Communicating With the Deaf Sign Language User

The culturally deaf are a group that defines itself by a unique culture, primary language (American Sign Language, or ASL), and shared life experiences. They are a group who view their deafness through a cultural lens, not legally or as a medical problem to be fixed. Although often lumped together with others classified as having a disability, deaf people generally have no sense of loss or perceived inability.^1,2 

Like many other minority groups, they experience increased health problems (obesity, suicide, intimate partner violence), have limited English proficiency (an average fourth-grade reading level compared to eighth grade for the general population), reduced health literacy, and limited access to healthcare.^3–7 

Barriers to effective communication in the healthcare setting are frustrating for both practitioners and patients and may serve as an underlying cause of healthcare disparities in this population. While interpreter services are becoming more abundant in hospitals, there is often no interpretation in the prehospital setting unless an EMS practitioner is fluent in the patient’s primary language.

Estimates of the total number of deaf ASL users vary greatly, ranging from 150,000 to 15 million, or from 0.06% to 6.2% of the general population,⁸ but it is likely EMS practitioners will care for a deaf patient. Without being able to express or understand concerns, EMS practitioners cannot accurately assess the patient, which could lead to delays in recognition and diagnosis. Worse, it could delay critical interventions or even result in an inappropriate treatment that may do harm. 

Compassionate and informed care also demands practitioners explain what they are doing and why and is often absent in these encounters due to communication barriers. The events that transpire during a chaotic EMS call leave can any patient frightened, and lack of communication only magnifies this feeling for the deaf person.

Creating a Communication Solution

To help break down such barriers, we sought to create a communication tool that could be used in the prehospital setting to aid in bidirectional communication for hearing EMS practitioners without ASL fluency. Ideally it allows practitioners to effectively and efficiently obtain critical information from the patient and inform them about upcoming steps in their care. 

To understand the needs of both the deaf community and EMS practitioners, we utilized the expertise of several key stakeholders, consisting of emergency physicians, EMS practitioners of varying levels, and Partners in Deaf Health, a local deaf community health advocacy group. After identifying critical areas of communication during EMS encounters, we piloted the tool with local deaf community members to allow for revision. This process of engaged refinement was critical in creating a tool that is culturally sensitive, addresses the communication needs of both EMS and the deaf person when ASL cannot be utilized, and follows the traditional order of EMS assessment and treatment in the field. 

The Tool

The tool is a 5” x 7” laminated spiral-bound communication booklet with an erasable marker attached on the back cover. It can be stored in the rig or easily fits inside most first-in bags. The lamination makes the booklet reusable, and the attached marker allows for easy written communication—the patient can write their medications or circle the appropriate symptom icon. 

The booklet was organized to follow the workflow EMS practitioners use when encountering a new patient, with each section of the book designated to a portion of the encounter (history, physical, interventions, etc.). Through the use of limited, simple written English, pictures, graphics, and some pictorial representations of ASL signs, the booklet allows the patient to provide critical information such as demographic information, communication preference, and current symptoms. Other pages are designed to explain frequent EMS actions with pictures of common interventions such as obtaining a blood pressure, inserting an IV, or applying a cervical collar. The combination of patient-friendly language, graphics, and pictures allows for enhanced comprehension and understanding by both patient and practitioner.

The Training

In addition to developing a tool to help with communication in the field, we found the need to fill a practitioner knowledge gap on caring for deaf patients. This is particularly important in our community, Rochester, N.Y., which is home to more than 40,000 deaf and hard-of-hearing people (many of whom are ASL users),⁹ one of the highest concentrations in the United States.

The booklet distribution was paired with an online training course that provided information about deaf culture, communication barriers, strategies to improve communication, and a recorded demonstration of real-time use of the booklet with a deaf patient. With a tool designed to facilitate communication and a brief deaf cultural awareness training, we hope to reduce the fear and anxiety that is inevitable in any emergency situation but especially for those with a language barrier, such as the deaf ASL user.

