ROUGH EDITED COPY

EHDI

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PEDIATRIC HEARING AID USE CHALLENGES AMONG HISPANIC FAMILIES PRESENTERS: ANA CABALLERO AND KAREN MUNOZ

3/9/15

3:20-3:50 P.M. ET

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(This text is being provided in a rough draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.)

> Can you hear me okay?

Okay. Hello, everyone. Thank you for being here. My name is Ana Caballero, I'm have Utah State University and this is Karen Muñoz, from Utah State University as well. So as you may be aware of hearing aid fitting in infancy has become more common in the United States as early identification of hearing loss.

However, consistency of hearing aid use is an area -- still an area of concern for young children. As you can see here in this slide, spoken language is basically the outcome that we want to get. So that language -- speech and language development can be effective for different factors.

One of the most important factors is early intervention. The access to early intervention, it's a crucial component of this outcome as well as the auditory experience. When we mention auditory experience, we refer to the fact of having that consistency in the hearing aid use as well as having some of those challenges that parents may be having to manage the hearing aids of their children.

Language experiences is another important component that we need to consider, which basically means that, and studies have shown that families that have a higher social economic status, their kids are exposed to larger vocabulary during the day compared to those families that come from low social or economic status. As you can see here, parent challenges. Parents play a huge role in all of this process. Why? Basically because parents are the ones who need to learn new knowledge. They need to learn new skills. They also need to gain the confidence to manage effectively the hearing aids on a daily basis.

So as we can see here, as parent challenges increases, we see that there is a hearing aid use that decreases. So in this case, we found that most of the studies that have been done in trying to find out which are those challenges that parents have are studies done in white -- English, high social economic studies and nothing that tells us the challenges that Hispanic families are having. Some of the challenges parents have reported are activities, such as when their kids are on the playground or when their kids are in the car, child behavior, emotions accepting the hearing loss, the direct benefit of the hearing loss, parents comfort of managing the hearing aids or skills of the caregivers. When we see studies that report how is hearing aid use reported, we see that there was one study that studied kids from zero to three years old and we found out that only one third of those parents say that their kids were wearing the hearing aids during most waking hours. Another report showed that, Jones, 2013, shows that 4.4 hours per day were the average daily use of those hearing aids, which is concerning because studies also have shown that most of the parent reports overestimate the use of hearing aids. So it's a little -- it's a concern for us as audiologists because we may expect the results are really lower, these numbers may be lower. Also there is another study that also shows that fewer hours of use were reported with young children with milder hearing losses and with lower maternal education.

So now, as I mentioned before, most of the studies have been -- basically all of the studies have been only with English speaking families. Belonging to socioeconomic status medium to high. And there's nothing with Hispanics. So before we needed to know some factors that are very important to consider when we're working with Hispanic populations. It is also important to remember that by 2050, around 82% of the growth development will be Hispanics, so we need to be ready to serve this population. And their attitudes, their beliefs related to disabilities that may influence the outcome that we want to get with these patients. To effectively support the parent learning we need to be cultural sensitive to some of those factors, and there are cultural perspectives that we also need to remember. For example, we have language. As English speaking families are reporting some of those challenges, we can just change hats a little bit and just imagine how it will be if we also have a language barrier. There is also two important elements that are family related and the term is called familism and it's basically the fact that as Hispanics we have a very strong family relation and it's very important for us to have that nuclear -- those extended families around us. That is the important network that most of these families have. So we also need to consider them when we're providing services.

The term fatalism is referred to due to fact these patients, they believe they the disability will be just a cause of God's will and that something may happen during the process that suddenly they're just going to be able to hear again and they will not need to use hearing aids again. So why it's important to consider these aspects is because we first of all need to educate before, if we want to get to those outcomes that we were talking about at the beginning, to get to the spoken language, if that's our goal, we need to always consider those facts so we can start treating them with the appropriate way.

