Examining the differences of perceptions and experience with online health information accessibility between deaf and hearing individuals: A qualitative study.

OBJECTIVE: Describe and compare the experiences and preferences of Deaf and hearing individuals with different levels of health literacy in accessing, interpreting, and acting upon online health information. METHODS: We conducted semi-structured interviews with 17 Deaf and 10 hearing participants with high and low health literacy from three healthcare sites. We conducted thematic analysis of the transcripts to explore information navigation experiences, information sources and dissemination preferences. RESULTS: We found thematic differences between Deaf and hearing participants with high and low health literacy in terms of information needs, information search experiences, information search perceptions, and preferred information dissemination approaches. Relative to hearing counterparts, Deaf participants were more likely to encounter challenges in accessing and understanding online information. Deaf participants with low health literacy were more likely to rely on visual graphics to support their understanding of the information than those with high health literacy. Deaf participants advocated for tailored approaches to disseminate health information to Deaf communities. CONCLUSION: Our findings suggest that differences in online health information navigation experiences and accessibility may inform disparities in health literacy outcomes between Deaf and hearing individuals. PRACTICE IMPLICATIONS: Online health information should be presented in a manner accessible to Deaf community members.

Video Relay Interpretation and Overcoming Barriers in Health Care for Deaf Users: Scoping Review.

BACKGROUND: Persons who are deaf are more likely to avoid health care providers than those who can hear, partially because of the lack of means of communication with these providers and the dearth of available interpreters. The use of video remote interpretation, namely the video camera on an electronic device, to connect deaf patients and health providers has rapidly expanded owing to its flexibility and advantageous cost compared with in-person sign language interpretation. Thus, we need to learn more about how this technology could effectively engage with and respond to the priorities of its users. OBJECTIVE: We aimed to identify existing evidence regarding the use of video remote interpretation (VRI) in health care settings and to assess whether VRI technology can enable deaf users to overcome barriers to interpretation and improve communication outcomes between them and health care personnel. METHODS: We conducted a search in 7 medical research databases (including MEDLINE, Web of Science, Embase, and Google Scholar) from 2006 including bibliographies and citations of relevant papers. The searches included articles in English, Spanish, and French. The eligibility criteria for study selection included original articles on the use of VRI for deaf or hard of hearing (DHH) sign language users for, or within, health care. RESULTS: From the original 176 articles identified, 120 were eliminated after reading the article title and abstract, and 41 articles were excluded after they were fully read. In total, 15 articles were included in this study: 4 studies were literature reviews, 4 were surveys, 3 were qualitative studies, and 1 was a mixed methods study that combined qualitative and quantitative data, 1 brief communication, 1 quality improvement report, and 1 secondary analysis. In this scoping review, we identified a knowledge gap regarding the quality of interpretation and training in sign language interpretation for health care. It also shows that this area is underresearched, and evidence is scant. All evidence came from high-income countries, which is particularly problematic given that most DHH persons live in low- and middle-income countries. CONCLUSIONS: Furthering our understanding of the use of VRI technology is pertinent and relevant. The available literature shows that VRI may enable deaf users to overcome interpretation barriers and can potentially improve communication outcomes between them and health personnel within health care services. For VRI to be acceptable, sign language users require a VRI system supported by devices with large screens and a reliable internet connection, as well as qualified interpreters trained on medical interpretation.

Using Gaze Tracking as a Research Tool in the Deaf Health Literacy and Access to Health Information Project: Protocol for a Multisite Mixed Methods Study and Preliminary Results.

