Exploring the Identities of Hearing Parents who Chose Cochlear Implantation for their Children with Hearing Loss

Exploring the Identities of Hearing Parents who Chose Cochlear Implantation for their Children... Abstract We aimed to determine the types of identities hearing parents construct when telling online stories about their children with hearing loss (HL) who use cochlear implants (CIs). To do so, we employed a qualitative design and sampled 20 different blogs United States origins and written by parents of children who use CIs. We then used thematic narrative analysis (Braun & Clarke, 2006; Riessman, C. K. (2008). Narrative methods for the human sciences. Thousand Oaks, CA: Sage Publications.) to uncover recurring themes from these parents’ blogs. The themes then allowed us to assign identities to the parents. Four identities emerged in the parents’ stories: (1) advocates, (2) resilient parents, (3) obedient worriers, and (4) matter-of-fact narrators. Identifying and understanding these parent identities is a first step toward improving theoretical and clinical insights into parents’ perspectives and experiences following their children’s diagnosis of HL. Such insights could ultimately improve audiologists’ abilities to help families seek out, implement, and follow-through with family-centered hearing healthcare. The United States Department of Health reports that, as of December 2012, cochlear implantation is the intervention of choice for the parents of 38,000 children with hearing loss (HL). Notably, the majority of these children undergoing cochlear implantation are born to hearing parents (Mitchell & Karchmer, 2004). These parents rarely have prior experience with HL making their transition to parenthood traumatic, stressful, and full of challenges (Hardonk et al., 2011; Pipp-Siegel, Sedey, & Yoshinaga-Itano, 2002). Research suggests that most parents of children with HL experience a myriad of negative emotions (e.g., denial, shock, and frustration) pertaining to the diagnosis and treatment of their children (Russ et al., 2004). To compound experiences of uncertainty and stress, Pallier (2007) observed that parents have to also make countless choices about communication modalities, listening technology, and education. Simultaneously, parents must readjust their own expectations and work toward constructing their unique identities as hearing parents who have children with HL (Young, 2010). Faced with having to make sense of their experiences and figure out who they are, parents often turn to the Internet to both learn about healthcare information and share their experiences (Muñoz, Nelson, & Barker, 2016; Rice, 2006). One method parents utilize to share their experiences is web logging (more commonly known as blogging). Parent blogs are excellent sources of unsolicited narratives that allow parents to tell their stories without fear of in-person judgment while speaking to salient aspects of their identity that are particularly meaningful to them (Langellier & Peterson, 2004; Thomas, Scharp, & Paxman, 2014). However, blog posts often go unanalyzed. Existing research in mainstream medical literature privileges quantitative approaches, particularly randomized control trials, without recognizing that many aspects of providing family-centered healthcare are difficult to study using experimental design (Dixon-Woods & Fitzpatrick, 2001; Russ, et al., 2004). Yet, qualitative research can significantly enrich our knowledge of healthcare, especially in the context of HL (Russ et al.). For example, Westby and Culatta (2016) argue that understanding personal narratives (such as those found on blogs) not only fits well within the American Speech-Language-Hearing Association’s Scope of Practice for both Speech-Language Pathologists (2016) and Audiologists (2004), but also can aid clinicians in developing successful interventions for families and individuals faced with communication and swallowing conditions. Because many parents of children with HL experience major disruptions to their identities, it is important to understand how the families are making sense of themselves and their experiences. Understanding these identities are important considering who a parent believes themselves to be and has implications for how they care for their children as well as their own personal well being (McAdams, 2006; Westby and Culatta, 2016). Furthermore, we propose that understanding parent identities is a first step toward developing effective family-centered hearing healthcare and intervention to support the parents of children with HL. Thus, it was the aim of this study to determine the identity types constructed in individuals’ stories (via blogs) about their experiences parenting children who use CIs. Identity Complications for Parents of Children with Hearing Loss Relational turbulence theory (Solomon, Knobloch, Theiss, & McLaren, 2016) suggests that when partners go through a significant transition—such as their newborn being diagnosed with HL—they experience decreased relational satisfaction, decreased perceived partner support, and increased relational uncertainty. Uncertainty, as Brashers (2001) describes, occurs “when details of situations are ambiguous, complex, unpredictable, or probabilistic; when information is unavailable or inconsistent; and when people feel insecure about their own state of knowledge or the state of knowledge in general” (pg. 478). Virtually anything can be the source of uncertainty (Berger & Bradac, 1982). Many parents of children with HL experience immense uncertainty surrounding diagnosis, intervention, and their own identities (Flaherty, 2015). This uncertainty is problematic given previous research exploring the affects of chronic illness in children (Kerr & Haas, 2014) showing that the negative outcomes (increased fear, stress, and feeling of helplessness) are associated with this type of uncertainty. Unfortunately, hearing parents’ uncertainty about their children with HL is likely exacerbated by the experience of ambiguous loss. Ambiguous loss Individuals experience ambiguous loss as either a physical absence with psychological presence or psychological absence with physical presence (Boss, 2007). Conceptualized primarily as a family problem, Boss (1999) explains that individuals experiencing ambiguous loss often feel incompetent because the loss erodes an individual’s sense of mastery and destroys their belief in the world as a fair, orderly and manageable place. The family’s identity becomes confused (Boss, 2006). This expectation violation might induce even more uncertainty for hearing parents of deaf or hard-of-hearing children because they have likely not had personal experiences with HL. To date, researchers have applied this ambiguous loss framework to a variety of topics. Perhaps most closely aligned with the present study is the work by Golish and Powell (2003). Their study elucidated the grief parents experience when their children are born prematurely but also the complexities of not being able to grieve entirely because their children are still alive. To make sense of their experience parents must negotiate a myriad of contradictions such as acknowledgment/denial, control/helplessness, certainty/uncertainty, and openness/closedness. Golish and Powell argued that having to manage these contradictory experiences causes many parents overwhelming amounts of stress, draining them both physically and emotionally. Overall, their study concluded that parents want others to acknowledge the loss of the dream birth experience as well as to equally consider their child’s health and future. In other words, parents wanted their social network members to acknowledge the emotional stress associated with having a premature baby but also wanted them to show concern for the health and well being of their child and their future. Parental stigma Thus, it might come as no surprise that hearing parents of newborns identified with HL experience grief, loss, and the negative emotions that covary with ambiguous loss (Hardonk et al., 2011). Although their child is physically alive, parents are forced to make sense of raising a child with an unanticipated disability. Sensemaking is important not only because hearing parents are uncertain but also because of the stigma often associated with disabilities, like HL. Even though parents are not experiencing the HL themselves, research suggests that the stigma surrounding disability often extends to family members and has a profound effect on their experiences, decisions, and how they self-identify (Bos, Pryor, Reeder, & Stutterheim, 2013; Fitzpatrick, Angus, Durieux-Smith, Graham, & Coyle, 2008). Discourse dependent families In addition to the costs of associated stigma, families with members who are differently abled are considered discourse dependent (Hays & Colaner, 2016). According to Galvin (2014), discourse dependent families require more communication to construct their identities not only within the family but also to construct an identity to the outside world because their family deviates from the cultural norm (i.e., family members who are able-bodied). They must engage in discussions that bind the family together, tell stories about the family’s identity, explain their situations so others can understand, and justify their relationship against attacks. Discourse dependent families are often considered “second best”, making it even more important that the members construct a unified family identity in face of the uncertainty, stigma, and ambiguous loss. (See Baxter, Norwood, Asbury, & Scharp (2014) for an example of the “second best” appraisal in the context of family estrangement.) An Interpretive Narrative Approach One way families make sense of and construct a shared identity is through telling stories or narrative sensemaking (Galvin, 2014; Koenig Kellas, 2014; Scharp & Beck, 2017). Herman (2009) defines a narrative (or a story) as “a basic human strategy for coming to terms with time, process, and change”. Research shows that telling stories, especially in discourse dependent families, influence the family member’s well being, self-esteem, and overall self-concept (Kranstuber & Koenig Kellas, 2011; McAdams, 2006). In parallel, Boss (2006) argues that when trying to regain a sense of identity after ambiguous loss, family members should use narrative means to make meaning of their relational experience after trauma and loss. As Westby & Culatta (2016) observe, constructing a coherent identity can help individuals evolve into informed decision makers and problem solvers while simultaneously taking control and responsibility for their lives. Put simply, understanding identity construction has important practical