And then if we go to our professional guidelines for audiologists, professional practice guidelines, like ASHA, we have the American academy of audiology or the Joint Committee on Infant Hearing, they also say our services need to be family-centered. They have to be culturally sensitive and we need to provide the same quality and the same quantity to these families.

So as you can see, there is definitely a huge reason why we need to find out what is happening with this population.

So we use the -- to get these results, the learning and support, the first area we wanted to find out, we used a tool that is called Parent Hearing Aid Management Inventory. The English results for English speaking families will be presented tomorrow, but we did the translation -- not only the translation, but also we validated some of those questions via interview with some of these families. So these are some of the results that we found. So we have 18 families that participated in our study. The primary caregiver, 89% was the mom. Child lived with both parents and communication with audiologists, 56% of them reported that they needed some kind of help. And in most of the cases were interpreters. Their location, as you can see here, the high school -- the higher percentage is related to a very low educational level in this population. The same thing with the income. More than 50% were less -- family income was less than $20,000 per year. So when we go to see the child, to evaluate the child demographics, we find that the median age of the kids that participated in the study was 25 months with a range of three to 64. The duration of hearing used was 11 months and something that was interesting to see is that hearing aid fitting in 27% of those kids were older than six months. So we can see that this population is having late access to those services.

And the spoken language was 94% and let's see one thing here. We can see that the degree of hearing loss in the better ear, that's the one we consider, it's 28% -- around 28% was moderate and severe.

So what information do Hispanic parents need? Which are those frequently desired aspects that they didn't feel comfortable with? They wanted to know how can they tell what child can and cannot hear with and without hearing aids. So I think that's something that a lot of parents, after we give a diagnosis, we treat with hearing aids, a lot of parents still want to know that. So that's something that is also happening in this population. And then another -- then we have how to get loaner hearing aids, and that's -- it's a practice that is very common here in the U.S. and if a lot of these parents, they come from their native countries, we don't have that kind of option. So this is a percentage -- a very high percentage that they want to know more about this option that we operate at our clinics. How to help the child hear better in noisy places and finding financial assistance. Those were kind of the higher percentages that we found.

When we see -- when we tried to analyze which are some of those skills, the skills that they wanted to know more, we found out that how to do basic hearing aid maintenance, that's one of the highest percentages. And how to keep hearing aids on when the child resists. So it's funny because most of the time we fit with hearing aids and we pretend that everything is going to be okay, that child is going to be able to talk and that's the perfect outcome, right? But in reality we forget to tell them there are going to be a lot of challenges during that process, especially having a language barrier, having a cultural barrier, it's even harder for this family, so they definitely need more support.

And so in this population, the challenges that we found were fear of losing hearing aids. So we had some experiences during the summer, their data logging numbers go down. And because kids they want to play around. They want to be kind of playing with water with the rest of the siblings, and what is happening? Parents are so paranoid they're going to lose those hearing aids, so they just take them out and then don't put them during the summer or decrease the amount of hours that they use them during the summer.

Another tough challenge was frequent feedback. And distractions with needs of other children at home. So as you can see, basely the top was fear of losing those hearing aids and the frequent feedback.

So then another of the questions that we asked, it's how do Hispanic parents -- what they want, what do they need? What do they want from us as audiologists?

And we found out that 39%, they wanted the audiologists to check in more often. They wanted them to check and see how things are going, how they can help or support them.

We also found out that they needed help to monitor some of those problems, and 28% from 18 of the participants, they said that they wanted more time to talk about how they were feeling. And I think this is a very important component in this, not only in the Hispanic population but I think in general. It's kind of always considering, like, the hat -- which hat are we wearing? At that point we're professionals, but probably we are also parents. So kind of always considering, like, the emotional part, it's important to create that rapport with this population, which at the end will be a benefit for us, because they're going to have that close relationship with us and at the end we are the ones -- the kids have benefited as well us because we're getting the outcome that we really want to get.

