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伊朗自闭症儿童父母的生活质量

The Quality of Life of Iranian Mothers and Fathers of Children with Autism.

作者信息

Samadi Sayyed Ali, Ghanimi Farzaneh, McConkey Roy

机构信息

Institute of Nursing and Health Research, University of Ulster, Belfast BT15 1AP, UK.

Deputy of the Daily Rehabilitation Centre Section, Iranian State Welfare Organization (ISWO), Tehran 25529, Iran.

出版信息

Children (Basel). 2025 Mar 31;12(4):454. doi: 10.3390/children12040454.

Abstract

UNLABELLED

Autism is a complex neurodevelopmental condition that has life-long impacts on individuals and their families, who are the main caregivers. This study investigated the self-reported quality of life (QoL) of Iranian mothers and fathers and aimed to identify the predictors associated with higher scores on the World Health Organisation's QoL brief measure (WHOQOL-BREF), particularly those related to their child's autism.

METHODOLOGY

A cross-sectional study was conducted with two national samples of parents: one in which the mothers and father were related (n = 119 families) and a second sample involving 383 unrelated mothers and fathers, making a total of 623 Iranian parents of children diagnosed with autism spectrum disorder (ASD). Participants completed self-report measures assessing QoL, perceived child-rearing stress, social support, and coping strategies as well as pertinent demographic information of themselves and their child. These were chosen on the basis of previous research. Data were analysed using descriptive statistics and linear regression analysis.

RESULTS

There were few significant differences between mothers and fathers in both samples on the various rating scales. Regression analyses identified satisfaction with personal health and with their marriage, along with support from family as the main predictors of higher quality-of-life ratings. Access to professionals and positive interactions with their children augmented the contribution to parents' overall quality of life. The children's autism had minimal direct impact on the parental quality of life although it likely accentuated the importance to parents of the identified predictors.

DISCUSSION

The findings support the case for services to adopt a family-centred approach to the support they provide and for a greater engagement with fathers. Three strands are proposed for future research: recruiting families who receive little or no support, the identification of strategies for meeting the personal needs of parents, and undertaking longitudinal studies of interventions to improve family quality of life and the outcomes these have on the person with autism.

摘要

未标注

自闭症是一种复杂的神经发育疾病,会对患者及其家庭(主要照料者)产生终身影响。本研究调查了伊朗父母自我报告的生活质量(QoL),旨在确定与世界卫生组织生活质量简表(WHOQOL - BREF)得分较高相关的预测因素,特别是那些与孩子自闭症相关的因素。

方法

对两个全国性的父母样本进行了横断面研究:一个样本中父母是亲属关系(n = 119个家庭),另一个样本包含383名无亲属关系的父母,共有623名伊朗自闭症谱系障碍(ASD)患儿的父母参与。参与者完成了自我报告测量,评估生活质量、感知到的育儿压力、社会支持、应对策略以及他们自己和孩子的相关人口统计学信息。这些是根据先前的研究选择的。使用描述性统计和线性回归分析对数据进行分析。

结果

在两个样本中,父母在各种评分量表上几乎没有显著差异。回归分析确定对个人健康和婚姻的满意度以及来自家庭的支持是生活质量评分较高的主要预测因素。获得专业人员的帮助以及与孩子的积极互动增加了对父母总体生活质量的贡献。孩子的自闭症对父母生活质量的直接影响最小,尽管它可能突出了已确定预测因素对父母的重要性。

讨论

研究结果支持服务机构采用以家庭为中心的支持方式并让父亲更多参与的观点。提出了未来研究的三个方向:招募很少或没有得到支持的家庭,确定满足父母个人需求的策略,以及对改善家庭生活质量的干预措施及其对自闭症患者的影响进行纵向研究。

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