ROUGH EDITED COPY

EHDI Conference‑Hands & Voices‑Baby's First Test Project

3/10/15

CAPTIONING PROVIDED BY:
ALTERNATIVE COMMUNICATION SERVICES, LLC
P.O. BOX 278
LOMBARD, IL  60148

NOTE FROM CAPTIONER:  
(Standing by).
>>  Hello.  We are getting ready to start.  I'm Katie.  I'm going to be the moderator.  If I didn't catch you when you were coming in the door with an evaluation, I will pass it out.  They are really important to give under the circumstances some feedback for the conference.  So this is the Hands & Voices Baby's First Test Project.
>>LISA KOVACHS:  Hello, everyone.  It is the end of the day.  My goodness.  3:30.  That sounds terrible.

Yeah.  Test?  There I am.  Oh, my gosh, I'm loud.  My family says that about me, too.  Good afternoon.  I'm Lisa Kovacs, the director of programs for Hands & Voices.  And in this next 30 minutes I'm going to be talking about a unique project that Hands & Voices engaged in in this past year and it was called Baby's First Test.  And it was made through a generous, generous grant through the Genetic Alliance.  So the project Baby's First Test into new and existing outreach engagement in educational efforts so we were doing this in some of our chapters so we thought this was a really good match when we saw the grant opportunity.  The project goal was for Hands & Voices to ensure that all babies who refer on their newborn hearing screening follow through with EHDI guidelines, the 1‑3‑6, and also to create and broadcast a training webinar that we did with all the states that participated, as well as we disseminated Hands & Voices Loss & Found DVD and I will talk a little bit more about DVD in the minute, the wish list for screeners that we developed from a parent perspective, and then also a bookmark of resources that we developed at Hands & Voices and then the Baby's First Test information that they already have in their office.  And then we did this through our Hands & Voices chapters.  We connected with our American Academy of Pediatrics Chapter Champions and our EHDI coordinators and the goal was to distribute all of these materials to 90 states across ‑‑ 90 sites across the United States in 30 states.

So 3 sites per state.

This was our project timeline, started March 1st, so we were charged with identifying 30 disseminators and that could be the chapter leaders in our chapters, it could be an EHDI coordinator, it could be the AAP Chapter Champion, combination of people, in most cases it was a team effort.  But we did it in a state, Rhode Island is not a state where we have a Hands & Voices chapter right now, but the EHDI coordinator was interested so she engaged in this process with us.  And we also recruited and talked about this information last year at the EHDI conference, and the timing was just perfect for us to disseminate the information during the EHDI conference.

And then we created our resource materials and the packets because it was 90 packets that we had to put together.  And then we created the training webinar for the disseminators and we did that both online webinar and then we recorded it.  So anybody who couldn't participate in the webinar, it was recorded for them to view later.  But we did ask that anybody who was going to be disseminating the information, that they had to show proof to us that they had gone through the training webinar.

And then through the months of June and July we disseminated the packets to the 90 sites, I'm going to keep saying that, and then we provided an online evaluation tool and we wanted to have that completed by August 1st.

So our commitment to the project through The Genetic Alliance, the commitment of the disseminators was for them to agree to the informal training, to make sure that they got the packets, they looked at their timeline and their work that they were doing to make sure they could get this information disseminated during the project timeline of June 1st through July 30th, and then that they would provide accountability back to us at Hands & Voices headquarters about the sites that they distributed their information to, the contact person at those sites, and that they would complete the evaluation tool.

So these were the resources we distributed.  So the Loss & Found video.  I know that a lot of you are familiar with that.  If you are not familiar with that it is up on our Hands & Voices website so you can view that video there.  It is a video about the importance of followup after newborn screen from a parent's perspective.  It is a video that interviews several parents about their newborn screening process.  We also created a training PowerPoint for the disseminators that they could use that could, if they wanted to go in and work with their EHDI coordinator or the state level people who trained the screeners, it is a training ‑‑ it is a PowerPoint that they could use that we have created at Hands & Voices to give them support to talk to screeners from the parent perspective.  We created this bookmark of resources and the Baby's First Test information.

So the contents of the packet, every site receives 7 of the DVDs, so they could use those in any way that they wanted to use them.  A lot of them asked for permission to upload them on the hospital channels so that it could just be a constant loop.  50 bookmarks to distribute to families.  The Genetic Alliance information, the Baby's First Test information.  There was a Loss & Found order form, so if they wanted to get more than the 7 DVDs, they could order those from the Hands & Voices organization and then there was a site packet and letter with instructions to the site on how they might use these tools with families.  

