Studying the Experiences of Children With Moderate to Profound Intellectual Disabilities in Research: A Systematic Review.

IF 2.1 2区 医学 Q1 EDUCATION, SPECIAL
Satu Peltomäki, Sirpa Granö, Ella Rönkkö, Raija Pirttimaa, Kirsi Pyhältö, Elina Kontu
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Abstract

Background: Children with moderate to profound intellectual disabilities are not usually invited to share their lived experiences through research. In addition to their difficulties in communication and cognitive functions, their exclusion is caused by the lack of suitable data collection instruments. Since the 1990s, more research has focused on the lived experiences of people with intellectual disabilities. The aim of this review is to examine how the experiences of children with moderate to profound intellectual disabilities have been studied.

Method: A systematic review was conducted in accordance with the PRISMA statement. Studies were searched from CINAHL, Education Collection, Sociology Collection, Social Science Database and PsycINFO in November 2023 and January 2025. Eligible studies had been published since the year 2000 in English or Finnish, included at least one child with moderate to profound intellectual disabilities and aimed to collect their experiences. General study details, population characteristics, and data collection details were extracted. The methodological quality was assessed with the Mixed Methods Appraisal Tool (MMAT). The analysis included a descriptive summary and inductive content analysis with intercoder reliability assessment.

Results: The eligible studies (n = 41) used individual interviews, questionnaires, task-based approaches, observations and focus groups. Participants were mainly 12 years or older, had moderate intellectual disabilities, and could communicate with speech. The adaptations (i.e., any adjustments made for specific needs) comprised four top-level categories and 27 subcategories. The most commonly used adaptations and adaptations for different participant groups are presented.

Conclusions: Individual interviews and questionnaires with simple adaptations usually suit children with moderate intellectual disabilities who use speech to communicate. Individual interviews with multiple adaptations can be suitable for a wider group. Some task-based approaches and profound and long-lasting observations can be considered with children with non-symbolic communication and severe or profound intellectual disabilities.

研究中度至重度智障儿童的经历:系统回顾。
背景:通常不邀请中度至重度智力残疾儿童通过研究分享他们的生活经历。除了他们在沟通和认知功能方面的困难外,他们被排除在外的原因是缺乏合适的数据收集工具。自20世纪90年代以来,更多的研究集中在智障人士的生活经历上。本综述的目的是研究如何研究中度至重度智力残疾儿童的经历。方法:按照PRISMA声明进行系统评价。检索时间为2023年11月和2025年1月,检索时间为CINAHL、Education Collection、Sociology Collection、Social Science Database和PsycINFO。自2000年以来,用英语或芬兰语发表了符合条件的研究,包括至少一名患有中度至重度智力残疾的儿童,旨在收集他们的经验。提取一般研究细节、人口特征和数据收集细节。采用混合方法评价工具(MMAT)评价方法学质量。分析包括描述性总结和归纳性内容分析以及互码器可靠性评估。结果:符合条件的研究(n = 41)采用了个人访谈、问卷调查、基于任务的方法、观察和焦点小组。参与者主要是12岁或以上,有中度智力障碍,可以用语言交流。调整(即针对具体需要所作的任何调整)包括四个最高类别和27个子类别。介绍了最常用的适应和不同参与者群体的适应。结论:简单适应性的个别访谈和问卷调查适合使用语言进行交流的中度智障儿童。具有多种适应性的个人面试可以适用于更广泛的群体。一些基于任务的方法和深刻而持久的观察可以考虑用于非符号沟通和严重或深度智力残疾的儿童。
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来源期刊
CiteScore
5.60
自引率
5.60%
发文量
81
期刊介绍: The Journal of Intellectual Disability Research is devoted exclusively to the scientific study of intellectual disability and publishes papers reporting original observations in this field. The subject matter is broad and includes, but is not restricted to, findings from biological, educational, genetic, medical, psychiatric, psychological and sociological studies, and ethical, philosophical, and legal contributions that increase knowledge on the treatment and prevention of intellectual disability and of associated impairments and disabilities, and/or inform public policy and practice. Expert reviews on themes in which recent research has produced notable advances will be included. Such reviews will normally be by invitation.
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