SynthesisPalliative medicine2020
The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review.
Synthesis in Palliative medicine, 2020. 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, 75 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
- A comparison of conceptual frameworks to examine health inequities in End-of-Life care.Journal of advanced nursing · 2023Pooled it
- Identifying individuals who could benefit from a palliative approach to their care using a multi-phase, consultative, iterative approach.BMC palliative care · 2026Article
- 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
- A cognitive accessibility review of national palliative care resources with people with cognitive disabilities.BMC palliative care · 2026Article
- 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
- Barriers and facilitators to advance care planning for people with intellectual disabilities: a cross-sectional survey study of professional caregiver perspectives.International journal for equity in health · 2025Article
- Challenges to timely access to out-of-hours end-of-life medications: a qualitative study in UK primary care.The British journal of general practice : the journal of the Royal College of General Practitioners · 2025Article
- "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
- 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
- Cognitive Authority Theory: Reframing health inequity, disadvantage and privilege in palliative and end-of-life care.Palliative medicine · 2025Article
- 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
- Article
- 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
- Reflections on an Evidence Review Process to Inform the Co-Design of a Toolkit for Supporting End-of-Life Care Planning With People With Intellectual Disabilities.Health expectations : an international journal of public participation in health care and health policy · 2024Review
- 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
- Autonomy & advocacy in planning for a medical emergency: Adults with a learning disability and family carers' experiences and perceptions of the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process.NIHR open research · 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
5 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundThere is evidence that people with intellectual disabilities experience healthcare inequalities, including access to specialist palliative care, but to date, there has not been a systematic review of empirical evidence.
aimTo identify the palliative care needs of adults with intellectual disabilities and the barriers and facilitators they face in accessing palliative care.
designSystematic review using a narrative synthesis approach (International prospective register of systematic reviews (PROSPERO) registration number: CRD42019138974). DATA SOURCES: Five databases were searched in June 2019 (MEDLINE, Embase, PsycINFO, the Cochrane library and CINAHL) along with hand searches and a search of the grey literature. All study designs were included.
resultsA total of 52 studies were identified, all of which were conducted in high-income countries, the majority in the United Kingdom (
conclusionThis review highlights the specific problems in providing equitable palliative care for adults with intellectual disabilities, but there is a lack of research into strategies to improve practice. This should be prioritised using methods that include people with intellectual disabilities and families.
Indexed as
Identifiers
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.