48 Transforming Transitions: Developing Cultural Competence in Supporting Caregivers of Children and Youth Growing Up with Autism Spectrum Disorder
Bibliographic record
Abstract
Abstract Background Transition to adulthood is a stressful time for caregivers of children and youth with Autism Spectrum Disorder (ASD). Anecdotally, we know that cultural perspectives can directly influence decisions made around ASD diagnosis, treatment, and transition to adulthood. However, there is a paucity of research into these cultural perspectives and how they may affect illness trajectories. Objectives 1.Through open-ended responses, identify cultural values that play a role in decision making around health care and life course planning during transition to adulthood in ASD. 2.Identify criteria for success in adulthood from parents of children and youth with ASD in a culturally diverse population. 3.Identify systemic barriers that prevent families from accessing culturally sensitive care 4.Educate health care workers on any unique cultural perspective that may impact transition planning. Design/Methods In-depth interviews (IDIs) were conducted with caregivers (i.e., parents/guardians) of children and youth with autism. Interviews were recorded, transcribed, and coded using deductive and inductive coding methods by two independent coders, with inter-rater reliability confirmed by Cohen’s kappa coefficient. Results A total of 12 IDIs were conducted. The main themes that were discussed included caregivers’ understanding of adulthood for their child with ASD, barriers to accessing services, the importance of culture and religion/spirituality to their child’s future, recommendations to improve current services and programming and the impact of the COVID-19 pandemic on decision-making. Caregivers expressed their desire for their child to be independent as they transition to adulthood. They also described how cultural or religious/spiritual practices are integrated into their child’s life and the importance of maintaining their cultural identity. Caregivers emphasized the lack of culturally tailored resources as their child transitions to adulthood to maintain that sense of community. Conclusion Caregivers’ cultural perspectives are an integral part of their identity and an important aspect of their environment that should be taken into consideration as children and youth with ASD transition to adulthood.
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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 | 0.021 | 0.026 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.011 | 0.007 |
| Scholarly communication | 0.006 | 0.005 |
| Open science | 0.003 | 0.017 |
| Research integrity | 0.001 | 0.004 |
| 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; 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".