ArticleBMC palliative care2016
Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.
Article in BMC palliative care, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers, 2 of them syntheses that pooled it.
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Who cites it
11 citing papers in PubMed, 2 syntheses or guidelines pooled it, 51 citations in OpenAlex.
- International palliative care research priorities: A systematic review.BMC palliative care · 2020Pooled it
- A Systematized Review of Prioritization Methods Utilized in Community Health Needs Assessments Among Nonprofit Hospital Systems in the US.Journal of public health management and practice : JPHMPPooled it
- Understanding symptom occurrence and treatment in the palliative phase for people with intellectual disabilities: a protocol for a mixed-methods study.BMC palliative care · 2026Observational
- Palliative and end-of-life care in people with and without intellectual disabilities in primary care: identification, survival time, and healthcare utilization.Family practice · 2026Article
- Methodological reflections to support good practice in using nominal group techniques: Insights from applications in palliative care studies.Palliative medicine · 2025Article
- Improving palliative care for people with intellectual disability: a self-assessment of policies, practices and competencies in care services.BMC palliative care · 2023Article
- Article
- A scoping review of the evidence for community-based dementia palliative care services and their related service activities.BMC palliative care · 2022Article
- Article
- Application of community-based nutrition education needs assessment in reviewing the course plan of medical and nursing students.Medical journal of the Islamic Republic of Iran · 2021Article
- Stakeholders' engagement in co-producing policy-relevant knowledge to facilitate employment for persons with developmental disabilities.Health research policy and systems · 2020Article
Corrections and comments
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Authors and funding
14 authors at 10 institutions in 6 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEmpirical knowledge around palliative care provision and needs of people with intellectual disabilities is extremely limited, as is the availability of research resources, including expertise and funding. This paper describes a consultation process that sought to develop an agenda for research priorities for palliative care of people with intellectual disabilities in Europe.
methodsA two-day workshop was convened, attended by 16 academics and clinicians in the field of palliative care and intellectual disability from six European countries. The first day consisted of round-table presentations and discussions about the current state of the art, research challenges and knowledge gaps. The second day was focused on developing consensus research priorities with 12 of the workshop participants using nominal group technique, a structured method which involved generating a list of research priorities and ranking them in order of importance.
resultsA total of 40 research priorities were proposed and collapsed into eleven research themes. The four most important research themes were: investigating issues around end of life decision making; mapping the scale and scope of the issue; investigating the quality of palliative care for people with intellectual disabilities, including the challenges in achieving best practice; and developing outcome measures and instruments for palliative care of people with intellectual disabilities.
conclusionsThe proposal of four major priority areas and a range of minor themes for future research in intellectual disability, death, dying and palliative care will help researchers to focus limited resources and research expertise on areas where it is most needed and support the building of collaborations. The next steps are to cross-validate these research priorities with people with intellectual disabilities, carers, clinicians, researchers and other stakeholders across Europe; to validate them with local and national policy makers to determine how they could best be incorporated in policy and programmes; and to translate them into actual research studies by setting up European collaborations for specific studies that require such collaboration, develop research proposals and attract research funding.
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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.