A Qualitative Study of Treatment Experiences Among Youth With Misophonia and Their Parents

OBJECTIVE: Misophonia elicits strong negative emotional, behavioral, and physiological reactions to auditory stimuli. Despite its significant impact, misophonia remains underrecognized by health care providers. There is a lack of evidence-based treatment guidelines, creating challenges for affected individuals and their families in accessing appropriate care. The goal of this study was to examine the experiences of youth with misophonia and their caregivers in navigating the health care system and seeking treatment for the condition. MATERIALS AND METHODS: Twenty parent-child dyads participated in focused interviews concerning their experiences seeking treatment for misophonia. Thematic analysis was used to analyze interviews, involving 2 rounds of inductive abstractions. RESULTS: Several themes emerged, primarily reflecting negative experiences, including: "Minimal Awareness," "Few Knowledgeable Professionals," "Limited General Resources," "Lack of Standard Treatment," "Misdiagnosis," and "Lack of Official Misophonia Diagnosis." Participants described substantial emotional impacts from these experiences, including frequent descriptions of hopelessness, frustration, and defeat. The primary positive experience described was by families who experienced "Validation from Providers." CONCLUSIONS: The emotional burden associated with limited access to credible resources and knowledgeable professionals highlights the need for improved support. Families who were able to connect with empathetic providers reported considerable relief. The absence of a standardized treatment prompts individuals into a prolonged trial-and-error process in search of an approach that can provide even minimal relief from their symptoms.