The Listening Brain Podcast Transcripts
Todd Houston: Welcome to Episode 20 of The Listening Brain podcast.
[00:00:14] Welcome to the Listening Brain. I'm your host, Todd Houston. In this podcast, we explore childhood hearing loss through the lives of the parents and families who are on this journey and the professionals who serve them.
[00:00:38] Hi, it's Todd Houston. Again, I just wanted to invite you to become a content creator for the 3C Digital Media Network. We want to really ramp up what we have to offer in 2021. This new year that we find ourselves in. So please reach out to us. If you have ideas for webinars courses, or even maybe a new podcast that you'd like to develop, reach out to me at firstname.lastname@example.org and I'll be in touch.
[00:01:15] Thanks. Today I have the pleasure of speaking with JJ Wicker. JJ is a pediatric audiologist and clinical researcher at primary children's hospital in Salt Lake City, Utah, as a clinician, JJ works with children who are cochlear, implanted, and complete diagnostic testing for infants who failed their newborn hearing screen.
[00:01:41] Dr. Wicker also runs the central auditory processing disorders clinic. As a researcher, JJ is interested in understanding the unique challenges posed to parents of children who are deaf and hard of hearing with other disabilities and how those challenges shift the parent's priority for their children's hearing related needs.
[00:02:04] He is also interested in understanding the challenges faced by adolescents who are deaf and hard of hearing as they prepare to transition to post-secondary opportunities. Here's my conversation with JJ, the DJ. Welcome to the podcast. Would you mind introducing yourself to our listeners?
[00:02:23] JJ Whicker: Sure thing. So, uh, I'm JJ Wicker.
[00:02:27] I'm a pediatric audiologist at a primary children's hospital in Salt Lake City, Utah. Um, I have a unique opportunity here, uh, where I get to both do clinical work with children, primarily with cochlear implants. I also run the. Central auditory processing disorders clinic here. Um, but then I also have research time contracted into, uh, the workload that I do here.
[00:02:52] So, um, I'm working on a few grants right now and some data collecting, um, and I'm hoping to build a large research program here.
[00:03:01] Todd Houston: Well, that's all very exciting. And as we were just talking about before we started, we have this common commonality of you went to Utah State University. I was on faculty there 10 years ago now.
[00:03:13] Uh, or I left there 10 years ago. Uh, let's start there. What made you go into audiology?
[00:03:21] JJ Whicker: Uh, so, uh, kind of, um, by really lucky chance I was, I know I've always wanted to work with children. I've had a pediatric heart forever. Um, and so by natural, um, yeah. Thought process there was to go into elementary education.
[00:03:39] Um, but selfishly I was turned away by the income and I am the sole provider of my family. So that mattered to me. Um, and I had an opera coach. Um, whose sister was a speech language pathologist. And so I talked with her and she was the one who said, well, if you want to work with children and maybe even in a school setting, you could go into speech, language pathology.
[00:04:03] Um, and so that's what started the path for me. Um, and then like, so, so, so like so many, uh, students in communicative disorders and deaf education, I went in hoping to become a speech language pathologist. Um, and then the basic audiology class in my undergrad did turn me, uh, it was a really hard decision cause I actually do quite deeply love both sides of the communication disorders profession.
[00:04:31] Um, a lot of people would joke that I went to the dark side, but I definitely never felt that I, I love audiology. I love speech. I love the collaborative practice that we can have, but anyway, so right then, uh, right. Right before, uh, grad school applications were due. I switched to audiology and it is just because I don't know.
[00:04:50] It just, yeah. Something about audiology spoke to me that seemed a little bit more fulfilling than the speech side of the profession. So I can't really pinpoint what exactly made me switch, but I did
[00:05:01] Todd Houston: Well, I think we're all the better for it. So, uh, with the work that you're doing, and of course these children and the families that you're serving, I think it's, we're all very much better for it.
[00:05:12] And so way, way back in the day, it used to be. Um, back in the dark ages, uh, when I was going through grad school, it used to be sort of the, the man went into audiology and the women went into speech, language pathology, but, you know, I was reading the other day on the actual website, but now it's, it's. It's tipped in beef, uh, female direction and audiology as well.
