Delivering optimal patient experiences to the diverse Deaf and hard of hearing community requires understanding the various elements that impact patient-provider relationships, shape patient experiences, and affect the continuum of care for this community.
The human experience is at the very core of understanding what the patient experience is. In this section, we provide an overview of the Deaf and hard of hearing community. This will help drive an understanding of the unique experiences Deaf and hard of hearing individuals have in healthcare settings.
Identity
Some Deaf and hard of hearing individuals feel that their deafness is a vital part of their identity.
Those who identify as culturally Deaf do not necessarily perceive themselves as having a disability; instead, they perceive themselves as being a member of a cultural and linguistic minority that is complete with American Sign Language, shared values, and norms.
Alternatively, there are individuals who are Deaf or hard of hearing that do not consider themselves to be culturally Deaf. These individuals likely do not know sign language. They also may have acquired hearing loss later in life — these are individuals who generally identify as being late-deafened.
When an individual is both Deaf/hard of hearing and blind, they are considered DeafBlind. There are also individuals who are Deaf/hard of hearing and have low vision (e.g., due to Usher’s Syndrome); these individuals may or may not identify as DeafBlind. DeafBlind individuals and Deaf/hard of hearing individuals with low vision vary in terms of hearing/vision levels, age of onset, communication modalities, and identity.
Unless specified otherwise, we will be using “Deaf and hard of hearing” in this white paper as the all-encompassing terminology to represent Deaf, DeafBlind, hard of hearing and late-deafened individuals.
Hearing levels
Hearing levels vary for Deaf and hard of hearing individuals. Some have no hearing at all while others may have residual hearing in one or both ears. Individuals with residual hearing in both ears may have different levels and thresholds of hearing in each ear.
Furthermore, individuals may use hearing aids and/or cochlear implants. The age when deafness first appears also varies – some may be born Deaf or hard of hearing, while others may lose hearing later in life due to age or other contributing factors.
Environmental and contextual factors may also impact communication accessibility needs and preferences. We will discuss these in further detail in the following subsections.
Audiologists and healthcare professionals often utilize the term “hearing loss” when describing one’s level of hearing. This term erroneously suggests that all individuals who are Deaf or hard of hearing are “missing” something vital and that all Deaf and hard of hearing individuals have lost their hearing (technically, this isn’t the case as there are many born this way). In addition to being reductive, the term is also reflective of a deficit mindset, one that suggests hearing loss needs to be addressed by a clinician (e.g., via hearing aids and/or cochlear implants).
To move away from the medical definition of “hearing loss,” we will be using the phrase “hearing levels” in this white paper. This phrase removes any negative connotations associated with “loss” and naturally conveys the diversity within the Deaf and hard of hearing community.
Communication Preferences
Regardless of a Deaf or hard of hearing individual’s identity, one communication method does not fit all.
Each Deaf or hard of hearing individual may have their own communication preferences and needs. These may change from one situation to the next. These preferences and needs are contingent on a variety of factors, including one’s primary language, level of hearing, the use of hearing aids and/or cochlear implants, environmental acoustics, and the type of encounter.
Preferred communication methods for individuals within this diverse community may include having an in-person or video remote interpreter, relying on real-time captioning (also known as Communication Access Realtime Translation – CART), using hearing aids or cochlear implants to hear, lipreading, and writing/typing back and forth. Additionally, Deaf and hard of hearing individuals may benefit from having access to video relay service, captioned telephones, notification systems, and closed captions on televisions.
Within the Deaf and hard of hearing community, there are an estimated one to two million ASL users. In healthcare settings, these individuals may likely prefer to use a hearing ASL-English interpreter to facilitate communication between both parties. It is important to note that certain ASL users may also speak for themselves and may or may not prefer to have a sign language interpreter present to facilitate patient-provider communication. These preferences may vary based on the encounter.
In some situations, a team of a Certified Deaf Interpreter (CDI) and a hearing ASL-English interpreter may be needed to support an ASL user’s communication needs. CDIs are specialized interpreters who are Deaf, possess native or near-native fluency in ASL, and have a deep-rooted understanding of the cultural and linguistic nuances that are necessary to facilitate effective communication between patients and healthcare professionals in partnership with hearing ASL-English interpreters. In Part III, we will discuss situations where a CDI is necessary to support communication.
There are also Deaf and hard of hearing individuals that do not know ASL and use spoken/written English as their primary mode of communication. These individuals may rely on CART, using hearing aids or cochlear implants to hear, lipreading, and writing/typing back and forth in healthcare settings.
