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Record W2152577417 · doi:10.1353/nib.2011.0001

Perspectives of Adolescents and Young Adults with Cerebral Palsy on the Ethical and Social Challenges Encountered in Healthcare Services

2011· article· en· W2152577417 on OpenAlexfundno aff
Danaë Larivière‐Bastien, Annette Majnemer, Michael Shevell, Éric Racine

Bibliographic record

VenueNarrative Inquiry in Bioethics · 2011
Typearticle
Languageen
FieldHealth Professions
TopicAdolescent and Pediatric Healthcare
Canadian institutionsnot available
FundersCanadian Institutes of Health Research
KeywordsCerebral palsyHealth carePsychologyMedicineDevelopmental psychologyPsychiatryPolitical science

Abstract

fetched live from OpenAlex

Healthcare is a context where individuals with disability confront important ethical and social challenges. Adolescents and young adults with cerebral palsy (CP) seem to face additional challenges but we have little insight into their perspectives. This qualitative study aimed to identify and better understand such challenges. We interviewed 14 participants with CP aged 18 to 25. Participants described a range of challenges experienced when using health services, including: lack of long-term follow-up, shortcomings in physical access to infrastructures, and situations of injustice. Challenges specific to medical consultations were reported (e.g., rude attitudes, belittlement, inadequate communication, lack of consideration). We discuss and explain further that: (1) the ethical principle of respect for persons needs to be concretely specified to improve current practices; (2) respect for autonomy calls for further direct empowerment of individuals with CP and, (3) gaps in dedicated healthcare resources for CP and the long-term needs associated should be addressed.

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.

How this classification was reachedexpand

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)0.002
metaresearch head score (Gemma)0.000
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesResearch integrity
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Qualitative · Consensus signal: Qualitative
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.056
Threshold uncertainty score0.998

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0020.000
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 integrity0.0010.004
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 head0.204
GPT teacher head0.431
Teacher spread0.227 · 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

Classification

machine, unvalidated

Machine predicted; a candidate call from one teacher head, not a consensus.

Study designQualitative
Domainnot available
GenreEmpirical

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".

Quick stats

Citations18
Published2011
Admission routes1
Has abstractyes

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