A survey completed by EMS practitioners prior to the training reaffirmed the challenges faced when interacting with deaf patients. The majority indicated care is limited by difficulty communicating (93%), felt frustration with communication (95%), and had little to no previous training in ASL or deaf culture (89%). Providers most often used spoken English (80%) or lip reading (79%) to communicate.

After completing the educational training module, more than 90% reported increased knowledge of deaf culture and improved communication strategies when caring for deaf patients. More than 95% of participants felt the training and tool were relevant to clinical practice and identified pitfalls to avoid while communicating with deaf ASL users. 

Next Steps

There is a clear need for additional resources to aid in breaking down communication barriers for the deaf community in the prehospital setting, where the ease of and access to interpreter services is severely limited. An online training module improved self-reported knowledge of deaf culture and strategies to improve communication and identified pitfalls to avoid while caring for and communicating with deaf ASL users. A novel communication tool was felt useful in communicating with deaf ASL users and may have applicability in the care of other non-English-speaking patients.

Given that the deaf community is nationwide, we hope to share our experience and encourage other systems to partner with their deaf communities to develop culturally sensitive communication tools and training to enhance care for this marginalized patient population. As we explore the development of a digital version that embodies the same cultural sensitivity and still fosters communication, we hope simple interventions like ours can significantly enhance the clarity and comfort of communication. 

To download the communication tool and receive instructions for printing, go to https://mlrems.org/training/communicating-with-the-deaf/. To view the training described in this article developed by the University of Rochester, click to https://rise.articulate.com/share/jvu_K_sdqCZTDMd 8Bg4uzhanxAxPj1G2#. Learners who wish to obtain (free) CME can log in to Open Access at www.emsplumbline.com and look for the “Communicating With the Deaf Sign Language User” course. For further information on this training and/or tool, please contact jasonrotoli@gmail.com. 

References

1. Leigh IW, Andrews JF, Harris R. Deaf Culture: Exploring Deaf Communities in the United States. Plural Publishing, 2016.

2. Richardson KJ. Deaf culture: Competencies and best practices. Nurse Pract, 2014; 39(5): 20–8.

3. Barnett S, Klein JD, Pollard RQ Jr., et al. Community participatory research with deaf sign language users to identify health inequities. Am J Public Health, 2011; 101(12): 2,235–8.

4. Davis TC, Wolf MS. Health literacy: implications for family medicine. Family Medicine, 2004; 36(8): 595–8.

5. Traxler CB. The Stanford Achievement Test: National norming and performance standards for deaf and hard-of-hearing students. J Deaf Studies Educ, 2000; 5(4): 337–48.

6. Rotoli JM, Grenga P, Halle T, Nelson R, Wink G. Cultural Competence and the Deaf Patient. Diversity and Inclusion in Quality Patient Care, 2019; 45–59.

7. Barnett S, McKee M, Smith SR, Pearson TA. Peer reviewed: Deaf sign language users, health inequities, and public health: Opportunity for social justice. Prev Chronic Dis, 2011; 8(2).

8. Mitchell RE, Young TA, Bachelda B, Karchmer MA. How many people use ASL in the United States? Why estimates need updating. Sign Language Studies, 2006; 6(3): 306–35.

9. Livadas G. Rochester Area’s Deaf Population Better Defined. National Technical Institute for the Deaf, Rochester Institute of Technology, 2012 Sep 25; www.rit.edu/ntid/news/rochester-areas-deaf-population-better-defined.

Sarah Hancock is a third-year medical student at the University of Rochester. She will complete her MD program with a distinction in deaf health. 

Jeremy T. Cushman, MD, MS, EMT-P, FACEP, FAEMS, is associate professor of emergency medicine and chief of the Division of Prehospital Medicine at the University of Rochester. The medical director for the Monroe-Livingston County EMS system, he is also a member of the EMS World editorial advisory board.

Jason M. Rotoli, MD, MS, is an assistant professor of emergency medicine at the University of Rochester and serves as director of deaf health pathways at the University of Rochester School of Medicine and Dentistry. He is the founder/chair of the Accommodations Committee, a subcommittee of the Academy of Diversity and Inclusion in Emergency Medicine.