So some of the sites that were looked at were hospitals, birthing centers, prenatal classes, the state EHDI Task Force and some of our states had not gotten this information even to their EHDI Task Force so they wanted to declare that as one of their sites.  Home visiting programs and some data that show you some really unique groups that some states decided to reach out to.

So we ended up having 28 states, 30 agreed, but because of personal life issues, 2 ended up not being able to follow through, but we were proud to say that 28 states participated.  And if you see the 82 different sites when we collected the data on who they disseminated to, it was really exciting to see like we got into a NICU discharge class and it became part of their parent education.  So I'm a NICU parent recipient and I remember the parent education that I received, but I didn't receive anything about understanding newborn hearing screening.  So we worked with one, I thought that was a really unique site that they chose.  A WIC office.  So one of our states is now having their WIC office disseminate this information.

A parent support group, a nurse training program, which I thought was good.  You see some of your really, you know, common places, like 12 doctor or pediatrician offices, 5 prenatal and childbirth classes.  I'm a real proponent of that.  We hear the statistics of, you know, whatever it is, 97, 98 percent that we are screening babies, but I think it starts before then.  I think that all parents need to know that their child is going to be screened at birth and so I think it was really exciting that through this project we were able to disseminate this information on even before babies were screened.

So then unfortunately we only had about 2 weeks.  We were on a really tight timeline, so after completion of disseminating the information, there was only about a 2‑week window before we had to have data back to the Genetic Alliance.  But out of the 82 sites we had a short survey of 8 questions, and we did have about, I think, 33 was pretty common on par ‑‑ 33 responses of the 82 sites who actually gave us some survey information.  And so here is one of the first questions we asked, the information I receive will be an effective educational tools with family.  We are closed to knowing that no one said no.  That was good information.  We had an overwhelming 81.8 percent that said yes.

The individual providing the information to my organization were knowledgeable about the information shared.  So here we were trying to measure did our training webinar hit the mark.  And did we pick appropriate disseminators of the information.  So we had 93.8 percent, and this one answered yes, so that was really good, and only 6 percent that said not sure.  How many families do you predict will have the opportunity.  We had to say predict because there was such a short window of time from the time they disseminated the information, there wasn't enough time to measure like that would be good for us to be able to go back a year later and measure what are families telling you about the information.  Will have to gain information, the information in this packet annually through this organization.  So we wanted to know how many families they actually touch.  So as you see the numbers, they were pretty ‑‑ some of the centers were larger where they saw more patients during the newborn screening process and others were smaller.  Percentages of families.

In your opinion, how would you rate the usefulness of each tool with families.  And so you know, we just got ‑‑ there looks like there was a couple of nay‑sayers down there.  We had one that didn't think the Loss & Found DVD would be helpful at all, and 2 that didn't really think the bookmark of resources would be helpful and then The Genetic Alliance.  So it is, you know, those 2, you probably think those were probably the same people and I'm not really sure, maybe they were different.  But an overwhelming amount of people that responded with highly useful.  

And so then some open‑ended questions like is there additional information, products you need or utilize in supporting families through the newborn screening process.  So a website.  So this is for all of you that are professionals in here, this is probably good information for you.  The web address that they could watch the video right from there instead of taking the DVD home or getting it lost or never getting it returned back to the site.  And so for those locations that asked permission to upload it on their looping channel, we were happy to provide permission for that.  That's probably the best way to utilize the tool.  

Information to target our at‑risk population who do not trust the medical community and may not grasp the importance of followup.  So I guess I hadn't ever really thought of that.  We get them back at the appropriate times of those kids who pass, but we are at risk.  And maybe some of these tools would be good to send whatever your followup with those at‑risk kids are, but to ask maybe to partner with Hands & Voices to see what kind of tools we might be able to provide to you from the parent perspective to help encourage those families to get back in at the appropriate followup times.

Showing a video or a photo of a baby having the diagnostic evaluation.  So I thought that was interesting.  And I just left this ‑‑ a really great session that had some just YouTube videos and that would be a really great thing.