implications for a person’s health and ability to thrive. Although there are many ways to study narratives, we frame the present study in an interpretive narrative approach (Koenig Kellas, 2014). An interpretive narrative approach positions stories ontologically, emphasizing the way narratives constitute identity in contextualized settings as opposed to only seeing the narrative as a representation of a stabilized self (Bamberg & Georgakopoulou, 2008). Thus, narratives do the work of simultaneously reflecting and constructing a person’s identity. In this regard, stories can create, repair, or even destroy identities all the while negotiating personal agency (Nelson, 2001). Often, understanding narrative identities are important after major disruptions like losing a job (Pederson, 2013), facing stigma as in the case of Muslim women (Scranton, 2015), or experiencing a chronically uncertain childhood as in the case of former foster children (Thomas, 2014). This is not surprising as narratives have the power to create logic out of complex events and help individuals make sense of their lives (Becker, 1997; Koenig Kellas, 2014). Because of the uncertainty, ambiguous loss, and stigma that disrupt the identities of hearing parents who have children with HL and the power of stories to reflect and construct identities, we pose the following research question: What types of identities do hearing parents construct when telling online stories about their children’s HL identification and intervention (i.e., cochlear implantation)? Methods Importance of Unsolicited Narratives and Data Collection Narrative is not only seen as a way of being (i.e., ontologically), but narratives are also seen as a form of data (i.e., epistemologically; Koenig Kellas, 2014). Similar to other narrative scholars, we selected online accounts (i.e., blogs) to better understand parents’ identities in unsolicited narratives (Pederson, 2013; Scranton, 2015; Thomas, 2014). Recall, unsolicited narratives allow parents to (1) tell their story their way without fear of in-person judgment and (2) speak to salient aspects of their identity that are particularly meaningful to them (Langellier & Peterson, 2004; Thomas et al. 2014). Indeed, Langellier and Peterson argue that when people share their accounts online, they likely only share what is important to them given the time and energy they expend telling their story without prompting. Thomas and her colleagues (2014) go on to explain, “Unsolicited talk (e.g., online texts) offers unique opportunity…The absence of a specific audience encourages narrators to provide an unadulterated account of their experience, rather than tailor their story to specific individuals” (p. 375). Perhaps most importantly, collecting unsolicited talk aligns with Boss (2006) claim that when coping with ambiguous loss, stories that are not told voluntarily—such as those elicited from a script—will increase feelings of helplessness. With this in mind, we argue that even though there are limitations to collecting online narratives (see Discussion), the possibility of harming participants and the benefits of unsolicited talk guided our decision to look at parents’ blogs. Procedure Blog selection Phase I With IRB exemption, the fourth author and an assistant jointly conducted broad Internet searches for publicly-accessible, personal blogs written in English by hearing parents whose children used CIs and were not affiliated with any listening device manufacturers. Thus, all blogs were housed on independent parent-initiated sites. The researchers conducted their search using the Google Search web search engine from January 23, 2017 to April 20, 2017. Links embedded within the initial blog sites and hyperlinked to outside blog websites were also evaluated. The researchers input the following data into an Excel spreadsheet: (1) date of find, (2) method of discovery, (3) blog’s address, (4) blog’s title, (5) entry’s address, (6) entry’s title, (7) date of entry, and (8) summary of entry. A total of 26 blogs yielding a total of 756 entries that fit our inclusion criteria were found and documented. All blogs were public domain and not password protected. Phase II Phase II included an in-depth review of the 26 authors’ blogs. We selected every blog that fit the following criteria: (1) the author of the blog reported being a hearing parent to a child with HL, (2) the author of the blog lived in the United States, and (3) the child with HL received a CI within the span of the blog’s duration. From the 756 initial blog entries we ultimately sampled a selection of entries from 20 different blogs written by parents of children with HL who use CIs. We selected these blogs because they revealed how a narrative unfolds over time. The duration of the blogs’ entries ranged from 1 year to 5 years with a mode of 1.5 years. Phase III Finally, in Phase III, for each author we selected the following: their first blog entry, all blog entries occurring one month prior to CI surgery, and all blog entries occurring up to 6 weeks following CI surgery (this included entries pertaining to the surgery itself). Because the 756 initial blog entries varied greatly in accordance with the author’s post date, posting frequency, and post length, we decided to sample blog entries that would undergo analysis based on principles of narrative coherence outlined by Labov (1999). These principles include: orientation, sequential organization, and causal explanation. First, we chose each author’s first blog entry to gain context to each narrator’s situation. These posts were important in creating an orientation to the parent’s narrative and their perspective of their child’s HL diagnosis. As Labov explains, orientation details appear at the beginning of the story and set the stage for understanding what is to come. After familiarizing ourselves with the data, we set timeframe parameters that seemed to best capture the skeleton of their children’s intervention (cochlear implantation) across the parents’ subsequent blog posts. Labov suggests that sequential organization is essential for coherence because it allows narrators to provide attributions for what has happened (i.e., causal explanation) and provides temporal order. On average, a collection of blog entries from a single author included in the final dataset resulted in 5,582 words. The collection of the selected entries from the 20 blogs resulted in a total of 252 single-spaced pages of text. Data analysis To identity and understand the parents’ identities, we employed thematic narrative analysis (TNA). TNA is the corresponding method when using an interpretive narrative approach (Pederson, 2013; Scharp & Beck, 2017; Scranton, 2015; Thomas, 2014). Riessman (2008) originally developed the method to examine narratives that are intact, as opposed to identifying the themes within a narrative. Thus, the unit of analysis was a collection of blog entries from a single narrator (i.e., parent author). Based on the adapted procedures for TNA developed by Braun & Clarke (2006), we assigned one identity to each blogger by engaging in the following five steps: (1) gaining familiarity with the data, (2) identifying emergent themes, (3) defining and naming the themes, (4) generating emergent identities based on the ways the themes formed different patterns, and (5) locating evocative exemplars. Specifically, we read and re-read the data corpus. Then, we identified patterns in the data to form themes. For example, the theme despair emerged when parents discussed feeling helpless, hopeless, scared, and sad about their children’s diagnosis. We then explored the ways these themes formed pattern that constituted the parents’ identities. For example, the themes despair, information gathering, and advocacy coalesced to form the resilient parent identity. Finally, we examined the sampled corpus to select examples that best represented the identities, often keeping entire blog entries intact to illustrate the overarching identity type.1 Verification procedures To ascertain the validity of our narrative analysis, and in concert with researchers who have conducted thematic narrative analysis (Scharp & Beck, 2017; Scranton, 2015), we engaged in four interrelated verification procedures: (1) referential adequacy, (2) investigator triangulation, (3) audit trail, and (4) exemplar identification (Lincoln & Guba, 1985). To achieve referential adequacy, we first split the data into halves. The first author analyzed the first half of the corpus and identified four identities. Because saturation was reached by Blog #7 (first half of the data; see Corbin & Strauss, 2008), she then analyzed the second half of the data. When compared with the first half, no new identities emerged. Simultaneously, the third and fourth authors engaged in an independent analysis. We then met, discussed their findings, argued through differences, and came to a consensus (i.e., investigator triangulation; Lincoln & Guba, 1985). Through the entire process, we kept detailed notes of their analysis and the decisions they made to identify the emergent identity types (i.e., the audit trail). Finally, we selected evocative exemplars to illustrate the emergent identities (i.e., exemplar identification). Findings Four identities emerged in the stories of parents who have children with HL who use CIs: (1) the advocate, (2) the resilient parent, (3) the obedient worrier, and (4) the matter-of-fact narrator. Parent Identities The advocate Advocates were parents who, when learning of their children’s HL diagnosis, immediately jumped into action. These parents asked questions, engaged in independent research, read other parents’ blogs, and sought opportunities to ensure their children’s best care. One parent explained: The audiologist ran the test, told me he didn’t pass again… After that, all she could tell me was that he had some type of a loss, but that we wouldn’t know the degree or type until we ran an ABR test. At the time, we didn’t know there were degrees or different types of hearing loss. We just thought you could either hear, or if you were deaf, you couldn’t. Has our world—and vocabulary—changed over the last year. I came home and was glued to the computer for the next few weeks—trying to find out everything I could on hearing loss—even though we didn’t get the official diagnosis until Nov. 6 when they did the ABR. Surprisingly, his hearing loss hasn’t been that hard to accept. I’ve never had this overwhelming grief that a lot of parents go through. I don’t know if maybe it’s because for the first five weeks we knew there was something wrong so I was prepared when she said he failed it again. (Blog #6) This parent, indicative of many of the parents who