Ooi Khim Lynn, Ong Yin Sin, Jacob Sabrina Anne, Khan Tahir Mehmood
School of Pharmacy, Monash University Malaysia, Bandar Sunway, Selangor, Malaysia.
Neuropsychiatr Dis Treat. 2016 Apr 5;12:745-62. doi: 10.2147/NDT.S100634. eCollection 2016.
The lifelong nature of autism in a child has deep implications on parents as they are faced with a range of challenges and emotional consequences in raising the child. The aim of this meta-synthesis was to explore the perspectives of parents in raising a child with autism in the childhood period to gain an insight of the adaptations and beliefs of parents toward autism, their family and social experiences, as well as their perceptions toward health and educational services.
A systematic search of six databases (PubMed, EMBASE, PsychInfo, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, and Database of Abstracts of Reviews of Effects [DARE]) was conducted from inception up to September 30, 2014. Full-text English articles of qualitative studies describing parents' perceptions relating to the care of children younger than 12 years of age and diagnosed with a sole disorder of autism were included.
A total of 50 eligible articles were appraised and analyzed, identifying four core themes encompassing all thoughts, emotions, and experiences commonly expressed by parents: 1) The Parent, 2) Impact on the Family, 3) Social Impact, and 4) Health and Educational Services. Findings revealed that parents who have a child with autism experienced multiple challenges in different aspects of care, impacting on parents' stress and adaptation.
Health care provision should be family centered, addressing and supporting the needs of the whole family and not just the affected child, to ensure the family's well-being and quality of life in the face of a diagnosis of autism.
儿童自闭症的终身性对父母有着深远影响，因为他们在抚养孩子过程中面临一系列挑战和情感后果。本元综合研究的目的是探讨父母在儿童期抚养自闭症孩子的观点，以深入了解父母对自闭症、其家庭和社会经历的适应情况与信念，以及他们对健康和教育服务的看法。
对六个数据库（PubMed、EMBASE、PsychInfo、Cochrane对照试验中心注册库、Cochrane系统评价数据库和效果综述文摘数据库[DARE]）进行了从建库至2014年9月30日的系统检索。纳入了描述父母对12岁以下被诊断患有单一自闭症障碍儿童护理看法的定性研究的全文英文文章。
共评估和分析了50篇符合条件的文章，确定了四个核心主题，涵盖了父母通常表达的所有思想、情感和经历：1）父母；2）对家庭的影响；3）社会影响；4）健康和教育服务。研究结果表明，有自闭症孩子的父母在护理的不同方面经历了多重挑战，影响了父母的压力和适应能力。
医疗保健服务应以家庭为中心，满足并支持整个家庭的需求，而不仅仅是患病儿童的需求，以确保面对自闭症诊断时家庭的幸福和生活质量。
