What Matters to Patients and Their Families During and After Critical Illness: A Qualitative Study
Why this work is in the frame
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Bibliographic record
Abstract
BACKGROUND: Despite increased emphasis on providing higher-quality patient- and family-centered care in the intensive care unit (ICU), there are no widely accepted definitions of such care in the ICU. OBJECTIVES: To determine (1) aspects of care that patients and families valued during their ICU encounter, (2) outcomes that patients and families prioritized after hospital discharge, and (3) outcomes perceived as equivalent to or worse than death. METHODS: Semistructured interviews (n = 49) of former patients of an urban, academic medical ICU and their family members. Two investigators reviewed all transcripts line by line to identify key concepts. Codes were created and defined in a codebook with decision rules for their application and were analyzed using qualitative content analysis. RESULTS: Salient themes were identified and grouped into 2 major categories: (1) processes of care within the ICU- communication, patient comfort, and a sense that the medical team was "doing everything" (ie, providing exhaustive medical care) and (2) patient and surrogate outcomes after the ICU-survival, quality of life, physical function, and cognitive function. Several outcomes were deemed worse than death: severe cognitive/physical disability, dependence on medical machinery/equipment, and severe/constant pain. CONCLUSION: Although survival was important, most participants qualified this preference. Simple measures of mortality rates may not represent patient- or family-centered outcomes in evaluations of ICU-based interventions, and new measures that incorporate functional outcomes and patients' and family members' views of life quality are necessary to promote patient-centered, evidence-based care.
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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 | 0.007 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| 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 it