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?
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.
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.
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.