I recently attended a workshop hosted by The Ida Institute in Skodsborg, Denmark. Ida is a non-profit organization whose mission is to develop and integrate person-centered care in hearing rehabilitation. Ida is funded by The Oticon Foundation and collaborated on this workshop with Hearing Loss Association of America, The Ear Foundation, and Action On Hearing Loss.
Since its inception in 2007, Ida has periodically brought together groups of audiologists and related professionals to better define what patient-centered care means and to develop strategies and tools that audiologists can use to implement patient-centered care in their own practices. In the past year, Ida began inviting people with hearing loss into these discussions — a wonderful idea!
The workshop I attended, called Partners in Hearing — Learning Together, contained a mix of people with hearing loss, leading audiologists and representatives of patient organizations. I was thrilled to participate and hope that Ida will continue to include the patient perspective in future workshops.
Sharing Different Views Builds Knowledge
Bringing different perspectives together made the meetings eye-opening for everyone. For example, audiologists are often surprised by how much hearing loss impacts all aspects of a person’s life, and how fraught it is with emotion for the person with hearing loss. Practitioners also sometimes underestimate the toll hearing loss has on not just the person with hearing loss, but the entire family. They sometimes forget that if one person in the family has hearing loss, the whole family has hearing loss.
On the other hand, I gained further insight into how audiologists approach hearing care — primarily driven by hard data and analytics rather than softer things like patient commentary and emotions. This is not because audiologists are cold-hearted. Hardly. It is because that is how they are trained. Patient-centered care aims to push audiologists beyond this empirical bias, bringing patient and practitioner together in partnership to create better hearing outcomes. This is exactly what occurred at the workshop.
Co-Creation Sparks New Ideas
It was a whirlwind two days filled with inspiring presentations, creation games, breakout sessions and hard work. While initially the approximately 20 attendees worked together to define the focus of the activities, we quickly broke into smaller groups to dive deeper into five topics: (1) Peer-to-peer support, (2) Family and Friends (3) Empowerment, (4) Journey planning and (5) Workplace.
Each small group contained at least one audiologist, at least one person with hearing loss and at least one representative from a patient support organization so all views were included. The group’s task was to develop the initial framework for a practical tool related to the topic area. The goal is that these tools will one day be available for patient use through audiologists and also on-line. I chose the Family and Friends working group.
A Tool To Navigate Hearing Loss With Family & Friends
I know firsthand how difficult it can be to navigate hearing loss with family & friends. Not only do we need to continually educate them about our hearing issues and how they can best help us hear — it is not easy to understand hearing loss until you have lived it — but we must also learn how to negotiate and resolve conflict in the family/friend group related to speech patterns, seating arrangements and other everyday challenges. A tool for resolving these issue would be very useful.
My group developed a conversation guide in the form of a game. The players (family members or group of friends) begin by choosing a situation card. Examples include watching TV, family dinner, going to the movies, or dining out. The list of possible situations is endless so the game would also include blank cards for write-ins.
To play, the group would follow the structured prompts so that each person had a chance to share her emotions about the situation and provide her thoughts. The group would then brainstorm possible behavioral changes and or technology fixes to improve the situation, hopefully for everyone.
The format ensured that everyone in the discussion had a chance to share the same type of information and that each person’s point of view was considered in the solution. Since emotions are often difficult to verbalize calmly, emoji cards would be used instead of words — each person selecting one to represent how the situation made him feel.
To complete the game, the group fills out a solution card that details the decisions they made, the behavioral changes or technology solutions planned and any follow-up items. The card could be displayed in the home for future reference. A second card could be shared with the person’s audiologist to get input and suggestions from him. This feedback loop from home to audiologist, and back again, is an important part of patient-centered care.
At the workshop, we role-played a discussion about TV watching for the broader group. Mom didn’t hear well and wanted captions on all the time. The teenage daughter thought they were distracting when watching movies, while the school-aged son didn’t like how they covered the scores when watching sports. Dad didn’t feel strongly either way.
Everyone chose their emojis to express how they felt, talked about the situation and brainstormed a possible compromise — using captions for everything but sporting events, where Mom would use a different technology to make sure she could still enjoy the game. She was going to ask her audiologist for some suggestions.
Not all situations are this cut and dry, but a tool like this would provide a framework for calm discussions, no matter the hearing loss topic, and create a good excuse to bring people to the negotiation table, which is often half the battle. More work is needed to turn this concept into a usable and practical tool, so please share your ideas in the comments. I hope to stay involved in its further development.
Readers, would you try a game like this with your family or friends?
Is it possible for captions, or subtitles as we call them in the UK, to appear below the visible part of the programme? Can a TV screen be adjusted so that the programme is unimpeded by the captions and they appear directly beneath? I am not technically knowledgeable but my TV allows me to select different visual formats eg widescreen, 14:9 etc and certainly in widescreen mode their is space beneath the programme/ film which is then unused and could have the captions displayed thus not interfering with the on screen action.
Thank you for sharing that idea.
There is so much here that I hope you will forgive me for cherry picking one part of your post for a comment. That would be the nature of the relationship between the provider and the patient. No one denies the value of technology and the seemingly magical effectiveness of today’s devices. Yet as I look back on 20 years of dealing with as many as four audiologists the primary emphasis in our sessions was mostly centered around the devices and the boundless knowledge of the providers. I’m grateful for all of that. I am, however, hard pressed to remember ever being asked how it feels to be hearing impaired or what are my fears and expectations. I come from a background of client centered therapy where listening was my primary tool. I would suggest that such training be an integral part of an audiologist’s training. This was a hugely important experience for you Shari. Thanks for sharing it.
I agree training on that piece is a critical step to improving care. Thanks for sharing your perspective.
Well said Jerry. Over the years, I’ve been “seen” by many medical professionals and can’t remember one who’s ever asked…..”So how are you feeling about this or that?” Only in the last year or two has my family Dr’s office ever asked about my emotional state of mind……of course it’s on a computer tablet and I “have to” “get to” watch an advertisement about some medicine. Ask me about some weight loss drug……..lol! Next time, I think I’ll throw in a random answer just to see if anyone catch’s it….Thanks for representing us Shari. You rock!
Happy to do it! Thanks Tom!
I rarely watch tv with anyone because captions are very annoying if you are not hearing impaired. You can’t blame hearing people for not wanting to look at them as I can imagine they are very distracting . But a life saver for us HOH and deaf folks .
I think most audiologist rarely have the extra time to discuss social issues that affect hearing impaired people . Their main goal is to just fit you with a hearing aid that works best . And usually that is the biggest challenge of all , coping with hearing aids that will never replace normal hearing.
I think the practice of audiology might be changing such that counseling will become a more important part of the visit. Let’s hope so! Thank you for sharing your thoughts.
It is interesting to read Ginas answer. As in Denmark it is very normal for everyone to have subtitles, as we don’t dub movies and series. So here noone would be annoyed by them.
Thanks for sharing your thoughts.
I believe it is now possible to display closed captioning on the lens of smart glasses. The speech to text converter and microphone would be built into the glasses. This would be a big help for face-to-face communication and watching TV/Movies without distractions to normal hearing individuals.
I have not seen that but would love it! Thanks for sharing whatever information you have.