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

BACKGROUND/AIMS: This 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. METHODS: Between 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. RESULTS: Focus 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. CONCLUSION: The 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.

Engaging the disability community in informatics research: rationales and practical steps.

As the informatics community grows in its ability to address health disparities, there is an opportunity to expand our impact by focusing on the disability community as a health disparity population. Although informaticians have primarily catered design efforts to one disability at a time, digital health technologies can be enhanced by approaching disability from a more holistic framework, simultaneously accounting for multiple forms of disability and the ways disability intersects with other forms of identity. The urgency of moving toward this more holistic approach is grounded in ethical, legal, and design-related rationales. Shaped by our research and advocacy with the disability community, we offer a set of guidelines for effective engagement. We argue that such engagement is critical to creating digital health technologies which more fully meet the needs of all disabled individuals.

Video Remote Interpreting Technology in Health Care: Cross-Sectional Study of Deaf Patients' Experiences.

BACKGROUND: The advent of new rehabilitation and assistive technologies has led to the creation of video remote interpreting (VRI) as an accessible communication technology for deaf patients. Although there has been a rapid growth in the use of VRI technology by health care providers, there is scant published information on VRI users and their satisfaction. Current, timely data are needed to understand deaf patients' use and satisfaction with the quality of VRI technology in health care settings. OBJECTIVE: This study aimed to investigate the national trends of deaf patients' satisfaction with the quality of video remote interpreting (VRI) in health settings and recommend actions to improve VRI quality and deaf patients' satisfaction with VRI in health care settings. METHODS: Secondary data related to deaf adults' experiences of using VRI service in a medical setting were obtained from the Health Information National Trends Survey in American Sign Language, which was administered to a US sample of deaf adults between 2016 and 2018. RESULTS: Among our VRI users (N=555, all in the United States) who answered questions about VRI usage in health between 2016 and 2018, only 41% were satisfied with the quality of the VRI technology service. Respondents with fewer years of education or those who were male were more likely to rate the VRI quality as acceptable. After adjusting for covariates in a binary regression analysis, deaf patients' self-reported interference (ie, VRI interpreter's interference with disclosure of health information) increased patient dissatisfaction with the quality of VRI technology service by three-fold. CONCLUSIONS: To increase satisfaction with VRI technology service in health care and rehabilitation settings among deaf patients, special attention needs to be given to video technology, as the use of sign language requires high-fidelity video for optimal communication between the interpreter and patient. To promote the willingness to disclose medical information through VRI among deaf patients, the interpreter must be highly skilled in both expressive and receptive communication and have the requisite background in medicine and rehabilitation.

Welcoming Deaf Students into STEM: Recommendations for University Science Education.

Scientists are shaped by their unique life experiences and bring these perspectives to their research. Diversity in life and cultural experiences among scientists, therefore, broadens research directions and, ultimately, scientific discoveries. Deaf individuals, for example, have successfully contributed their unique perspectives to scientific inquiry. However, deaf individuals still face challenges in university science education. Most deaf students in science, technology, engineering, and mathematics (STEM) disciplines interact with faculty who have little to no experience working with deaf individuals and who often have preconceptions or simply a lack of knowledge about deaf individuals. In addition to a lack of communication access, deaf students may also feel unwelcome in STEM, as do other underrepresented groups. In this essay, we review evidence from the literature and, where data are lacking, contribute the expert opinions of the authors, most of whom are deaf scientists themselves, to identify strategies to best support deaf students in university STEM education. We describe the journey of a hypothetical deaf student and methods for faculty to create a welcoming environment. We describe and provide recommendations for classroom seating and layout, accommodations, teaching strategies, and research mentoring. We also discuss the importance of including deaf scientists in research about deaf individuals.

Making Cancer Health Text on the Internet Easier to Read for Deaf People Who Use American Sign Language.

People with relatively limited English language proficiency find the Internet's cancer and health information difficult to access and understand. The presence of unfamiliar words and complex grammar make this particularly difficult for Deaf people. Unfortunately, current technology does not support low-cost, accurate translations of online materials into American Sign Language. However, current technology is relatively more advanced in allowing text simplification, while retaining content. This research team developed a two-step approach for simplifying cancer and other health text. They then tested the approach, using a crossover design with a sample of 36 deaf and 38 hearing college students. Results indicated that hearing college students did well on both the original and simplified text versions. Deaf college students' comprehension, in contrast, significantly benefitted from the simplified text. This two-step translation process offers a strategy that may improve the accessibility of Internet information for Deaf, as well as other low-literacy individuals.

Critical health literacy in American deaf college students.

This study investigates the relationship between critical health literacy (CHL) and discussion of health information among college deaf students who use American Sign Language. CHL is crucial in making appropriate health-related decisions for oneself and aiding others in making good health-choices. Research on general youth population shows that frequent health-related discussions with both friends and family is associated with higher health literacy. However, for our sample of deaf college-aged students who might have had less access to communication at home, we hypothesize that health-related discussions with same-age peers may be more important for critical health literacy. We asked two questions to assess the frequency of health-related discussions with friends and families: "How often do you discuss health-related information with your friends" and "How often do you discuss your family medical history with your family?". Participants rated their experience on a scale from 1-5 (1=never, 5=always). To assess CHL, 38 deaf and 38 hearing participants were shown a short scenario that showed a woman confiding in her friend after finding a lump in her breast. Participants were then asked what the friend should say. Responses were scored by a team of 3 raters using a CHL rubric. As predicted, results showed a strong relationship between discussion of health-related information with friends and CHL in both deaf and hearing samples. Discussion with family was linked to CHL only for hearing participants, but not deaf participants in our study. These findings underscore the importance of socializing with health-literate, accessible peers to improve the health literacy and health outcomes of all deaf people.

The right to language.

We argue for the existence of a state constitutional legal right to language. Our purpose here is to develop a legal framework for protecting the civil rights of the deaf child, with the ultimate goal of calling for legislation that requires all levels of government to fund programs for deaf children and their families to learn a fully accessible language: a sign language.