constructed an advocate identity, did not appear to suffer from “overwhelming grief” but rather focused on education, learning new vocabulary, and exploring the nuances of HL. Consequently, advocate parents often offered advice to other parents that encouraged them to take action. For example, one parent advised: Make a list of questions/concerns that you have regarding the risks and possible complications and preferably have this list ready during the ENT consult AND at surgery prep to ask again. I asked the same questions both during the consult and during the prep because I wanted to make sure that I knew what to do in case the worst possible scenario happened. Our biggest concern was with CSF leaks due to Mondini’s and our ENT constantly put our minds to rest since he deals with a lot of these cases. But it still helped me to hear (over and over) how they resolve those issues and what to do if we ran into more leaks after surgery. (Blog #2) This parent went on to list more advice such as “Meet with the anesthesiologist”, emphasizing the actions parents could take to be a part of their child’s journey. Indeed, parents who constructed an advocate identity narrated the ways they were in control of their children’s care. The resilient parent Unlike advocates who immediately took action, resilient parents first expressed their initial distress and despair about their children’s HL diagnoses. Instead of remaining upset however, these parents overcame their uncertainty and negative emotions to support their children. One parent succinctly narrated: Brin’s diagnosis still came as a shock. We thought she might have some hearing loss but I will say I wasn’t prepared to hear she’s deaf. After I sobbed and picked myself up off the floor I decided I can’t feel sorry for myself, or Brin. I needed to be strong and be her biggest advocate and supporter. From that moment on I haven’t looked back. Hounding doctors office’s, fighting with the insurance companies…I do it all! (Blog #4) Even though she eventually became the advocate reminiscent in the first identity construction, what makes this parent resilient is her initial reaction to the diagnosis. Whereas the author of Blog #6 was not surprised, this mother was in shock to learn her child was deaf and was devastated to learn of her child’s HL. This reaction was indicative of many parents. For example, another mother detailed: Ben is going to be activated tomorrow morning! The three weeks since the CI surgery have gone by so fast—I can’t believe we are at this day. It was exactly nine months ago that we found out Ben was deaf. It felt like the whole world turned gray and out of focus that day. My baby hadn’t heard a thing I had said to him for the last 6 weeks and probably never would! As the sister of two siblings with special needs, I knew that there were many more serious things that could happen, but I had never known the pain of learning that your child has a disability. I worried about many things during my pregnancies, but the thought of having a child born deaf was never one of them. Nathan and I were both shocked and scared and confused that day. As I fumbled around trying to come to terms with Ben’s diagnosis, I felt helpless and lost. (Blog #11) Yet, this mother, like the author of Blog #4 did not remain feeling “helpless and lost”. Thus, what makes a parent resilient is their ability to bounce back and support their children. By the end of the narrative, parents who constructed resilient identities sounded virtually identical to the advocates characterized in the first identity type. Ben’s mother went on to share: I researched deafness for the next few days, ordering books and visiting websites. That is when I learned about the cochlear implant and what it can do for young children who are born deaf. There was our plan for Ben—he could learn to listen and speak with this device and lots of therapy. Now we just needed to make it happen. Nine months later, we are on the eve of activation. We have realized our dream for Ben of simultaneous bilateral implantation at 9 months of age. But the hard work has just begun. Now we must help Ben to interpret the sounds he will hear and translate them into language he can understand. Overall, resilient parents through their own initiative were able to overcome their despair by educating themselves and advocating for quality care for their children. The obedient worrier Obedient worriers were parents who were deeply concerned for their children, overwhelmed by the HL diagnosis and the cochlear implantation process but still willing to follow-through with what they were instructed to do to care for their children. They justified their concern as part of their parental role: I realize that it is our job as parents to worry about our children—no matter if our children have special needs or not. Worrying is something that I do best (ask my husband:-) Worry keeps me up at night and wakes me early in the morning. (Blog #9) Similar to resilient parents, obedient worriers began feeling despair about their children’s diagnosis but ultimately never evolved into advocates as evidenced by this parent: We were called back to pre-op around 6:30 and then it was just person after person coming in and asking questions, nurses, two anesthesiologists, two different doctors (plus residents) who were going to assist Dr. Niparko. All I wanted was to see our surgeon, Dr. Niparko, to know we were all set. Something about him calms me…it’s the same something that nine months ago made me feel he needed to be the one to implant Aiden. And then he came and I got all teary eyed. He reassured me that everything was going to go just fine. He told us that surgery would be right around 3 hours and no matter what, they’d come out at 10:30 to give us an update (Blog #7) Overwhelmed, this parent was not at the forefront asking the nurses and physicians questions. Rather, her account suggests that the questions she was being asked were overwhelming. As it happens, one of the primary characteristics of obedient worriers was their difficulty answering and asking questions. One parent remembered: We got checked in at the hospital, then they took us to a room to get her changed into her hospital gown. The nurses got all of her vitals and soon after, the anesthesiologist and Dr. Costa came in to speak with us about how the day would go. They asked if we had any other questions, but my mind went blank. (Blog #15) Thus, parents who constructed the obedient worrier type had some difficulties that advocates did not express and lacked the initiative that advocates and (eventually) the resilient parent types exhibited. The matter-of-fact narrator The last identity type to emerge was the matter-of-fact narrator. These parents described their children’s experiences with flat affect. Where a reader of the blog might anticipate an emotional reaction, these narrators lacked them almost all together. Thus, in stark contrast to the obedient worriers who often expressed their emotions, matter-of-fact narrators told their story from an omniscient point of view—almost as if the events were happening to people other than themselves. For example: After 4 hours of surgery and recovery, we were able to see him again. He had had trouble breathing and needed to be monitored a bit longer than usual. Hospital policy requires babies to eat before they are discharged. Ben refused. Reluctantly, after 12 hours in the hospital, we headed for home. Dr. Don turned on Ben’s sound today. He created four programs for Ben’s processor. The first is the quietest and the fourth is the loudest. The audiologists want Ben to slowly get used to sound and not be startled. (Blog #5) Whereas most other identities types used a variety of punctuation (e.g., exclamation points or smiley/sad faces) as well as emotion words (e.g., sad, scared, happy), these parents did not interpret the events of their children’s journey at all. Another parent recounted: Lucas was born on December 23, 2007, 4 1/2 weeks ahead of schedule. He was 5 lb. 7 oz. and 18.5 inches. He spent 8 days in the NICU: a few days on a CPAP, and a few days under the bilirubin lights. He did not pass his newborn hearing screening in the hospital. I found out later that the screening only tests up to 35 decibels. We were referred to an audiologist at the end of January for further testing. At the first ABR (Auditory Brainstem Response) test (January 22, 2008), we were told that the results were inconclusive because his ears were still so small (his adjusted age at the time was 0). Looking back on that, what occurred is that they got no response up to 90 decibels, and were hoping to blame it on his age. (Blog #13). Again, where other parents might comment on the distress they experienced having a newborn with HL, this parent does not express their feelings one way or another. Of note, these narratives were not only different in tone but also in content. Where other parents commented on their personal experiences, matter-of-fact narrators simply described their children as if they were absent from the cochlear implantation process. Discussion In the present study, we took an interpretive narrative approach and analyzed parents’ blogs to explore the identities of hearing parents in the United States who chose cochlear implantation for their children with HL. Our findings revealed four pervasive identity types: the advocate, the resilient parent, the obedient worrier, and the matter-of-fact narrator. Understanding these identity types helps (1) determine possible parent reactions to their children’s HL diagnosis and treatment, (2) extends the literature about parents of children with HL more broadly, (3) contributes to the field of narrative research, and (4) inform clinical practice. Existing research suggested that hearing parents experience trauma and distress surrounding their children’s HL because they have little personal experience with HL (Hardonk et al., 2011). Indeed, the majority of the existing literature points to the diagnosis of childhood HL as being rife with uncertainty and stigma (Fitzpatrick, et al., 2008; Flaherty, 2015). Yet, based on the findings from the present study, some parents seem to immediately focus their efforts on their children (i.e., advocates). Instead of initially ruminating on their children’s diagnoses, these advocate parents managed their uncertainty to garner ideal care for their children. This finding runs counter to Luterman’s (2006) observation that it initially takes time for hearing parents to recognize their loss. Yet, advocate parents (at least in the blog posts we analyzed) never acknowledge that they have lost something. Instead, their focus on their children is absolute. The