Psychological Experiences of Children with Brain Tumors at End of Life: Parental Perspectives
Bibliographic record
Abstract
OBJECTIVE: To explore the psychological experiences of children with brain tumors at the end of life. DESIGN: This is a qualitative, retrospective study from a Canadian tertiary level pediatric institution. A subset of parent-report data obtained from three semistructured focus group interviews was used to explore children's experiences during their last month of life. PARTICIPANTS: Twenty-four parents of children diagnosed at less than 18 years of age with a brain tumor, and who died between 2 and 12 years prior, were approached for this study. RESULTS: Three main domains were identified that describe parents' perceptions of their child's psychological experiences: (1) intrapsychic changes--those processes within oneself, and encompassing internal aspects of a person such as cognitive and emotional variables; (2) interpersonal interactions--those interactions between oneself and others, including being treated like their same aged healthy peers and maintaining relationships with others; and (3) posttraumatic growth--those positive personal changes that can occur as the result of a significant struggle or hardship. DISCUSSION: Children who die from brain tumors experience a distinct set of progressive neurologic deteriorations that invariably impact psychological status both positively and negatively. Informed treatments that build on positive growth and minimize negative symptoms are required in order to reduce the suffering incurred to the child and family and to optimize quality of life.
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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 | 0.002 | 0.007 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.002 | 0.002 |
| Scholarly communication | 0.002 | 0.001 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.002 | 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".