[00:05:37] So there's more females than ideology. Uh, so it was interesting, the, the sort of gender stereotype roles back in the day. And, and of course I kind of defied that cause I went into speech and didn't go into what was, what I do remember is that when I started at this I was at the university of South Carolina, there were four guys and one female who started the audiology program at the time.
[00:05:58] And all four of the guys filled out that could make it. So there was a class of one female in that audiology cohort that went through because all the guys, all the guys couldn't make it. You have had, uh, some, some great training. Uh, and, and so let's talk about what you want to do as a pediatric cardiology audiologist, and what is some of the research that you're focused on?
[00:06:34] JJ Whicker: So, um, I’ll kind of answer that second question first, because I feel like it leads into what my goals are as a clinician. Um, so working with Dr. Karen Munoz, she was my PhD mentor. And a lot of what she looks at is, um, looking at the psychosocial impacts of deafness or hearing loss on, um, on individuals who are deaf or hard of hearing.
[00:07:01] And she does work a lot with pediatrics, but she also does work kind of across the lifespan in that regard. So that's where, um, And that's where my thought process is started as looking at when individuals are diagnosed with hearing loss, how does that impact them? And of course, because I do pediatrics, um, my lens is very specifically looking at the parent, um, experience.
[00:07:27] Yeah. So that's, that's where I started looking at how parents are feeling about the diagnosis. What are their experiences? How did they interact with professionals? Um, to eventually make those, um, plans for care and how well are professionals doing at being family centered at making sure we're engaging with families in a way that matches their needs and responding, not to just their technical needs, but also to their emotional financial environmental needs.
[00:07:57] Um, so. Then it kind of shifted when I was an audiology student, I'm doing my first serious pediatric rotation, uh, ironically right here at primary children's hospital. It's how I got my foot in the door is I did a student rotation here. Um, and when you work in a children's hospital, one of the things you're exposed to a lot, our children who are what we call Multipli involved.
[00:08:22] And I don't know if there's a better term to use that. It's more, um, Appropriate, but that's the term that we tend to use when children, um, have multiple disabilities, multiple medical complications in addition to their deafness or hearing loss. Um, and so when I was a student exposed to these families for the first time, really, I mean, at.
[00:08:44] Other clinical rotations. I was occasionally, um, exposed to children who are deaf or hard of hearing who also have down syndrome, um, or maybe autism, but that was kind of the extent of my experience, but then here at a children's hospital, you see so many different, um, complexities going on and you would hear very, um, I would hear very emotionally, um, just powerful statements from families.
[00:09:14] Saying, you know, we aren't wearing hearing aids right now. We're not doing the cochlear implants right now, just because we need a break. My kid needs a break. We can't, we can't do this right now. We can't fight this right now. Um, it's just too hard, you know, I'd hear those kinds of things come out of families, mouths of, you know, we're not, we're not really wearing the devices.
[00:09:36] Um, And it was curious to me because, so I wanted to know what, what were families experiencing that would lead them to those, um, sort of conclusions or outcomes? Was it led me down this road of understanding how parents determined to prioritize, hearing related needs when children are deaf or hard of hearing and have other disabilities on top of their deafness or hearing loss.
[00:10:04] Um, so that, that's what led me to my dissertation. My dissertation was doing a grounded theory, looking at how parents determined to prioritize, hearing related needs for children who have down syndrome. And what emerged from that study was, um, that, you know, professionals definitely do play a role. Um, the level of how much families themselves are willing to take action to how much they believe in the importance of the hearing related, um, concerns.
[00:10:36] Um, those, those were the kinds of things that were emerging, um, which kind of just. Validate a lot of other research that's come out about the importance of how professionals interact with families and the health belief model. You know, our families, if they don't believe that there's an issue, they're probably not going to do anything about it.
[00:10:58] Um, so, so th there wasn't any like, um, huge discovery about how parents decide to prioritize. And it was really interesting to me because one thing I did think that was going to come out from that study. Where the medical needs were that the complexity of the child's medical needs were going to outweigh the hearing related needs.
[00:11:18] You know, the open heart surgeries, the breathing, the feeding. Um, I was expecting those to emerge from this study as being reasons why parents did not prioritize hearing related needs, but it didn't. I did come out in some ways, but not consistently across cases like I predicted. And so that, that's what stood out to me, um, is that even when children are, uh, have these complex multiple involvements going on, it's it could be that, um, that the medical complexities themselves are not exactly what or, um, Lending toward this phenomenon of parents not prioritizing hearing related needs.
