Evidence map›Paper›PMID 40847299›Full record

ReviewBMC palliative care2025

Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review.

Roxane Pellerin, Diane Tapp, Catherine Filion, Sophie Castonguay-Paradis, Gina Bravo, Guillaume Robert

Abstract readReview
In one paragraph

Review in BMC palliative care, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Roxane PellerinFaculté des sciences infirmières, Université Laval, 1050, avenue de la Médecine, Université Laval, Québec, Québec, G1V 0A6, Canada.
Diane TappFaculté des sciences infirmières, Université Laval, 1050, avenue de la Médecine, Université Laval, Québec, Québec, G1V 0A6, Canada. diane.tapp@fsi.ulaval.ca.
Catherine FilionFaculté des sciences infirmières, Université Laval, 1050, avenue de la Médecine, Université Laval, Québec, Québec, G1V 0A6, Canada.
Sophie Castonguay-ParadisFaculté des sciences infirmières, Université Laval, 1050, avenue de la Médecine, Université Laval, Québec, Québec, G1V 0A6, Canada.
Gina BravoRéseau québécois de recherche en soins palliatifs et de fin de vie (RQSPAL), 1401, 18e Rue, Québec, Québec, G1J 1Z4, Canada.
Guillaume RobertCentre hospitalier universitaire (CHU) de Rennes - Unité de soins palliatifs Rue de la Tauvrais, Rennes Cedex, 35033, France.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundCaregivers of individuals with major neurocognitive disorders often bear the responsibility of participating in decisions related to the provision of palliative care for their loved ones due to the loss of capacity to consent as the disease progresses. This role is highly significant, as caregivers can influence both the quality of life and life expectancy of those they care for. Since they make decisions based on their knowledge, skills, preferences, and values, It is essential to develop a more comprehensive understanding of theses concepts regarding palliative and end-of-life care (PEoLC).

objectivesProvide an overview of the existing scientific data on caregiver's knowledge, attitudes and representations of palliative and end-of-life care and to analyze it in order to gain a deeper comprehension of the positioning of caregivers on the subject.

methodsA narrative literature review was conducted to address the research question: "What are the knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care?" Searches in PubMed, CINAHL, and PsycINFO targeted articles published between 2000 and 2023 addressing the knowledge, attitudes, or representations of caregivers of individuals with major neurocognitive disorders on any of the PEoLC topics.

resultsOf the 900 articles found, 25 were included in the analysis. In addition to the palliative care approach, end-of-life practices founded included advance care planning, hospital transfer, artificial nutrition and hydration, treatment withdrawal, palliative sedation, and medically assisted dying. The analysis revealed a disparity in the number of studies on various PEoLC practices, with more data available on advance care planning than other practices. Caregivers had a general understanding of the palliative care approach but limited knowledge of specific PEoLC practices. While there was some consensus on representations of the palliative care approach, ambivalent attitudes and representations were observed regarding PEoLC practices.

conclusionWith the evolution of palliative care services and the increasing role and responsibility of caregivers in decision-making, a deeper understanding of their knowledge, attitudes, and representations of PEoLC is essential to better identify their support and informational needs. Further research is needed to enable healthcare professionals to provide targeted support and education to caregivers as patient conditions evolve, thereby improving overall care quality.

Indexed as

CaregiversHealth Knowledge, Attitudes, PracticeNeurocognitive DisordersPalliative CareTerminal CareHumansAttitudeCaregiverDementiaEnd-of-life careKnowledgePalliative careRepresentation

Identifiers

PMID40847299
PMCPMC12372408

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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.