Transition from pediatric to adult health care for young adults with neurological disorders: parental perspectives.
Bibliographic record
Abstract
PURPOSE: With advances in pediatric health care, many adolescents with complex chronic neurological conditions live well into adulthood. As such, the movement toward adult health care services is an expected and desired outcome of pediatric care. When the young adult has an intellectual impairment in addition to a complex chronic neurological condition, parental involvement is critical in the transition process, as these young adults are unable to make informed decisions independently and require significant guidance from caregivers. Thus, the transition process should address not only the direct health care needs of the young adult, but also the needs and concerns of the parents who are instrumental in guiding that process. The objective of this study was to identify salient issues confronting these parents. METHODS: A qualitative interpretive design was used to gain an in-depth understanding of parents'perceptions of their young adults' transition process from a pediatric to an adult health care setting. Data were analyzed using the constant comparative method, in which interview data were simultaneously collected and analyzed throughout the data collection process. Purposive sampling was used to interview 17 parents of 11 young adults who had transitioned to an adult health care setting. RESULTS: Findings suggest that parents perceived a tremendous sense of abandonment from the heath care team during the transition process. They experienced a sense of loss, fear and uncertainty, as they navigated the transition of their young adult. Parents believed that what hindered the transition process was a lack of sufficient coordination within the health care system, the vulnerability of the young adult at the time of transition, the lack of appropriate resources in the adult health care system given the unique and multifaceted needs of the young adult, and their own tenuous health status. The transition process was felt to be facilitated by the parent's resourcefulness, family support and ability to establish new relationships within the adult health care setting. CONCLUSIONS: This study has provided a greater understanding of parental perceptions of transition care for young adults with a complex chronic neurological disorder who have an intellectual impairment. The emotional toll on the parents is tremendous and requires thoughtful consideration when planning the transition process for these young adults. Although all parents acknowledged the hardships and adversity they faced during the process were immense, they all felt that with better guidance and improved resources, the experience for future families could be a positive and satisfying experience.
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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 | 0.008 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.003 | 0.002 |
| Scholarly communication | 0.002 | 0.002 |
| Open science | 0.000 | 0.002 |
| Research integrity | 0.001 | 0.002 |
| 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".