BACKGROUND: Previous studies have identified the internet as a major source of health information. Reliable and accessible sources of web-based health information are critical for cultivating patient-centered care. However, the accessibility and use of web-based health information remains largely unknown for deaf individuals. We used gaze-tracking technology to understand the navigation and use of web-based health information by deaf adults who communicate with sign language and by hearing adults. OBJECTIVE: This paper discusses our protocol for implementing gaze-tracking technology in a study that included both deaf and hearing participants. We report the preliminary results and lessons learned from the implementation of the protocol. METHODS: We conducted gaze-tracking sessions with 450 deaf signers and 450 hearing participants as a part of a larger, multisite mixed methods research study. Then, we conducted qualitative elicitation interviews with a subsample of 21 deaf and 13 hearing participants, who engaged in a search task and reviewed their gaze recordings. To our knowledge, no study has implemented a similar research protocol to better understand the experiences of deaf adults. As such, we also examined research staff notes and observations from team meetings regarding the conduct of gaze-tracking data to delineate lessons learned and best practices for research protocols in this area. RESULTS: Findings from the implementation of this study protocol highlight the use of gaze technology with deaf participants. We developed additional protocol steps to minimize gaze disruption from either lipreading or communicating in sign language. For example, research assistants were often unable to maintain eye contact with participants while signing because of the need to simultaneously point at the computer monitor to provide instructions related to gaze study components, such as the calibration process. In addition to developing ways to effectively provide instructions in American Sign Language, a practice exercise was included in the gaze tracker session to familiarize participants with the computer and technology. The use of the playback feature permitted a deeper dialogue between researchers and participants, which we found vital for understanding the experiences of deaf participants. CONCLUSIONS: On the basis of our experience using the study protocol through a large research project, incorporating gaze-tracking technology offers beneficial avenues for better understanding how individuals interact with health information. Gaze tracking can determine the type and placement of visual content that attracts attention from the viewers of diverse backgrounds, including deaf individuals. The lessons learned through this study will help future researchers in determining ideal study designs, such as suitable protocols and participant characteristics (eg, deaf signers), while including gaze trackers in their projects. This approach explored how different ways of presenting health information can affect or enable visual learners to engage and use health information effectively. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/26708.

A review of mentoring deaf and hard-of-hearing scholars.

Diversification of the scientific workforce usually focuses on recruitment and retention of women and underrepresented racial and ethnic minorities but often overlooks deaf and hard-of hearing (D/HH) persons. Usually classified as a disability group, such persons are often members of their own sociocultural linguistic minority and deserve unique support. For them, access to technical and social information is often hindered by communication- and/or language-centered barriers, but securing and using communication access services is just a start. Critical aspects of training D/HH scientists as part of a diversified workforce necessitates: (a) educating hearing persons in cross-cultural dynamics pertaining to deafness, sign language, and Deaf culture; (b) ensuring access to formal and incidental information to support development of professional soft skills; and (c) understanding that institutional infrastructure change may be necessary to ensure success. Mentorship and training programs that implement these criteria are now creating a new generation of D/HH scientists.

Deaf Adults' Health Literacy and Access to Health Information: Protocol for a Multicenter Mixed Methods Study.

BACKGROUND: Deaf American Sign Language (ASL) users often struggle with limited health literacy compared with their hearing peers. However, the mechanisms driving limited health literacy and how this may impact access to and understanding of health information for Deaf individuals have not been determined. Deaf individuals are more likely than hearing individuals to use the internet, yet they continue to report significant barriers to health information. This study presents an opportunity to identify key targets that impact information access for a largely marginalized population. OBJECTIVE: This study aims to elucidate the role of information marginalization on health literacy in Deaf ASL users and to better understand the mechanisms of health literacy in this population for the purpose of identifying viable targets for future health literacy interventions. METHODS: This is an exploratory mixed methods study to identify predictors and moderators of health literacy in the Deaf population. These predictors of health literacy will be used to inform the second step that qualitatively explains the findings, including how Deaf individuals access and understand Web-based health information. Multiple interviewer- and computer-based instruments underwent translation and adaptation, from English to ASL, to make them accessible for the Deaf participants in our study. A planned sample of 450 Deaf ASL users and 450 hearing native English speakers, aged 18 to 70 years, will be recruited from 3 partnering sites: Rochester, NY; Flint, MI; and Chicago, IL. These individuals will participate in a single data collection visit. A subset of participants (approximately 30) with key characteristics of interest will be invited for a second data collection visit to observe and inquire more about their ability to directly access, navigate, and comprehend Web-based health information. The study will help assess how the ways health literacy and information are visualized may differ between Deaf individuals and hearing individuals. The study will also survey participants' ownership and use of computer and mobile devices and their level of Web-based information use, including health information. RESULTS: Adaptation and translation of protocols and instruments have been completed and are now in use for the study. Recruitment is underway and will continue until late 2020. Results from this study will be used to provide a guide on how to structure Web-based health information in a way that maximizes accessibility and improves health literacy for Deaf individuals. CONCLUSIONS: The results from this mixed methods proposal will advance what is known about health literacy and health information accessibility for Deaf individuals. This innovative study will generate rich data on how to formulate health information and health literacy interventions more accurately to take advantage of visual learning skills. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/14889.

