Adolescents’ Perspectives on Living and Growing up with Treacher Collins Syndrome: A Qualitative Study
Why this work is in the frame
A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.
Bibliographic record
Abstract
OBJECTIVE: This study explored the experiences and essences of growing up and living with Treacher Collins syndrome (TCS) from an adolescent perspective. DESIGN: A qualitative approach using the long interview method was used to explore the adolescents' experiences. Semistructured interviews and peer debriefing techniques were used to gather and verify data with each participant. PARTICIPANTS: A purposive sampling technique was used to recruit a sample of six adolescents with TCS, ranging in age from 12 to 18 years, who received care from a craniofacial center in a large pediatric hospital. RESULTS: The themes central to the adolescents' experiences were balancing sameness and difference and the journey toward social and self-acceptance. Five subthemes further described this experience: reconstructing perceptions of others; making meaning of the difference; forming friendships and fitting in; handling staring and teasing; and excelling. CONCLUSIONS: The study group described good psychosocial adjustment, experienced an increasing acceptance of self, TCS, and social acceptance over time and demonstrated resilient adaptive strategies (optimism, motivation, and positive meaning making). They were, however, also challenged by the social stigma associated with difference and by the challenges of finding a good fit in their school environments in meeting unique needs, particularly in their early grades. This study highlights the value of using a qualitative research approach in furthering our understanding of the experiences of children and youth with facial differences.
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Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.001 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 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 it