UNDERSTANDING GROWTH, GRIEF AND BEREAVEMENT FOR PARENTS OF CHILDREN WITH LIFE-LIMITING ILLNESS
Bibliographic record
Abstract
Objectives The purpose of this presentation is to bring together disparate research findings in order to make recommendations for family-centred practice with the goal of improving clinical care by better supporting families as they experience caring throughout the life-limiting illness and possible/actual death of a child. Methods This presentation draws on data from three sources: preliminary results from a prospective survey of north American parents caring for a child with a life-limiting illness; literature review of bereavement from popular media and academic journals and retrospective interviews with bereaved parents. Results The possibility of a child dying is widely acknowledged to be an extraordinarily stressful experience for a parent. Furthermore, after a death, parents are often expected to “get on with their lives” within a short timeline despite their tremendous loss. Notwithstanding this well-documented adversity, parents may experience positive aspects of childhood illness and death, which are little researched or understood. Conclusion The understanding of grief work as detachment has shifted to a conceptualisation of grief work as supporting the continuation of bonds between the living and the deceased. Our research supports this shift. This presentation addresses how to work with parents, both before and after the death of a child, to facilitate the incorporation of the deceased child into their lives. We also examine positive processes and outcomes of caring for a child with life-limiting illness as well in parental bereavement. Funding SSHRC grant #410-2007-0709 CIHR FRN: MOP 79526.
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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 | 0.016 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.003 | 0.004 |
| Scholarly communication | 0.003 | 0.005 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.003 |
| Insufficient payload (model declined to judge) | 0.001 | 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".