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

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.