Rural Family Perspectives and Experiences with Early Infant Hearing Detection and Intervention: A Qualitative Study

Infant hearing loss has the potential to cause significant communication impairment. Timely diagnosis and intervention is essential to preventing permanent deficits. Many infants from rural regions are delayed in diagnosis and treatment of hearing loss. The purpose of this study is to characterize the barriers in timely infant hearing healthcare for rural families following newborn newborn hearing screening (NHS) testing. Using stratified purposeful sampling, the study design involved semi-structured phone interviews with parents/guardians of children who failed NHS testing in the Appalachian region of Kentucky between 2012 and 2014 to describe their experiences with early hearing detection and intervention program. Thematic qualitative analysis was performed on interview transcripts to identify common recurring themes in content. 40 parents/guardians participated in the study and consisted primarily of mothers. Demographic data revealed limited educational levels of the participants and 70 % had state-funded insurance coverage. Participants reported barriers in timely infant hearing healthcare that included poor communication of hearing screening results, difficulty in obtaining outpatient testing, inconsistencies in healthcare information from primary care providers, lack of local resources, insurance-related healthcare delays, and conflict with family and work responsibilities. Most participants expressed a great desire to obtain timely hearing healthcare for their children and expressed a willingness to use resources such as telemedicine to obtain that care. There are multiple barriers to timely rural infant hearing healthcare. Minimizing misinformation and improving access to care are priorities to prevent delayed diagnosis and treatment of hearing loss.