Melanie Brand was a good swimmer who wore hearing aids for severe hearing loss. When she requested swimming for gym class in high school, the coach refused and reasoned that Melanie would not be able to hear his instructions. “Put me fifth in line, and I will follow the people ahead of me,” she responded. It was not until Melanie's father requested a meeting with the guidance counselor that the coach finally conceded. Melanie went on to do well in her swimming class. However, 50 years later, she still feels angry and frustrated by that memory.
Hearing health care professionals may believe that stigma no longer deters people with hearing loss from seeking care. However, Melanie's story is similar to countless others that we have heard from patients and audiologists across the country over the past three years while presenting the workshop, “Taking the Sting out of Stigma.”
Research supports that societal stigma against hearing loss may prevent patients from taking the first step of visiting a hearing care professional. In the MarkeTrak IX Consumer Study conducted by the Hearing Industries Association in 2014, the most often-cited reason for not pursuing hearing care was “can hear well enough” by 51 percent of respondents with self-identified hearing loss (respondents were able to select multiple reasons; see Fig. 1 or http://bit.ly/2M5cnYy.
Stigma-related issues were also predominant, garnering all 64 points. Twenty-one percent of respondents described hearing aids as “too embarrassing,” 15 percent selected “unattractive,” 14 percent claimed that the hearing aids were “too noticeable,” and 14 percent felt that they were “too young” to wear hearing aids. Cost concerns also played a key role in patients’ decisions to not seek help. The reasons “it's too expensive,” “cannot afford,” and “no coverage” totaled 94 points.
Patients’ lack of engagement with hearing care also surfaced in the responses. In addition to the number one answer of “can hear well enough,” 25 percent noted that they “have other, more serious priorities.” This lack of engagement from addressing hearing loss potentially stems in part from the fear of societal stigma.
In our experience, the impact of stigma looms large, and incorporating stigma counseling into audiology practices is beneficial to patients and clinicians. To address patients’ issues related to stigma, it's critical to understand the pervasive nature of stigma and employ tested strategies and tools.
TWO TYPES OF STIGMA: EXTERNAL AND INTERNAL
How does stigma exert such a powerful impact on people with hearing loss? Stigma can be divided into two types: external and internal. External or environmental stigma are messages that people with hearing loss receive from family, friends, colleagues, and/or even strangers. When a person strains to hear, others may express impatience, embarrassment, discomfort, or anger.
Internal stigma is manifested by a series of negative messages that people with hearing loss may tell themselves, triggering embarrassment, vulnerability, shame, and/or fear. For example, someone with hearing loss may worry about not being able to hear the speaker at an office meeting. This person may fear that by asking for accommodations, he or she will appear incompetent and possibly get fired.
ENCOURAGE PATIENTS TO DISCUSS STIGMA
Many patients may be reluctant to discuss their hearing loss, particularly new patients. They may have decided to see an audiologist after receiving an ultimatum from a family member. Others may have procrastinated on setting the appointment for years.
By immediately delving into the topic of stigma, an audiologist will most likely encounter silence, resistance, and denial. To spark a dialogue with patients, ask open-ended questions, such as:
- What is your first memory of having trouble hearing? How old were you?
- What perceptions do you think others in your life have about hearing loss?
- Name two of your most challenging listening situations. Why are they challenging?
- How might your life change if you were to hear others more easily?
EIGHT TOOLS TO ADDRESS STIGMA
Establishing a dialogue with a patient creates the groundwork for using these tools. Audiologists are encouraged to view these activities collectively—as a toolbox from which they may select the most useful tools on a patient-by-patient basis, keeping in mind that each patient with hearing loss is unique. These tools formatted for patients are also published in this issue's Patient Handout section.
Tool #1: Take responsibility for your hearing loss.
Too often, patients believe that they can successfully hide their hearing loss from friends, coworkers, and even family members. They may not detect that their selected volume for the TV is earsplitting to those around them or that they fail to turn around when coworkers call out to them in the office. It is important to help patients understand that hearing loss is not a secret. Patients can take responsibility for their hearing loss by selecting optimal amplification strategies and committing to those strategies every day.
Tool #2: Create and adopt new messages about your hearing loss.
Internal stigma starts with devaluing messages that patients tell themselves. Patients may not recognize which voices in their head are truly theirs versus those of others. In fact, patients may not even be consciously aware of these internal voices. Audiologists may initiate the discussion by asking patients to describe their thoughts when in a challenging listening situation. Together, audiologist and patient may identify the “shoulds” and the “they” committees, remembered voices from friends, teachers, even parents, well-intentioned people who nonetheless transmitted negative messages about hearing loss. The key message for patients is that their hearing loss is one part of them, but not all of who they are.
Tool #3: Make a list of difficult listening situations.
Addressing stigma in patients’ lives begins with reviewing the daily details of their lifestyle. Patients can create a list of specific difficult listening situations for each day of the week, and organize the list by location (home, work, public places, etc.). Patients may find it helpful to describe their feelings in each challenging listening situation, whether it be discomfort, vulnerability, embarrassment, or shame, as well as to note whether a situation triggers the memory of a past experience with external stigma.
Tool #4: Plan how to talk about your hearing loss.
Patients benefit when they develop a plan describing to what extent they will reveal their hearing loss, as well as their communication needs, for each of the difficult listening situations identified in Tool #3. For patients whose hearing aids or cochlear implant processors are under their hair, this tool still applies. Family members, co-workers, and friends will benefit from some guidance on how best to communicate with them.
Tool #5: Ask for accommodations.
Requesting accommodations in difficult listening situations takes courage. Together, the audiologist and the patient may identify the desired outcome before the patient initiates a discussion at work or home asking for specific accommodations. It's important for both audiologists and patients to educate themselves on assistive listening devices like remote microphones and other creative accommodations like having note-taking buddies. These accommodations play a particularly important role in the workplace.
Tool #6: Communicate effectively and comfortably.
Patients with hearing loss have the tendency to bluff during conversations until bluffing becomes an automatic response. At the other end of the spectrum, patients monopolize a conversation to avoid the challenge of hearing others. A hearing difficulty can morph into an inability to listen and connect with others. Audiologists can coach patients to develop communication strategies such as preemptively informing people that they might occasionally miss a word. Patients may ask speakers to repeat or rephrase their point. Patients may also ask conversation partners to face them when speaking. Finally, a sense of humor goes a long way. For example, each time she hears something incorrectly, one hearing loss patient declares, “Hearing loss alert!”
Tool #7: Set realistic and meaningful goals.
Change happens slowly and requires commitment. Patients will be more successful by taking a series of small steps rather than attempting one huge leap. Audiologists may help patients prioritize changes by asking, “If you didn't have a hearing loss, how would you live your life differently?” The usual answer to this question is the patient's most cherished goal. Audiologists should document one to two goals for each patient and follow up accordingly.
Tool #8: Connect with your community of people with hearing loss.
Engaging in a like-minded community is a powerful way to help patients address stigma. When around other people with hearing loss, patients experience the freedom to truly be themselves. Audiologists may encourage patients to participate in online forums and connect with advocacy groups that serve both adults and children, such as the AG Bell Association for the Deaf and Hard of Hearing, Association of Late Deafened Adults (ALDA), Hands & Voices, Hearing Health Foundation (HHF), and Hearing Loss Association of America (HLAA), among others.
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