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Dr. Zachary Rosenthal’s team at the Center for Misophonia and Emotion Regulation at Duke University documented the lived experience perspective, spotlighting that caring for someone with misophonia can create challenges that extend beyond the individual, affecting the household, caregivers, finances, and access to care.

In a survey of 22 adult caregivers of people with misophonia, researchers explored core needs (e.g., housing, food, transportation, and personal safety), financial strain, family accommodations and support, and experiences navigating the diagnostic process and applying intervention strategies. The survey identified many shared experiences among caregivers, including multiple household members with sound sensitivity challenges, co-occurring disorders (e.g., anxiety, depression, ADHD/ADD), half seeking professional support and the majority seeing more than one provider, low treatment satisfaction, limited access to professional support, stigma, and limited awareness.

Overall, this study highlights how many of the challenges experienced by caregivers are linked to broader gaps in treatment options, advocacy, and awareness. Studies that evaluate the lived experiences of the misophonia community can help guide experts toward areas where advances may have the greatest impact on the daily lives of affected individuals and their families, particularly as efforts to develop effective interventions continue.

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Research Paper Title: Parent and Caregiver Perspectives: The Lived Experience of Raising a Child with Misophonia.

‍Authors: Kelly A. Molthrop, Emily C. Gates, Andrew G. Guzick, Marta Siepsiak, and M. Zachary Rosenthal

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ABOUT THE RESEARCH TEAM

Zachary Rosenthal, PhD is on the MRF Scientific Advisory Board and is the Director of the Duke University Center for Misophonia and Emotion Regulation (CMER).  CMER is the first center of excellence for misophonia research, contributing a wide range of research discoveries that are helping to shape best practices around diagnosis and treatment of misophonia.

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