111 Care trajectories of children with static or progressive encephalopathy based on location of death: A qualitative study exploring parental experiences
Bibliographic record
Abstract
Abstract Background Static encephalopathy (SE) and progressive encephalopathy (PE) are among the most common causes of mortality in children with complex chronic conditions (CCC). Though location of death (LOD) can vary – hospital, home, free-standing hospice – children with SE die more often in the intensive care unit (PICU) and less at home than those with other CCC, notably those with PE. Little is known regarding care trajectories of children with SE and PE from the perspective of bereaved parents. Objectives To explore the experiences of bereaved parents of children with SE or PE to better understand factors influencing and leading to various LOD. Design/Methods This was a qualitative study using individual semi-structured interviews with bereaved parents of children with SE/PE who had been followed at a tertiary care paediatric hospital and had died 1 to 6 years prior. Purposive sampling sought representation of different diagnoses (SE/PE) and LOD (home, PICU, inpatient ward, free-standing hospice). Care trajectories, parental experiences and decision-making were explored through a qualitative naturalistic inquiry, with a focus on end-of-life care and LOD. Visual narrative inquiry using schematic illustrations drawn by participants explored the children’s life and end-of-life trajectories. Interviews were transcribed verbatim and analyzed using thematic analysis. Results From October 2023 to June 2024, 21 parents participated (16 mothers). Fourteen children had SE, 7 had PE; 6 died at home, 6 in a free-standing hospice, 5 in PICU, and 4 on a ward. Qualitative analysis revealed three main themes: (1) high levels of sustained unpredictability characterize the illness trajectories of children with SE/PE (unpredictable clinical deteriorations, unpredictable survival following clinical deteriorations, unexpected moment of death); (2) challenging advanced care planning – levels of medical intervention, planning LOD – in the face of sustained unpredictability; (3) importance of a longitudinal palliative care approach beyond advanced care planning (support, palliating uncertainty, recognizing the child’s humanity, supporting parents’ expertise). Conclusion Bereaved parents of children with SE/PE report sustained, generalised unpredictability and uncertainty in their care trajectories, rendering the planning of LOD inherently challenging. Despite this, offering a supportive, holistic palliative care approach that navigates these challenges is essential.
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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 | 0.006 | 0.012 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.006 | 0.005 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.002 |
| 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".