A Qualitative Synthesis of Adolescents’ Experiences of Living With Spina Bifida
Bibliographic record
Abstract
In this article, I explore the experiences and perspectives of youth living with spina bifida, the second most common congenital condition in North America, to inform the development of health programs. I undertook a thematic metasynthesis to integrate qualitative evidence across studies examining the experiences of youth with spina bifida. I used 10 electronic databases to search for and review 4,051 abstracts, and identified 12 articles meeting the inclusion criteria. I examined those articles using a constant comparative approach, drawing on concepts of normalcy and biographical disruption to inform understanding of three emergent themes: (a) the medical management of spina bifida; (b) the importance of peer and family relationships (i.e., social support, belonging, and challenges in peer connections); and (c) identity and self-concept (i.e., normalization). This metasynthesis provides insight for youth, parents, and clinicians on areas of life in which youth could use further support.
Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.
How this classification was reachedexpand
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 | 0.053 | 0.019 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.005 | 0.001 |
| Bibliometrics | 0.002 | 0.003 |
| Science and technology studies | 0.000 | 0.005 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.001 | 0.000 |
| Research integrity | 0.001 | 0.002 |
| 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; both teacher heads agree on what is shown here.
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".