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新诊断为自闭症谱系障碍儿童的父母效能感和社会支持对家庭生活质量的重要性:一项为期一年的随访研究。

The importance of parenting self-efficacy and social support for family quality of life in children newly diagnosed with autism spectrum disorder: A one-year follow-up study.

机构信息

School of Nursing, Sun Yat-sen University, Guangzhou, China.

Child Development and Behavior Center, The Third Affiliated Hospital of Sun Yat-Sen University Lingnan Hospital, Guangzhou, China.

出版信息

Autism Res. 2024 Jan;17(1):148-161. doi: 10.1002/aur.3061. Epub 2023 Nov 21.

Abstract

Improving the quality of family life (FQoL) is one of the ultimate goals for autism spectrum disorder (ASD) intervention, and parenting self-efficacy and social support are critical for the well-being of families. However, longitudinal studies focusing on FQoL and its predictors for families of children with ASD are scarce. This study aims to describe the characteristics of FQoL among parents of children newly diagnosed with ASD at two waves (newly diagnosed and diagnosed after one year) and to explore the predictors of FQoL at two waves. It was conducted at a tertiary hospital in Guangzhou, China. A total of 156 parents and their children were included in Wave 1, followed up with 110 in Wave 2 after 1 year. The overall satisfaction of FQoL improved (t = -2.128, p < 0.05), while satisfaction with physical/material well-being decreased (t = 5.972, p < 0.01). Additionally, the overall importance rating of FQoL improved but did not have statistical significance (p > 0.05). Parents with higher parenting self-efficacy (β = 0.716, P < 0.01), and more subjective social support (β = 1.127, p < 0.001) reported higher satisfaction with FQoL, and those with better social support utilization (β = 1.066, p < 0.05) reported higher importance for FQoL. FQoL needs to be improved in the early stage of ASD diagnosis, and parental self-efficacy and social support can serve as the intervention targets.

摘要

提高家庭生活质量(FQoL)是自闭症谱系障碍(ASD)干预的最终目标之一,而父母自我效能感和社会支持对家庭的幸福至关重要。然而,关注 ASD 儿童家庭 FQoL 及其预测因素的纵向研究很少。本研究旨在描述新诊断为 ASD 儿童的父母在两个时间点(新诊断和诊断后一年)的 FQoL 特征,并探讨两个时间点 FQoL 的预测因素。该研究在中国广州的一家三级医院进行。共有 156 名父母及其子女在第 1 波(新诊断)中被纳入,1 年后在第 2 波(诊断后 1 年)中随访了 110 名。整体 FQoL 的满意度提高(t=-2.128,p<0.05),而对物质/身体健康的满意度下降(t=5.972,p<0.01)。此外,FQoL 的总体重要性评分提高,但无统计学意义(p>0.05)。父母自我效能感较高(β=0.716,P<0.01)和主观社会支持较多(β=1.127,p<0.001)的父母报告 FQoL 满意度较高,而社会支持利用率较高(β=1.066,p<0.05)的父母报告 FQoL 重要性较高。ASD 诊断早期需要改善 FQoL,父母自我效能感和社会支持可以作为干预目标。

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