Give your feedback on a campaign about hearing loss & care

Person-centered care means putting people and their families at the center of care decisions and acknowledging them as experts, working alongside medical professionals to get the best outcome. This is a topic that often comes up in the discussions in the Hearing Loss group. Now is your chance to help get this message out to hearing professionals around the world.

The Ida Institute is a non-profit organization working to advance person-centered hearing care. They are currently developing an awareness raising campaign about the value of person-centered care for people with hearing loss and their relatives − and they would like your help! This would include:

  1. Reading and reviewing a document explaining the proposed campaign.
  2. Completing a short questionnaire with your feedback.

If you are interested in reviewing the campaign materials and providing feedback please send an email with the subject “I volunteer to give feedback on person-centered care” to contact@idainstitute.dk before June 30, 2020.

Thank you for sharing this Colleen. People with hearing loss; the 'hard of hearing' crowd in particular, need to be more proactive in sharing their thoughts about how hearing loss affects them; their jobs, relationships, opportunities, etc. This invisible disability gets far less attention than it deserves. Why? Because people who start to lose hearing acuity tend to deny or hide it rather than talk about it. Statistics show that people who know their hearing is a problem wait an average of 7 years before seeking help. Meanwhile, everyone else knows the person isn't hearing well, and they get frustrated. Healthcare professionals in general do not have a lot of information about hearing loss and how it affects people. This is particularly true of adult onset hearing loss (AOHL). There are other more 'important issues' in the healthcare field to focus on. This is especially true when we don't let them know how 'important' hearing loss is. We can help ourselves by providing information and speaking up, Until we do, we can't expect things to change and hearing loss will continue to receive far less attention than it deserves. Please take time to fill out the IDA Institute's survey.

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I'm getting hyperbaric therapy. 1 ear is giving me pain. Must yawn, wiggle jaw, drink water then hold nose and blow out. must do it often. Now ear is really tender! When I do blow out I hear better. but! has anyone use Hydrogen peroxide ? (do not have much of a problem on a plane).

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@mari

I'm getting hyperbaric therapy. 1 ear is giving me pain. Must yawn, wiggle jaw, drink water then hold nose and blow out. must do it often. Now ear is really tender! When I do blow out I hear better. but! has anyone use Hydrogen peroxide ? (do not have much of a problem on a plane).

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@mari Is the pain a result of the hyperbaric therapy? If so, did they suggest you see an ENT to get a tube inserted through the eardrum to keep the pressure from building?
Tony in Michigan

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Yes Tony, pain a result of the hyperbaric therapy. They didn't suggest an ENT but, I will call one. They just kept telling me to yawn, wiggle jaw, drink water – blow out ear. Repeat over and over.

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@mari

Yes Tony, pain a result of the hyperbaric therapy. They didn't suggest an ENT but, I will call one. They just kept telling me to yawn, wiggle jaw, drink water – blow out ear. Repeat over and over.

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@mari, I am interested in how this turns out for you. Please keep us updated.
Tony in Michigan

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We are very happy to be able to share the final campaign materials with you. A warm thank you to all Mayo Connect members who provided us with valuable input and helped us refine the materials. You can see the campaign at idainstitute.com/pcc or read more about the background for the initiative in this article: https://idainstitute.com/what_we_do/news/detail_view/were_all_ears_translating_person_centered_care_for_everyone/. If you would like to help us spread the word about the value of person-centered care, follow us on Twitter at @idainstitute, facebook.com/idainstitute or linkedin.com/company/ida-institute

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Great work. I am eager to see the response to these materials.

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@tonyinmi

@mari, I am interested in how this turns out for you. Please keep us updated.
Tony in Michigan

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Tony. Just saw this. Hyperbaric oxygen is unbelievably great. I could almost watch my wound get smaller. I got weak from it but I’m thrilled to have the wound close up at a faster pace. Ear is ear back to normal. It was tender for awhile. Hope I see if anyone has questions.

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@mari

Tony. Just saw this. Hyperbaric oxygen is unbelievably great. I could almost watch my wound get smaller. I got weak from it but I’m thrilled to have the wound close up at a faster pace. Ear is ear back to normal. It was tender for awhile. Hope I see if anyone has questions.

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@mari Thanks for the feedback. I'm glad that this turned out to be a good experience. I was in disbelief when you said that they didn't recommend you see an ENT after experiencing ear pain during the treatments. The last thing a person with hearing loss wants is to risk losing more hearing.
Tony in Michigan

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