Alenazi Dalal S, Hammad Sabry M, Mohamed Amal E
Department of Community Medicine, Saudi Board of Family Medicine Joint Program, Arar, Saudi Arabia.
Department of Public Health and Community Medicine, Faculty of Medicine, Mansoura University, Mansoura, Egypt.
J Family Community Med. 2020 Jan-Apr;27(1):15-22. doi: 10.4103/jfcm.JFCM_157_19. Epub 2020 Jan 13.
The quality of life (QOL) of the families of children with autism is lower than that of families of normal children or children with other disabilities. The study's aim was to describe the severity of effect on the domains of the QOL of caregivers of autistic children and to identify the characteristics of caregivers and children associated with impaired QOL.
This cross-sectional study included 84 parents of autistic children attending developmental abnormalities clinic in Arar city during January 1 to March 31, 2019. Parents of autistic children were interviewed using an Arabic version of the short-form 36 to assess their QOL. A mean score of <50 was considered to indicate poor QOL. Collected data were analyzed using the Statistical Package for the Social Sciences (SPSS, version 20.0). A Chi-square test was used for comparison between categorical variables.
Of 84 caregivers, 63.1% had impaired QOL. The main domains affected were energy/fatigue and role limitations resulting from emotional problems. Female gender, unemployment, and low income of caregivers were significant factors associated with poor QOL. Autistic children of the first birth order and with long duration of the disease were more likely to be associated with poor parental QOL. Gender, income, occupation, and duration of illness were associated with poor quality of life, but this was not statstically significant.
Slightly less than two-thirds of the caregivers had impaired QOL. Caregivers of autistic children need social and emotional support to help them to cope with this disability.
自闭症儿童家庭的生活质量（QOL）低于正常儿童家庭或其他残疾儿童家庭。该研究的目的是描述自闭症儿童照料者生活质量各领域受影响的严重程度，并确定与生活质量受损相关的照料者和儿童的特征。
这项横断面研究纳入了2019年1月1日至3月31日期间在阿拉尔市发育异常诊所就诊的84名自闭症儿童的家长。使用阿拉伯语版的简明健康调查问卷36项来访谈自闭症儿童的家长，以评估他们的生活质量。平均得分<50被认为表明生活质量较差。使用社会科学统计软件包（SPSS，版本20.0）对收集的数据进行分析。卡方检验用于分类变量之间的比较。
在84名照料者中，63.1%的人生活质量受损。受影响的主要领域是精力/疲劳以及情绪问题导致的角色限制。照料者的女性性别、失业和低收入是与生活质量差相关的显著因素。头胎出生且患病时间长的自闭症儿童更有可能与家长生活质量差相关。性别、收入、职业和患病时长与生活质量差有关，但这在统计学上并不显著。
略少于三分之二的照料者生活质量受损。自闭症儿童的照料者需要社会和情感支持来帮助他们应对这种残疾状况。