There is also a small subset of Deaf and hard of hearing individuals who use cued speech, a visual mode of communication in which mouth movements of spoken language are combined with a system of hand movements that reflect different sounds (phonemes).[1]
While cued speech uses hand signals, it is completely distinct from ASL. To this end, if an individual requests a cued speech transliterator, you cannot assume that an ASL interpreter will be an effective substitution and vice versa.
Furthermore, there are also DeafBlind individuals and Deaf/hard of hearing individuals with low vision to take into consideration. In addition to communication challenges, these individuals also face unique challenges as it pertains to orientation and mobility, access to environmental information, and transportation. These individuals may also require tactile and/or protactile interpreting services.
Tactile interpreting is where DeafBlind individuals and Deaf/hard of hearing individuals with low vision receive linguistic information by placing their hands on the interpreter’s hands while the interpreter signs. Protactile interpreting expands on tactile interpretation by using manual cues to provide the concept of backchanneling/reciprocity. This includes providing cues for agreeing, disagreeing, laughter, and other responses.
Last, but not least, DeafBlind individuals and Deaf/hard of hearing individuals with low vision may also benefit from Support Service Providers (SSPs), individuals who are specifically trained to assist a DeafBlind person with transportation and access to written material. These SSPs also provide support with informal communication and environmental information.
Health Disparities
Deaf and hard of hearing individuals regularly encounter disparities and inequities in healthcare settings, including communication access barriers and not having access to culturally sensitive and responsive care. The lack of access to critical health information and qualified health care contributes to misunderstandings, misdiagnoses, increased readmissions, decreased throughput, and adverse healthcare outcomes.[2] It is important to note that the medical perspective often frames individually-based risk factors, including one’s hearing level, as the primary contributing factor to health disparities.
In actuality, it is a combination of communication, environmental, and systemic barriers in healthcare settings that create disparities and inequities for the Deaf and hard of hearing community. Consequently, these barriers disable the Deaf and hard of hearing community in healthcare settings.
We discuss each of these barriers in further detail in Part III.
Health Literacy
In addition to encountering disparate experiences in healthcare settings, Deaf and hard of hearing individuals also face a variety of barriers to achieving health literacy.
A 2017 study in Rochester, NY showed that 48% of Deaf participants had inadequate health literacy and Deaf individuals were 6.9 times more likely than hearing participants to have inadequate health literacy.[1]
Lower health literacy is likely driven by a variety of factors.
The vast majority (95%) of Deaf and hard of hearing individuals are born into a non-signing hearing family.[1] These children may face significant language barriers. Young children with limited access to language during the critical period for acquisition experience language deprivation.[1] These language barriers may also result in Deaf and hard of hearing individuals also lacking incidental learning opportunities and having minimal awareness of their family’s medical history.
On a related, but separate note, inaccessible healthcare materials, information, and interactions with healthcare professionals also contribute to low health literacy.
Ultimately, lower levels of health literacy within the Deaf and hard of hearing community contribute to difficulty understanding treatments, instructions, and healthcare conditions.
Deaf individuals’ health literacy levels have been compared to those who have lower educational levels, are immigrants, have lower levels of social support, do not speak English at home, and people who have different racial/ethnicity and cultural backgrounds.[1]
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[1] See National Cued Speech Association. Available at https://cuedspeech.org/.
[2] Panzer, K., Park, J., Pertz, L., & McKee, M. M. (2020). Teaming Together to Care for Our Deaf Patients: Insights from the Deaf Health Clinic. JADARA, 53(2), 60-77. Retrieved from https://repository.wcsu.edu/ jadara/vol53/iss2/3.
[3] McKee, M. M., Paasche-Orlow, M. K., Winters, P. C., Fiscella, K., Zazove, P., Sen, A., & Pearson, T. (2015). Assessing Health Literacy in Deaf American Sign Language Users. Journal of health communication, 20 Suppl 2(0 2), 92–100. https://doi.org/10.1080/10810730.2015.1066468
[4] Hauser P, O’Hearn A, McKee M, Steider A, Thew D. Deaf epistemiology: Deafhood and deafness. American Annals of the Deaf. 2010;154(5):486–492.
[5] Hall, M. L., Hall, W. C., & Caselli, N. K. (2019). Deaf children need language, not (just) speech. First Language, 39(4), 367–395. https://doi.org/10.1177/0142723719834102.
[6] Smith, S. R., Kushalnagar, P., & Hauser, P. C. (2015). Deaf Adolescents’ Learning of Cardiovascular Health Information: Sources and Access Challenges. Journal of deaf studies and deaf education, 20(4), 408–418. https://doi.org/10.1093/deafed/env021.