advocate identity does, however, coincide with Brashers’ (2001) research on chronic illness that suggested when faced with uncertainty, people tend to respond in one of three ways, (1) acquiring information, (2) accepting that certain situations come with unknowns, and (3) seeking supportive communication from social network members and experts. Although we cannot say that these parents accepted their child’s HL and integrated it into their families, we can say that advocate parents both engaged in independent research and sought support from professionals. Thus, based on our findings, it is possible that these uncertainty management practices extend not only to those experiencing the chronic illness but also to the family members that support the person with the health condition. Resilient parent types also extend the narrative research by McAdams (2006) who argues that life stories often include contamination sequences. As he describes: Contamination sequences are not simply bad happenings in a person’s life. There are plenty of bad occurrences—some worse than others. In contamination, there first exists something that is very, very good. …And then—and often quite suddenly—it is all lost. Spoiled. Ruined. (p. 213). This type of contamination is consistently reported in identity studies in stigmatized contexts (e.g., unemployment (Pederson, 2013), religious exit narratives (Scharp & Beck, 2017), former foster children (Thomas, 2014)). As it happens, people in these studies always construct some type of victimization identity despite manifesting in significantly different contexts. Thus, counter to what might be expected, none of the parents in our study constructed a victim identity throughout their blog posts. Rather, resilient parents overcame their distress to become more like advocate parents. This is what McAdams (2006) refers to as the redemptive identity, which is replicated in the aforementioned Pederson (2013), Scharp & Beck (2017) and Thomas (2014) studies. Our (lack of) finding, then, is remarkable considering the victim identities that emerged in the aforementioned studies all came from online narratives instead of blogs. It is possible that longitudinal data captured across the blog posts illuminates a process of redemption that cannot be captured in a single narration even if the narrative transcends time. The obedient worrier identity also provides significant insight that might inform practice. Research suggests that parent internal locus of control is associated with more positive outcomes in children than parent external locus of control (Nowicki, Iles-Caven, Gregory, Ellis, & Golding, 2017). In other words, parents who believe their children’s outcomes are dependent on their own behavior—as opposed to the behavior/control of others (i.e., professionals)—are most likely to raise children with positive health outcomes (e.g., sleeping, eating, tantrum behavior). Thus, findings from the present study echo the idea that clinicians should help obedient worrier parents grow into educated and empowered advocates for their children in order to yield long-term positive outcomes (Luterman, 2006). Recognizing an obedient worrier might also help pediatric audiologists better help hearing families of children with HL by increasing information support or realizing that a family is not ready to proceed with the next step in care (e.g., CI evaluation). Indeed, being able to recognize any of the identity types might facilitate better family support and might be especially helpful in instances where families encounter roadblocks following the identification of HL like the diagnosis of an additional disability. Training and educating well-equipped hearing healthcare providers is important considering the large corpus of research that suggests receiving support provides psychological, physical, and relational benefits (MacGeorge, Feng & Burlseson, 2011; Poon, & Zaidman-Zait, 2014), despite the fact that such support is something parents report they are missing from current audiological service provision (Fitzpatrick, et al., 2008). Improvements in professional, family-centered communication, then, are likely to improve parent satisfaction with the audiological diagnostic/intervention process, thus improving the overall hearing healthcare and ultimate well being of children with HL (Tattersall & Young, 2006). Finally, the matter-of-fact narrator represents a new identity type that has not been recognized in existing literature to date. These parents told a story with arguably low coherence that one might expect from a third-party who was recounting what they observed from afar. Fiese & Sameroff (1999) explain that narrative coherence represents the extent to which people tell an organized and sensical story that is marked by congruence of affect and content. Thus, these narrators did not express mismatched affect but rather the incongruence of affect was exemplified by an absence of emotion when a reader might expect an abundance. Although we were not able to interview the blog narrators, some possible reasons for this lack of emotion might be that parents did not want to share what they considered to be private aspects of their experience. Petronio (2013) argues that when people feel they own certain private information, they also feel the right to control it. Matter-of-fact narrators might also have feared negative evaluation from outsiders or might have had a difficult time sharing their experience without become too emotional. Results of a recent study by Scharp (2016) found that some adult children who distanced themselves from their parents told their stories from a third-person point of view (i.e., as if they were another person). These narrators wanted other people to form their own conclusions about their stories. They also wanted to share their stories with others without having to talk about their experiences in person. Regardless for the reason these parents chose to write their blogs in such a matter-of-fact way, a better understanding why people choose this style of storytelling in the face of adverse situations could be an important indicator of well being. Future Directions Many possibilities for future research exist. One avenue might be to explore how parent identity types correspond to outcomes for both the parents and their children, such as self-esteem, relational satisfaction, and overall well being. Such research would be particularly valuable given what we already know about the low self-esteem experienced by children with HL (Theunissen, et al., 2014), the stress experienced by mothers of children with HL (Pipp-Siegel, et al., 2002; Quittner, et al., 2010), and the chronic grief experienced by parents of children with HL (Kurtzer-White & Luterman, 2003). Researchers might also explore the communicative strategies parents use to construct their identities within and outside the family. Although Galvin (2014) proposes construction strategies, these have yet to be verified by data. This is particularly important considering the deconstruction practices she proposes do not completely align when applied to empirical data (Scharp, 2017). Better understanding parents’ communicative behaviors could eventually help families better cope with the HL diagnosis and the accompanying decision-making processes (Hyde, Punch, & Komesaroff, 2010) talk about their family’s situation, and educate other members of their social network to be allies with them and their children. Limitations As with all research, the present study has limitations. As we alluded to in the methods section, by collecting online narratives we do not have consistent demographic information. Not only might demographic information provide a cultural framework to better understand identity formation, but it might also provide important insights into the specific uncertainties some parents face and how they manage those uncertainties. For example, if parents have access to formal education and economic resources, they might experience and manage their uncertainty differently than parents without such resources. Talking with parents directly might also illuminate how they seek support and what support is helpful. Finally, in-person interviews might also inform the ways in which parents manage their private information surrounding their children’s HL. Consequently, researchers might consider interviewing parents directly but should vigilantly consider the ethical and legal implications of talking to these parents, particularly about personal healthcare information. Another limitation of collecting online data pertained to the blogs’ timelines. Specifically, some parents began their narratives with the birth of their child whereas others began the blog with the HL diagnosis (and for some these life events occurred simultaneously). Furthermore, some parents were further along in their children’s journeys than others. Because identities are constantly in flux, it is possible that these parents’ identities will evolve over time. For example, an obedient worrier might meet an early interventionist who teaches them how to advocate for their child and subsequently evolves into a resilient parent. Lastly, we want to make note that there might be parents who construct very different identities but do not feel comfortable or want to talk about their experiences online. As such, parents who have more positive experiences might be more likely to blog about their experiences. Conclusion The present study revealed that hearing parents constructed four pervasive identity types when telling online stories about their children with HL who use CIs. These findings have valuable implications for better understanding the field of narrative literature and the experience of parents of children with HL. Furthermore, identifying and understanding these parent identities is a first step toward improving clinicians’ abilities to help families seek out, implement, and follow-through with family-centered hearing healthcare. Note 1 The first author has extensive experience with TNA and lead the TNA for the present dataset. The first author also trained the third and fourth authors in TNA using previously published data sets from their lab. Ultimately, the first, third, and fourth authors completed the analysis and verification procedures for the present blog data. Funding The authors have no funding support to report for this study. Conflict of interest No conflicts of interest were reported. Acknowledgments The authors are grateful to Camilla Cox for helping collect blogs from the Internet and Andrea Green for her editing. References American Speech-Language-Hearing Association. ( 2004). Scope of Practice in Audiology [Scope of Practice]. Available from www.asha.org/policy. American Speech-Language-Hearing Association. ( 2016). Scope of Practice in Speech-Language Pathology [Scope of Practice]. Available from www.asha.org/policy. Bamberg, M., & Georgakopoulou, A. ( 2008). 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(Eds.), The Oxford handbook of deaf studies, language, and education  ( Vol. 2, pp. 241– 250). New York, NY: Oxford University Press. © The Author(s) 2018. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Journal of Deaf Studies and Deaf Education Oxford University Press

