Changes and Needs Experienced by People Aging With Spina Bifida and Hydrocephalus
Bibliographic record
Abstract
BACKGROUND AND OBJECTIVES: Thanks to medical advances, the life expectancy of people with spina bifida and/or hydrocephalus (SB/H) has increased considerably. However, little is known about their experience of aging, and few resources exist to support their transition into older age and to promote an active and fulfilling aging process. This study thus aimed to describe the changes and needs of people aging with SB/H. RESEARCH DESIGN AND METHODS: This qualitative descriptive study is the initial phase of an action research project designed to develop a toolkit to support transitioning to older age with SB/H. To explore changes and needs associated with aging, semi-structured interviews were conducted with 23 people living with SB/H in Canada. A thematic content analysis based on the Framework Method was conducted using an inductive approach. The COREQ checklist was used to promote explicit and comprehensive reporting of the results. RESULTS: Changes associated with aging covered 3 themes: participation (e.g., mobility, leisure, domestic activities, employment), physical functioning, and psychological functioning. Participants experienced psychological changes differently (e.g., increased resilience or anxiety). Regarding participants' needs, 6 themes were identified: preserving health and well-being; maintaining participation; accessing the built and natural environment; awareness and education about aging with SB/H; information and access to health care services; and social and community services. DISCUSSION AND IMPLICATIONS: The results highlight the diversity of aging experiences among people living with SB/H. A better understanding of their needs will support inclusive practices aimed at promoting lifelong participation and fostering transitions to active and fulfilling aging.
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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 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.005 | 0.003 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.001 | 0.004 |
| Research integrity | 0.001 | 0.001 |
| Insufficient payload (model declined to judge) | 0.001 | 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".