Institutional and family support impact on health-related quality of life of children with autism spectrum disorders during the COVID-19 pandemic

IF 1.6 Q2 NURSING

Journal of Child and Adolescent Psychiatric Nursing Pub Date : 2024-01-16 DOI:10.1111/jcap.12450

Heni D. Windarwati, Retno Lestari, Ridhoyanti Hidayah, Haliza Hasan, Niken A. L. Ati, Mira W. Kusumawati, Irhamna N. Selena, Bergita Dumar, Gemi Rahayu

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引用次数: 0

Abstract

Problems

Children with autism spectrum disorder (ASD) tend to have a notably poorer quality of life than the general population, especially during the COVID-19 pandemic. This study aimed to analyze the association between institutional support and family support on the health-related quality of life (HRQoL) of children with ASD during the COVID-19 pandemic.

Methods

A cross-sectional study was conducted in October 2022 in a School for Special Needs in Malang City, East Java Province, Indonesia. The pediatric quality of life inventory (PedsQL) and Institutional and Family Support questionnaire were used to measure the HRQoL and support perceived by parents of children with ASD. We analyzed each component of the PedsQL and the Institutional and Family Support questionnaire. The independent T-test was performed to analyze the association between HRQoL and perceived support by parents of children with ASD.

Findings

The results showed that most participants (72.7%) were women aged 40. As many as 69.39% of participants had more than one child, and 16.33% declared they had other children who experienced the same problem (special needs children). This study indicated that the average health-related quality of life score in children with ASD was 57.41 (9.418). The finding of this study showed a significant mean difference in HRQoL scores in children with ASD who received high institutional and family support compared to those who had low (p = 0.028, 95% confidence interval [CI] = −11.071 to 0.664).

Conclusion

Institutional support positively impacts children with ASD's quality of life. Therefore, it is essential to improve the adequacy of support felt by families while caring for children with ASD.

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在 COVID-19 大流行期间，机构和家庭支持对自闭症谱系障碍儿童健康相关生活质量的影响

问题自闭症谱系障碍（ASD）儿童的生活质量往往明显低于普通人群，尤其是在 COVID-19 大流行期间。本研究旨在分析在 COVID-19 大流行期间，机构支持和家庭支持对自闭症谱系障碍儿童健康相关生活质量（HRQoL）的影响。方法 2022年10月，在印度尼西亚东爪哇省玛琅市的一所特殊需求学校开展了一项横断面研究。研究采用儿科生活质量量表（PedsQL）和机构与家庭支持问卷来测量 ASD 儿童家长的 HRQoL 和支持感知。我们分析了儿科生活质量量表（PedsQL）和机构与家庭支持问卷的每个组成部分。我们采用独立 T 检验来分析 ASD 儿童家长的 HRQoL 与感知到的支持之间的关联。结果结果显示，大多数参与者（72.7%）为 40 岁的女性。多达 69.39% 的参与者有一个以上的孩子，16.33% 的参与者宣称他们有其他遇到同样问题的孩子（有特殊需要的孩子）。这项研究表明，患有 ASD 的儿童与健康相关的生活质量平均得分为 57.41 分（9.418）。研究结果表明，获得机构和家庭支持较多的 ASD 儿童与获得机构和家庭支持较少的 ASD 儿童相比，在 HRQoL 平均得分上存在显著差异（p = 0.028，95% 置信区间 [CI] = -11.071 至 0.664）。结论机构支持对 ASD 儿童的生活质量有积极影响。因此，必须提高家庭在照顾 ASD 儿童时所感受到的支持的充分性。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Child and Adolescent Psychiatric Nursing NURSING-

CiteScore

2.90

自引率

6.70%

发文量

期刊介绍： Journal of Child and Adolescent Psychiatric Nursing (JCAPN) is the only nursing journal to focus exclusively on issues of child and adolescent mental health around the world. As a primary resource for nurses and other healthcare professionals in clinical practice, educator roles, and those conducting research in mental health and psychiatric care, the journal includes peer-reviewed, original articles from a wide range of contributors in a broad variety of settings.