Exploring the Stories of Parents' Experiences With Infant Hearing-Loss Screening and Diagnosis in the United States

Abstract

Objectives: For the past 20 years, birthing hospitals in the United States have required newborns to undergo a hearing-loss screening before leaving the hospital. Since the initial newborn hearing screening mandates, there has been much outcome research documenting the successes and barriers of the programs. However, we know little about the experiences of their parents during the time between screening and diagnosis. We propose that elucidating the parents' experiences with newborn hearing-loss screening and diagnosis-via their own stories-is a first step toward understanding their varied experiences and has the potential to ultimately improve hearing healthcare for both children and their families. Thus, to better understand the early hearing screening and detection experience from hearing parents' perspectives, we asked the following research question: what are parents' experiences with their newborns' hearing-loss screening and diagnosis in the United States?

Design: The present study employed a prospective, cross-sectional qualitative design. Specifically, we gathered stories from 13 hearing parents who each have a child born in the United States and diagnosed with hearing loss no later than 14 mo of age between the years of 2016 and 2020. We used thematic analysis to uncover common themes across parent narratives. Saturation was reached at interview no. 4; thus no further sampling was needed.

Findings: Two major themes emerged from the data: (1) hearing healthcare experiences and (2) parents' early experiences during the period between their child's newborn hearing-loss screening and diagnosis. Subthemes were also uncovered. Three emergent subthemes related to health-care experiences included: (1) downplayed newborn hearing screening referrals, (2) clinician-centered care, and (3) medical expenses and health coverage. The three subthemes of the second theme were as follows: (1) parent-to-parent support, (2) "mom guilt," and (3) a new reality.

Conclusion: The present study's narrative accounts from parents about their infants' early hearing detection experiences revealed several, different subthemes that emerged from the same, mandated newborn experience in US families. These findings highlight important moments throughout the hearing-loss screening and detection process, which could benefit from more effective, family-centered hearing healthcare. This knowledge also facilitates the field's move toward improved education of future and current providers and regarding family-centered approach, which could address concerns and expectations of new parents at the very start of their newborns' hearing-loss journeys.