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 prior to leaving the hospital. Since the initial newborn hearing screening mandates, there has been much outcome research documenting the successes and barriers of the program. However, little research has worked to identify and understand the parents’ experiences during this process. We propose that elucidating the parents’ experiences with newborn hearing loss screening and diagnosis 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 parents’ subjective experience, we asked the following research question: what are parents’ experiences with the early hearing loss screening and diagnosis of their infants in the United States? Design. The current study used a prospective, cross-sectional qualitative design utilizing semi-structured narrative interviews. Specifically, we used snowball sampling and recruited 13 hearing parents with a child with hearing loss born in the United States and diagnosed with hearing loss no later than 14 months of age between the years of 2016 to 2020. We used thematic analysis to uncover common themes across parent experiences. Saturation was reached at Interview #4, thus no further sampling was needed.Findings. Two major themes emerged from the data: (1) hearing healthcare experiences and (2) parents’ early experiences with their child’s HL. Subthemes were also uncovered. Three emergent subthemes related to healthcare 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: (1) parent-to-parent support, (2) “mom guilt”, and (3) a new reality.Conclusion. The present study’s subjective 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 across the country. Themes uncovered in these narratives support the need for a family-centered approach to the hearing screening and hearing loss diagnosis process in the United States. Action steps such as encouraging clinicians to create opportunities for parent-to-parent support for hearing parents affected by newborn hearing loss could move the field of pediatric hearing health care closer toward a family-centered approach. Specifically, such steps could address families’ concerns and expectations surrounding newborn hearing screening and hearing loss while simultaneously working toward the Joint Commission on Infant Hearing’s goals of the earliest hearing loss detection, diagnosis, and intervention for these infants.