Exploring the Identities of Hearing Parents who Chose Cochlear Implantation for their Children with Hearing Loss

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Abstract

Abstract We aimed to determine the types of identities hearing parents construct when telling online stories about their children with hearing loss (HL) who use cochlear implants (CIs). To do so, we employed a qualitative design and sampled 20 different blogs United States origins and written by parents of children who use CIs. We then used thematic narrative analysis (Braun & Clarke, 2006; Riessman, C. K. (2008). Narrative methods for the human sciences. Thousand Oaks, CA: Sage Publications.) to uncover recurring themes from these parents’ blogs. The themes then allowed us to assign identities to the parents. Four identities emerged in the parents’ stories: (1) advocates, (2) resilient parents, (3) obedient worriers, and (4) matter-of-fact narrators. Identifying and understanding these parent identities is a first step toward improving theoretical and clinical insights into parents’ perspectives and experiences following their children’s diagnosis of HL. Such insights could ultimately improve audiologists’ abilities to help families seek out, implement, and follow-through with family-centered hearing healthcare. The United States Department of Health reports that, as of December 2012, cochlear implantation is the intervention of choice for the parents of 38,000 children with hearing loss (HL). Notably, the majority of these children undergoing cochlear implantation are born to hearing parents (Mitchell & Karchmer, 2004). These parents rarely have prior experience with HL making their transition to parenthood traumatic, stressful, and full of challenges (Hardonk et al., 2011; Pipp-Siegel, Sedey, & Yoshinaga-Itano, 2002). Research suggests that most parents of children with HL experience a myriad of negative emotions (e.g., denial, shock, and frustration) pertaining to the diagnosis and treatment of their children (Russ et al., 2004). To compound experiences of uncertainty and stress, Pallier (2007) observed that parents have to also make countless choices about communication modalities, listening technology, and education. Simultaneously, parents must readjust their own expectations and work toward constructing their unique identities as hearing parents who have children with HL (Young, 2010). Faced with having to make sense of their experiences and figure out who they are, parents often turn to the Internet to both learn about healthcare information and share their experiences (Muñoz, Nelson, & Barker, 2016; Rice, 2006). One method parents utilize to share their experiences is web logging (more commonly known as blogging). Parent blogs are excellent sources of unsolicited narratives that allow parents to tell their stories without fear of in-person judgment while speaking to salient aspects of their identity that are particularly meaningful to them (Langellier & Peterson, 2004; Thomas, Scharp, & Paxman, 2014). However, blog posts often go unanalyzed. Existing research in mainstream medical literature privileges quantitative approaches, particularly randomized control trials, without recognizing that many aspects of providing family-centered healthcare are difficult to study using experimental design (Dixon-Woods & Fitzpatrick, 2001; Russ, et al., 2004). Yet, qualitative research can significantly enrich our knowledge of healthcare, especially in the context of HL (Russ et al.). For example, Westby and Culatta (2016) argue that understanding personal narratives (such as those found on blogs) not only fits well within the American Speech-Language-Hearing Association’s Scope of Practice for both Speech-Language Pathologists (2016) and Audiologists (2004), but also can aid clinicians in developing successful interventions for families and individuals faced with communication and swallowing conditions. Because many parents of children with HL experience major disruptions to their identities, it is important to understand how the families are making sense of themselves and their experiences. Understanding these identities are important considering who a parent believes themselves to be and has implications for how they care for their children as well as their own personal well being (McAdams, 2006; Westby and Culatta, 2016). Furthermore, we propose that understanding parent identities is a first step toward developing effective family-centered hearing healthcare and intervention to support the parents of children with HL. Thus, it was the aim of this study to determine the identity types constructed in individuals’ stories (via blogs) about their experiences parenting children who use CIs. Identity Complications for Parents of Children with Hearing Loss Relational turbulence theory (Solomon, Knobloch, Theiss, & McLaren, 2016) suggests that when partners go through a significant transition—such as their newborn being diagnosed with HL—they experience decreased relational satisfaction, decreased perceived partner support, and increased relational uncertainty. Uncertainty, as Brashers (2001) describes, occurs “when details of situations are ambiguous, complex, unpredictable, or probabilistic; when information is unavailable or inconsistent; and when people feel insecure about their own state of knowledge or the state of knowledge in general” (pg. 478). Virtually anything can be the source of uncertainty (Berger & Bradac, 1982). Many parents of children with HL experience immense uncertainty surrounding diagnosis, intervention, and their own identities (Flaherty, 2015). This uncertainty is problematic given previous research exploring the affects of chronic illness in children (Kerr & Haas, 2014) showing that the negative outcomes (increased fear, stress, and feeling of helplessness) are associated with this type of uncertainty. Unfortunately, hearing parents’ uncertainty about their children with HL is likely exacerbated by the experience of ambiguous loss. Ambiguous loss Individuals experience ambiguous loss as either a physical absence with psychological presence or psychological absence with physical presence (Boss, 2007). Conceptualized primarily as a family problem, Boss (1999) explains that individuals experiencing ambiguous loss often feel incompetent because the loss erodes an individual’s sense of mastery and destroys their belief in the world as a fair, orderly and manageable place. The family’s identity becomes confused (Boss, 2006). This expectation violation might induce even more uncertainty for hearing parents of deaf or hard-of-hearing children because they have likely not had personal experiences with HL. To date, researchers have applied this ambiguous loss framework to a variety of topics. Perhaps most closely aligned with the present study is the work by Golish and Powell (2003). Their study elucidated the grief parents experience when their children are born prematurely but also the complexities of not being able to grieve entirely because their children are still alive. To make sense of their experience parents must negotiate a myriad of contradictions such as acknowledgment/denial, control/helplessness, certainty/uncertainty, and openness/closedness. Golish and Powell argued that having to manage these contradictory experiences causes many parents overwhelming amounts of stress, draining them both physically and emotionally. Overall, their study concluded that parents want others to acknowledge the loss of the dream birth experience as well as to equally consider their child’s health and future. In other words, parents wanted their social network members to acknowledge the emotional stress associated with having a premature baby but also wanted them to show concern for the health and well being of their child and their future. Parental stigma Thus, it might come as no surprise that hearing parents of newborns identified with HL experience grief, loss, and the negative emotions that covary with ambiguous loss (Hardonk et al., 2011). Although their child is physically alive, parents are forced to make sense of raising a child with an unanticipated disability. Sensemaking is important not only because hearing parents are uncertain but also because of the stigma often associated with disabilities, like HL. Even though parents are not experiencing the HL themselves, research suggests that the stigma surrounding disability often extends to family members and has a profound effect on their experiences, decisions, and how they self-identify (Bos, Pryor, Reeder, & Stutterheim, 2013; Fitzpatrick, Angus, Durieux-Smith, Graham, & Coyle, 2008). Discourse dependent families In addition to the costs of associated stigma, families with members who are differently abled are considered discourse dependent (Hays & Colaner, 2016). According to Galvin (2014), discourse dependent families require more communication to construct their identities not only within the family but also to construct an identity to the outside world because their family deviates from the cultural norm (i.e., family members who are able-bodied). They must engage in discussions that bind the family together, tell stories about the family’s identity, explain their situations so others can understand, and justify their relationship against attacks. Discourse dependent families are often considered “second best”, making it even more important that the members construct a unified family identity in face of the uncertainty, stigma, and ambiguous loss. (See Baxter, Norwood, Asbury, & Scharp (2014) for an example of the “second best” appraisal in the context of family estrangement.) An Interpretive Narrative Approach One way families make sense of and construct a shared identity is through telling stories or narrative sensemaking (Galvin, 2014; Koenig Kellas, 2014; Scharp & Beck, 2017). Herman (2009) defines a narrative (or a story) as “a basic human strategy for coming to terms with time, process, and change”. Research shows that telling stories, especially in discourse dependent families, influence the family member’s well being, self-esteem, and overall self-concept (Kranstuber & Koenig