Lisa Kovacs Hands & Voices Headquarters
Director of Programs [email protected]
Hands & Voices Baby’s First Test Project
EHDI ANNUAL MEETING 2015
Hands & Voices would like to thank The Genetic Alliance:The Hands & Voices Baby’s First Test Project was made available through a
generous grant from the Baby’s First Test Challenge Awards throughThe Genetic Alliance.
Genetic Alliance – Challenge Award Baby’s First Test
Project Description: To integrate Baby’s First Test into new and existing outreach, engagement, or educational efforts.
Project Goal: Hands & Voices goal is to ensure that all babies who refer on their newborn hearing screen follow through with the EHDI Guidelines screened by 1month – identification by 3 months – enrolled in early intervention by 6 months.
Overall Project Objectives:1. Create and broadcast a training webinar on dissemination of the Hands
&Voices Loss & Found DVD, “Wish List for Screeners”, bookmark of resources, and Baby’s First Test information.
2. Through Hands &Voices chapters and AAP EHDI Chapter Champions, provide the above mentioned materials to 90 sites across the US.
© Hands & Voices 2015
Project Timeline March 1, 2014 – August 15, 2014
Objective Timeframe Identify 30 disseminators (H&V Chapters or AAP EHDI Chapter Champions)
By May 1st
Create resources materials for packet dissemination
By May 15th
Conduct training webinar for disseminators By May 15th
Disseminate packets to 90 sites across the US June – July
Provide an on-line evaluation tool By August 1st
© Hands & Voices 2015
Project Commitment Agreed to participate in one informational training
webinar
Agreed to disseminate the informational packets to 3 sites of their choice 6/1/2014 – 7/30/2014
Agreed to provide accountability back to Hands & Voices including site locations and dates of dissemination by 8/05/2014
Completed the evaluation tool at the end of the project
© Hands & Voices 2015
Resources and Materials
Baby’s First Test Information
© Hands & Voices 2015
Content of Packets
SITE PACKETS:
• 7 DVD’s
• 50 bookmarks
• 1 each – genetic alliance
(1 brochure, two post cards, one poster folded in half paper clipped together)
• L&F order form
• Site packet letter with instructions
Hospitals Birthing centers Prenatal classes State EHDI
taskforcesHome Visiting
Programs Other relevant
groups
© Hands & Voices 2015
EvaluationSurveyed both:1. Sites who received the information 2. Participants who disseminated the information
28 states participated: CO, CT, DE, GA, HI, ID, IL, KY, LA, MD/DC, ME, MI, MN,MO, MS,ND, NE, NM, NV, NY, OH, RI, SC, TN, TX, UT, WA
82 Different Sites:44 Hospitals - 1 Birthing Center – 5 Prenatal /Childbirth Classes –12 Dr. /Pediatrician Offices – 2 Home Birth Centers – 8 EHDI Programs – 1 NICU Discharge Class – 1 Home Visiting Nurse Program – 1 WIC Office – 2 EI Programs – 1 Speech and Hearing Center – 1 Nurse Training Program – 1 Parent Support Group – 2 Audiology Departments
© Hands & Voices 2015
82 sites: 8 Questions - Short Survey Period
Re sp o nse Pe rce nt
Re sp o nse Co unt
81.8% 270.0% 018.2% 6
330sk ip p e d q ue stio n
No
T he info rma tio n I re ce ive d will b e a n e ffe c tive e d uca tio na l to o l to sha re with fa milie s .
a nswe re d q ue stio n
Yes
Not Sure
Answe r Op tio ns
Yes
No
Not Sure© Hands & Voices 2015
Re sp o nse Pe rce nt
Re sp o nse Co unt
93.8% 300.0% 06.3% 2
321sk ip p e d q ue stio n
No
T he ind iv id ua l(s ) p ro v id ing the info rma tio n to my o rg a niza tio n we re kno wle d g e a b le a b o ut the info rma tio n sha re d .
