Jamshidian Ehsan, Abed Elahe Hojati, Sourtiji Hossein, Azar Elahe Fathi, Hashemzadeh Mozhdeh, Mirzaie Hooshang
Department of Occupational Therapy, University of Social Welfare and Rehabilitation Sciences, Tehran, Iran.
Department of Occupational Therapy, School of Rehabilitation Sciences, Iran University of Medical Sciences, Tehran, Iran.
Iran J Public Health. 2023 Aug;52(8):1626-1641. doi: 10.18502/ijph.v52i8.13401.
Autism is a lifelong condition that seriously affects many aspects of children's and families' lives. The experience attained by living with a child with autism can be a valuable source of information to provide support and satisfactory services to children with autism and their families. We aimed to investigate the lived experiences of Iranian parents of children with autism.
The search was conducted in PubMed, Web of Science, Embase, Google Scholar, CINAHL, PsychInfo, SID, and Magiran until Nov 2021. Two reviewers screened the articles, applied inclusion criteria, critically evaluated articles using the Critical Appraisal Skills Program (CASP), and extracted study details according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) checklist. Thematic synthesis was used to analyze included studies.
From 2772 articles in the initial search, sixteen studies entered the final analysis. Four themes emerged, including treatment-related lived experience, individual lived experience, social lived experience, and occupational lived experience. Iranian parents of children with autism are confronted with negative experiences, including inaccurate diagnostic processes, lack of adequate support at the diagnosis time, low-quality treatment, psychological problems, and concern about the child's future. Also, Parent's experiences showed family problems, stigma, and problems with doing occupations.
Practitioners, policy-makers, and regulatory organizations should urgently consider issues mentioned in the parents' experiences to provide proper healthcare services for children with autism and their families.
自闭症是一种终身疾病，严重影响儿童及其家庭生活的许多方面。与自闭症儿童一起生活所获得的经验可以成为为自闭症儿童及其家庭提供支持和满意服务的宝贵信息来源。我们旨在调查伊朗自闭症儿童家长的生活经历。
检索截至2021年11月的PubMed、科学网、Embase、谷歌学术、CINAHL、PsychInfo、SID和Magiran。两名评审员筛选文章，应用纳入标准，使用批判性评估技能计划（CASP）对文章进行严格评估，并根据系统评价和Meta分析的首选报告项目（PRISMA）清单提取研究细节。采用主题综合法分析纳入的研究。
在初步检索的2772篇文章中，16项研究进入最终分析。出现了四个主题，包括与治疗相关的生活经历、个人生活经历、社会生活经历和职业生活经历。伊朗自闭症儿童家长面临着负面经历，包括诊断过程不准确、诊断时缺乏足够支持、治疗质量低、心理问题以及对孩子未来的担忧。此外，家长的经历还显示出家庭问题、耻辱感以及职业方面的问题。
从业者、政策制定者和监管组织应紧急考虑家长经历中提到的问题，以便为自闭症儿童及其家庭提供适当的医疗服务。