Kellas, 2011; McAdams, 2006). In parallel, Boss (2006) argues that when trying to regain a sense of identity after ambiguous loss, family members should use narrative means to make meaning of their relational experience after trauma and loss. As Westby & Culatta (2016) observe, constructing a coherent identity can help individuals evolve into informed decision makers and problem solvers while simultaneously taking control and responsibility for their lives. Put simply, understanding identity construction has important practical implications for a person’s health and ability to thrive. Although there are many ways to study narratives, we frame the present study in an interpretive narrative approach (Koenig Kellas, 2014). An interpretive narrative approach positions stories ontologically, emphasizing the way narratives constitute identity in contextualized settings as opposed to only seeing the narrative as a representation of a stabilized self (Bamberg & Georgakopoulou, 2008). Thus, narratives do the work of simultaneously reflecting and constructing a person’s identity. In this regard, stories can create, repair, or even destroy identities all the while negotiating personal agency (Nelson, 2001). Often, understanding narrative identities are important after major disruptions like losing a job (Pederson, 2013), facing stigma as in the case of Muslim women (Scranton, 2015), or experiencing a chronically uncertain childhood as in the case of former foster children (Thomas, 2014). This is not surprising as narratives have the power to create logic out of complex events and help individuals make sense of their lives (Becker, 1997; Koenig Kellas, 2014). Because of the uncertainty, ambiguous loss, and stigma that disrupt the identities of hearing parents who have children with HL and the power of stories to reflect and construct identities, we pose the following research question: What types of identities do hearing parents construct when telling online stories about their children’s HL identification and intervention (i.e., cochlear implantation)? Methods Importance of Unsolicited Narratives and Data Collection Narrative is not only seen as a way of being (i.e., ontologically), but narratives are also seen as a form of data (i.e., epistemologically; Koenig Kellas, 2014). Similar to other narrative scholars, we selected online accounts (i.e., blogs) to better understand parents’ identities in unsolicited narratives (Pederson, 2013; Scranton, 2015; Thomas, 2014). Recall, unsolicited narratives allow parents to (1) tell their story their way without fear of in-person judgment and (2) speak to salient aspects of their identity that are particularly meaningful to them (Langellier & Peterson, 2004; Thomas et al. 2014). Indeed, Langellier and Peterson argue that when people share their accounts online, they likely only share what is important to them given the time and energy they expend telling their story without prompting. Thomas and her colleagues (2014) go on to explain, “Unsolicited talk (e.g., online texts) offers unique opportunity…The absence of a specific audience encourages narrators to provide an unadulterated account of their experience, rather than tailor their story to specific individuals” (p. 375). Perhaps most importantly, collecting unsolicited talk aligns with Boss (2006) claim that when coping with ambiguous loss, stories that are not told voluntarily—such as those elicited from a script—will increase feelings of helplessness. With this in mind, we argue that even though there are limitations to collecting online narratives (see Discussion), the possibility of harming participants and the benefits of unsolicited talk guided our decision to look at parents’ blogs. Procedure Blog selection Phase I With IRB exemption, the fourth author and an assistant jointly conducted broad Internet searches for publicly-accessible, personal blogs written in English by hearing parents whose children used CIs and were not affiliated with any listening device manufacturers. Thus, all blogs were housed on independent parent-initiated sites. The researchers conducted their search using the Google Search web search engine from January 23, 2017 to April 20, 2017. Links embedded within the initial blog sites and hyperlinked to outside blog websites were also evaluated. The researchers input the following data into an Excel spreadsheet: (1) date of find, (2) method of discovery, (3) blog’s address, (4) blog’s title, (5) entry’s address, (6) entry’s title, (7) date of entry, and (8) summary of entry. A total of 26 blogs yielding a total of 756 entries that fit our inclusion criteria were found and documented. All blogs were public domain and not password protected. Phase II Phase II included an in-depth review of the 26 authors’ blogs. We selected every blog that fit the following criteria: (1) the author of the blog reported being a hearing parent to a child with HL, (2) the author of the blog lived in the United States, and (3) the child with HL received a CI within the span of the blog’s duration. From the 756 initial blog entries we ultimately sampled a selection of entries from 20 different blogs written by parents of children with HL who use CIs. We selected these blogs because they revealed how a narrative unfolds over time. The duration of the blogs’ entries ranged from 1 year to 5 years with a mode of 1.5 years. Phase III Finally, in Phase III, for each author we selected the following: their first blog entry, all blog entries occurring one month prior to CI surgery, and all blog entries occurring up to 6 weeks following CI surgery (this included entries pertaining to the surgery itself). Because the 756 initial blog entries varied greatly in accordance with the author’s post date, posting frequency, and post length, we decided to sample blog entries that would undergo analysis based on principles of narrative coherence outlined by Labov (1999). These principles include: orientation, sequential organization, and causal explanation. First, we chose each author’s first blog entry to gain context to each narrator’s situation. These posts were important in creating an orientation to the parent’s narrative and their perspective of their child’s HL diagnosis. As Labov explains, orientation details appear at the beginning of the story and set the stage for understanding what is to come. After familiarizing ourselves with the data, we set timeframe parameters that seemed to best capture the skeleton of their children’s intervention (cochlear implantation) across the parents’ subsequent blog posts. Labov suggests that sequential organization is essential for coherence because it allows narrators to provide attributions for what has happened (i.e., causal explanation) and provides temporal order. On average, a collection of blog entries from a single author included in the final dataset resulted in 5,582 words. The collection of the selected entries from the 20 blogs resulted in a total of 252 single-spaced pages of text. Data analysis To identity and understand the parents’ identities, we employed thematic narrative analysis (TNA). TNA is the corresponding method when using an interpretive narrative approach (Pederson, 2013; Scharp & Beck, 2017; Scranton, 2015; Thomas, 2014). Riessman (2008) originally developed the method to examine narratives that are intact, as opposed to identifying the themes within a narrative. Thus, the unit of analysis was a collection of blog entries from a single narrator (i.e., parent author). Based on the adapted procedures for TNA developed by Braun & Clarke (2006), we assigned one identity to each blogger by engaging in the following five steps: (1) gaining familiarity with the data, (2) identifying emergent themes, (3) defining and naming the themes, (4) generating emergent identities based on the ways the themes formed different patterns, and (5) locating evocative exemplars. Specifically, we read and re-read the data corpus. Then, we identified patterns in the data to form themes. For example, the theme despair emerged when parents discussed feeling helpless, hopeless, scared, and sad about their children’s diagnosis. We then explored the ways these themes formed pattern that constituted the parents’ identities. For example, the themes despair, information gathering, and advocacy coalesced to form the resilient parent identity. Finally, we examined the sampled corpus to select examples that best represented the identities, often keeping entire blog entries intact to illustrate the overarching identity type.1 Verification procedures To ascertain the validity of our narrative analysis, and in concert with researchers who have conducted thematic narrative analysis (Scharp & Beck, 2017; Scranton, 2015), we engaged in four interrelated verification procedures: (1) referential adequacy, (2) investigator triangulation, (3) audit trail, and (4) exemplar identification (Lincoln & Guba, 1985). To achieve referential adequacy, we first split the data into halves. The first author analyzed the first half of the corpus and identified four identities. Because saturation was reached by Blog #7 (first half of the data; see Corbin & Strauss, 2008), she then analyzed the second half of the data. When compared with the first half, no new identities emerged. Simultaneously, the third and fourth authors engaged in an independent analysis. We then met, discussed their findings, argued through differences, and came to a consensus (i.e., investigator triangulation; Lincoln & Guba, 1985). Through the entire process, we kept detailed notes of their analysis and the decisions they made to identify the emergent identity types (i.e., the audit trail). Finally, we selected evocative exemplars to illustrate the emergent identities (i.e., exemplar identification). Findings Four identities emerged in the stories of parents who have children with HL who use CIs: (1) the advocate, (2) the resilient parent, (3) the obedient worrier, and (4) the matter-of-fact narrator. Parent Identities The advocate Advocates were parents who, when learning of their children’s HL diagnosis, immediately jumped into action. These parents asked questions, engaged in independent research, read other parents’ blogs, and sought opportunities to ensure their children’s best care. One parent explained: The audiologist ran the test, told me he didn’t pass again… After that, all she could tell me was that he had some type of a loss, but that we wouldn’t know the degree or type until we ran an ABR test. At the time, we didn’t know there were degrees or different types of hearing loss. We just thought you could either hear, or if you were deaf, you couldn’t. Has our world—and vocabulary—changed over the last year. I came home and was