[00:11:58] There might be something else like the professional. How are professionals interacting with families to help them understand a hearing loss, what it means for outcomes? Um, because. You know, every, every parent I've talked to so far has indicated that a priority for their child, even when they're multiple involved is the ability to communicate.
[00:12:19] They want their child to learn how to communicate for him or herself. Um, but if they're not going to take, uh, prioritize those hearing related needs, then they're going to compromise that value. So. A lot of people will say, well, hearing loss is quality of life. Whereas they've got these a life and death situations going on.
[00:12:38] So of course it's going to take a back burner. And while I think that that's valid in many, many ways, I also think that that value for communication is just as high. And there's a way to work with families in a way that maintains, um, you know, uh, families have chosen listening and spoken language. And that can only come through audibility.
[00:12:57] Um, so they, there has to be a way to balance the complexities of what the child is experiencing and being able to navigate the world of hearing health. So that was kind of a Longwood in dancer to let you know that, that that's what I do as a researcher. And then also as a clinician, that's what I really care about is helping.
[00:13:18] These families who come in, um, I do their ABR child is deaf, but they also have. Trisomy 18 or Kabuki syndrome or these other rare, you know, treat your Collin's syndrome. These other were a rare syndromes or conditions that have huge implications for the child's. Um, Life and helping families understand where hearing loss comes into play and helping work with them to establish goals in a way that meets their needs, um, in the home.
[00:13:51] So they can still prioritize here in care, but also manage the child's other, uh, needs.
[00:13:58] Todd Houston: Sure. I think you're hitting on a lot of good stuff there in terms of, of how do we work with parents? And like you're saying, how do we be family centered? And I think, or I think too many clinicians, and this is for speech-language pathologists and audiologists and others.
[00:14:18] I think it's a term that's thrown around. Yeah. And a lot of people think they're doing family centered practice, and they're really not just because you talk to the family and ask them what they're wanting to do. Uh, it doesn't mean that everything that you're doing is really family centered in terms of making sure they understand and have the information they need to make sure.
[00:14:41] Uh, a real decision. Uh, and I think too, you know, one of the things that came up, uh, before in another, uh, episode was the idea, this, you know, just one little area of, of data logging. And how we can see through data logging, you know, how, how long each day, the on average that the child is wearing the hearing technology.
[00:15:05] And, and I have seen this and, and, and, uh, and I think it's, you know, something we need to think about, but how it's sometimes used to scold the parents. Uh, which, you know, I think bringing it to their attention is the right thing to do, but how that information is used is often more, you know, being very critical.
[00:15:29] You know, why aren't you keeping the on there instead of getting to that in terms of what's, let's talk about why, you know, Johnny isn't wearing his hearing aids or his cochlear implant and, and what can we do when, when we he's having this. Downtime and he's not wearing it. What are, what is he doing? What are you doing?
[00:15:50] You know, where is he is, you know, is he at a babysitter during that time? Do we need to, you know, talk to the babysitter and then, you know, help that person understand. Uh, and so we often don't go that extra step, but really try to solve the problem. It's just, you need to do better. And then of course, the family, the parents leave that session, thinking that they've been scolded.
[00:16:09] And of course they get defensive and they build up, you know, this resistance and it doesn't often help the situation.
[00:16:17] JJ Whicker: Right, right. Absolutely. And it happens in audiology all the time. Um, there's lots of research to show that we tend to just stick to those technical data points where we'll see low data logging.
[00:16:29] And we'll say, you know, evidence is showing that your child needs to wear eight to 10 hours a day. If you want blah, blah, blah, blah, blah. And that's where we stop. Um, but just like you say there, what we don't know is that the parents are desperately wrestling their child at home and they get burnt out.
[00:16:45] They're crying, the kid's crying, um, and they don't know what to do. And so then you add the multiple disabilities on top of that, um, in telling parents what they need to do. Like that can just be a real, um, Real hindrance to their ability to develop trust in you to feel validated by you as a clinician, um, to feel heard by you as a clinician.
