Health Care Pathways of Children with Sensorineural Hearing Loss and Autism Spectrum Disorder: A Descriptive Qualitative Study

Abstract

Background: Research has shown that sensorineural hearing loss (SNHL) is more common in children with autism spectrum disorder (ASD) than in those without ASD. Despite high rates of co-occurrence, children are often at risk for delayed diagnosis of one or both conditions. Additionally, literature regarding factors that influence parents’ care decisions is lacking. Purpose: The purpose of this study was to provide a qualitative analysis of the diagnostic and therapeutic care pathways experienced by parents of children with ASD and SNHL. Research Design: This study implemented a descriptive qualitative approach to describe participants’ experiences. Study Sample: Participants comprised 20 parents of children 12 months to 10 years of age who had been diagnosed with SNHL and ASD. Participants were older than 18 years of age, lived in the United States, spoke English, and had Internet access. The convenience sample was recruited nationally by social media posts, flyers, and institutional health research web page. Participants were compensated for their time. Data Collection and Analysis: Participants completed semi-structured interviews via Zoom. The transcripts were analyzed using MAXQDA 2024–2026 software (Verbi Software, Berlin, Germany) and coded by three research team members. Results: We identified five themes: lack of integration between the Deaf or Hard of Hearing and Autism worlds despite significant diagnostic interplay; quality of holistic care is impacted by providers’ limited knowledge of the dual diagnosis; disconnect between professional recommendations, perceived community support, and parental choice that overlooks the benefit of total communication; the critical role of multidisciplinary early intervention, including allied health, educational providers, and deaf mentors, improves personalized care and family support; and parents have to adopt the role of an advocate and care navigator to ensure they are making informed decisions. Conclusions: Our findings support the need for increased provider education to deliver family-centered health care for children with the dual diagnosis of ASD and SNHL. Creating tailored resources for providers and families should be considered to ensure evidence-based care and coordinated support. Clinical Relevance Statement: Children with ASD and SNHL face delayed and fragmented care. Providers need better dual-diagnosis training and coordinated pathways that support multidisciplinary early intervention, provide total communication options, and help families navigate informed decisions.