ArticleJournal of applied research in intellectual disabilities : JARID2022
Facilitating the inclusion of adults with intellectual disability as direct respondents in research: Strategies for fostering trust, respect, accessibility and engagement.
Article in Journal of applied research in intellectual disabilities : JARID, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers, 2 of them syntheses that pooled it.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
17 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Using photovoice to engage underserved children with neurodevelopmental disorders and their caregivers in health research: a mixed methods systematic review.Frontiers in rehabilitation sciences · 2025Pooled it
- Responsible inclusion: A systematic review of consent to social-behavioral research with adults with intellectual disability in the US.Disability and health journal · 2024Pooled it
- "I make my own decisions": Views on precision medicine research participation decisions from adults with intellectual disability.HGG advances · 2026Article
- Cocreating an Inclusive Evaluation: Lessons Learned From Special Olympics Project ALL STAR Across Six US States.American journal of public health · 2026Article
- From Methodological Challenges to Recommendations for Future Practice: Lessons From an Ethnographic Study With People With Intellectual Disabilities.Journal of applied research in intellectual disabilities : JARID · 2026Article
- "It is important to me to know where the information is going": Views of adults with intellectual disability on data sharing in precision medicine research.Genetics in medicine open · 2026Article
- Co-creating a Canadian autism mental health literacy resource: a qualitative analysis of advisory perspectives.Health research policy and systems · 2025Article
- Evaluation of a Co-Research Program: optimising engagement in research.British journal of learning disabilities · 2025Article
- Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills.International journal for equity in health · 2025Article
- A Scoping Review of the Ways Gatekeepers May Hinder or Promote Opportunities for People With Intellectual and/or Developmental Disabilities to Learn About Research Participation.Journal of intellectual disability research : JIDR · 2025Article
- Guidelines for the Creation of Accessible Consent Materials and Procedures: Lessons from Research with Autistic People and People with Intellectual Disability.Autism in adulthood · 2025Article
- Public Health Approaches to Promote Health Equity for Individuals with Intellectual and Developmental Disabilities: A Systematic Review.Annals of public health & epidemiology · 2025Article
- Inclusive research with individuals with Down syndrome at risk for dementia.Dementia & neuropsychologia · 2025Review
- Repositioning intellectual disability in the ethics of digital mental health technologies.Frontiers in psychiatry · 2025Article
- Subcutaneous electroencephalography monitoring for people with epilepsy and intellectual disability: co-production workshops.BJPsych open · 2024Article
- Invisible: People with Disability and (In)equity in Precision Medicine Research.The American journal of bioethics : AJOB · 2024Article
- Toward Equity in Research on Intellectual and Developmental Disabilities.American journal on intellectual and developmental disabilities · 2023Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
backgroundAdults with intellectual disability experience disparities in social determinants of health and health outcomes. While new knowledge can advance health equity, adults with intellectual disability are frequently excluded from being direct respondents in research. Their inclusion requires addressing scientific and ethical challenges that contribute to their exclusion.
methodWe describe our multi-phased process, inclusive of community-engagement, to develop a self-report survey for adults with intellectual disability and share findings from an institutional ethnography conducted to identify strategies for facilitating inclusion. We also assessed indicators of the quality of these strategies.
resultsWe identified building trust, showing respect, designing in accessibility, maximising flexibility and allowing individualised accommodations as strategies that foster inclusion. Multiple indicators validate the effectiveness of these strategies.
conclusionsResearchers can promote first-person decision-making and direct research participation by focusing on promoting accessibility, trust, respect and engagement.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.