Evidence map›Paper›PMID 37243366›Full record

ArticleClinical trials (London, England)2023

Barriers and facilitators to the inclusion of deaf people in clinical trials.

Poorna Kushalnagar, Onudeah Nicolarakis, Gene Mirus, Melissa Anderson, Teresa Burke, Raja Kushalnagar

Open access · greenAbstract read
In one paragraph

Article in Clinical trials (London, England), 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.

0numbers the graph read from it
0cells of the map it votes in
8citing papers in PubMed
4.8field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

8 citing papers in PubMed, 11 citations in OpenAlex.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors at 2 institutions in 1 country.

Poorna KushalnagarGallaudet University, Washington, DC, USA.ORCID 0000-0002-8658-6932
Onudeah NicolarakisSchool of Language, Education, and Culture, Gallaudet University, Washington, DC, USA.ORCID 0000-0003-4146-6467
Gene MirusSchool of Arts and Humanities, Gallaudet University, Washington, DC, USA.
Melissa AndersonDepartment of Psychiatry, Chan Medical School, University of Massachusetts, Worcester, MA, USA.
Teresa BurkeSchool of Arts and Humanities, Gallaudet University, Washington, DC, USA.
Raja KushalnagarArtificial Intelligence, Accessibility and Sign Language Center, Gallaudet University, Washington, DC, USA.ORCID 0000-0002-0493-413X
Gallaudet University · USUniversity of Massachusetts Chan Medical School · US

Funding

CONSENT-ASL Toolkit for Deaf and Hard of Hearing PeopleG08LM013797 · NLM · GALLAUDET UNIVERSITY · PI KUSHALNAGAR, RAJA S. · 2021 to 2023
$420k
NLM NIH HHS G08 LM013797
6 · The paper itself

Abstract

BACKGROUND/

aimsThis article discusses the barriers that prevent deaf people from participating in clinical trials and offers recommendations to overcome these barriers and ensure equal access to study participation.

methodsBetween April and May 2022, we conducted six focus groups with 20 deaf adults who use American Sign Language, all of whom had previous experience as research study participants. Focus group prompts queried community awareness of clinical trial opportunities, barriers and facilitators to deaf people's participation in clinical trials, and recommended resources to improve clinical trial access. This qualitative focus group data is supplemented by survey data gathered from 40 principal investigators and clinical research coordinators between November 2021 and December 2021. The survey queried researchers' prior experiences with enrolling deaf participants in clinical trials and strategies they endorse for enrollment of deaf participants in future clinical trials.

resultsFocus group participants unanimously agreed that, compared to the general hearing population, deaf sign language users lack equivalent access to clinical trial participation. Reported barriers included lack of awareness of clinical trial opportunities, mistrust of hearing researchers, and refusal by clinical trial staff to provide accessible communication (e.g. denial of requests for sign language interpreters). Survey data from 40 principal investigators and clinical research coordinators corroborated these barriers. For example, only 2 out of 40 survey respondents had ever enrolled a deaf person in a clinical trial. Respondents indicated that the most helpful strategies for including deaf sign language users in future clinical trials would be assistance with making recruitment information accessible to deaf sign language users and assistance in identifying qualified interpreters to hire to help facilitate the informed consent process.

conclusionThe lack of communication accessibility is the most common factor preventing deaf sign language users from participating in clinical trials. This article provides recommendations for hearing researchers to improve deaf people's access to clinical trials moving forward, drawing from mixed-methods data.

Indexed as

Persons with Hearing DisabilitiesAdultClinical Trials as TopicCommunicationCommunication BarriersFocus GroupsHumansSign Languageclinical trialDeafdisabilityhard of hearingsign language

Identifiers

PMID37243366
PMCPMC10524313
OpenAlexW4378516546

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.