Accommodating Individuals with Dual Sensory Loss of both Vision and Hearing: Deafblindness
Published on Jun 21, 2020. Updated on Sep 15, 2020.
This week is Helen Keller Deafblind Awareness week. In honor of that, we are sharing advice for clinicians on how to best interact with and care for their patients who have dual sensory loss of vision and hearing. The clinical environment during the COVID-19 pandemic is so frenetic that health professionals can easily fall into the trap of making their patients with deafblindness feel isolated. In today’s article, Dr. Sarah Elizabeth Moreman shares three parameters to help medical professionals offer patients with deafblindness the best care possible.
In observance of Helen Keller Deafblind Awareness Week
The theme “Deafblind. And Thriving” to celebrate Helen Keller Deaf-Blind Awareness Week from June 21–27 highlights the need for healthcare professionals to find better ways to treat persons who have dual sensory loss of both vision and hearing. In this article, I plan to share the following three parameters for care in detail:
These parameters are outlined in response to increasingly restrictive healthcare protocols drafted in response to the coronavirus (COVID-19) pandemic. Individuals with deafblindness who rely more on limited visual and tactile communication methods are disproportionately impacted by these restrictions.
This month’s “Deafblind. And Thriving” theme serves as a reminder that, “of all the obstacles people who are deaf-blind overcome, misconceptions don’t have to be one of them.” Such misconceptions can lead to further isolation of individuals who have made the effort to ask for medical attention. To quickly gain insight on how to avoid these harmful misconceptions, let’s first explore how to have understanding.
First parameter: Have understanding
The most common misconception when it comes to an individual with dual sensory loss of both vision and hearing is that this person l is completely blind and deaf. To dispel this misconception, clinicians should be aware that the spectrum of vision and hearing loss is both vast and diverse. Some people might possess residual, yet usable vision—being able to read large print for example—while also experiencing decreased hearing capabilities that prevent them from deciphering spoken words. Others may have been born with a condition like Usher syndrome, which leaves them with little-to-no usable vision or hearing.
According to the Deafblind International organization, an estimated 15 to 155 million people worldwide have some form of deafblindness. Many lead autonomous lives and “come from different social, vocational, and educational backgrounds.” Whatever their capabilities, individuals with deafblindness can travel and perform tasks independently. Whenever there's a need for accommodations, the individual with deafblindness must determine how they wish to receive information. Children are an exception: when it comes to children with deafblindness, this determination can be made by a parent or guardian.
Second parameter: Proactively communicate
The next parameter focuses on ensuring proactive communication during interactions with individuals living with deafblindness.
Allow more time for communicationsKeeping in mind the wide range of capabilities and conditions that come with deafblindness, the first thing any medical professional needs to know is to give more time for the individual with dual sensory loss of both vision and hearing during communications. The duration of such interactions may be two or three times longer with patients who do not live with deafblindness. In these situations, speed is not the goal, and patience is required.
So, what does patience look like? It all starts with proactive communication. Patience builds over time as the clinician develops their communication skills and strategies to better accommodate the needs of their patients who experience deafblindness.
Always address the patient (not the interpreter)The second important thing medical professionals must do is directly address the individual with deafblindness during patient interactions, even if a Support Service Provider (SSP), interpreter, or companion is present to assist the individual’s communication needs. On a side note, family members should not interpret for their deafblind relatives for a variety of reasons. Medical professionals must take the time to communicate with the individual with deafblindness, even walking back and forth behind the curtain or window during the medical procedure.
Another consideration, especially during these COVID-19 times, involves the wearing of masks. Many individuals with deafblindness have usable vision and are able to lipread. During these situations, the SSP, interpreter, or companion, when present, will focus only on keeping the communication lines open between the medical professional and individual with deafblindness. Specifically, the SPP, interpreter, or companion should not be expected to perform the tasks that the healthcare professional usually undertakes, such as assisting the patient with changing clothes or being checked for vitals.
