ArticleHealth expectations : an international journal of public participation in health care and health policy2024
Co-designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.
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
5 citing papers in PubMed, 8 citations in OpenAlex.
- Using Non-Standard Research Methods to Explore the Perspectives of People With Intellectual Disabilities on Sensitive Topics: A Discussion of the Research Paradigm, Data Collection Methods and Data Analysis.Journal of applied research in intellectual disabilities : JARID · 2026Article
- Participatory Rapid Appraisal and Focus Groups to co-design technology-supported integrated care.PloS one · 2026Article
- Adapting Experience-Based Co-Design to Disability Research: Co-Producing the CycLink Co-Design Study.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- The All Together Group: Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities in Social Care Settings.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Co-designing resources to support older people with intellectual disabilities and their families plan for parental death and transitions in care.Health expectations : an international journal of public participation in health care and health policy · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 1 institution in 1 country.
Funding
Abstract
backgroundOlder people with intellectual disabilities and their families report a lack of support for planning for parental death and transitions in care. This article aims to demonstrate the process of co-designing resources to support older people with intellectual disabilities and their families to plan for the future.
methodsFollowing interviews and focus groups with older people with intellectual disabilities and their families, we used an adapted experience-based co-design process to develop planning ahead resources. This included a 'trigger film' summarising findings from the earlier interview study, 12 co-design workshops and a user feedback phase.
resultsThe co-design group developed a set of 102 'Planning Ahead Cards' to help families to talk about the future and prepare for meetings with social care professionals. The group made decisions about the content, format and design of resources, and how co-design workshops would run. The user feedback phase led to changes to the cards, and families and stakeholder groups suggested that they would be useful for planning ahead.
conclusionThe Planning Ahead Cards may facilitate planning for parental death and transitions in care for older people with intellectual disabilities and their families. The co-design approach was key to ensuring that the resources were useful and accessible for families. PATIENT OR PUBLIC CONTRIBUTION: People with intellectual disabilities and their families contributed to the design of the resources through the co-design workshops and feedback phase. The research team includes a research assistant with intellectual disabilities who co-facilitated co-design workshops and co-authored this article.
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What OpenQuestion holds
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.