Properties (17)
Id 95375525-fc49-4f12-94ac-6cfe9aaf02e2
Year 2026
Abstract 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.
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- purpleRed
Aliases
- Parent and Caregiver Perspectives
- (Molthrop et al., 2026)
Import Date 04-29-2026
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Dv Authors Kelly A. Molthrop, Emily C. Gates, Andrew G. Guzick, Marta Siepsiak, M. Zachary Rosenthal,
Dv Initial Source Misophonia MOC
Dv Status #status/Bare-bones-review
Dv Limitations • No direct reports from individuals with misophonia or other stakeholders. • Child sample largely adults. • Anonymous self-report; caregiver status unverified. • Accommodation attribution to misophonia vs. comorbidities unclear. • Limited high financial strain; many high-income households. • Brief FSI may underrepresent financial burden. • Recruitment bias toward informed, educated families. • Homogeneous sample; demographic differences not examined. • Visual/sensory triggers not assessed. • Misophonia–autism sensory relationship not examined.
Dv Future Directions • Include perspectives of youth, siblings, teachers, and peers. • Target families with children currently living at home. • Verify caregiver status; isolate misophonia-specific accommodations. • Recruit lower-income and less-informed populations. • Use more comprehensive financial strain measures. • Increase demographic diversity across race, ethnicity, gender, sexuality, SES. • Assess misokinesia and broader sensory sensitivities. • Examine overlap with autism-related sensory sensitivity. • Test effects of diagnostic labeling on caregiver perceptions, blame, prognosis, and accommodation behavior.
Dv Relevance • a thematic analysis of survey data looking into the lived experiences of raising someone with Misophonia from the perspective of caregivers. • found 3 major themes that was discussed in depth: household impact, caregiver impact, financial impact, non-financial barriers to care • found a previously undiscussed financial aspect to dealing with Misophonia • a good source for looking at how Misophonia impacts the family from the caregivers perspective, along with misc. comorbidity stuff and evidence of a role of familial histories of sound sensitivities.
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Parent and Caregiver Perspectives: The Lived Experience of Raising a Child with Misophonia
Status:: #status/Bare-bones-review
Metadata
- Item Type: #journalArticle
- Authors:: Kelly A. Molthrop, Emily C. Gates, Andrew G. Guzick, Marta Siepsiak, M. Zachary Rosenthal,
- Date:
- Date Added: 1777086712000
- URL: https://link.springer.com/10.1007/s10578-026-02013-7
- DOI: 10.1007/s10578-026-02013-7
- Cite Key: molthropParentCaregiverPerspectives2026
- Topics: [object Object]
- Tags:: #Misophonia, #Bare-bones-review-🦴, #Misophonia-supplemental, #descriptive, #qualatative, #lived-experiences, #reflexive-thematic-analysis,
- PDF Attachments
Abstract
| Background/Purpose | Background- • Misophonia begins in childhood; associated with distress, impairment, and comorbid conditions. • Children show increased anxiety, OCD traits, lower quality of life, and family disruption. • Families frequently modify routines; treatment options lack standardization and satisfaction. • Limited research on caregiver experiences and financial strain context. • Higher child misophonia severity associated with higher family accommodation efforts. • Misophonia not recognized by insurance; out-of-pocket costs and travel common. • Gap: little known about role of family financial strain in caregiver lived experiences. Purpose- • Provide exploratory analysis of caregiver experiences of raising someone with misophonia. • Situate experiences within the broader context of financial strain and access to care. |
| Participants/samples | • N=22 caregivers with financial strain; U.S.; adults ≥18; parents/guardians. • Majority female, White, non-Hispanic; two-parent households. • Children mean age ~18; onset ~9 years. • Recruited via Duke CMER website, social media, and prior CMER study email lists; second wave specifically targeting financial strain. • Anonymous online REDCap survey; identity not independently verified; no compensation. |
| Measures | • Social Needs Screening Tool (SNST; AAFP) – 14 items assessing housing, food, transportation, utilities, personal safety. • Financial Strain Index (FSI) – 5-item scale assessing inability to meet financial needs beyond income. • Family Accommodation Scale for Misophonia (FASA, modified from FAS-Anxiety) – 13 items; 9-item accommodation subscale, 4-item household distress subscale. • Diagnosis & Intervention Experiences questionnaire – child diagnoses, services used, treatment satisfaction (5-point Likert), ranking of 5 barriers to care. • Five open-ended qualitative items on household impact, caregiver impact, socioeconomic factors, and barriers. |
| Procedures | • Online survey via Duke REDCap. • Quantitative descriptives via IBM SPSS. • Qualitative responses (~15 single-spaced pages) analyzed via Braun & Clarke reflexive thematic analysis. • Six-step process: familiarization, code generation, theme construction, theme review, definition/naming, report production. • Inductive ("bottom-up") approach; experiential orientation; coding shifted from semantic to latent across iterations. • Reflexivity established via team discussion of assumptions prior to analysis. |