Encourage the patient to make preparations before coming to the clinic
The third important thing is to proactively recommend that any individual with a disability, including deafblindness, make preparations before coming to the hospital or medical clinic. The individual with deafblindness can help streamline medical visits by typing and printing out the following:
Statement of disclosure of disability with its concurrent conditions
Primary doctor information
Family contact information
Medical history, medications, and treatments
Along with these printouts, the individual with deafblindness may also consider bringing:
Assistive communication smartphone apps
A paper or dry erase board with bold, black markers
An emergency care bag (labeled with contact information) filled with battery replacements for hearing aids and/or cochlear implant processors, chargers, extension cords
Assistive technological devices such as Braille displays and iPads
Communication cards already written with symptoms, conditions, and feelings (pain levels)
Although the individual with deafblindness may bring their own communication devices, an interpreter is ideal in all situations. AIDB Coordinator of Services for Deafblind Wendy Darling states:
It is incumbent upon the healthcare provider to provide accessible communication according to the patient’s primary mode of communication. The communication cards and texting for example are wonderful for incidental things, but when the doctor comes around, there should be an interpreter there if the patient relies on ASL to communicate.
This brings us to our third and final parameter: establishing support for any individual with deafblindness who arrives at the hospital or private clinic seeking medical attention, with or without an SSP, interpreter, or companion.
Third parameter: Establish support
Individuals with deafblindness require support while seeking medical attention. They have the autonomy to decide which accommodations to use to receive information and interact with the medical professional. When the eyes and/or ears are limited in their role for the individual with deafblindness, hands function more as “tools, sense organs, and voice when processing tactile information.”
Provide accommodations for communication
The following accommodations are commonly-used but variable among this demographic:
In-person sign language interpreter (ASL and Tactile)
Touch or visual languages (VRI – virtual interpreting)
Print on palm
Hand-held amplification devices (to amplify reading the print)
Captioning or CART
While these common accommodations assist the individual with deafblindness, certain communication strategies do call for the medical professional’s input. Smell and touch help when respectfully approaching an individual with deafblindness if the dual sensory loss of both hearing and vision is severe.
If tactual cues (touch) are involved when working with the individual with deafblindness to identify their medical needs, the medical professional should first place a hand under the patient’s last two fingers to guide movement and gesturally communicate what will happen during the procedure. This method helps decrease the possibility of startling the patient. This hand-under-hand tactual guidance, considered as language of movement and touch, empowers the individual with deaf-blindness in their communications and helps them more readily receive information about the procedure. Demonstrating patience through considerate communication strategies that invite rather than demand responses helps validate the needs and wellbeing of the patient. During the interaction, the medical professional needs to allow for pauses to let the individual with deafblindness cognitively respond.
Produce accessible reading materials for patients
Another way of establishing support is to check the accessibility of print and technology when it comes to reading. The APH Guidelines for Print Document Design is an effective resource when discerning the readability of documents including (but not limited to) the following:
Headings and subheadings
Lists and bullets,
Margins, color, and backgrounds
Consider these guidelines when printing patient care forms and marketing materials.
With respect to these three parameters
Having understanding, proactively communicating, and establishing support will help medical professionals accommodate individuals with dual sensory loss of both vision and hearing. I hope this article encourages health professionals to seek that connection with individuals with deafblindness while addressing their medical needs, even if the drastically changing COVID-19 healthcare protocols mean more effort is required. Keep in mind that if the hospital or private clinic refuses to respect the requests of an individual with deafblindness, an ethics consultation to ensure the individual’s medical needs being met may have to occur.
With respect to individuals with dual sensory loss of both vision and hearing in general, John Lee Clark, an author and poet who has deafblindness, shares his view on the pandemic:
We’re a population already relentlessly isolated because of distantism… One way to look at this is we were already in quarantine all along, virus or no virus… So it bothers me to think that our already minimal social contact would be debated… Instead, let’s focus on minimizing risk and with whom that deafblind people interact.Stemming from Clark’s words, an interpreter is vital for any individual with deafblindness seeking medical attention, as they can ensure the patient is informed and empowered to make decisions for their own healthcare. With this in mind, I hope this article has been helpful and given medical professionals the opportunity to learn about and apply the three parameters within their respective work. Doing so will surely help contribute to the theme of “Deaf-Blind. And Thrive” this week, and beyond!
About Dr. Moreman
As Creative Communications Consultant, Dr. Sarah Elizabeth Moreman, originally of Auburn, Alabama, shares her expertise on matters of creative communication strategies, disability awareness, compliance, DEI training, student-teacher interaction, and writing. Dr. Moreman serves as English Instructor at Jefferson State Community College of Birmingham, Alabama. When not teaching, public speaking, consulting, or doing marketing projects, she enjoys traveling to reconnect with friends and family, along with keeping healthy and fit taking Pure Barre and dancing classes. More information can be found via her website.
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