ArticlePalliative medicine2016
Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care.
Article in Palliative medicine, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 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
21 citing papers in PubMed, 2 syntheses or guidelines pooled it, 77 citations in OpenAlex.
- Key Factors for Quality End-of-Life Care for People With Intellectual Disabilities. A Critical Interpretive Synthesis Review Using a 'Best-Fit' Framework Approach.Journal of applied research in intellectual disabilities : JARID · 2026Pooled it
- The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review.Palliative medicine · 2020Pooled it
- Ethical dimensions in nursing care for individuals with intellectual disabilities.Nursing ethics · 2026Review
- "I Don't Have to Say That They Are Dying Now": Professionals' Perspectives on Death-Related Communication With Children and Young People With Intellectual Disabilities in Paediatric Palliative Care in Germany.Journal of applied research in intellectual disabilities : JARID · 2025Article
- Group cognitive stimulation therapy for people with intellectual disability and dementia: feasibility randomised controlled trial.BJPsych open · 2025Article
- Article
- A Qualitative Exploration of Healthcare Workers' Experiences of End of Life Care for People With an Intellectual Disability.Journal of advanced nursing · 2025Article
- Palliative care communication between patients with intellectual disabilities and hospice staff: a Conversation Analysis pilot study.BMJ open · 2025Article
- The Views of People With Intellectual Disabilities About What Contributes Towards Optimal End-of-Life Care: A Qualitative Evidence Synthesis.Journal of applied research in intellectual disabilities : JARID · 2025Review
- Don't assume, ask! A focus group study on end-of-life care planning with people with intellectual disabilities from minoritised ethnic groups.BMC palliative care · 2025Article
- Co-Designing a Toolkit of Approaches and Resources for End-of-Life Care Planning With People With Intellectual Disabilities Within Adult Social Care Settings: A Multi-Phase Study.Journal of applied research in intellectual disabilities : JARID · 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
- What are we planning, exactly? The perspectives of people with intellectual disabilities, their carers and professionals on end-of-life care planning: A focus group study.Palliative medicine · 2024Article
- Good quality end-of life care for people with an intellectual disability: A critical interpretive synthesis protocol.PloS one · 2024Article
- Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase.Journal of applied research in intellectual disabilities : JARID · 2021Article
- Commentary: In search of care strategies for distressed people with communication difficulties and a learning disability in palliative care settings: the lived experiences of registered learning disability nurses and palliative care professionals.Journal of research in nursing : JRN · 2019Article
- Nursing care at end of life: a UK-based survey of the deaths of people living in care settings for people with intellectual disability.Journal of research in nursing : JRN · 2019Article
- Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012-2016).BMC medical ethics · 2018Article
- Healthy Ageing in People with Intellectual Disabilities from Managers' Perspective: A Qualitative Study.Healthcare (Basel, Switzerland) · 2017Article
- Developing research priorities for palliative care of people with intellectual disabilities in Europe: a consultation process using nominal group technique.BMC palliative care · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors at 9 institutions in 5 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPeople with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs.
aimTo define consensus norms for palliative care of people with intellectual disabilities in Europe.
designDelphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. SETTING AND
participantsTaskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members' networks.
resultsA total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents' comments, several items were modified and one item was deleted.
conclusionThis White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.
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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.