VALUE AND INFORMATION NEEDS FOR DEMENTIA FAMILY CAREGIVERS: CONSIDERATIONS DURING END-OF-LIFE DECISION MAKING
Bibliographic record
Abstract
Abstract Family caregivers often make key end-of-life care decisions for their relatives. For those caring for persons with dementia (PWDs), a third of older decedents, making end-of-life decisions as a surrogate is especially challenging. Notably, few evidence-based interventions exist to support caregivers in this capacity. Guided by the Ottawa Decision Support Framework which recognizes three determinants of informed decisions - information, value clarity, and support, the current study identifies key value considerations and information needs among family caregivers as they weigh decisions regarding hospice enrollment and artificial nutrition and hydration (AHN) for PWDs. One focus group (n=7) and four individual interviews (n=4) were conducted with dementia family caregivers. All face-to-face and telephone interviews were audio-recorded, transcribed verbatim, and verified for accuracy. Thematic analysis (Braun & Clarke, 2006) was conducted to identify and organize themes. Two main themes and subthemes emerged: 1. Caregivers expressed hospice-related values including having enough knowledge about hospice treatments for both Alzheimer’s and new symptoms, having caregiver support services, considering family needs, and weighing the extent the PWD can engage with others meaningfully and remain at home. 2. Caregivers shared AHN-related values including clearly understanding AHN treatments, services and risks for the PWD considering the patient’s functional status. Participants’ information needs reflected their priority of practical needs being met. These findings offer implications for how to design decision support tools and interventions that provide practical and specific information on the benefits and risks of hospice and AHN for PWDs and caregivers.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.021 | 0.046 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.007 | 0.004 |
| Scholarly communication | 0.005 | 0.005 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.002 | 0.002 |
| Insufficient payload (model declined to judge) | 0.002 | 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 source (direct Gemma or distilled Codex), 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".