Experiences of Adolescents Who Are Living with Inflammatory Bowel Disease
Bibliographic record
Abstract
BACKGROUND: Inflammatory bowel disease (IBD) is an incurable, chronic, gastrointestinal condition characterised by recurrent bouts of debilitating abdominal pain and diarrhoea. There is little information on how adolescents with paediatric IBD (PIBD) face the challenges of living with the disease and their perceptions of their journeys towards adulthood. This paper reports the findings of a qualitative study on these issues in adolescents living with PIBD in South Australia. METHODS: Potential study participants, aged between 12 and 17 years were selected by a treating clinician from the PIBD clinic of a major referral hospital, to achieve gender balance and some diversity in the PIBD stage and severity. In-depth face-to-face interviews focused on participants’ perceptions about living with IBD during adolescence and for the future. Interviews were recorded, transcribed and analyzed thematically. RESULTS: Nine adolescents aged 15-17 years consented to participate in the study. Using an overarching theme of ‘the journey’, three major temporal themes were apparent, namely, ‘Reactions at time of diagnosis’, ‘Learning to cope with IBD’ and ‘Acceptance and the future with IBD’. This study demonstrates that, even with optimum support, the pathways towards adulthood were often turbulent and challenging for these young people due to the unpredictability of painful and/or embarrassing physical symptoms. They nevertheless developed strategies which enabled them to accept and cope with a new ‘normality’ with positivity and determination. More research is warranted to investigate the skills required to navigate this path successfully.
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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 | 0.003 | 0.006 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.004 | 0.004 |
| Scholarly communication | 0.003 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.003 |
| 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".