- Oct 24, 2017
- 849
- Tinnitus Since
- 10/2017
- Cause of Tinnitus
- one-sided hearing loss (of unknown origin)
What are we really doing here?
Running a tinnitus support forum is – for us – a labor of love. We spend many hours of our free time keeping this show on the road because we believe and hope that it might benefit people.
Yet, it can also be dispiriting. We have to settle arguments when emotions run high. We have to reconcile ourselves to the fact that you really never can please everyone. And, perhaps most difficult to swallow, almost every clinician we've ever interacted with seems to believe that online forums are inherently harmful; they are – supposedly – black holes of doom and gloom that only make one feel worse. If that were really true, then all our hard work has been for nothing. This thought scares me sometimes.
But then, occasionally, something happens that makes it all worth it. A member will approach us saying how much Tinnitus Talk means to them and how being part of this community has made them feel better. Or we meet a clinician or researcher who believes in the power of online communities to affect positive change.
This is one of those moments.
Another study about the tinnitus experience, but maybe something new?
A research paper has been published that has been years in the works and that we were involved in from the very beginning. Not only are we co-authors, but the research outcomes shed a new light on the pertinence of web-based discussion forums like Tinnitus Talk. As it turns out, paying attention to what tinnitus sufferers discuss online can inform new research directions and patient-centered care. Who knew, right?!?
I strongly encourage you, if you have the patience, to read the full-text article attached to the bottom of this post. But here are some highlights for you:
We have of course known all of this for years, but some of these themes were literally never before recognized in scientific literature (can you imagine?). No doubt some of you will disagree with certain findings or conclusions of the article, and that's fine (and completely expected, as per the tinnitus diversity theme). But let's also take a moment to celebrate that, this time at least, the voices of tinnitus sufferers have been taken seriously.
A round of applause for...
@Markku spent hundreds of hours building and moderating the (separate from Tinnitus Talk) discussion forum that was used for this study, back in 2018. I'm so happy and proud to see these fruits of his labor.
@Steve (our Director at the time) helped with general planning and recording video tutorials for the discussion forum. Thank you, Steve, too!
We'd like to thank Professor Deborah Hall for leading this study, involving us from the beginning, and seeing it through to publication in a well-respected journal.
Running a tinnitus support forum is – for us – a labor of love. We spend many hours of our free time keeping this show on the road because we believe and hope that it might benefit people.
Yet, it can also be dispiriting. We have to settle arguments when emotions run high. We have to reconcile ourselves to the fact that you really never can please everyone. And, perhaps most difficult to swallow, almost every clinician we've ever interacted with seems to believe that online forums are inherently harmful; they are – supposedly – black holes of doom and gloom that only make one feel worse. If that were really true, then all our hard work has been for nothing. This thought scares me sometimes.
But then, occasionally, something happens that makes it all worth it. A member will approach us saying how much Tinnitus Talk means to them and how being part of this community has made them feel better. Or we meet a clinician or researcher who believes in the power of online communities to affect positive change.
This is one of those moments.
Another study about the tinnitus experience, but maybe something new?
A research paper has been published that has been years in the works and that we were involved in from the very beginning. Not only are we co-authors, but the research outcomes shed a new light on the pertinence of web-based discussion forums like Tinnitus Talk. As it turns out, paying attention to what tinnitus sufferers discuss online can inform new research directions and patient-centered care. Who knew, right?!?
I strongly encourage you, if you have the patience, to read the full-text article attached to the bottom of this post. But here are some highlights for you:
"Overall, five major themes emerged from the discussion threads relating to the lived experience of tinnitus: one highlighting the diversity of tinnitus experiences from one person to the next, one recognizing the severity of complaints for the unfortunate few, one emphasizing the short-term fluctuations in tinnitus experience day to day, one about life's long-term journey in living with tinnitus, and the final one about feeling misunderstood by others without tinnitus."
"Suffering emphasizes intense distress. Usage of the word in the academic literature is not so widespread, perhaps because it is highly emotive language. And yet in the discussion forum many of the participants referred to "tinnitus sufferers" and "suffering.""
"[…] identified patient-centered interaction and patient empowerment as the two most important overarching factors which contribute to the success of counseling. We suggest that these might be the defining features of the web discussion forum which contribute to the therapeutic benefit of participation expressed by some of our discussants."
"While some of these results described are already well-recognized, the concepts of frustration and suffering are less widely discussed in the literature and yet were highly prominent in all five discussion threads."
"Suffering emphasizes intense distress. Usage of the word in the academic literature is not so widespread, perhaps because it is highly emotive language. And yet in the discussion forum many of the participants referred to "tinnitus sufferers" and "suffering.""
"[…] identified patient-centered interaction and patient empowerment as the two most important overarching factors which contribute to the success of counseling. We suggest that these might be the defining features of the web discussion forum which contribute to the therapeutic benefit of participation expressed by some of our discussants."
"While some of these results described are already well-recognized, the concepts of frustration and suffering are less widely discussed in the literature and yet were highly prominent in all five discussion threads."
We have of course known all of this for years, but some of these themes were literally never before recognized in scientific literature (can you imagine?). No doubt some of you will disagree with certain findings or conclusions of the article, and that's fine (and completely expected, as per the tinnitus diversity theme). But let's also take a moment to celebrate that, this time at least, the voices of tinnitus sufferers have been taken seriously.
A round of applause for...
@Markku spent hundreds of hours building and moderating the (separate from Tinnitus Talk) discussion forum that was used for this study, back in 2018. I'm so happy and proud to see these fruits of his labor.
@Steve (our Director at the time) helped with general planning and recording video tutorials for the discussion forum. Thank you, Steve, too!
We'd like to thank Professor Deborah Hall for leading this study, involving us from the beginning, and seeing it through to publication in a well-respected journal.