When chronic critical illness is a family affair: A multi-perspective qualitative study of family involvement in long-term care
Bibliographic record
Abstract
OBJECTIVE: Those with chronic critical illness (CCI) remain dependent on life-sustaining treatments and increasingly reside in long-term care facilities equipped to meet their needs. The nature of family involvement in care remains undetermined thwarting approaches to mitigate poor family outcomes. The research objective was to explicate family involvement in the care of an individual with CCI who resides in long-term care. METHODS: In this qualitative research, we used thematic analysis and constant comparative techniques to analyze data from interviews with 38 participants: 11 family members, 6 residents with CCI, and 21 healthcare providers. RESULTS: Involvement in care entailed family: (1) reorienting their life despite the stress and emotional toll; (2) assuming responsibility for meaningful activities and management of practical matters, yet struggling alone; (3) advocating for care by being present, reminding and pushing, and picking their battles; and (4) figuring out how to contribute to nursing care, but with unclear expectations. DISCUSSION: The burden of family caregiving was substantial, contrasting the assumption that family are relieved of their caregiver responsibilities when the patient with CCI is in a care facility. Research to address unmet family needs specific to their roles and responsibilities could potentially improve family outcomes and is warranted.
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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 | 0.013 | 0.018 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.014 | 0.010 |
| Scholarly communication | 0.004 | 0.005 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.002 | 0.003 |
| 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".