My Hearing-Loss Journey
My hearing-loss journey began as a child, watching my father struggle with the stigma of his hearing loss.
His hearing loss developed in early adulthood, an unwanted nuisance he inherited from his mother. I vaguely remember him wearing one hearing aid, and then two, and proceeding to grow his sideburns long over his ears to hide the evidence. This looked okay in the 1970s, but his sideburns stayed long his entire life, even as fashions changed.
Despite my father’s severe hearing loss and his difficulty communicating in a variety of environments, hearing loss was an unmentionable topic in our household. His generation was not eager to highlight weaknesses, particularly the men. This led to awkward situations where I would observe him smiling and nodding to a conversation partner, but clearly not understanding what was said.
Over the years, he retreated more and more into himself, preferring isolation to the possible embarrassment that could come from mishearing something. Nobody in my family knew what we needed to do to ease his burden and he never asked for any help. Looking back on it, I wish we had made more of an effort.
I remember one family party where my father sat alone at a table with his back to the festivities. When I asked him why he was sitting all alone, he replied, “If someone wants to talk to me, they know where to find me.”
At the time, I thought he was feeling shy or upset, but now that I have hearing loss, I know the real reason. He was probably exhausted from all the listening effort and just couldn’t bring himself to bother any longer.
When my own hearing difficulties began in my mid-20s in graduate school, I was distraught. Would I also lead a life of social isolation?
My first trip to the audiologist was a relief—the verdict was mild hearing loss, but it was too early to treat—a perfect opportunity to deny and ignore my hearing issues, which I did for the typical seven to 10 years.
Eventually my hearing loss worsened to the point where I began wearing hearing aids, but I hated them and wore them as little as possible. I was following in my father’s footsteps of shame and stigma.
Once I had children, this all changed. Because my hearing loss is genetic, I knew there was a chance I had passed it on to them. I saw them watching me fake my way through conversations and laughing at jokes I had not heard. I realized I was perpetuating the stigma. Something needed to change. I decided to finally accept my hearing loss.
To understand more about hearing loss, I began volunteering with hearing-loss-related charities. I met other people with hearing loss and learned the tips and tricks they used to lead a full and productive life despite the challenges of hearing loss.
Soon I grew confident telling people about my hearing loss and asking them to follow the communication best practices I needed to hear my best. Over time, I became an advocate for those with hearing loss, writing a weekly blog post at LivingWithHearingLoss.com and serving on the Hearing Loss Association of America board of trustees.
I hope that, by sharing my journey, I will help others to live more comfortably with their own hearing issues. If my children develop hearing loss, I know that they will be better equipped to handle the challenge because of these efforts.
What Person-Centered Care Means to the Patient
When I first began having trouble hearing, I did not know anyone with hearing loss to look to for support. I was unaware of accessibility options for watching TV or attending movies or the theater. I was not an expert on communication best-practice tips.
This is probably true for most of your patients. I wish my audiologists had shared this type of information with me at the beginning of my journey. Instead, I learned these things 15 years later, from other people with hearing loss. That is a lot of wasted time.
Patient-centered care (PCC) could have alleviated many of the struggles I faced in my early days of hearing loss. PCC requires treating the whole patient—not just the technical aspects of audiograms and hearing aid fittings, but also the emotional aspects of hearing loss. It involves understanding the individual’s specific communication needs and using them to plan treatment.
The best audiologists will provide a road map and set of tools that patients can use to manage their hearing loss successfully. These will not be the same for every person, but must be tailored to each patient’s priorities and communication challenges. And they must take the person’s emotional journey into account. A client’s emotional commitment is critical for compliance with the treatment plan.
In my e-book, Person-Centered Care from the Patient’s Perspective, I outline four main components of PCC from the patient perspective. They include the following:
- Partner with your patient. Each person’s hearing-loss journey is unique; a one-size-fits-all approach will not work. Focusing on what is important to your patient will increase his or her satisfaction and improve compliance.
- Make your office hearing-loss friendly. People are there because they cannot hear well. Train your staff to use communication best practices and have assistive-listening technology on hand to aid as needed.
- Embrace creativity. Don’t get trapped in a hearing-aid-only approach. Linking aids to other assistive-listening devices will give your patients greater access in a wider variety of situations. Stay current as new options become available.