[00:17:11] Um, if you're just going to stick to those data. Cause I mean, you're right. The data do show that a higher, longer wear time equals improved, uh, spoken language outcomes. You know, that's true. It's there in the data. Um, but to get there. Doesn't mean that we have to just automatically flip a switch and suddenly it's happening.
[00:17:35] There's, um, goals that need to be set. There's understanding. Uh, I feel like I'm just echoing what you just said. Understanding what barriers are there in the home that are leading towards this. Do they, do parents need a resource for understanding how to manage child difficult child behavior? Do they need, um, someone in the community to come teach them?
[00:17:57] You know, when your child throws a tantrum? And you go ahead and take away the hearing aids, like do parents know that that's in a reinforcer and so they need to learn a new strategy, you know, like there's just so many things that parents need. Um, and just telling them what to do. Isn't going to get them there anyway.
[00:18:18] Todd Houston: Sure. And I think of, um, we're Singlish. She was here on our faculty, um, until recently she retired, but, you know, she talked about being too techno centric in our counseling. Um, what do you say to other pediatric audiologists who basically will say I don't have time for all of that. I don't have time for the counseling side.
[00:18:40] Right. You know, because I'm, I'm booked back to back and, and, uh, you know, I only have 10 minutes to do this or 15 minutes. Um, you know, you're, you're in a, in a sense of high productive hospital setting. Um, what do you say to other audiologists? Pediatric cardiologists who may. Okay. So yeah, it's just not in my schedule to do that kind of stuff.
[00:19:04] JJ Whicker: I think that when people say that, what they don't understand is that person centered care or family centered care is not a tangent billable thing. Um, and I th I think counseling is a tool to be person centered, and I think people get caught up, um, thinking that counseling is a, um, time structured, separate service that comes.
[00:19:30] With clinical services and I don't believe that's true. I believe being person and family centered is just a way of being a clinician it's, um, allowing, allowing the time for families to ask questions and being quiet so that they feel like they have a second to think about the questions they want to ask.
[00:19:49] You know, it's, it's just a way of being clinician. Um, and I would also argue. That, um, not being person centered, not counseling, um, is actually going to hamper your clinical productivity because if a family has this reoccurring issue and you feel like you don't have time to address it, then that issue is always going to be there.
[00:20:14] And it's always going to be a part of your clinical discussions. And Dr. Munoz, Karen Munoz did a study and I can't remember. What the study is called or where it's published, but she did a study where she has data that shows that when you take the time to directly address a concern, it will actually decrease the amount of time a family spends in clinic because it's been addressed.
[00:20:35] So that's, that's my thoughts regarding that particular concern. And I know it's out there.
[00:20:42] Todd Houston: Sure. And one thing that strikes me even. From the early intervention sort of speech path side of things and working with, with families and parents is that the whole area of adult learning theory. And how do we apply some of those concepts?
[00:21:01] You know, this is another adult and we have to understand where they're coming from. Being person centered being family center, but we're teaching them new skills. So how do they process information? And of course they're processing information about their child, you know, and then, so how do we, how do we roll all that together in a very positive, uh, learning experience really where they can be successful with the technology, as well as doing all these other things in terms of, you know, Talking to their children and doing all the things that you know, me as a SLP or the early interventionists going into the home or through telepractice, they're having to write a do as well.
[00:21:41] And so they're, you know, I feel like the, sometimes I think the, um, the bandwidth isn't there for all the stuff that we ask these parents to do, especially in the beginning, uh, when we all know that. Time is of the essence. And we want them to keep the hearing aids on and we want them to talk to them. We want them that he's saying to them, we want to, you know, and, uh, we're all just kind of throwing these things at them.
[00:22:04] I think we have to all be cognizant of what they're going through. Yeah. Yeah. So getting back to your research. Where do you want to go with your research as in, in the future?
[00:22:19] JJ Whicker: So, um, right now I'm kind of in the stages of developing an infrastructure to, um, to bring in some grants, uh, and, uh, And just develop a strong program because one of the downsides to where am I, I love where I'm at, but, um, I'm not affiliated with the university, which most of the physicians and other researchers who do research through a primary children's hospital, they're duly affiliated with the university where there's, I think a better infrastructure for, you know, grant writing and.
