Understanding and Improving Pediatric Hearing Care Navigation: A Human-Centered Design Approach.

Abstract

Objective: Explore the experiences of stakeholders within hearing care pathways using a human-centered design process to design a patient navigator (PN) to improve hearing health equity for deaf or hard-of-hearing children.

Study design: A qualitative, prospective, observational study utilizing the Empathize, Define, and Ideate phases of Human-Centered Design.

Setting: Academic tertiary children's hospital with interviews over Zoom.

Methods: We interviewed 12 hearing care providers, diverse in role and education across the United States, and 10 parents of deaf or hard-of-hearing children, diverse in preferred language and delays in care (mean age at diagnosis of 4.7 months, mean age at intervention of 10.5 months). The main outcomes were themes and subsequent insights that arose from the thematic analysis of interviews, which were used within a design synthesis session.

Results: Qualitative analysis revealed 3 themes: Intrinsic Barriers, Extrinsic Barriers, and Areas of Opportunity. Within Intrinsic Barriers, a majority of providers and parents described a grieving process that led to delays. Within Extrinsic Barriers, interviewees expressed challenges navigating multiple deaf or hard-of-hearing care pathways. Within Areas of Opportunity, providers and parents agreed on connecting parents of new hearing loss diagnoses with mentor families to improve the care-seeking experience. Intercoder reliability was achieved (Cohen's κ = 0.73). Findings from the qualitative analysis were incorporated in a synthesis session with diverse stakeholders to design a PN role.

Conclusion: Providers and parents agree that the deaf or hard-of-hearing care pathway is difficult to navigate at baseline with delays in accessing care further exacerbated by barriers intrinsic to the family unit.