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Help Researchers Understand Burnout in Adult Patients During the Diagnostic Odyssey

Publication date: 22 Jun 2024

Do you have a past or current experience of being undiagnosed? Did you experience feelings of burnout during the diagnostic odyssey, or are you experiencing it now? Researchers at the University of North Carolina at Greensboro are interviewing adults with a personal history of burnout during the diagnostic odyssey. See the link below if you are interested in participating!

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

A student researcher, Simone Hetherington, 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. 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 either 1) had genetic testing during your search for a diagnosis, 2) seen a geneticist or genetic counselor in the past, or 3) you must be scheduled to see one in the future. Caregivers and parents are ineligible to participate in this particular study.


Please click the link and complete the 10-minute survey to see if you are eligible:

There will be a drawing for a chance to receive one of two $10 gift cards for completing the survey.

Those who complete one-on-one interviews will receive additional financial compensation.

If you have any questions, comments, or concerns, please reach out to Simone and the research team at

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