Parental Perspectives on Early Life Screening and Genetic Testing for ASD: A Systematic Review.

IF 3.2 2区 心理学 Q1 PSYCHOLOGY, DEVELOPMENTAL
Katerina Dounavi, Meral Koldas
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Abstract

Autism Spectrum Disorder (ASD) is a prevalent neurodevelopmental condition for which no prenatal or early life screening tests exist. Early life recognition of ASD is key to accessing behavioral intervention when brain plasticity is at its peak. The purpose of our study was to systematically review the literature researching parental perspectives around early life screening for autism and specifically genetic testing. A total of 30 studies were included and coded against the following variables: parental characteristics, child characteristics, research design, data collection and data analysis methods, type of early screening, and parental perspectives towards early life screening and genetic testing. The outcomes of the review showed that caregivers need more knowledge about ASD genetic testing, they are in general in favor of early life screening, and they prefer to access ASD genetic testing and early behavioral intervention as early as possible. As emerging genetic tests are likely to increase diagnostic accuracy for ASD in the near future, it is of paramount importance for research and practice to embrace parental needs and preferences. Healthcare providers can be pivotal in empowering parents to make informed decisions through clear, compassionate communication and counseling. Future research should seek to fill in an essential gap in the literature, which is to capture parental views from a diverse population.

Abstract Image

家长对 ASD 早期筛查和基因检测的看法:系统回顾。
自闭症谱系障碍(ASD)是一种普遍存在的神经发育疾病,目前尚无产前或生命早期筛查测试。早期识别自闭症是在大脑可塑性达到顶峰时进行行为干预的关键。我们的研究旨在系统地回顾研究父母对自闭症早期筛查,特别是基因检测的看法的文献。共纳入 30 项研究,并根据以下变量进行编码:父母特征、儿童特征、研究设计、数据收集和数据分析方法、早期筛查类型以及父母对早期筛查和基因检测的看法。综述结果表明,照护者需要更多关于 ASD 基因检测的知识,他们普遍赞成生命早期筛查,并希望尽早获得 ASD 基因检测和早期行为干预。在不久的将来,新出现的基因检测可能会提高对 ASD 诊断的准确性,因此,研究和实践中接纳父母的需求和偏好至关重要。医疗保健提供者可以通过清晰、富有同情心的沟通和咨询,帮助家长做出明智的决定。未来的研究应努力填补文献中的一个重要空白,即从不同人群中收集家长的意见。
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来源期刊
CiteScore
8.00
自引率
10.30%
发文量
433
期刊介绍: The Journal of Autism and Developmental Disorders seeks to advance theoretical and applied research as well as examine and evaluate clinical diagnoses and treatments for autism and related disabilities. JADD encourages research submissions on the causes of ASDs and related disorders, including genetic, immunological, and environmental factors; diagnosis and assessment tools (e.g., for early detection as well as behavioral and communications characteristics); and prevention and treatment options. Sample topics include: Social responsiveness in young children with autism Advances in diagnosing and reporting autism Omega-3 fatty acids to treat autism symptoms Parental and child adherence to behavioral and medical treatments for autism Increasing independent task completion by students with autism spectrum disorder Does laughter differ in children with autism? Predicting ASD diagnosis and social impairment in younger siblings of children with autism The effects of psychotropic and nonpsychotropic medication with adolescents and adults with ASD Increasing independence for individuals with ASDs Group interventions to promote social skills in school-aged children with ASDs Standard diagnostic measures for ASDs Substance abuse in adults with autism Differentiating between ADHD and autism symptoms Social competence and social skills training and interventions for children with ASDs Therapeutic horseback riding and social functioning in children with autism Authors and readers of the Journal of Autism and Developmental Disorders include sch olars, researchers, professionals, policy makers, and graduate students from a broad range of cross-disciplines, including developmental, clinical child, and school psychology; pediatrics; psychiatry; education; social work and counseling; speech, communication, and physical therapy; medicine and neuroscience; and public health.
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