Parental Experiences With Access to Care for Obstructive Sleep-Disordered Breathing: A Qualitative Study.

Abstract

Despite evidence-based guidelines for obstructive sleep-disordered breathing (SDB), recent studies continue to highlight treatment inequities. We used qualitative research methods to examine parental facilitators and barriers to SDB treatment. Qualitative interviews. Tertiary care center. Semistructured interviews were conducted (January-April 2022) with parents of children with SDB who underwent tonsillectomies to understand the processes of SDB detection and accessing specialty care. Interviews were conducted until thematic saturation was reached and coded using NVivo software. Of the 17 parents who completed the key informant interviews, 6 (35%) were of non-Hispanic black race, and 3 (17.6%) interviews were conducted in Spanish. Parents noted that the more knowledge their primary care provider (PCP) had about SDB, the easier it was to obtain a diagnostic workup (41%). The most common barrier included difficulty obtaining a specialist (otolaryngology or sleep medicine) referral from their PCP and encountering providers who were dismissive of parent-reported symptoms related to SDB, leading them to seek a second opinion or self-refer (53%). Medicaid coverage was a strong facilitator to receipt of care (59%). Three (17.6%) parents noted alienation in the process due to racial bias or language barriers. Parental interviews revealed that facilitators of SDB treatment included high clinician knowledge and perceived importance of SDB as well as Medicaid insurance which decreased financial strain. Parents also cited the attainment of referrals as a significant barrier to obtaining specialty evaluation. These findings identify potential modifiable areas to tailor future interventions for timely and equitable SDB care.