| Results | Descriptive findings • Family history of sound sensitivity common (~half). (pdf) • Comorbidity: anxiety most frequent; depression, ADHD, ASD, OCD, hyperacusis also reported. • Multi-provider care typical; audiologists most common, then therapists and occupational therapists. • Treatment satisfaction low. • Most common interventions tried: home rearrangement, modified event planning, active noise cancelling. • Most highly ranked barrier: provider shortage/access; followed by stigma, lack of awareness, financial burden, insurance. • FSI scores indicated overall low-to-moderate financial strain; financial strain occurred across income brackets including some higher-income households. • FASA accommodation subscale indicated relatively high frequency of parental accommodation. Qualitative themes Theme 1: Household Impacted • 1a. Mealtimes Impacted – families often unable to eat together; coping via headphones or separate rooms. • 1b. Family Members' Actions Trigger the Child's Misophonia – parents, siblings, pets as trigger sources; strain on relationships. • 1c. Strained, Tense Atmosphere – heightened vigilance, anticipatory anxiety in child. • 1d. Isolation from Family Events and Social Events – child withdraws from shared spaces and activities. Theme 2: Caregivers Impacted • 2a. Emotional Effect on Caregivers – stress, grief, depression, failure, depletion, guilt, shame, worry, anxiety, frustration, loss. • 2b. Sustained Caregiver Sacrifice – modified routines, mediating between child and others, splitting parental attention across children. • 2c. Positive Impact – validation/relief from shared diagnosis; increased flexibility. Theme 3: Financial Impact of Misophonia • Treatment and accommodation costs as major family expenses. • Insufficient resources limit treatment frequency and home modifications. • Inadequate insurance coverage cited. • Lost work time from caregiving and travel to providers. Theme 4: Non-Financial Barriers to Care • 4a. Lack of Effective Intervention, Treatment Accessibility, & Provider Awareness – difficulty locating misophonia-aware providers; existing strategies provide coping but not solutions; some accommodations may be harmful long-term (isolation). • 4b. Lack of Family Awareness – unawareness of misophonia as a disorder shaped early caregiving responses. |
| Discussion/Limits | Conclusion- • Caregivers report mixed emotional responses to child’s misophonia. • High parental accommodation through environmental modification; consistent with prior work. • Children cope via avoidance of interpersonal contexts. • Triggers from family members strain relationships. • Family functioning broadly impacted; parallels ADHD/ASD caregiver experiences. • Financial impact identified as a novel theme in misophonia literature. • Low treatment satisfaction replicated. • Caregivers frequently shift strategies to manage symptoms. • Familial sound sensitivity suggests possible environmental/biological transmission. • Need for increased provider knowledge and stigma reduction through education. |
| Limitations:: | • No direct reports from individuals with misophonia or other stakeholders. • Child sample largely adults. • Anonymous self-report; caregiver status unverified. • Accommodation attribution to misophonia vs. comorbidities unclear. • Limited high financial strain; many high-income households. • Brief FSI may underrepresent financial burden. • Recruitment bias toward informed, educated families. • Homogeneous sample; demographic differences not examined. • Visual/sensory triggers not assessed. • Misophonia–autism sensory relationship not examined. |
| Future Directions:: | • Include perspectives of youth, siblings, teachers, and peers. • Target families with children currently living at home. • Verify caregiver status; isolate misophonia-specific accommodations. • Recruit lower-income and less-informed populations. • Use more comprehensive financial strain measures. • Increase demographic diversity across race, ethnicity, gender, sexuality, SES. • Assess misokinesia and broader sensory sensitivities. • Examine overlap with autism-related sensory sensitivity. • Test effects of diagnostic labeling on caregiver perceptions, blame, prognosis, and accommodation behavior. |
| Relevance:: | • a thematic analysis of survey data looking into the lived experiences of raising someone with Misophonia from the perspective of caregivers. • found 3 major themes that was discussed in depth: household impact, caregiver impact, financial impact, non-financial barriers to care • found a previously undiscussed financial aspect to dealing with Misophonia • a good source for looking at how Misophonia impacts the family from the caregivers perspective, along with misc. comorbidity stuff and evidence of a role of familial histories of sound sensitivities. |
Notes
key terms and concepts
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misophonia – disorder characterized by decreased tolerance to specific sounds and related stimuli ("triggers"), leading to significant psychological distress and impairment in daily functioning.
