ArticleResearch involvement and engagement2025
"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.
Article in Research involvement and engagement, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers, 1 of them a synthesis that pooled it.
What it found
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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
3 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Perceptions of People With Intellectual Disabilities on Autonomy and Decision-Making in Daily Life: A Systematic Review and Synthesis of Qualitative Studies.Journal of intellectual disability research : JIDR · 2026Pooled it
- Patient and public involvement and engagement in co-designing guidance for mental health professionals supporting neurodivergent children and young people in child and adolescent mental health services.Research involvement and engagement · 2026Article
- "What does the word loneliness mean to you?" Reflections on co-developing public engagement workshops to facilitate discussions of loneliness with older adults from ethnically diverse groups.Research involvement and engagement · 2025Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
18 authors.
Funding
Abstract
backgroundAlthough there is consensus regarding the added value of adults with an intellectual disability and family carers as Patient and Public Involvement and Engagement (PPIE) members in research studies, there is limited reporting on the practice and impact of their involvement.
methodsPPIE input was integral to the application process and subsequent research activities in the NIHR-funded PETAL (PErsonalised Treatment packages for Adults With Learning disabilities) programme. We also conducted semi-structured interviews with five researchers/PPIE facilitators and four family carers, and a focus group with three adults with an intellectual disability who are members of the programme advisory groups. The GRIPP2 checklist guided the reporting of PPIE activities.
resultsThematic analysis identified four overarching themes: (a) Motivation for being a PPIE member, (b) Added value of PPIE input into research (c) Logistics and practicalities of PPIE activities, and (d) Insights and reflections. Family carers highlighted the benefit of giving a voice to adults with an intellectual disability in PPIE activities within research. Both PPIE groups were positive about being able to share their thoughts and feelings with the PETAL research team and making valued contributions to research activities. All stakeholders highlighted the importance of accessible meeting formats to facilitate PPIE activities. They also reflected on how meaningful collaboration could enhance research in the field of intellectual disability. Researchers raised the need for greater diversity within PPIE groups.
conclusionsFuture work should aim to further develop PPIE processes and identify strategies to maximise the diversity and inclusion of adults with an intellectual disability and family carers in research advisory groups.
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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.