Dying With Intellectual and Developmental Disability
A Bibliometric Review of End-of-Life and Palliative Care Literature, 1990–2025
Bibliographic Data
| ID | 20958997 |
|---|---|
| Authors | Josephine Myung (0009-0003-6993-3300, Independent researcher, corresponding author) |
| Year | 2026 |
| Pages | 302228261466648-302228261466648 |
| Publication date | 2026-07-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | OMEGA - Journal of Death and Dying (JOURNAL) |
| Journal identifiers | ISSN: 0030-2228 • E-ISSN: 1541-3764 |
| Publisher | SAGE Publications (PUBLISHER • US) |
| DOI | 10.1177/00302228261466648 |
| PMID | 42387265 |
| OpenAlex | W7167098730 |
| Language | EN |
| References cited | 46 |
How a scholarly community organizes knowledge about the deaths of marginalized populations is itself a question for death studies. This bibliometric review maps the global literature on end-of-life and palliative care for adults with intellectual and developmental disabilities, drawing on 919 English-language articles from 1990 to 2025. Only 5.5% of papers appeared in palliative care journals; the evidence base has accumulated in disability-specialist venues largely invisible to scholars and clinicians of dying. Topic modeling on 423 core documents shows staff training has dominated this scholarship for three decades, while the perspectives of dying people themselves remain peripheral, a pattern that speaks to long-running concerns about awareness contexts and the social organization of dying. Citation analysis reveals a field whose intellectual architecture rests on a single author. The literature mirrors the marginalization of the population it studies; this review offers death scholarship a structural map and an agenda for diversification
Bibliometrics · Citation · Field (mathematics) · Palliative care · Population · Scholarship · Frailty in Older Adults · Palliative Care and End-of-Life Issues · Patient Dignity and Privacy
The Revival of Death
Bursty and Hierarchical Structure in Streams
Exploring Network Structure, Dynamics, and Function using NetworkX
Finding and evaluating community structure in networks
Toward a definition of “bibliometrics”
Exploring the Space of Topic Coherence Measures
An index to quantify an individual's scientific research output
The weirdest people in the world?
Social determinants of health and slippery slopes in assisted dying debates
Disability‐based arguments against assisted dying laws
Reference coverage analysis of OpenAlex compared to Web of Science and Scopus
A Set of Measures of Centrality Based on Betweenness
| Citation velocity | historical |
|---|---|
| Highly cited | No |