Caregiver perspectives on barriers and facilitators to pediatric intestinal failure quality of life
Bibliographic record
Abstract
Background: Caregivers of children with intestinal failure provide unique perspectives on their child's quality of life. This study explores the caregiver perception of barriers and facilitators affecting quality of life in children with intestinal failure and examines how caregiver quality of life may be affected. Material and methods: Semi-structured interviews were conducted with caregivers of children with intestinal failure and transcribed verbatim. An initial codebook was inductively developed by one coder and subsequently reviewed by two additional coders, who applied the codes to all transcripts. Thematic analysis was performed, and a conceptual framework was generated. Results: Interviews were conducted with 10 caregivers (9 biological mothers, 1 biological father). Quality of life domains may be grouped into 3 main categories: mental and psychological well-being, daily routine, and activities. Barriers to quality of life within these categories included differences from peers and siblings, mental health struggles, medical complications, procedures and hospitalizations, traditional school settings, swimming, and travel. Facilitators focused on adapting to these differences through support systems at home and school along with the medical care expertise gained over time. Caregivers faced significant impacts on their own quality of life in the areas of mental health, finances, and social activities. Conclusion: Caregivers offer valuable insight into the barriers and facilitators of their child's QOL within the context of intestinal failure. Multidisciplinary interventions aimed at supporting families as they adapt to their own unique lifestyle may significantly enhance quality of life for both children and caregivers.
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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 | 0.010 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.001 | 0.001 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.000 | 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".