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Record W3132766604 · doi:10.1016/j.arrct.2021.100115

Informed Consent or Assent Strategies for Research With Individuals With Deafblindness or Dual Sensory Impairment: A Scoping Review

2021· review· en· W3132766604 on OpenAlex
Abinethaa Paramasivam, Atul Jaiswal, Renu Minhas, Walter Wittich, Roxanna Spruyt-Rocks

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.

affAt least one author lists a Canadian institution in the pinned OpenAlex snapshot.
fundA Canadian funder is recorded on the work.

Bibliographic record

VenueArchives of Rehabilitation Research and Clinical Translation · 2021
Typereview
Languageen
FieldSocial Sciences
TopicDisability Rights and Representation
Canadian institutionsUniversité de Montréal
FundersFonds de Recherche du Québec - SantéCanadian Institutes of Health Research
KeywordsInformed consentPsychologyDual (grammatical number)Developmental psychologyMedicineAlternative medicine

Abstract

fetched live from OpenAlex

OBJECTIVE: To synthesize evidence on existing informed consent/assent strategies and processes that enable the participation of individuazls with deafblindness or dual sensory impairment in research. DATA SOURCES: were hand-searched from January 2015 until July 2020. STUDY SELECTION: inclusion criteria of sensory and cognitive disabilities and focused on consent/assent strategies and processes in research within this population. Articles related to the medical or sexual consent processes were excluded. DATA EXTRACTION: An Excel spreadsheet was used to extract data from the eligible sources. Discrepancies were resolved in discussion with team members. DATA SYNTHESIS: A total of 2163 sources were screened, and 16 articles were included in the review. Seven sources only examined consent strategies, whereas the remaining 8 included a combination of consent/assent and dissent strategies. Using thematic analysis, 3 key themes emerged: consent/assent strategies, researcher capacity, and capacity to consent tools. Key identified strategies included the accessibility of the consent/assent process, building relationships with participants and caregivers, identifying behavioral cues, and communication training for researchers. CONCLUSIONS: Despite the absence of literature on consent/assent strategies within the population with deafblindness, the review found promising strategies applied to individuals with other cognitive or sensory disabilities that researchers can adopt. Researchers are encouraged to use best practices in creating an inclusive research environment to include individuals with deafblindness.

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)0.012
metaresearch head score (Gemma)0.010
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMetaresearch, Science and technology studies
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Systematic review · Consensus signal: none
GenreCandidate signal: Review · Consensus signal: Review
Teacher disagreement score0.754
Threshold uncertainty score0.998

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0120.010
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0020.000
Bibliometrics0.0000.001
Science and technology studies0.0010.007
Scholarly communication0.0000.001
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 head0.597
GPT teacher head0.636
Teacher spread0.038 · 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