Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome.
Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome.
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DOI：
10.1177/1074840720987309
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发表时间：
2021-08
影响因子：
3.1
通讯作者：
Sawin K
中科院分区：
文献类型：
--
作者：
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
左心发育不良综合征（HLHS）的生存率有了显著提高。对HLHS婴儿的父母的早期家庭功能、生活质量（QOL）或健康/调整知之甚少。随着时间的推移，父母/家庭的结果，预测因素，并在143名母亲和72名父亲的差异进行了检查。与公布的规范相比，父母报告家庭功能更好，但26%的人经历了家庭功能障碍。生活质量和幸福感明显低于成人标准。随着时间的推移，生活质量评分通常会下降，而自我报告的幸福感则会改善。来自母亲和父亲的回答显示出不同的趋势，母亲在大多数指标和大多数时间点上的得分更差。单亲是家庭功能较差的危险因素，但不是个人生活质量或幸福感较低的危险因素。家庭特征、压力和应对技能是预后的预测因素。父母对HLHS婴儿生活挑战的心理社会反应随时间而变化。需要有针对性的心理社会支持。
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.
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