A qualitative exploration of the experiences of children with spina bifida and their parents around incontinence and social participation
Bibliographic record
Abstract
BACKGROUND: Urinary incontinence is frequently experienced by children with spina bifida, putting them at increased risk for low self-esteem and impacting upon participation in home, school and leisure activities. However, little is known about children's experiences of these continence issues. OBJECTIVE: This study explored the experiences of children and young people with spina bifida around continence issues, social participation and peer relationships, in order to identify potential areas of support healthcare professionals can provide. METHODS: Children and youth aged 6-18 years with diagnoses of spina bifida and neurogenic bladder and their parents were invited to participate in semi-structured interviews. Descriptive thematic analysis was employed. RESULTS: Eleven children (with a range of mobility levels, types of spina bifida and degrees of bladder control) and their parents participated in the study. Three broad themes were identified, which encompassed the following: (1) normal versus different; (2) independence, ownership and the road to continence; and (3) peer relationships and acceptance. DISCUSSION: The experiences discussed by the children and parents in this study ranged from minimal impact of incontinence on their day-to-day living to significant social isolation and rejection. The stigma of incontinence was apparent in all interviews. Children and youth who were able to control their bladder with minimal accidents had greater independence and more opportunities for social participation. Healthcare professionals need to take into account that parents and their children may differ in attitudes and desires about the management of incontinence.
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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 | 0.007 | 0.009 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.002 |
| Science and technology studies | 0.009 | 0.008 |
| Scholarly communication | 0.003 | 0.003 |
| Open science | 0.001 | 0.005 |
| Research integrity | 0.001 | 0.003 |
| Insufficient payload (model declined to judge) | 0.003 | 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".