glued to the computer for the next few weeks—trying to find out everything I could on hearing loss—even though we didn’t get the official diagnosis until Nov. 6 when they did the ABR. Surprisingly, his hearing loss hasn’t been that hard to accept. I’ve never had this overwhelming grief that a lot of parents go through. I don’t know if maybe it’s because for the first five weeks we knew there was something wrong so I was prepared when she said he failed it again. (Blog #6) This parent, indicative of many of the parents who constructed an advocate identity, did not appear to suffer from “overwhelming grief” but rather focused on education, learning new vocabulary, and exploring the nuances of HL. Consequently, advocate parents often offered advice to other parents that encouraged them to take action. For example, one parent advised: Make a list of questions/concerns that you have regarding the risks and possible complications and preferably have this list ready during the ENT consult AND at surgery prep to ask again. I asked the same questions both during the consult and during the prep because I wanted to make sure that I knew what to do in case the worst possible scenario happened. Our biggest concern was with CSF leaks due to Mondini’s and our ENT constantly put our minds to rest since he deals with a lot of these cases. But it still helped me to hear (over and over) how they resolve those issues and what to do if we ran into more leaks after surgery. (Blog #2) This parent went on to list more advice such as “Meet with the anesthesiologist”, emphasizing the actions parents could take to be a part of their child’s journey. Indeed, parents who constructed an advocate identity narrated the ways they were in control of their children’s care. The resilient parent Unlike advocates who immediately took action, resilient parents first expressed their initial distress and despair about their children’s HL diagnoses. Instead of remaining upset however, these parents overcame their uncertainty and negative emotions to support their children. One parent succinctly narrated: Brin’s diagnosis still came as a shock. We thought she might have some hearing loss but I will say I wasn’t prepared to hear she’s deaf. After I sobbed and picked myself up off the floor I decided I can’t feel sorry for myself, or Brin. I needed to be strong and be her biggest advocate and supporter. From that moment on I haven’t looked back. Hounding doctors office’s, fighting with the insurance companies…I do it all! (Blog #4) Even though she eventually became the advocate reminiscent in the first identity construction, what makes this parent resilient is her initial reaction to the diagnosis. Whereas the author of Blog #6 was not surprised, this mother was in shock to learn her child was deaf and was devastated to learn of her child’s HL. This reaction was indicative of many parents. For example, another mother detailed: Ben is going to be activated tomorrow morning! The three weeks since the CI surgery have gone by so fast—I can’t believe we are at this day. It was exactly nine months ago that we found out Ben was deaf. It felt like the whole world turned gray and out of focus that day. My baby hadn’t heard a thing I had said to him for the last 6 weeks and probably never would! As the sister of two siblings with special needs, I knew that there were many more serious things that could happen, but I had never known the pain of learning that your child has a disability. I worried about many things during my pregnancies, but the thought of having a child born deaf was never one of them. Nathan and I were both shocked and scared and confused that day. As I fumbled around trying to come to terms with Ben’s diagnosis, I felt helpless and lost. (Blog #11) Yet, this mother, like the author of Blog #4 did not remain feeling “helpless and lost”. Thus, what makes a parent resilient is their ability to bounce back and support their children. By the end of the narrative, parents who constructed resilient identities sounded virtually identical to the advocates characterized in the first identity type. Ben’s mother went on to share: I researched deafness for the next few days, ordering books and visiting websites. That is when I learned about the cochlear implant and what it can do for young children who are born deaf. There was our plan for Ben—he could learn to listen and speak with this device and lots of therapy. Now we just needed to make it happen. Nine months later, we are on the eve of activation. We have realized our dream for Ben of simultaneous bilateral implantation at 9 months of age. But the hard work has just begun. Now we must help Ben to interpret the sounds he will hear and translate them into language he can understand. Overall, resilient parents through their own initiative were able to overcome their despair by educating themselves and advocating for quality care for their children. The obedient worrier Obedient worriers were parents who were deeply concerned for their children, overwhelmed by the HL diagnosis and the cochlear implantation process but still willing to follow-through with what they were instructed to do to care for their children. They justified their concern as part of their parental role: I realize that it is our job as parents to worry about our children—no matter if our children have special needs or not. Worrying is something that I do best (ask my husband:-) Worry keeps me up at night and wakes me early in the morning. (Blog #9) Similar to resilient parents, obedient worriers began feeling despair about their children’s diagnosis but ultimately never evolved into advocates as evidenced by this parent: We were called back to pre-op around 6:30 and then it was just person after person coming in and asking questions, nurses, two anesthesiologists, two different doctors (plus residents) who were going to assist Dr. Niparko. All I wanted was to see our surgeon, Dr. Niparko, to know we were all set. Something about him calms me…it’s the same something that nine months ago made me feel he needed to be the one to implant Aiden. And then he came and I got all teary eyed. He reassured me that everything was going to go just fine. He told us that surgery would be right around 3 hours and no matter what, they’d come out at 10:30 to give us an update (Blog #7) Overwhelmed, this parent was not at the forefront asking the nurses and physicians questions. Rather, her account suggests that the questions she was being asked were overwhelming. As it happens, one of the primary characteristics of obedient worriers was their difficulty answering and asking questions. One parent remembered: We got checked in at the hospital, then they took us to a room to get her changed into her hospital gown. The nurses got all of her vitals and soon after, the anesthesiologist and Dr. Costa came in to speak with us about how the day would go. They asked if we had any other questions, but my mind went blank. (Blog #15) Thus, parents who constructed the obedient worrier type had some difficulties that advocates did not express and lacked the initiative that advocates and (eventually) the resilient parent types exhibited. The matter-of-fact narrator The last identity type to emerge was the matter-of-fact narrator. These parents described their children’s experiences with flat affect. Where a reader of the blog might anticipate an emotional reaction, these narrators lacked them almost all together. Thus, in stark contrast to the obedient worriers who often expressed their emotions, matter-of-fact narrators told their story from an omniscient point of view—almost as if the events were happening to people other than themselves. For example: After 4 hours of surgery and recovery, we were able to see him again. He had had trouble breathing and needed to be monitored a bit longer than usual. Hospital policy requires babies to eat before they are discharged. Ben refused. Reluctantly, after 12 hours in the hospital, we headed for home. Dr. Don turned on Ben’s sound today. He created four programs for Ben’s processor. The first is the quietest and the fourth is the loudest. The audiologists want Ben to slowly get used to sound and not be startled. (Blog #5) Whereas most other identities types used a variety of punctuation (e.g., exclamation points or smiley/sad faces) as well as emotion words (e.g., sad, scared, happy), these parents did not interpret the events of their children’s journey at all. Another parent recounted: Lucas was born on December 23, 2007, 4 1/2 weeks ahead of schedule. He was 5 lb. 7 oz. and 18.5 inches. He spent 8 days in the NICU: a few days on a CPAP, and a few days under the bilirubin lights. He did not pass his newborn hearing screening in the hospital. I found out later that the screening only tests up to 35 decibels. We were referred to an audiologist at the end of January for further testing. At the first ABR (Auditory Brainstem Response) test (January 22, 2008), we were told that the results were inconclusive because his ears were still so small (his adjusted age at the time was 0). Looking back on that, what occurred is that they got no response up to 90 decibels, and were hoping to blame it on his age. (Blog #13). Again, where other parents might comment on the distress they experienced having a newborn with HL, this parent does not express their feelings one way or another. Of note, these narratives were not only different in tone but also in content. Where other parents commented on their personal experiences, matter-of-fact narrators simply described their children as if they were absent from the cochlear implantation process. Discussion In the present study, we took an interpretive narrative approach and analyzed parents’ blogs to explore the identities of hearing parents in the United States who chose cochlear implantation for their children with HL. Our findings revealed four pervasive identity types: the advocate, the resilient parent, the obedient worrier, and the matter-of-fact narrator. Understanding these identity types helps (1) determine possible parent reactions to their children’s HL diagnosis and treatment, (2) extends the literature about parents of children with HL more broadly, (3) contributes to the field of narrative research, and (4) inform clinical practice. Existing research suggested that hearing parents experience trauma and distress surrounding their children’s HL because they have little personal experience with HL (Hardonk et al., 2011). Indeed, the majority of the existing literature points to the diagnosis of childhood HL as being rife with uncertainty and stigma (Fitzpatrick, et al., 2008; Flaherty, 2015). Yet, based on the findings from the present study, some parents seem