Living with an ostomy: A needs assessment in pediatric inflammatory bowel disease
Bibliographic record
Abstract
Background: Inflammatory bowel disease (IBD) is a chronic, immune-mediated inflammatory condition of the digestive tract associated with substantial psychosocial difficulties. Treatment often focuses on medications but may also include surgical approaches (e.g., intestinal ostomy). Unfortunately, literature regarding the psychosocial implications of ostomy surgeries is scarce, and even less is known about adolescent experiences, which may differ markedly from adults. Objective: This study aimed to explore the perspectives of adolescents with IBD and their caregivers to understand their perceived needs when they have undergone, are anticipating, or have anticipated the possibility of experiencing a stoma surgery. Study findings hoped to inform clinical practice in IBD care and beyond. Method: A purposive sample of patients and caregivers were recruited from a large pediatric hospital. Twelve patients and thirteen caregivers participated in the study. Participants completed a demographic background questionnaire and virtual semi-structured interview. Inductive content analysis was used to examine participant feedback. Results: Qualitative results identified four overarching themes and thirteen subthemes: fear of the unknown, perceived barriers, being supported, and recommendations for creating a more positive experience. Specifically, participants described the transition process from pediatric to adult care as particularly intimidating and having a supportive and inclusive handover was a helpful piece that supported the shift to adult care. Conclusion: This study reflects the importance of a holistic approach to care that attends to adolescent patients' physical well-being and emotional and social needs. Patient-driven recommendations for enhancing age-specific care of adolescents with ostomies are provided.
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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 | 0.010 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.001 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.002 | 0.001 |
| Scholarly communication | 0.001 | 0.002 |
| Open science | 0.001 | 0.002 |
| Research integrity | 0.001 | 0.002 |
| 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".