RESUMEN
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.
Asunto(s)
Sordera , Pérdida Auditiva , Niño , Humanos , Recién Nacido , Lactante , Estados Unidos , Estudios Transversales , Estudios Prospectivos , Pérdida Auditiva/diagnóstico , PadresRESUMEN
OBJECTIVES: The majority of children born in the United States with hearing loss (HL) are born to parents with hearing. Many of these parents ultimately choose cochlear implantation for their children. There are now decades of research showing which these children's speech, language, listening, and education seem to benefit from cochlear implantation. To date, however, we know little about the experiences of the parents who guided these children throughout their journeys. We propose that elucidating the types of stories these parents tell is a first step toward understanding their varied experiences and has the potential to ultimately improve healthcare outcomes for both children and their families. Thus, to better understand parents' experience, we asked the following research question: what types of stories do parents with hearing tell about rearing their children with HL who use cochlear implants? DESIGN: In this prospective qualitative study, we used a narrative approach. Specifically, we conducted narrative interviews with 20 hearing parents who are rearing young children (mean age = 5.4 years) born with HL who use cochlear implants. We then used thematic narrative analysis to identify recurring themes throughout the narratives that coalesced into the types of stories parents told about their experiences. FINDINGS: Thematic narrative analysis revealed five story types: (1) stories of personal growth, (2) proactive stories, (3) stories of strain and inundation, (4) detached stories, and (5) stories of persistence. CONCLUSIONS: In the present study, different types of stories emerged from parents' experiences that share common events-a family's baby is identified at birth with unexpected permanent HL, the family chooses to pursue cochlear implantation for their child, and then the family raises said pediatric cochlear implant user into adulthood. Despite these similarities, the stories also varied in their sensemaking. Some parents told stories in which a positive life narrative turned bad, whereas others told stories in which a narrative of surviving turned into one of thriving. These findings specifically contribute to the field of hearing healthcare by providing professionals with insight into parents' sensemaking via the types of stories they shared centered on their perceptions and experiences following their child's diagnosis of HL and their decision to pursue cochlear implantation.