to immediately focus their efforts on their children (i.e., advocates). Instead of initially ruminating on their children’s diagnoses, these advocate parents managed their uncertainty to garner ideal care for their children. This finding runs counter to Luterman’s (2006) observation that it initially takes time for hearing parents to recognize their loss. Yet, advocate parents (at least in the blog posts we analyzed) never acknowledge that they have lost something. Instead, their focus on their children is absolute. The advocate identity does, however, coincide with Brashers’ (2001) research on chronic illness that suggested when faced with uncertainty, people tend to respond in one of three ways, (1) acquiring information, (2) accepting that certain situations come with unknowns, and (3) seeking supportive communication from social network members and experts. Although we cannot say that these parents accepted their child’s HL and integrated it into their families, we can say that advocate parents both engaged in independent research and sought support from professionals. Thus, based on our findings, it is possible that these uncertainty management practices extend not only to those experiencing the chronic illness but also to the family members that support the person with the health condition. Resilient parent types also extend the narrative research by McAdams (2006) who argues that life stories often include contamination sequences. As he describes: Contamination sequences are not simply bad happenings in a person’s life. There are plenty of bad occurrences—some worse than others. In contamination, there first exists something that is very, very good. …And then—and often quite suddenly—it is all lost. Spoiled. Ruined. (p. 213). This type of contamination is consistently reported in identity studies in stigmatized contexts (e.g., unemployment (Pederson, 2013), religious exit narratives (Scharp & Beck, 2017), former foster children (Thomas, 2014)). As it happens, people in these studies always construct some type of victimization identity despite manifesting in significantly different contexts. Thus, counter to what might be expected, none of the parents in our study constructed a victim identity throughout their blog posts. Rather, resilient parents overcame their distress to become more like advocate parents. This is what McAdams (2006) refers to as the redemptive identity, which is replicated in the aforementioned Pederson (2013), Scharp & Beck (2017) and Thomas (2014) studies. Our (lack of) finding, then, is remarkable considering the victim identities that emerged in the aforementioned studies all came from online narratives instead of blogs. It is possible that longitudinal data captured across the blog posts illuminates a process of redemption that cannot be captured in a single narration even if the narrative transcends time. The obedient worrier identity also provides significant insight that might inform practice. Research suggests that parent internal locus of control is associated with more positive outcomes in children than parent external locus of control (Nowicki, Iles-Caven, Gregory, Ellis, & Golding, 2017). In other words, parents who believe their children’s outcomes are dependent on their own behavior—as opposed to the behavior/control of others (i.e., professionals)—are most likely to raise children with positive health outcomes (e.g., sleeping, eating, tantrum behavior). Thus, findings from the present study echo the idea that clinicians should help obedient worrier parents grow into educated and empowered advocates for their children in order to yield long-term positive outcomes (Luterman, 2006). Recognizing an obedient worrier might also help pediatric audiologists better help hearing families of children with HL by increasing information support or realizing that a family is not ready to proceed with the next step in care (e.g., CI evaluation). Indeed, being able to recognize any of the identity types might facilitate better family support and might be especially helpful in instances where families encounter roadblocks following the identification of HL like the diagnosis of an additional disability. Training and educating well-equipped hearing healthcare providers is important considering the large corpus of research that suggests receiving support provides psychological, physical, and relational benefits (MacGeorge, Feng & Burlseson, 2011; Poon, & Zaidman-Zait, 2014), despite the fact that such support is something parents report they are missing from current audiological service provision (Fitzpatrick, et al., 2008). Improvements in professional, family-centered communication, then, are likely to improve parent satisfaction with the audiological diagnostic/intervention process, thus improving the overall hearing healthcare and ultimate well being of children with HL (Tattersall & Young, 2006). Finally, the matter-of-fact narrator represents a new identity type that has not been recognized in existing literature to date. These parents told a story with arguably low coherence that one might expect from a third-party who was recounting what they observed from afar. Fiese & Sameroff (1999) explain that narrative coherence represents the extent to which people tell an organized and sensical story that is marked by congruence of affect and content. Thus, these narrators did not express mismatched affect but rather the incongruence of affect was exemplified by an absence of emotion when a reader might expect an abundance. Although we were not able to interview the blog narrators, some possible reasons for this lack of emotion might be that parents did not want to share what they considered to be private aspects of their experience. Petronio (2013) argues that when people feel they own certain private information, they also feel the right to control it. Matter-of-fact narrators might also have feared negative evaluation from outsiders or might have had a difficult time sharing their experience without become too emotional. Results of a recent study by Scharp (2016) found that some adult children who distanced themselves from their parents told their stories from a third-person point of view (i.e., as if they were another person). These narrators wanted other people to form their own conclusions about their stories. They also wanted to share their stories with others without having to talk about their experiences in person. Regardless for the reason these parents chose to write their blogs in such a matter-of-fact way, a better understanding why people choose this style of storytelling in the face of adverse situations could be an important indicator of well being. Future Directions Many possibilities for future research exist. One avenue might be to explore how parent identity types correspond to outcomes for both the parents and their children, such as self-esteem, relational satisfaction, and overall well being. Such research would be particularly valuable given what we already know about the low self-esteem experienced by children with HL (Theunissen, et al., 2014), the stress experienced by mothers of children with HL (Pipp-Siegel, et al., 2002; Quittner, et al., 2010), and the chronic grief experienced by parents of children with HL (Kurtzer-White & Luterman, 2003). Researchers might also explore the communicative strategies parents use to construct their identities within and outside the family. Although Galvin (2014) proposes construction strategies, these have yet to be verified by data. This is particularly important considering the deconstruction practices she proposes do not completely align when applied to empirical data (Scharp, 2017). Better understanding parents’ communicative behaviors could eventually help families better cope with the HL diagnosis and the accompanying decision-making processes (Hyde, Punch, & Komesaroff, 2010) talk about their family’s situation, and educate other members of their social network to be allies with them and their children. Limitations As with all research, the present study has limitations. As we alluded to in the methods section, by collecting online narratives we do not have consistent demographic information. Not only might demographic information provide a cultural framework to better understand identity formation, but it might also provide important insights into the specific uncertainties some parents face and how they manage those uncertainties. For example, if parents have access to formal education and economic resources, they might experience and manage their uncertainty differently than parents without such resources. Talking with parents directly might also illuminate how they seek support and what support is helpful. Finally, in-person interviews might also inform the ways in which parents manage their private information surrounding their children’s HL. Consequently, researchers might consider interviewing parents directly but should vigilantly consider the ethical and legal implications of talking to these parents, particularly about personal healthcare information. Another limitation of collecting online data pertained to the blogs’ timelines. Specifically, some parents began their narratives with the birth of their child whereas others began the blog with the HL diagnosis (and for some these life events occurred simultaneously). Furthermore, some parents were further along in their children’s journeys than others. Because identities are constantly in flux, it is possible that these parents’ identities will evolve over time. For example, an obedient worrier might meet an early interventionist who teaches them how to advocate for their child and subsequently evolves into a resilient parent. Lastly, we want to make note that there might be parents who construct very different identities but do not feel comfortable or want to talk about their experiences online. As such, parents who have more positive experiences might be more likely to blog about their experiences. Conclusion The present study revealed that hearing parents constructed four pervasive identity types when telling online stories about their children with HL who use CIs. These findings have valuable implications for better understanding the field of narrative literature and the experience of parents of children with HL. Furthermore, identifying and understanding these parent identities is a first step toward improving clinicians’ abilities to help families seek out, implement, and follow-through with family-centered hearing healthcare. 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The Journal of Deaf Studies and Deaf EducationOxford University Press

Published: Apr 1, 2018

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