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BASIC framework – acronym organizing common responses to auditory triggers: behavioral, attentional, somatic hyperarousal, interpersonal, and cognitive symptoms.
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financial strain – anxiety, worry, or feelings of not coping created by economic or financial events; reflects capacity to meet expenses with available resources, not equivalent to household income.
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family accommodation – modifications made within the home or daily routines to help the individual avoid or cope with trigger sounds.
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treatment – formal clinical interventions aimed at reducing misophonia symptoms.
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interventions – umbrella term encompassing both treatment and accommodation.
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reflexive thematic analysis – systematic qualitative process involving coding themes to explore participants' perspectives, where themes are produced at the intersection of researcher's theoretical assumptions, analytic resources, and the data themselves.
my engagement notes
my questions
my comments
Bookmarks
- Importance of Lived Experience Research (page 2)
reading notes
family accommodation framing
- Authors raise multiple non-mutually-exclusive hypotheses for the accommodation–distress relationship: helpful response, unintentional reinforcement of avoidance/escape, transactional, contextual, sociocultural, non-linear.
- Explicit ethical framing: characterizing caregiver burden does not imply blaming children with misophonia.
definitional clarifications
- Authors distinguish "treatment" (formal clinical) from "accommodations" (home/routine changes), with "interventions" as umbrella term.
- Financial strain explicitly decoupled from household income.
contextual statement
In a 2026 study, Molthrop attempted to characterize the lived experiences of caregivers raising a child with misophonia within the context of financial strain by surveying 22 US adult caregivers (mean age 53.73; 90.9% female; 95.5% White) via an anonymous online REDCap survey using the SNST, FSI, modified FASA, intervention/barrier ratings, and five open-ended qualitative items analyzed with Braun & Clarke reflexive thematic analysis.
summary statement
In a 2026 study, Molthrop provided an exploratory analysis of caregiver experiences raising a child with misophonia and situated these within financial strain and access to care by surveying 22 US caregivers with descriptive measures (SNST, FSI, modified FASA, intervention/barrier rankings) and five open-ended items analyzed via reflexive thematic analysis. They found four themes: Household Impacted, Caregivers Impacted, Financial Impact of Misophonia, and Non-financial Barriers to Care . they also found high parental accommodation frequency, very low treatment satisfaction, predominant identification of provider shortages and stigma as barriers, and financial strain occurring across income brackets. From this they concluded that caregivers experience substantial emotional, interpersonal, and financial impact, that the Financial Impact theme is novel in the misophonia literature, and that greater advocacy, provider awareness, and accessible/affordable misophonia-specific interventions are needed.
zettlekasten
4 themes to experience of caregivers of Misophonics
major barriers to care in Misophonia
novel finding of financial impact of Misophonia and its implications
Molthrop 2026 findings on Misophonia comorbidities
common approaches to care giving and typical care providers in Misophonia