"Nothing about us without us," is an important rallying cry in the disability community. It means that no policy, product, or service should be developed without the full and direct participation of members of the group that will be impacted.
Whether it is an innovative technology product, the installation of a new listening system at a theater, or standards for captioning on social media, the best results require the input and involvement of the end users. It just makes sense.
That is why leading technology companies like Google include trusted testers from various disability groups in the development and enhancement of their products. And why the Ida Institute includes people with hearing loss in their research and brainstorming sessions.
It is also why audiologists should become more involved in the hearing loss community outside of the clinic. Practicing person-centered care requires it.
How to engage with the hearing loss community
Interacting with the hearing loss community in real world settings will help audiologists better understand their patients’ concerns and see firsthand the struggles they face as they navigate the world.
They will see which communication solutions work well outside the clinic and which do not. Audiologists will also learn which issues are most important to us. This knowledge can then be incorporated into their individual patient care recommendations.
There are many ways audiologists can form these important links with the hearing loss community.
1. Attend hearing loss support group meetings
This is probably the easiest place to start. Many hearing loss support groups exist throughout the world, including actives ones in the USA (Hearing Loss Association of America), Canada (Canadian Hard of Hearing Association) and the UK (Hearing Link). The International Federation of Hard of Hearing People (IFHOH) lists local resources for much of the rest of the world on its website.
Many groups hold monthly chapter meetings for people with hearing loss, both in person and virtually. Volunteer to speak at one or simply join and soak up the ambience.
Members are excited when an audiologist attends, so introduce yourself. You may pick up a few new clients over time, but at a minimum, you will become more familiar with the needs of the community. Boosting your empathy and understanding will improve your ability to practice person-centered care.
If you’re feeling confident, you could set up your own group sessions. The Ida Institute’s Group AR tool is a free guide that helps you organize and run peer support sessions for your clients.
2. Create a survey or host a roundtable
Consider surveying your patients to learn more about them. Ask for feedback on the services you provide. Which services are most helpful? What is still needed?
Ask about the technologies and techniques (other than hearing aids) that they use to communicate well. You may find innovative products to add to your clinic's offerings.
Or host an annual roundtable to hear from people with hearing loss directly. Your attendees will benefit from the peer support, and they will see that you care about their needs.
Incorporating their feedback into your office design, check-out procedures, and treatment plans will help you deliver care that is increasingly person-centered.
3. Join a hearing loss Facebook group
There are many Facebook groups for people with hearing loss, each with its own style. Read the posts to see what concerns people share as well as the responses that are provided. Weigh in if you feel comfortable, or simply watch and learn from the sidelines.
Choose groups wisely, as some are managed better than others. Visit a few to see if the topics vary by geography and/or degree of hearing loss.
There are other online groups you could join too, such as Mayo Clinic Connect, a peer support forum for people with hearing loss.
4. Advocate on behalf of people with hearing loss
Much advocacy is needed to improve communication for people with hearing loss in a variety of settings. Leverage your expertise in hearing science and communication tools to work with local governments to make this happen. Mandate hearing loops in public spaces or promote captioned performances at a local theater or movie house.
Your credibility as a licensed professional will add weight to the discussions.
Co-create with your clients
Person-centered care requires a deep understanding of your patient, the ability to empathize with their communication challenges, and an emphasis on actionable and usable treatments.
Forging strong links with the hearing loss community will help you embrace the idea of "nothing about us without us,” and allow you to co-create solutions for the most important communication problems your clients face. And that's what person-centered care is all about.
Shari Eberts is a hearing health advocate, writer, speaker, and avid Bikram yogi. She is the founder of Living with Hearing Loss, a blog and online community for people living with hearing loss and tinnitus. She also serves on the Board of Hearing Loss Association of America. Shari has an adult-onset genetic hearing loss and hopes that by sharing her story she will help others to live more peacefully with their own hearing issues. Her e-book, “Person-centered Care from the Patient’s Perspective”, details her experience living with hearing loss. She hopes the book will provide audiologists with valuable insights they can use to make their practices more person-centered. Connect with Shari: Blog, Facebook, LinkedIn, Twitter.