DATA analysis
*PSYCHOLOGICAL stress
*ALGORITHMS
Language
ISSN
1074-8407
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. [ABSTRACT FROM AUTHOR]