Help researchers understand patient burnout searching for a diagnosis

Have you experienced feelings of burnout while searching for a diagnosis?

People often describe being a patient as a part-time or full-time job. Burnout is when this work leads to

  • exhaustion
  • frustration and cynicism
  • feeling that the effort you put in has little impact
  • apathy or detachment
  • dread

Working with Mayo Clinic, a student researcher, Simone Hetherington (smhethering@uncg.edu), at the University of North Carolina at Greensboro is studying burnout that patients experience as they seek a diagnosis. By interviewing people, the research team hopes to better understand real life experiences with burnout while searching for a diagnosis. They also plan to create a visual map of findings (called a conceptual model) with the help of participants in 2024.

Researchers want to hear about your current or past experiences of burnout during the search for a diagnosis.

Participation involves one-on-one interviews (60 to 120 minutes) online using Zoom or Microsoft Teams. You also have the option to join a focus group to create a visual map of findings (2.5 hours; option for virtual attendance).

To participate, you must have seen a geneticist or genetic counselor in the past, or you must be scheduled to see one in the future. Caregivers and parents are ineligible to participate in this particular study.

Interested?
Please click the link and complete the 10-minute survey to see if you are eligible:
https://uncg.qualtrics.com/jfe/form/SV_1U2UBr376oEoDsy

For people taking part in the interview, an honorarium will be provided as gratitude for your time.

Interested in more discussions like this? Go to the Men's Health Support Group.

There is regular life, on one side of the fence...with a general normal level of difficulties and challenges.

Then there is deeply impacted life, on the other side of the fence...with devastating illness and consumes your life completely.

from my point of view and experience, unless a person has jumped over to the deeper suffering side of the fence, it is pretty much impossible to really understand what us folk experience.

And I know this, having been on the healthy side of the fence, and meeting someone with powerfully disabling illness, and actually thinking she was just making stuff up.

But, when I got extremely ill, it was only then that I understood what exactly she was talking about.

Really, there is no real frame of reference that can lend insight.

Oh, maybe an analogy would be like trying to understand the nuances of 17th century French poetry, when you don't speak French, you don't write poetry, you have never studied poetry or the 17th century...and somehow you want to understand those nuances, in 20 minutes. Never gonna happen.

Those of us who are thrown into this mess...it often takes us several years to get a lay of the land. There is no way someone can come in...say, and read one book on the subject and have real insight. And if folks have a high IQ and assume that is enough to glean that understanding....they will really become susceptible to going WAY off course with their "understanding."

Maybe I will give a quick rough guess at what is really necessary. First of all, as far as info goes...oh, starting point is to read at least 5 books worth of professional material...and truly study them, as if you had to get an A in a college course on each book. A lot of study. Then, you really have to spend direct time with, oh, maybe, say...5 patients. And spend, oh...maybe 100 hours of direct interaction with each of them.

Less than that? Probably not going to really glean the nuances of what is going on.

You know, first of all, people who are sick, often won't tell you how bad it is...if only because they have years of experience with people absolutely not caring about them at all. So, we can be very guarded about what exactly we reveal to others. And that is just one dynamic of many.

Really....not an easy endeavor at all.

And, of course, no one is actually going to engage those 100 hours. I guess practitioners could TRY to throw away all their preconceived ideas...and just practice deep respect and deep listening to the patients. Instead of judging their words through the practitioner's own lens. I don't suspect than many practitioners would be willing to actually do that.

I used to counsel ex-offenders. Including guys who committed murder. If you calm your own ego and ideas down...and just really listen to those folks with great respect, you could slowly get to that person inside, under the criminal. It is not easy work. And I was only really able to do it for a couple of years.

Well, that is what I have...

I hope practitioners can be open to a new and different paradigm. Without that, I don't see how they will really understand chronic illness, long term illness and all the things we, out here, deal with.

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Thank you for your insights. I’m an 87 year old female who has COPD/asthma as well as vertebrae that have fractured, lumbar fusion surgery. I’ve experienced much of what you said. Seems impossible for someone who hasn’t experienced your medical issues to understand. It was nice hearing someone put words to it. Thanks again. X0

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I definitely have been burned out searching

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