Informed Consent or Assent Strategies for Research With Individuals With Deafblindness or Dual Sensory Impairment: A Scoping Review.
Abinethaa Paramasivam, Atul Jaiswal, Renu Minhas and 2 others
PMID 34179751WHAT IT FOUND
Researchers adapted consent strategies from intellectual disability and dementia work for people with deafblindness.
Key approaches included plain language with pictures, building rapport through multiple visits, and watching for nonverbal cues of dissent like looking at the door.
Key findings
01Consent strategies were drawn from studies on intellectual disabilities and dementia because research specifically on deafblindness consent is scarce.
02Four main themes emerged for accessible consent: making the process accessible, building relationships, interpreting behavioral cues, and training researchers in communication tools.
03Nonverbal signs of dissent include looking at the door, lack of eye contact, yawning, or saying 'I'm tired', which researchers must interpret alongside family or staff.
STILL TO COME
How it was doneWhat they foundWhat it means for SLPs
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What it does not show
The review had to broaden its scope beyond deafblindness to include intellectual disabilities and dementia because there were almost no studies on consent strategies specifically for deafblindness. Only articles published from 2015 onward were included, which may have missed earlier relevant work. Only full-text articles available in English were reviewed. As a scoping review, the methodological quality of the included studies was not assessed. Stakeholder consultation, a planned part of the review process, could not be completed due to the pandemic.
Declared interests
No specific funding sources or conflicts of interest were declared in the provided text.
The easy way to misread this
Do not assume these consent strategies have been tested specifically on people with deafblindness. The review adapted methods from studies on intellectual disabilities and dementia because research directly involving deafblindness was virtually non-existent.