Facts and opinions, provide me with complete resources. This was interesting. Teach me a way I can learn and talk in a way I can understand. So if we go back to the results, we can remember that if they have -- they come from very low educated background and at the same time they have low income, like most of these families have low income, so the level that we need to educate them, the level that we need to start providing services is at a level that they can understand. And that's something very important that we have to consider with this Hispanic population.

So we go to -- if we go to the clinical implications, why is this important? How is this going to help?

Because if we go back and we consider some of the results we found, there are some suggestions that we can apply in our clinical settings in order to get those outcomes that at the end is spoken language and being a child successful in communication. So here we see, like, family considerations. We have -- if we have a low educational level and some of the parents they show that, asking that they wanted to have someone teach them in a way that they can learn, so some of the suggestions that we can use with this population is, okay, so let's provide them with information at an educational level that they can understand. And let's do it not only with the mom, that is the frequent -- we found that it was the caregiver that spends most of the time with them, but also let's do it with grandpa, with uncle, with aunts, whoever is in charge of that child, because we need that family to work together, and if we go to their values and some of their cultural aspects, we can find that they are -- that's their network of support, so we cannot just consider mom and dad as an isolated couple. They need that other component in order to succeed.

If we go to family income, we found that if they come from low family annual income, so what do we need to do? Provide information about funding resources and programs. And here I want to make a quick comment, and it's something related -- probably something that could be very simple, but in reality, for the Hispanic population, and I can say from my Hispanic community, it is also very important the fact that we also need to tell them prices at some point. For example, we're telling them they need to change earmolds every four to five months, we also need to consider that probably that is going to be an extra expense that they need to do of 160, $170 a pair. So it's important to always provide them with resources, but there are always financial options, there are always plan of payment, so they will not just consider not to come to the consider because they don't have the money to do it.

And then the English proficiency level, the same thing. Most -- a high percentage of them replied they needed an interpreter or help to communicate with the audiologist. And they can show some of their responses. They say they want the audiologist to talk in a way that they could understand.

And here, some of the suggestions would be to have an interpretation service available for your -- for the clinic, and also provide written resources in the native language. That's very important because if -- just kind of going back to the scenario where we have a mom, we're telling them there is a hearing loss, it's a huge impact emotionally, that diagnosis. It's given in a language that is not hers. And then at the end, she just stops listening to whatever we were telling her and then she doesn't have anything else to kind of go back and explain to the rest of the family. So the written information in the native language is something very important.

And then the opportunity to talk about their feelings, thoughts and opinions. That's another consideration. And they show it when they said that they wanted to have an audiologist to check in more often, to find out if they needed more support. So what can we do? Some of the suggestions could be to ask parents how they are doing, find out what is important to the parents, because even though they all belong to the same Hispanic community, they also come from different countries. And even though we are all Hispanic, it's not the same thing. Someone from Argentina, some from Mexico, someone from Guatemala, so it's important to ask them, what are some of those needs? And include parents in decision making and problem-solving. That's something very important.

I added two quotes and one was, "I want my audiologist to be patient with me." And another one that I was very interested in is... "I want to have more time with the audiologist." Some expressed the fact they had to wait a long time to see the audiologist and that's something they also would like to have, regular checks or regular visits more often.

Some other considerations are the child's age when we fit the hearing aids, so we can see that most of them were at 27%, a very large percentage were older than six months. So the same thing, try to provide hearing, written resources about hearing loss, hearing aids. There is a roadmap that we can always use. I don't know -- I haven't checked if we have a Spanish version of that roadmap, but it's always a good idea to kind of guide them in the steps in their own language, so they can return to their follow-up or whatever other visits we want them to come. And then meeting other parents with children with hearing loss, that's important. I added this quote because it was interesting to see -- I remember one mom in one of those surveys, she said, are there any other Hispanic families with children with hearing loss? Can I meet them? So at that point they were saying, I don't -- I don't want to feel that I'm the only one, and when we give the opportunity to meet other parents that are going through the same process, even at different stages, the ones that are already going through those stages can help the ones that are just starting.