先天性左心发育不全综合征患儿父母的家庭功能、生活质量和幸福感。
Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome.
机构信息
Milwaukee School of Engineering, WI, USA.
New England Research Institutes, Inc., Watertown, MA, USA.
出版信息
J Fam Nurs. 2021 Aug;27(3):222-234. doi: 10.1177/1074840720987309. Epub 2021 Feb 4.
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.
左心发育不全综合征（HLHS）患儿的存活率显著提高。然而，人们对于 HLHS 患儿的父母在早期的家庭功能、生活质量（QOL）或幸福感/适应性方面知之甚少。本研究旨在探讨 HLHS 患儿父母/家庭的长期预后、预测因素以及与 143 位母亲和 72 位父亲的差异。研究结果显示，与已发表的标准相比，患儿父母报告的家庭功能更好，但仍有 26%的家庭存在功能障碍。与成人标准相比，患儿父母的 QOL 和幸福感明显较低。QOL 评分总体随时间下降，而自我报告的幸福感则有所改善。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都较差。单亲家庭是家庭功能较差的一个危险因素，但对个体 QOL 或幸福感没有影响。家庭特征、压力和应对技巧是预测结果的因素。父母对 HLHS 患儿生活挑战的心理社会反应会随时间而变化。需要提供个性化的心理社会支持。
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