- Think beyond the technology. Share basic communication tips with your patients and their families. Simple adjustments in behavior alone can increase communication success and lower frustration for both sides.
How Can You Better Implement PCC In Your Practice?
Audiology is a challenging profession. Your training was based around the science of hearing and the technical aspects of augmenting sound with hearing aids. In some programs, limited time was spent on counseling skills and lifestyle-management tools. The emerging class of over-the-counter (OTC) devices and the proliferating number of apps and other assistive-listening devices were not a focus but, as the landscape changes, so must audiologists.
PCC is a perfect guide to successful change. The following are my suggestions for implementing components of PCC in your practice.
Partner with Your Patient
Ask your patients about their hearing-loss journey to better understand what is most critical to their well-being. Include the patient’s family to get their perspectives and buy-in. Investing time up front to identify critical hearing issues will minimize follow-up appointments because the hearing aids are not working.
Involving the patient in creating the treatment plan will increase their motivation to comply with it. Together, you can set realistic goals and lay out expectations for the work that is ahead for both of you.
Hearing aids don’t work like eyeglasses, but many patients do not understand that. Focusing on the patient’s primary areas of importance will bring success more quickly and improve satisfaction. Happier patients are also more likely to recommend your services to a friend.
Make Your Office Hearing-Loss Friendly
Remember that your patients are there because they cannot hear well. Tailor your services to their needs throughout the entire process, including when making the appointment.
Train your staff to speak loudly and clearly, at check-in, at check-out, and over the phone. Have your receptionist personally alert patients when it is time to see you, so they won’t have to worry about hearing their name called.
Keep pocket-talkers or other assistive-listening devices on hand to aid in communication during the appointment, if needed. Providing a written summary of the visit will reduce follow-up calls for clarification questions and will help the patient’s family stay informed.
Make sure your office is well lit and quiet to promote a better hearing environment. Installing a temporary hearing loop is a great way to improve accessibility and allows patients to try one out in real time.
Share relevant literature and brochures for local hearing-loss support groups in your waiting room. This will help your patients feel less alone in their journey. Attend local support-group meetings yourself to gain valuable insights into the needs of your patients. This can also be an excellent recruitment tool.
Hearing aids alone do not provide the best solution for most people. Combining them with assistive-listening devices can be far more powerful.
Technology can be difficult for some individuals to understand and patients will look to you for suggestions and clear explanations. Try out the devices yourself to better understand how they can assist in a variety of situations.
For example, use a Roger Pen at dinner one night or a speech-to-text app at a lecture or meeting. The more you know, the better you can guide your patients toward quality alternatives at a variety of price points. Provide in-office demos of your favorite products so your patients can give them a try.
When the United States market opens for OTC hearing aids, technological advancement will only accelerate. Your skills will be incredibly valuable as patients learn to navigate this changing landscape.
Unbundle your fees to help patients understand the value of your time. This may also shift your focus toward finding solutions more generally, rather than selling hearing aids.
Some patients may do better with alternative devices at first. Welcome them into your practice and guide them as their journey progresses to more traditional hearing devices.
Think Beyond the Technology
While hearing aids and other devices are key, patients’ behaviors and those of their communication partners can go a long way toward making conversations more satisfying.
Teach your patients and their families best-practice communication methods that they can use at home and with friends. Promote self-advocacy skills so patients learn to ask for the assistance they need.
This can include setting ground rules for conversations up front (i.e., only one person speaks at a time, etc.) or using non-verbal cues, like placing a hand behind your ear to let the speaker know you are having trouble hearing without interrupting the flow of the conversation.
Recommend auditory training. Auditory training allows patients to practice hearing in difficult listening environments, improving their speech recognition. Many programs can be done at home or online. Auditory training often enhances patient satisfaction with their devices.
Educate your patients about the many available accommodations for hearing loss and encourage them to use them. This includes hearing loops in public spaces and museums, caption readers at the movies, and listening devices at the theater. The more often this equipment is used, the more common it will become.
Recommend that your patients meet other people with hearing loss. If no local support group exists, consider starting one of your own. Community outreach may also bring in new patients.
Eberts S. (2019) Person-Centered Care From the Patient’s Perspective. https://livingwithhearingloss.files.wordpress.com/2019/06/person-centered-care-from-the-patient-perspective.pdf