ArticleJournal of intellectual disabilities : JOID2019
'I'm sure we made it a better study…': Experiences of adults with intellectual disabilities and parent carers of patient and public involvement in a health research study.
Article in Journal of intellectual disabilities : JOID, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
27 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Involving Carers in Therapy for Adults With Intellectual Disabilities: A Systematic Review of Client, Carer and Therapist Perspectives.Journal of applied research in intellectual disabilities : JARID · 2025Pooled it
- Evaluating Process and Outcomes of Public Involvement in Applied Health and Social Care Research: A Rapid Systematic Review.Health expectations : an international journal of public participation in health care and health policy · 2025Pooled it
- Social care occupational therapy and learning disabilities: professional perspectives on communication, collaboration and making a difference.International journal of qualitative studies on health and well-being · 2026Article
- Building Sustainable Patient Involvement in Rare Condition Research.Molecular genetics & genomic medicine · 2026Article
- Applying adaptive research methods to explore health literacy in young people with intellectual disability.Health promotion international · 2026Article
- Promoting Accessible Research for Children With Intellectual Disabilities; Lessons Learnt From Adaptations Through the Covid-19 Pandemic.Journal of intellectual disability research : JIDR · 2026Article
- Navigating care together: developing a collaborative checklist to improve care for children with intellectual disabilities.Research involvement and engagement · 2025Article
- Evaluation of a Co-Research Program: optimising engagement in research.British journal of learning disabilities · 2025Article
- Consumer Involvement in the Co-Design of Diabetes Self-Management Smartphone Apps: A Scoping Review.Applied clinical informatics · 2025Article
- "We're all in this together": patient and public involvement and engagement in developing a new psychosocial intervention for adults with an intellectual disability who display aggressive challenging behaviour.Research involvement and engagement · 2025Article
- Article
- Exploring barriers and solutions to consumer involvement in health service research using a nominal group technique.Research involvement and engagement · 2024Article
- Meaningful Social Inclusion and Mental Well-Being Among Autistic Adolescents and Emerging Adults: Protocol for a Community-Based Mixed Methods Study.JMIR research protocols · 2024Article
- People with intellectual disabilities' experiences of primary care health checks, screenings and GP consultations: a systematic review and meta-ethnography.International journal of developmental disabilities · 2024Review
- Promoting Healthy Behaviors Among Adolescents and Young Adults With Intellectual Disability: Protocol for Developing a Digital Intervention With Co-Design Workshops.JMIR research protocols · 2023Article
- Roles, outcomes, and enablers within research partnerships: A rapid review of the literature on patient and public involvement and engagement in health research.Research involvement and engagement · 2023Review
- To summarise the approach to and findings of the PPIE undertaken as part of a programme of secondary research with a vulnerable, hard to reach population during the COVID-19 pandemic.Research involvement and engagement · 2023Article
- The experience of patient partners in research: a qualitative systematic review and thematic synthesis.Research involvement and engagement · 2022Review
- A Qualitative Exploration of Stakeholder Involvement in Decision-Making for Alcohol Treatment and Prevention Services.International journal of environmental research and public health · 2022Article
- Public and Patient Involvement in Doctoral Research During the COVID-19 Pandemic: Reflections on the Process, Challenges, Impact and Experiences From the Perspectives of Adults With Cerebral Palsy and the Doctoral Researcher.Frontiers in rehabilitation sciences · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
Patient and public involvement is considered integral to health research in the United Kingdom; however, studies documenting the involvement of adults with intellectual disabilities and parent carers in health research studies are scarce. Through group interviews, this study explored the perspectives and experiences of a group of adults with intellectual disabilities and a group of parent carers about their collaborative/participatory involvement in a 3-year study which explored the effectiveness of annual health checks for adults with intellectual disabilities. Thematic analysis identified five key themes consistent across both groups; authenticity of participation, working together, generating new outcome measures, dissemination of findings and involvement in future research. Although reported anecdotally rather than originating from the analysis, increased self-confidence is also discussed. The groups' unique perspectives led to insights not previously considered by the research team which led to important recommendations to inform healthcare practice.
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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.