“Knowing the person” - The use of families’ knowledge and expertise in delivering care and valued outcomes for people with dementia on acute wards
Bibliographic record
Abstract
Background: \nA quarter of general hospital patients have dementia and they have worse experiences and outcomes of care than people without dementia. At home, many people with dementia are supported by family members who often have an in-depth understanding of the person. However, few previous studies have explored the involvement of families, or their knowledge, in the planning or delivery of hospital care. \n \nAims: \nTo explore how the use of families’ knowledge and expertise affects experiences and outcomes of hospital care for people with dementia. \n \nMethods: \nEthnographic data were collected from two elderly care wards via observations, conversations and interviews with people with dementia, their families and staff. In total, 400 hours of observations and 47 interviews were undertaken across two 7-9 month periods. \n \nResults: \nPeople with dementia often experienced a lack of connection on multiple levels - from pre-hospital life as well as life on the wards - where they could spend long periods of time without interacting with anyone. There was great variation in the degree to which staff used opportunities, or were able, to make connections with people with dementia. The knowledge and expertise of families played a crucial role in facilitating more meaningful interactions and demonstrated how person-centred connections and care are possible in busy hospital settings. Despite such benefits, the involvement of families and their knowledge was not routine. Opportunities to bring together the different perspectives and knowledge of families, staff and people with dementia were often missed, resulting in difficulties in care provision and decision-making, extended lengths of stay, and decisions which did not always meet the needs or wishes of people with dementia. \n \nConclusions: \nThis study demonstrates the many benefits of involving families and their knowledge in care, advocating for family involvement, alongside the involvement of people with dementia, to become a more routine component of hospital care. \n
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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 | 0.004 | 0.013 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.004 | 0.003 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.003 | 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".