HEAlth caRe needs of the Deaf (HEARD) project
Abstract
Deaf people avoid seeking healthcare services due to issues of access. With low health literacy, Deaf people are often at high risk for health problems. Many countries stipulate healthcare organizations provide a sign language interpreter (SLI) for Deaf patients. However, there are a severe lack of trained SLIs in Malaysia, and no such legislation exists for the 55,000 or more Deaf Malaysians. Through extensive research, our team have developed the mHealth app, DITE, to connect the Deaf with a pool of off-site SLIs using secure video conferencing. DITE will also house a medical sign language (SL) dictionary, a repository of current health promotion videos in SL, and GIFs for healthcare personnel communicating with the Deaf. Furthermore, several cultural competency training workshops for healthcare students and practitioners have been developed to address the issue of healthcare practitioners lack of training to provide linguistically and culturally competent care for these patients.
Introduction
We developed a nationwide study to understand the health-seeking behaviour of the Deaf community and pharmacists' comfort level interacting with Deaf people. The outcome of this study led us to design and develop the mHealth app, allowing a Deaf person to book a virtual sign language interpreter (SLI) for healthcare consultation.
mHealth was designed and developed after feedback, consultation, and tests with the Deaf, SLI, and healthcare practitioners (HCP). The app includes COVID-19 screening, management tools in Malaysian Sign language (BIM), health promotion videos in BIM and GIFs of medical signs, among other features. We worked with our partners to develop workshops and best practices for HCP on Deaf culture and their healthcare needs. MFD was our link with the Deaf community, interpreting our research tools and providing feedback on the app. myBIM contextualized the research questionnaires, carried out interviews with the Deaf, provided feedback on the app, ensured the correct BIM terms were used, and helped with the Deaf cultural competency workshops. JUPEBIM provided feedback in the development of the DITE app and SLIs gave feedback during the testing stages of the app.
Who should benefit?
Our research involves the Malaysian Deaf community who use Malaysian Sign Language (BIM) to communicate. There are approximately 55,000 or more people in Malaysia who are registered as Deaf. The Malaysian Deaf community avoid seeking healthcare due to severe shortages of sign language interpreters (SLI) and communication barriers with healthcare professionals, who lack linguistic and cultural competence. Malaysian healthcare professionals and services are not legally bound to provide an SLI or adjust their practice or premises to accommodate the Deaf.
Due to their perceived disability, the Deaf also face discrimination from the public. This is compounded by the fact available health information is not in a format accessible to the Deaf, placing them at a severe disadvantage. The healthcare needs of this community have been largely neglected, and research in this area - particularly in Malaysia - is scarce. Healthcare administrators are only now beginning to realize the depth of the issues faced by this community. Crucial financial deployment, inclusive education, and appropriate training for healthcare practitioners can help improve this situation. Addressing this unmet need is crucial to ensure the basic healthcare accessibility rights for this community.
The Deaf community in many regions in LMICs are equally marginalized by their healthcare access. We believe our research, particularly on the development of the DITE app, can be used by many other countries. Cultural competency training and best practice workshops can also be contextualized for use by any other LMIC.
This unmet need of the Deaf community was initially identified through a student-led Health Promotion project. Results from this pilot study were the impetus for us to request funding to study the issues in depth. This was the start of our health equity research. In 2018, our initial focus was to understand the health-seeking behaviour of the Deaf community and learn how health care professionals can better serve them. We have since designed and developed the DITE app, created health promotion videos in BIM, developed GIFs in BIM for the COVID-19 screening and management tools, and carried out workshops on Deaf cultural competency and best practice to empower healthcare professionals to better serve this population. We have since recruited a number of healthcare practitioners, IT staff, and experts in Deaf studies and health promotion into our team.
Engagement
We adopted a community-based participatory method with members of the Deaf community (MFD, myBIM) involved at different stages of the research. This included research design and development, recruitment of participants, and dissemination of results. We protected the rights of the Deaf community and ensured the research undertaken would meet the actual, rather than perceived, needs of the Deaf. We also hired a Deaf postdoctoral researcher and research assistant to work on our projects.
As sign language interpreters (JUPEBIM) are a crucial link to the Deaf community, it was important to involve them at various stages in our projects. They provided crucial feedback on app development and interpretation requirement during meetings and workshops, leading to the development of an app that is relevant and caters to the needs of both the Deaf community and SLI.
To ensure we addressed all aspects of healthcare accessibility for the Deaf, healthcare practitioners (clinicians and pharmacists) and medical students were also consulted for their feedback and input. We also engaged in research with a medical student-led organization, MMI, where we observed a lack of Deaf cultural competency and confidence in consulting Deaf patients among HCP and medical students. As a result, we carried out workshops on Deaf cultural competency and learning signs relevant for medical consultation.
To develop relevant, equitable health inclusion projects and innovative ways to train healthcare students to serve the Deaf community, we consulted Prof. Jemina Napier from Herrior Watt University and Associate Prof. Danielle Verstegen from Maastrict University as respective experts in Deaf studies and medical education. To promote awareness of Deaf cultural competency and Malaysian sign language (BIM) at our campus, we organized several annual events during the International Deaf week, such as food carts run by people who are Deaf, posters and basic signs to communicate with food vendors, talks, and awareness campaigns. Such events have created a greater awareness of Deaf culture and communication among staff and students in Monash. The HEARD team has also been featured by local radio station BFM to highlight the healthcare needs of the Deaf community and our health inclusion research. MFD, myBIM, and JUPEBIM are collaborators in our research projects and have ownership of the research data, app, and workshops.
The Research
In 2016, a pilot study to identify challenges faced by the Deaf when seeking pharmaceutical care was initiated. This was followed by a 2018 nationwide study to identify the communication barriers and needs of the Deaf and how to prepare pharmacies to better serve this population. Our findings indicated the Malaysian Deaf community avoid seeking healthcare due to the lack of access to SLI services, further exacerbated by the severe shortage of SLI. The idea of the DITE app was conceptualized.
In 2018, qualitative studies were conducted to gather perspectives of the Deaf community and design suggestions to facilitate their healthcare communication. In 2020, development for the app DITE was initiated. To explore the existing communication modalities and factors influencing its usage in medical consultations with Deaf patients, a scoping review was initiated in 2021, finding professional SLI is the preferred modality but writing and lip-reading are more commonly used in healthcare settings. The review highlighted several implications for practice which we initiated as translational research.
Healthcare providers (HCP) are ill-prepared to serve this population and should be more culturally competent. Our 2021 review highlighted the need for cultural competency programs within health care education: HCPs who received training in cultural competency showed increased knowledge and confidence interacting with Deaf signers. To understand Malaysian HCPs’ and medical students’ exposure to Deaf culture and knowledge of available communication modalities with the Deaf, we conducted surveys in 2021 and 2022. We observed medical students and doctors alike lack exposure to Deaf culture, experience with the community, and best communication practices. They agreed their medical training did not prepare them to interact with the Deaf. The majority of doctors felt uncomfortable and challenged when communicating with Deaf patients and feared misdiagnosis and mismanagement. Doctors relied on writing, hand gestures, and family members to communicate with their patients. Doctors indicated there is no available resource at their HC facility to facilitate their communication with Deaf patients.
We concluded doctors faced communication challenges and were ill-prepared to serve Deaf patients. Medical schools should attempt to incorporate Deaf cultural competency training in their curriculum to ensure we produce culturally competent physicians who will make the healthcare system more “Deaf-friendly”.