Deaf mothers and breastfeeding: do unique features of deaf culture and language support breastfeeding success?

BACKGROUND: Deaf mothers who use American Sign Language (ASL) consider themselves a linguistic minority group, with specific cultural practices. Rarely has this group been engaged in infant-feeding research. OBJECTIVES: To understand how Deaf mothers who use ASL learn about infant feeding and to identify their breastfeeding challenges. METHODS: Using a community-based participatory research approach, we conducted 4 focus groups with Deaf mothers who had at least 1 child 0-5 years old. A script was developed using a social ecological model (SEM) to capture multiple levels of influence. All groups were conducted in ASL, filmed, and transcribed into English. Deaf and hearing researchers analyzed data by coding themes within each SEM level. RESULTS: Fifteen mothers participated. All had initiated breastfeeding with their most recent child. Breastfeeding duration for 8 of the mothers was 3 weeks to 12 months. Seven of the mothers were still breastfeeding, the longest for 19 months. Those mothers who breastfed longer described a supportive social environment and the ability to surmount challenges. Participants described characteristics of Deaf culture such as direct communication, sharing information, use of technology, language access through interpreters and ASL-using providers, and strong self-advocacy skills. Finally, mothers used the sign for "struggle" to describe their breastfeeding experience. The sign implies a sustained effort over time that leads to success. CONCLUSION: In a setting with a large population of Deaf women and ASL-using providers, we identified several aspects of Deaf culture and language that support breastfeeding mothers across institutional, community, and interpersonal levels of the SEM.

Perceptions of cardiovascular health in an underserved community of deaf adults using American Sign Language.

BACKGROUND: Cardiovascular disease leads in overall mortality and morbidity in the United States. Cardiovascular disparities remain high among minority and underserved groups. Deaf American Sign Language (ASL) users are an underserved and understudied group that receives little attention from researchers due to language and communication barriers. A recent ASL survey in Rochester, NY, indicated greater cardiovascular risk among Deaf participants. The study objective was to investigate risk perceptions of cardiovascular disease among Deaf ASL users, linking perceptions to features of Deaf culture and communication. This information will be used to inform future strategies to promote cardiovascular health among Deaf adults. METHODS AND PARTICIPANTS: Four focus groups were conducted in Rochester, New York, with 22 Deaf participants in ASL. Videotaped sessions were translated and transcribed by a bilingual researcher. A team of investigators coded, analyzed, and identified key themes from the data. MAIN RESULTS: Themes centered on five major domains: knowledge, barriers, facilitators, practices, and dissemination. The majority of themes focused on barriers and knowledge. Barriers included lack of health care information access due to language and communication challenges, financial constraints, and stress. Inconsistent knowledge emerged from many key areas of cardiovascular health. CONCLUSIONS: The study outlines key themes for improving cardiovascular health knowledge and perceptions among Deaf ASL users. Findings suggest the importance of providing health educational programs and information in ASL to maximize understanding and minimize misconceptions. When caring for Deaf ASL users, providers should take extra effort to ask about cardiovascular risk factors and confirm patients' understanding of these factors.

Relating deaf students' reading and language scores at college entry to their degree completion rates.

Graduation patterns were examined for 905 deaf students (1990-1998) at the National Technical Institute for the Deaf. Students with higher reading and language skills had the best overall graduation percentage. Comparison of recipients of different degrees--bachelor of science (BS) versus fine arts (BFA); associate of applied science (AAS) versus occupational studies (AOS)--showed 92% of BS and 82% of AAS graduates reading at the 9th-grade level or above, versus 65% of BFA and 47% of AOS graduates. Interestingly, 80% of non-degree-earning students read at the 9th-12th grade levels; in absolute terms, they outnumbered graduates with similar reading skills in the AAS and BFA programs combined, and in the BS program. This indicates a need for improved counseling, placement, and retention strategies. Students performed similarly across degree categories, regardless of curriculum requirements and difficulty. Only non-degree-earning students had significantly lower grade averages.