Background: A paucity of qualitative research on sensitive topics that focuses on participants with intellectual disabilities leaves their views unexplored. This scoping review mainly aimed to provide an overview of qualitative data collection methods used in research involving participants with intellectual disabilities to explore death and…

Background: Gaining insight into sleep-wake patterns of persons with intellectual disabilities is commonly done using wrist actigraphy. For some people, contactless alternatives are needed. This study compares a contactless bed sensor with wrist actigraphy to monitor sleep-wake patterns of people with moderate to profound intellectual…

Background: Views can be collected from individuals (self-report) or others on their behalf (proxy-report). Objective: We aimed to review the literature on methods and statistical approaches used to evaluate observer versus self-report responses from individuals with intellectual disability or Down syndrome. Methods: A series of key questions…

Background: For people with intellectual disabilities (ID), social networks play a key role in facilitating social inclusion, health, and quality of life. This study shows that a multi-informant approach to collecting social network data improves our understanding of the social worlds of people with Down Syndrome (DS). Method: A mixed methods…

Background: Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of these challenges. Methods: The challenges are…

Background: We conducted a rapid scoping review to identify how inclusive research teams use technology during the research process that could support remote collaboration during public health emergencies like the COVID-19 pandemic. Method: We searched three databases and conducted a hand search. Two independent reviewers screened 1498 abstracts…

Background: Experiences of people with intellectual disability are often reported by proxy, excluding the person's own perception. To assist people with intellectual disabilities ability to communicate their own experiences, the current study explored the feasibility, reliability and validity of experience sampling methods (ESMs) for people with…

Background: Providers of supported living services to adults with intellectual disabilities (IDs) in the United Kingdom have procedures in place to monitor injuries; this provides opportunity to learn about the injuries being reported and recorded. The aim was to determine the incidence, causes and types of injuries experienced by 593 adults with…

Background: Statements or commitments making use of numbers have an important place in government policy. They appear at all stages of the policy process: campaigning, formulation, monitoring and evaluation. Many types of sources are involved including research studies, national survey information, routine operational data collections and special…

Background: Scholars have called for research approaches that actively include and are driven by people with intellectual disabilities, but the process of inclusive data analysis has been scarcely documented in the literature. This paper demonstrates the process university researchers and a group of self-advocates used to analyse and interpret…

Background: The Special Olympics offer the opportunity for athletes with intellectual disabilities to participate in a range of sports at regional, national and international level. A parallel Healthy Athletes programme was introduced to ensure safety at the games but also to collect data on the health needs of those with intellectual disabilities…

Background: The language, format and length of typical national health survey questionnaires may make them inaccessible to many school-aged children with an intellectual disability. Materials and Methods: Using the standard delivery protocol, the WHO Health Behaviour in School-aged Children (HBSC) Questionnaire, currently in use in 43 countries,…

Background: Evidence suggests that people with intellectual disabilities experience secondary health conditions and report inequities in health status and access to health systems. Reliable information is essential to identify health disparities. A review of health interview and health examination surveys conducted in 17 European countries was…

Background: Adults with intellectual or developmental disabilities need dietary monitoring but are not likely to be able to provide accurate dietary intake data via traditional methods. Pilot study efforts to meet their support needs with a novel and practical approach to dietary intake data collection are described in this brief report. Materials…

Background: The aim of this study was to analyse the impact of medical conditions of children with profound intellectual and multiple disabilities on the professional support they receive in centres for special education. Method: The medical files, the daily records and daily communication records between parents and professionals were reviewed…