Parent and Caregiver Perspectives: The Lived Experience of Raising a Child with Misophonia

Misophonia is a newly recognized disorder characterized primarily by negative multi-modal emotional responses (e.g., behavioral, attentional, somatic, interpersonal, and cognitive) to certain repetitive sounds and related stimuli, usually produced by other people. Previous research has found that adults with misophonia commonly report that it begins in childhood and can cause significant psychological distress and functional impairment at home, school, and/or work. However, little is known about the challenges and perspectives of those raising a child with misophonia. Therefore, the purpose of the current study was to investigate the impact of caring for a child with misophonia, specifically in a sample of caregivers reporting any financial strain. We surveyed adult caregivers of people with misophonia (N = 22) to collect both descriptive and qualitative information. Using guidelines for reflexive thematic analysis [5], several themes emerged: (1) Household Impacted, (2) Caregivers Impacted, (3) Financial Impact of Misophonia, and (4) Non-financial Barriers to Care. This study highlights some of the challenges parents experience and explores shortcomings in treatment, advocacy, and awareness to inform misophonia researchers and clinicians on how to best support families raising someone with misophonia.