Needed in multiple languages.  We have, ‑‑ the DVD is in Spanish and English.  We know that there is a lot more languages out there that, as you can imagine, that's a thing to tackle, but something we can take on at Hands & Voices.

Posters for waiting rooms.  A shorter version of the video.  So it is 8 minutes long, is that right, 8 minutes?  I see you in the back?  7?  Okay.
(Laughter).
It is really only 7 minutes and 43 seconds.
(Laughter).
And more of the bookmarks.  We have had lots of requests for additional bookmarks.  And I'm looking to further collaborate with our state UNHSI program to be rolling out to various programs.  Some people say only 3, we want to go to 6.  And we found that to be really exciting.  

Through the project I gained knowledge of the parents' perspective on the newborn hearing screening and why it is important.  We did have 4 that said no.  We had 27 that responded yes.  So it would be interesting to find out because we felt as if it was really parent‑driven.  So I don't know if that was in, you know, maybe one of the disseminators was a professional and it wasn't being collaboratively done with their Hands & Voices parent leader.  I'm not sure.  But that's something definitely for us to think about.

And then we wanted to measure how aware were these sites of Hands & Voices.  And so I had previous knowledge of Hands & Voices as an organization, and if not, do you know how to get in contact with your Hands & Voices organization, and we only had one that said no.  And so it looked as if they had good information about us and then obviously our information was all over the resource materials as well.

So then we also wanted to survey the disseminators to find out what they thought about the project.  And so the training webinar on this project was helpful.  That was one of the questions that we asked the 28 states that agreed to partner with us on this.  And overwhelmingly, everybody thought that training webinar was helpful to them.  

The materials I received were supportive of my commitment to the project.  Same thing, 21 ‑‑ the full 21 that responded said yes.  Would you like to be involved or see other Hands & Voices projects distributed in this fashion, and we had 19 say yes, 2 that said no.

My questions about this project were answered in a timely manner.  Everyone said yes.  That's good.  Because I was in charge of the project.
(Laughter).
I received support in this project through my state EHDI coordinator or our AAP EHDI Chapter Champion, 14 that said yes and 5 that said no.  So we still have some work to do through this project.  We also provided talking points to ‑‑ if it was a chapter leader that was disseminating to this, reach out to the EHDI coordinator and the AAP Chapter Champion, so we had a couple of goals.  Obviously, we wanted to get this information out there, but it is also really important to make sure that we are getting that connection with our AAP Chapter Champions and EHDI coordinators.

The site locations were receptive to the information.  I think if there was any apprehension to this project, I think this would probably be what they were most afraid of.  When I set up an appointment to take this information to the site, are they going to be receptive to the information I'm bringing.  And so I'm glad to see that they were able to build some confidence that 20 of them felt as if the sites were really receptive to the information.

I feel as if the site locations are committed to using the materials.  So once again, they had 18 that felt as if, yes, they were committed.  And this is 18 of the 20 who answered the question.

And then this project will assist with loss to follow‑up in my state and 19 out of the 21 felt as if this project was helpful.  Here is some of the really good stuff.  From the respondents we asked for 2 successes.  So working easily with local audiologists to find dissemination sites.  So they felt very supported in where the best, you know, in most cases it wasn't the best, it was which sites need this information the most, and that was exciting.

In the whole project, I find the whole project was a success based on this one next bullet point, and so through this project, one location recognized that they had absolutely no protocols for hearing screening at their facility when we went out to disseminate the information, and they developed those protocols because of this project.  So we were really excited to see that.

One location didn't realize there was a problem with families following up after a referred screen.  They had an assumption that all families followed up.  Connecting the key leaders involved with expecting and new parents and sharing this information, as well as an opportunity to introduce their Hands & Voices chapter.

Getting involved with local prenatal classes, their leaders, and expecting parents.  So we have been, you know, looking for ways, we know that's an audience we want to reach and having these tools gave us a mechanism to reach out to them.

Those who watched the video with me were really touched by it and felt that it was reassuring and empowering.  One respondent said that it was an opportunity they had been involved in their NICHQ project and an opportunity to get back with their members of the NICHQ team and the new connections within their WIC offices.  So that I think that once again, we talk about that that's a group that we want to reach out to, but the fact that this ‑‑ these resources gave us that end to that door was really good.
 
This project was presented to our EHDI Task Force, so all members are aware of our participation in this important project, and also tied nicely in with a NICHQ PDSA's, and they used this as one of them.

