COVID-19 does not discriminate - nor should the health communication needs of deaf individuals

Dr Maude Phipps

Team members and students from the HEARD project. From left to right: Dr Dinya Johnson, A/P Amreeta Dhanoa, Elizabeth Chong Yie-Chuen, A/P Uma Devi Palanisamy, Andrea Yet Xue Jin, Jennifer Ng Phaik Yeng

Deaf and hard of hearing individuals face special challenges during the pandemic. COVID-19 positive patients are placed in quarantine and treatment centres where their only guests are doctors and nurses who interact with them under layers of protective clothing that obscure their faces.

While these are necessary to protect themselves from the virus, the experience can prove to be highly isolating for deaf patients. Non-verbal communication is vital for this group. A lack of visual facial prompts and access to lip reading cuts off basic communication cues for them, as well as a sense of human connection.

Statistics from Malaysia's Social Welfare Department as of 20 April 2019 notes that there are just under 40,000 people registered as persons with hearing disabilities, said Anthony Alexander Chong Vee Yee, Secretary of the Malaysian Sign Language and Deaf Studies Association (MyBIM).

Despite a sizable number of deaf people, healthcare professionals are mostly unprepared to understand or serve the needs of these patients due to their lack of training in sign language. This inspired a team of researchers from the Jeffrey Cheah School of Medicine and Health Sciences' HEARD (HEAlthcaRE needs of the Deaf) program to collaborate with the Malaysian Federation of the Deaf (MFD) and MyBIM to develop the Malaysian Sign Language (BIM) video translations of the COVID-19 Screening Questions. This mini-project is an extension of their larger research project, which has been in the works since 2016.

The team from Monash Malaysia included Associate Professor Uma Devi Palanisamy, Associate Professor Amreeta Dhanoa, research assistants Jennifer Ng Paik Yeng and Elizabeth Chong Yie-Chuen, who is also a registered pharmacist.

When healthcare communication lacks inclusivity

Jennifer, who is a deaf person herself, stated that the team had been in discussion to develop the BIM translations of the COVID-19 screening questions when the first wave hit the country. But it was not until her illiterate deaf friend tested positive for COVID-19 and endured 14 days of quarantine in a hospital that the team had expedited and driven this BIM initiative.

According to studies, deaf individuals have lower written English language proficiency and health literacy levels compared to their hearing counterparts, putting them at a higher risk for health problems and resulting in lower health status and poorer health outcomes. As such, the COVID-19 screening process can be isolating and intimidating for deaf patients as they lack accessible COVID-19 healthcare information. The free BIM-COVID-19 screening questions aim to ensure these individuals have equitable access to COVID-19 screening measures.

An understanding of basic sign language could blaze new trails for the deaf community to receive better treatment from healthcare professionals who are wearing personal protective equipment (PPE).

"The deaf community faces a lot of challenges in healthcare. This includes issues such as a lack of sign language interpreters during their healthcare consulting which leads to challenges such as miscommunication and misdiagnosis," expressed Dr Uma, who is also the program head of HEARD.

Putting things together

It took the team nearly two months to develop the COVID-19 screening questions.

"We started by determining the screening questions, as outlined by the Ministry of Health, before counter checking it with medical assistants working at the COVID-19 screening tents. Facts and precautions concerning the virus were evolving rapidly, making it essential to take note of what was happening on the ground. We then met with MFD to have the screening questions translated into BIM," explained Elizabeth.

In total, the team filmed 22 short videos with each video containing one question and closed caption. They had a representative from MyBIM to ensure the translations were comprehensible. Elizabeth also added that the videos were edited with help from their students.

The translated screening questions include those on symptoms, travel history and participation in large gatherings, to name a few. Links to the video have been shared on social media with MFD and MyBIM. They in turn, have broadcasted it to their members throughout Malaysia.

Bolstering efforts to bridge inclusivity

As medical educators, the team hopes to develop content on cultural competency for healthcare professionals to manage deaf patients.

"Vulnerable and marginalised populations are often singled out and fall prey to misinformation. Healthcare needs to remain inclusive to ensure no one gets left behind. Language barriers can amplify a crisis. We must bridge that gap," said Elizabeth.

The HEARD team is currently designing and testing an app called Deaf In Touch Everywhere (DITETM) to improve deaf patient-doctor communication. DITETM provides deaf individuals with access to a Sign Language Interpreter by appointment or on-demand and have their health consultation translated via video conferencing - a concept not unlike booking a ride from car-hailing apps such as Uber, Grab or Lyft.

The DITETM app was first featured at the ITEX Awards in 2018 where it won a bronze medal under the telecommunications category. The development of DITETM had taken a community participatory based approach which meant engaging healthcare professionals and deaf individuals in its design and features. This is particularly important considering that deaf BIM users remain largely understudied and underserved.

Other projects in the pipeline include developing a BIM Medical Sign Bank as medical terminologies often lack equivalent vocabulary in sign language, in addition to developing a medical BIM interpreter training.

The HEARD project is an umbrella of various research areas concerning the health disparities of deaf individuals and the preparedness of healthcare professionals to serve this population adequately.

"It was a product of a community engagement project where a few of our pharmacy students worked together with MFD for seven weeks. It was there that Dr Sabrina Anne Jacob from the School of Pharmacy, and I had come to realise the healthcare needs of deaf communities," Dr Uma shared.

In speaking about the initiative, Anthony, who is also deaf person, said it is not easy to find COVID-19-related information in BIM, a problem accentuated by the fact that many in the deaf community lack resources.

"Many deaf people do not have good-paying jobs, and they may struggle to make ends meet," he said. As such, they are unable to be involved in many developments to further their cause.

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