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Record W4223640064 · doi:10.29173/cjfy29791

Understanding the Role of Formal and Informal Support Resources for Parents of Children with Autism Spectrum Disorder

2022· article· en· W4223640064 on OpenAlex
Kaitlyn Avery, Tricia van Rhijn, Kimberly Maich

Why this work is in the frame

A frame that forgets how it found something cannot be audited. These are the routes that admitted this work.

venuePublished in a venue whose home country is Canada.
aboutThe title or abstract carries a Canadian signal from the geographic lexicon.
no affNo Canadian affiliation: this work is invisible to an affiliation-only frame.
No Canadian affiliation. An affiliation-only frame, the usual design, would never have seen this work. It is one of the works that make the case for inverting the frame.

Bibliographic record

VenueCanadian Journal of Family and Youth / Le Journal Canadien de Famille et de la Jeunesse · 2022
Typearticle
Languageen
FieldPsychology
TopicFamily and Disability Support Research
Canadian institutionsnot available
Fundersnot available
KeywordsAutismPsychologyAutism spectrum disorderService (business)Focus groupPerceptionService delivery frameworkFamily supportAsideNeeds assessmentDevelopmental psychologyMedicineBusinessPolitical science

Abstract

fetched live from OpenAlex

This research examines the extent to which parents of children with autism spectrum disorder (ASD) perceive support resources to be available, accessible, and/or effective in supporting their needs. A focus on the impact of the COVID-19 pandemic in the availability and effectiveness of service delivery is included. A total of 35 parents in Ontario, Canada with a child aged 6–17 with ASD completed an online survey responding to questions about involvement in ASD services, use of formal and informal supports, important support needs, which needs were being met, and perceptions of unmet needs, all which were thematically analysed. The analysis demonstrates that parents experience multiple barriers in accessing supports, particularly from formal sources. Further, the barriers were heightened during the pandemic particularly in relation to the multiple role responsibilities that parents had to take on due to a discontinuity of support provision. Most of these parents put their own support needs aside to focus on their child, with the support their child receives directly relating to the ability to attend to their own needs. Parents identified challenges related to uncertain funding, limits of a one-size-fits-all model of support, and lengthy waitlists. Recommendations for family-centred care and the need for service coordinators to work with families to assist in navigating the complex support system are provided.

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.

Full frame distilled prediction

Teacher imitation

Not 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.

metaresearch head score (Codex)0.003
metaresearch head score (Gemma)0.000
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesnone
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: Observational
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.329
Threshold uncertainty score0.942

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0030.000
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0000.000
Bibliometrics0.0000.000
Science and technology studies0.0010.001
Scholarly communication0.0000.000
Open science0.0000.000
Research integrity0.0000.001
Insufficient payload (model declined to judge)0.0000.000

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.

Opus teacher head0.026
GPT teacher head0.270
Teacher spread0.244 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it