One hospital had had it, I guess the DVD, but didn't know how much it was being used.  Now, they have a checkoff in the computer system and another hospital was really receptive and happy to have a visit.  So they already had the tool, but they weren't really utilizing it.

I connected with 2 new providers new to Hands & Voices, the nurse family partnership and midwifery practice.  We know those are 2 vital groups to the work that we do.

Willingness to incorporate the materials in prenatal classes again.  Connected in person with hospital screeners in remote areas.

So I know that I have had the opportunity in my own state to connect with screeners from my parent perspective and I feel like that was a very valuable experience, and I think this respondent is feeling the same way.

It was a concrete example of what family support looks like.  It helped answer questions from a parent perspective and could help them understand next steps for families in this area.  And then nursing doing first screen will start seeing this video, so they are not only using the video to train the parents, but using the video to train screeners.  That can only ‑‑ screening is often seen as an annoyance by busy nursing staff, asking to screen otherwise healthy infants.  So not a slam to nurses, but in this particular case they felt like it could be utilized as a great tool for the screeners.  

Our biggest success when I look at the whole project is we had a hospital who had no protocols in place, and they have that.  87 percent of the sites who answered the survey stated that they gained knowledge on the parents' perspective of newborn hearing screening through this project.  So what an opportunity that we had 28 states participate, you know, and that 87 percent of those sites that we reached out to now have gotten the opportunity to hear it from the parent perspective.

And the project demonstrates Hands & Voices' capability to disseminate a national project in an accessible and timely manner.  So, you know, all of our chapters are at all different levels of capacities.  Some have paid staff positions, some chapters are all volunteers.  They are trying to fit this into busy lives of raising their children and so when we signed up for this grant we knew we had a way with 47 chapters out there, we knew that we had a way that we could do something widespread across the United States, but we just didn't know at what capacity our chapters could do this because it is not like we pay our chapters to work for us.

And so what was interesting that we found from Hands & Voices headquarters is they loved being given a project that they knew was meaningful, made a difference, and we gave them all the tools to go do it.  So we feel that this really demonstrated that we wanted to do more work like this.

So I guess the question I have for any of you in the audience if you are a professional is, how do you include parents, the parent perspective in your newborn hearing screening training?  And I would need you to come forward, if you would like to participate.  Does that mean no one does, or you are tired and don't really want to walk forward?

All right.  Instead, let me change this.  Is there anybody in the room that has participated in helping ‑‑ all right.  Do you mind?
AUDIENCE MEMBER:  (off mic).
NOTE FROM CAPTIONER:  I have no audio.  I will stand by.
(Standing by).
>>LISA KOVACHS:  They may have some of that information.

Okay.
AUDIENCE MEMBER:  (off mic).
>>LISA KOVACHS:  Sure.  2 sounds like that would have been, I would have loved to have that up as one of the dissemination sites.  I don't know if there is a capability to do remote screening in the tribe itself, but certainly something for us to consider in a unique situation like you all have.  Thank you.
AUDIENCE MEMBER:  (off mic).
>>LISA KOVACHS:  I didn't think the captioning was on.  Thank you.  Okay.  I have got time for one more question.
AUDIENCE MEMBER:  (off mic).
>>LISA KOVACHS:  So the question is ‑‑
AUDIENCE MEMBER:  (off mic).
>>LISA KOVACHS:  Sure.  So we do have ‑‑ we share liberally with our Hands & Voices chapters the PowerPoint that we have.  So the question was is the training PowerPoint that we have to go in and work with screeners from the parent perspective, and yes, we do have that and we will absolutely share that with our chapters.
AUDIENCE MEMBER:  (off mic).
>>LISA KOVACHS:  So the question is did we find through this project that parents whose babies were screened in the room had a different response or gave any responses to how that made them feel versus the baby being taken out into the nursery or if it was done in the NICU setting with the parents not there.  We did not measure that through this project, but certainly something for all of us to be thinking about and encouraging.  That's probably something we can maybe add to our from the parent perspective, training PowerPoint, to screeners.  Because I think the answer probably is that parents like to be there.  I think that's what you are probably trying to get to.

All right.  Well, for the sake of time I'm going to go ahead and end today because I know you all want to get home at some point today or maybe staying over for another meeting tomorrow.  But thank you very much.

(Applause)

(Session concluded).