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Family quality of life: perceptions of parents of children with developmental disabilities in Bosnia and Herzegovina.家庭生活质量:波斯尼亚和黑塞哥维那发育障碍儿童家长的看法
Int J Dev Disabil. 2020 Apr 23;68(3):274-280. doi: 10.1080/20473869.2020.1756114. eCollection 2022.
3
The Association between Parenting Stress, Positive Reappraisal Coping, and Quality of Life in Parents with Autism Spectrum Disorder (ASD) Children: A Systematic Review.自闭症谱系障碍(ASD)儿童家长的育儿压力、积极重新评价应对方式与生活质量之间的关联:一项系统综述。
Healthcare (Basel). 2021 Dec 28;10(1):52. doi: 10.3390/healthcare10010052.
4
Parental Quality of Life and Involvement in Intervention for Children or Adolescents with Autism Spectrum Disorders: A Systematic Review.自闭症谱系障碍儿童或青少年家长的生活质量及参与干预情况:一项系统综述
J Pers Med. 2021 Sep 8;11(9):894. doi: 10.3390/jpm11090894.
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Parent engagement in autism-related care: a qualitative grounded theory study.父母参与自闭症相关护理:一项质性扎根理论研究。
Health Psychol Behav Med. 2018 Dec 15;7(1):1-18. doi: 10.1080/21642850.2018.1556666.
6
Gaining super control: Psychoeducational group intervention for adolescents with mild intellectual disability and their parents.获得超级控制权:针对轻度智力残疾青少年及其父母的心理教育团体干预
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A randomized clinical trial of a virtual-training program for teaching applied-behavior-analysis skills to parents of children with autism spectrum disorder.一项针对自闭症谱系障碍儿童家长的应用行为分析技能虚拟培训项目的随机临床试验。
J Appl Behav Anal. 2020 Sep;53(4):1856-1875. doi: 10.1002/jaba.778. Epub 2020 Sep 28.
8
Stress and Coping Styles in Mothers of Children with Autism Spectrum Disorder.自闭症谱系障碍儿童母亲的压力与应对方式
Indian J Psychol Med. 2020 Apr 25;42(3):225-232. doi: 10.4103/IJPSYM.IJPSYM_333_19. eCollection 2020 May-Jun.
9
Self-stigma and its associations with stress and quality of life among Malaysian parents of children with autism.马来西亚自闭症儿童父母的自我污名及其与压力和生活质量的关系。
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"Managing the Wait": Parents' Experiences in Accessing Diagnostic and Treatment Services for Children and Adolescents Diagnosed With Autism Spectrum Disorder.“应对等待”:父母为被诊断患有自闭症谱系障碍的儿童和青少年获取诊断及治疗服务的经历
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探索培训对自闭症儿童家长短期生活质量和压力的潜在影响:综合家长自闭症培训模块

Exploring the Potential Impact of Training on Short-Term Quality of Life and Stress of Parents of Children with Autism: The Integrative Parents' Autism Training Module.

作者信息

Mavroeidi Nikoletta, Sifnaios Christos, Ntinou Ariadne, Iatrou Giorgos, Konstantakopoulou Olympia, Merino Martínez María, Nucifora Martina, Tanrikulu Ibrahim, Vadolas Antonios

机构信息

Department of Scientific Documentation and Education, Child and Adolescent Center, 12123 Peristeri, Greece.

EPIONI Greek Carers Network, 15125 Marousi, Greece.

出版信息

Int J Environ Res Public Health. 2024 Apr 13;21(4):474. doi: 10.3390/ijerph21040474.

DOI:10.3390/ijerph21040474
PMID:38673385
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11050325/
Abstract

Parents of autistic children experience high levels of parental stress and low quality of life related to the demanding child caring burden they experience. Parent education and training programs are acknowledged to improve parental well-being and reduce parenting stress. In the framework of the Erasmus+ Integrative Autism Parents Training Project (IPAT), we developed the IPAT Training Module based on parents' expressed needs, in order to improve parental quality of life (QoL) and decrease their perceived stress. Sixty-two parents from four countries participated in the IPAT Module Training activity. We used WHOQOL-BREF and Perceived Stress Scale (PSS-10 version) for QoL and stress, respectively, before and after training and a study-specific questionnaire to assess participants' satisfaction. Parents' QoL improved significantly in the environment domain and specific items, while stress levels remained unmodified. Training appeared more advantageous for parents with lower initial QoL and those whose child had been enrolled in a special education program for an extended duration. Parents were quite satisfied, in particular those with lower initial social relationships QoL. Larger studies including a control group are necessary to support preliminary evidence provided by this study, identify additional effect moderators, and disentangle the contribution of different components of the training.

摘要

自闭症儿童的父母承受着高水平的育儿压力,且由于育儿负担繁重,生活质量较低。家长教育和培训项目被认为可以改善家长的幸福感并减轻育儿压力。在伊拉斯谟+综合自闭症家长培训项目(IPAT)的框架下,我们根据家长表达的需求开发了IPAT培训模块,以提高家长的生活质量(QoL)并减轻他们感受到的压力。来自四个国家的62位家长参加了IPAT模块培训活动。我们在培训前后分别使用世界卫生组织生活质量简表(WHOQOL-BREF)和感知压力量表(PSS-10版本)来评估生活质量和压力,并使用一份针对该研究的问卷来评估参与者的满意度。家长的生活质量在环境领域和特定项目上有显著改善,而压力水平则没有变化。培训对初始生活质量较低以及孩子参加特殊教育项目时间较长的家长似乎更有利。家长们相当满意,尤其是那些初始社会关系生活质量较低的家长。需要开展包括对照组的更大规模研究,以支持本研究提供的初步证据,确定其他效应调节因素,并厘清培训不同组成部分的作用。