[00:22:54] Um, supports and all that good stuff. So I, and I'm all, I'm not duly employed by the university, so that's kind of tricky. So my, my focus right now is just getting some grants. Um, I'm, uh, looking, uh, one of the, I'm looking at two different populations right now. One is children with craniofacial differences.
[00:23:12] I want to know, uh, I just completed a study. That's looking at, um, They're trending timeline for early hearing detection and intervention. Like how does that, how is it, how is their timeline? Are they meeting those, meeting those one, three, six milestones as compared to children without can you have facial differences?
[00:23:29] Um, And so I just collected that data retrospectively. And now I'm looking to get a grant to look at that data more carefully in a prospective manner. I'm also looking at children who are being treated for cancer and, and experienced ototoxic induced, hearing loss. That's one population where I hear all the time from.
[00:23:50] Um, pediatric audiologists. Oh, I want to even talk about hearing aids if I see hearing loss because the kid is going through so much, so it's a family. Um, so it's not even something I bring up and, and, you know, I disagree with that because if we're not giving the family the opportunity to pray or a ties hearing related needs, maybe it maybe they're right.
[00:24:08] You know, who knows, maybe they're totally right. And every family is 100% agreement with that approach, but we don't know that. And so I want to know that. So I'm. Preparing a grant, uh, for that particular population to explore that prospectively as well. Um, So I'm, I'm a mixed methods researcher. So I love qualitative and quantitative data.
[00:24:28] So what I'm trying to do is, is do these interviews so that I can develop a scale to, uh, I would love to be able to quantitatively measure priority as a clinical tool. Um, so that. You know, as part of our counseling, our family centered care, if we're seeing that data logging, instead of having the pressure on us to be like, do you even care?
[00:24:49] Cause obviously it's hard to ask that we can, we can give families a way to indicate on a survey, you know, right now hearing is not important to me as of. To just measure priority, to facilitate a way to open up that conversation between clinicians and families. So I'm just starting out my research career.
[00:25:11] So that's about where my vision ends, but that's, that's what I'm hoping to do.
[00:25:16] Todd Houston: Well, that's, that's a lot to tackle what you've just talked about. So I, I. Best of luck with all of that. I know, um, the challenges that can be there when you don't have that university support, uh, behind you. And you're trying to do this, uh, because you're, uh, you work for the hospital.
[00:25:35] And so that's, that's still a little bit different and they kind of view research is a little different than, than maybe the university does and they're not. So, you know, Best of luck with those grants. I think once you get some money rolling in with some grants, you know, they'll hospital will change their mind and then they can invest a little bit more in your time and letting you do some of that stuff.
[00:25:58] Yep. Well, JJ, it's been so great having you on the podcast. And is there a way for people to reach out to you maybe through the hospital website or. Or do you have another
[00:26:09] JJ Whicker: way? Um, so right now our, our hospital, our audiology website is actually under revision right now. We've had a big changes, so new, new faces.
[00:26:19] So, um, but if you were to, uh, email me, I can, um, do, is there a way that you just give that out to people? Or do you want me to just share it right here right now? You can do it right now. Okay. So my email is J J dot w H I C K E R. At gmail.org. Um, me, so I, I still am part of Dr. Karen Munoz's research laboratory.
[00:26:46] I'm her extension now. Uh, so we have a Facebook page it's called the, the hearing impact project research laboratory or the hip lab. We're on Facebook, we're on, um, Instagram and LinkedIn, the hearing impact project research laboratory. Um, so if you want to reach out to those venues that works as well.
[00:27:04] Todd Houston: Awesome. Well, best of luck to you and all that you're doing and, uh, hopefully in a year or so, you'll come back on and tell me about all the grants you've gotten written and got funded and all the new work.
[00:27:17] JJ Whicker: That sounds good. Thank you so much for having me.
[00:27:20] Todd Houston: Well, JJ is very, very impressive and I wish him the best of luck in his clinical work, as well as the research that he wants to do.
[00:27:30] And I really appreciate him being with us. I appreciate you listening to today's episode. If you don't mind. Please leave us a five star review. That way we can attract more listeners and continue to grow the podcast as well. If you would like to hear me interview someone on the podcast that you would like to hear from.
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