Knowledge, attitudes, and representations of caregivers of individuals with major neurocognitive disorders regarding palliative and end-of-life care: a narrative literature review
Bibliographic record
Abstract
BACKGROUND: Caregivers 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). OBJECTIVES: Provide 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. METHODS: A 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. RESULTS: Of 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. CONCLUSION: With 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.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.003 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.005 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.000 | 0.001 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.001 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".