Living with Cleft Lip and Palate: The Treatment Journey
Bibliographic record
Abstract
OBJECTIVE: To better understand how individuals with cleft lip and palate (CLP) perceive and experience their treatment process and how these perceptions and experiences change over the life course. DESIGN: Qualitative in-depth semistructured interviews with 11 adults with nonsyndromal complete CLP. PARTICIPANTS/SETTING: Individuals from three Canadian cities were recruited by convenience and theoretical sampling through AboutFace International. The number of participants was determined by the principle of theoretical saturation. RESULTS: The experience of individuals with CLP through the treatment process changes over the life course. In childhood and early adolescence, most individuals experience stigma, negative self-perception, and as a result were more prone to perceiving the treatment process not only as unbearably burdensome but also as fueling their feeling of "defectiveness." In adulthood, participants' self-perception improved, partly because of definitive surgical correction, leading them to realize treatment benefits and reappraise the treatment process as satisfactory rather than burdensome. Subsequently, some individuals pursued further surgeries hoping for additional psychological gains, in lieu of psychosocial interventions addressing the underpinnings of residual feelings of "defectiveness." This led to dissatisfaction and frustration when the procedures did not lead to the hoped-for psychological gains. CONCLUSIONS: The results emphasize the importance of self-perception in determining how participants perceive several important aspects of the treatment experience throughout the life course. Further studies should focus on how to incorporate self-perception as an important variable and outcome in the treatment process.
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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 | 0.005 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.001 |
| Science and technology studies | 0.009 | 0.005 |
| Scholarly communication | 0.005 | 0.004 |
| Open science | 0.001 | 0.005 |
| Research integrity | 0.001 | 0.003 |
| Insufficient payload (model declined to judge) | 0.004 | 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".