Department of Communicative Disorders and Deaf Education, Utah State University, Logan, Utah, USA.
Department of Communication, University of Washington, Seattle, Washington, USA.
Ear Hear. 2021 Sep/Oct;42(5):1284-1294. doi: 10.1097/AUD.0000000000001011.
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.
大多数在美国出生的患有听力损失(HL)的儿童的父母都有听力。其中许多父母最终为他们的孩子选择了人工耳蜗植入。目前已有数十年的研究表明,这些孩子的言语、语言、听力和教育似乎受益于人工耳蜗植入。然而,迄今为止,我们对指导这些孩子完成整个旅程的父母的经历知之甚少。我们提出,阐明这些父母所讲述的故事类型是理解他们不同经历的第一步,并有潜力最终改善儿童及其家庭的医疗保健结果。因此,为了更好地理解父母的经历,我们提出了以下研究问题:有听力的父母在抚养使用人工耳蜗的 HL 儿童时会讲述哪些类型的故事?
在这项前瞻性定性研究中,我们使用了叙述方法。具体来说,我们对 20 名听力正常的父母进行了叙述性访谈,这些父母正在抚养患有 HL 并使用人工耳蜗的年幼孩子(平均年龄= 5.4 岁)。然后,我们使用主题叙述分析来识别叙述中反复出现的主题,这些主题合并为父母讲述其经历的故事类型。
主题叙述分析揭示了五种故事类型:(1)个人成长故事,(2)积极主动的故事,(3)紧张和淹没的故事,(4)超然的故事和(5)坚持的故事。
在本研究中,父母的经历中出现了不同类型的故事,这些故事都有共同的事件——一个家庭的婴儿在出生时被发现患有意外的永久性 HL,家庭选择为孩子进行人工耳蜗植入,然后家庭将所述儿科人工耳蜗使用者抚养成年。尽管存在这些相似之处,但这些故事在意义建构方面也存在差异。一些父母讲述了一个积极的生活故事变得糟糕的故事,而另一些父母讲述了一个从生存故事变成茁壮成长故事的故事。这些发现特别为听力保健领域做出了贡献,为专业人士提供了通过他们分享的以孩子 HL 诊断和人工耳蜗植入决定为中心的故事类型来了解父母意义建构的洞察力。