Consider this case example: A deaf patient comes to an in-person genetic counseling appointment due to their family history of breast cancer in order to receive predictive genetic testing. A virtual ASL interpreter is provided; however, this patient prefers an in-person interpreter alongside reading their provider’s lips. As a result, the patient feels no connection with the provider because they were watching the interpreter’s screen throughout the session.

This case example brings together the experiences I’ve seen when meeting with patients with both hearing and vision loss, as well as narratives told in the literature (Steinberg et al., 2007; Li et al., 2002; Newton and Shah, 2013; Iezzoni et al., 2022). As a student genetic counselor to patients with hearing and vision loss, I’ve recognized the same isolation and discomfort present in personal friends with hearing loss. Although health care institutions often have regulations for supporting patients with sensory conditions, these policies don’t always adequately meet the patients’ preferences.

Patients with hearing or vision loss often enter genetic counseling with preexisting perceptions of the health care system. Historically, many viewed medical approaches as attempts to “fix” traits they did not consider deficits (Middleton et al., 1998). As genetic testing has advanced, so have perceptions of testing from these groups. While those with hearing loss may seek genetic testing for explanations for their deafness, those with vision loss usually seek genetic testing to help with research or check eligibility for clinical trials (Britten-Jones et al., 2024; Potrata et al., 2014; Steinberg et al., 2007). Regardless of the reason a person with vision or hearing loss may come to your clinic, it’s imperative that we support them wherever possible, and not further their potential negative experiences with genetics or the health care system overall.

A key tenet of genetic counseling is ensuring patients understand the information we provide, so we want to be sure to do that in a way that’s accessible for the patient. The American Disabilities Act (ADA) echoes this, stating that entities must “communicate effectively with people who have communication disabilities” (ADA.gov). However, this “effective communication” is not defined any further, and does not mandate specific modalities to achieve this (Agaronnik et al., 2019).

Seeing a Patient With Hearing or Vision Loss

Research consistently shows that patients with sensory conditions better understand and engage with information when their preferred communication method is used (Agaronnik et al., 2019). Unfortunately, the patient in our case example was not able to effectively engage with the counselor or the information presented in the session, because their preferred communication method was not being used. Because the ADA’s language is broad, providers may believe they have communicated effectively even when patients feel otherwise (Agaronnik et al., 2019; Taneja et al., 2004). These preferences vary widely depending on severity of disability, cooccurring conditions and what tools patients use in daily life.

Commonly preferred methods include (Agaronnik et al., 2019; Newton & Shah, 2013; visionaustralia.org):

Hearing Loss:

• Signage around the building or waiting area rather than announcements or calling names
• Sign language (confirm the form of sign language before booking interpreters)
• Lip reading (as described in our patient’s case, this can create a sense of connection between patient and provider)
• Subtitles (for virtual appointments)

Vision Loss:

• Qualified readers
• Braille materials (in all forms provided, not just general consents)
• Enlarged fonts
• Screen readers

Creating a More Inclusive Space

We may not know a patient’s communication preferences when they first schedule, but we can reach out beforehand through secure messaging, email or text to ask what works best for them. Ideally, institutions would offer a range of accessible options, though this is not always feasible. In our case study example, the clinical team could have messaged the patient to learn they prefer an in-person interpreter and could have organized this prior to the appointment.

Many health care systems prioritize low wait times, which can increase when workflows deviate from the norm. In our example, the patient preferred to have an in-person interpreter, but this preference was not clarified ahead of time, so the provider defaulted to using an electronic interpretation system. Virtual interpreter services are seen by providers as more reliable and easy to access when compared to an in-person translator that must be scheduled ahead, be on time to the appointment, check in with the office, and find the proper room (Agaronnik et al., 2019; Newton & Shah, 2013).

Even when preferences between patient and provider differ, we as genetic counselors should try to prioritize the patient’s preference, such as the in-person interpreter in our example, as this leads to better outcomes, such as avoiding “inaccurate and incomplete medical information, medical errors (e.g., incorrect medication dosages), and misdiagnoses” (Agaronnik et al., 2019). In cases where the hospital system cannot provide the form of communication that a patient is requesting, the providers can encourage patients to bring their own interpreter or communication support.

3 Next Steps

Here are some recommendations for you to consider with your team to try and make the most positive environment for patients with vision/hearing loss while keeping your office’s workflows top of mind.

1. Find a way to touch base with the patient prior to their appointment about what communication methods have worked best for them in the past.
2. Try to ensure your office is accessible for a patient’s preferred methods of communication known to work for them, e.g., making it possible for them to bring these to an appointment.
3. See if it would be possible to introduce to your workflow communication methods mentioned in this piece, if your office doesn’t standardly offer them. If it is not possible to introduce them to your workflow, question this. Create a meeting with your manager or hospital administration team to discuss how these alternative communication methods can be integrated into your practice.

References

• Agaronnik, N., Campbell, E. G., Ressalam, J., & Iezzoni, L. I. (2019). Communicating with patients with disability: Perspectives of practicing physicians. Journal of General Internal Medicine, 34(7), 1139–1145. https://doi.org/10.1007/s11606-019-04911-0
• Britten-Jones, A. C., Schultz, J., Mack, H. G., Kearns, L. S., Huq, A. J., Ruddle, J. B., Mackey, D. A., Hewitt, A. W., Edwards, T. L., & Ayton, L. N. (2024). Patient experiences and perceived value of genetic testing in inherited retinal diseases: A cross-sectional survey. Scientific Reports, 14(1), 5403. https://doi.org/10.1038/s41598-024-56121-2
• Iezzoni, L. I., O’Day, B. L., Killeen, M., & Harker, H. (2004). Communicating about health care: Observations from persons who are deaf or hard of hearing. Annals of Internal Medicine, 140(5), 356–362. https://doi.org/10.7326/0003-4819-140-5-200403020-00011
• Iezzoni, L. I., Rao, S. R., Ressalam, J., Bolcic-Jankovic, D., & Campbell, E. G. (2022). Incidence of accommodations for patients with significant vision limitations in physicians’ offices in the US. JAMA Ophthalmology, 140(1), 79–84. https://doi.org/10.1001/jamaophthalmol.2021.5072
• Middleton, A., Hewison, J., & Mueller, R. F. (1998). Attitudes of deaf adults toward genetic testing for hereditary deafness. American Journal of Human Genetics, 63(4), 1175–1180.
• Newton, V. E., & Shah, S. R. (2013). Improving communication with patients with a hearing impairment. Community Eye Health, 26(81), 6–7.
• Potrata, B., McKibbin, M., Lim, J. N., & Hewison, J. (2014). “To perpetuate blindness!”: Attitudes of UK patients with inherited retinal disease towards genetic testing. Journal of Community Genetics, 5(3), 215–222. https://doi.org/10.1007/s12687-013-0176-7
• Steinberg, A. G., Kaimal, G., Bain, L., Krantz, I., & Li, Y. (2007). Parental narratives on genetic testing for children with hearing loss: A qualitative inquiry. American Journal of Medical Genetics Part A, 143A(14), 1533–1545. https://doi.org/10.1002/ajmg.a.31731
• Taneja, P. R., Pandya, A., Foley, D. L., Nicely, L. V., & Arnos, K. S. (2004). Attitudes of deaf individuals towards genetic testing. American Journal of Medical Genetics Part A, 130A(1), 17–21. https://doi.org/10.1002/ajmg.a.30051
• U.S. Department of Justice. (n.d.). Effective communication. ADA.gov. https://www.ada.gov/resources/effective-communication
• Vision Australia. (n.d.). Tips on communicating to patients with vision loss. https://www.visionaustralia.org/news/tips-communicating-patients-vision-loss

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