a nswe re d q ue stio n
Yes
Not Sure
Answe r Op tio ns
Yes
No
Not Sure
© Hands & Voices 2015
© Hands & Voices 2015
05
101520253035
Loss & Found DVD Bookmark of Resources Genetic Alliance/Baby’s First Test information
Highly useful
Useful
Somewhat useful
Not useful at all
H ig hly use ful Use ful So me wha t use ful
No t use ful a t a ll
Re sp o nse Co unt
17 10 3 1 3112 9 7 2 3010 12 5 2 29
312sk ip p e d q ue stio n
Bookmark of Resources
In yo ur o p inio n, ho w wo uld yo u ra te the use fulne ss o f e a ch to o l with fa milie s :
a nswe re d q ue stio n
Loss & Found DVD
Genetic Alliance/Baby’s First Test information
Answe r Op tio ns
© Hands & Voices 2015
• A website that we could give the web address and they could watch the video right then instead of taking the DVD home and it getting lost and never viewed.
• Information to target our at risk population who do not trust the medical community and may not grasp the importance of following up.
• Showing a video or photo of baby having the diagnostic evaluation.• Needed in multiple languages especially Hmong. • Poster for waiting rooms.• A shorter version of the video.• More of the bookmarks. • I'm looking to have further collaboration with our state UNHSI program
on rolling out to various hospitals and programs.
Re sp o nse Co unt
101023
Is the re a d d itio na l info rma tio n/p ro d ucts yo u ne e d o r co uld uti l ize in sup p o rting fa milie s thro ug h the ne wb o rn he a ring
Answe r Op tio ns
a nswe re d q ue stio nsk ip p e d q ue stio n
© Hands & Voices 2015
Re sp o nse Pe rce nt
Re sp o nse Co unt
87.1% 2712.9% 4
312sk ip p e d q ue stio n
T hro ug h this p ro je c t, I g a ine d kno wle d g e o f the p a re nt’s p e rsp e ctive o n Ne wb o rn He a ring Scre e ning a nd its imp o rta nce .
Answe r Op tio ns
YesNo
a nswe re d q ue stio n
Yes No
© Hands & Voices 2015
Re sp o nse Pe rce nt
Re sp o nse Co unt
96.9% 313.1% 10.0% 0
321sk ip p e d q ue stio n
No
I ha d p re v io us kno wle d g e o f Ha nd s & Vo ice s a s a n o rg a niza tio n? If no t, d o yo u kno w no w ho w to co nta c t Ha nd s & Vo ice s?
a nswe re d q ue stio n
Yes
Need More Information
Answe r Op tio ns
Yes No Need MoreInformation
© Hands & Voices 2015
28 States – 16 questions Sample of their survey responses
Re sp o nse Pe rce nt
Re sp o nse Co unt
100.0% 210.0% 0
210
a nswe re d q ue stio nNoYes
Answe r Op tio ns
sk ip p e d q ue stio n
2. T he tra ining we b ina r o n this p ro je c t wa s he lp ful?
Re sp o nse Pe rce nt
Re sp o nse Co unt
100.0% 210.0% 0
210
Answe r Op tio ns
sk ip p e d q ue stio n
3. T he ma te ria ls I re ce ive d we re sup p o rtive o f my co mmitme nt to the p ro je c t?
a nswe re d q ue stio nNoYes
© Hands & Voices 2015
Re sp o nse Pe rce nt
Re sp o nse Co unt
90.5% 199.5% 2
210
a nswe re d q ue stio nNoYes
Answe r Op tio ns
sk ip p e d q ue stio n
5. Wo uld yo u like to b e invo lve d /se e o the r H&V p ro je c ts d is trib ute d in this fa shio n?
Re sp o nse Pe rce nt
Re sp o nse Co unt
100.0% 210.0% 0
210sk ip p e d q ue stio n
6. My q ue stio ns a b o ut this p ro je c t we re a nswe re d in a time ly ma nne r?
a nswe re d q ue stio nNoYes
Answe r Op tio ns
Re sp o nse Pe rce nt
Re sp o nse Co unt
73.7% 1426.3% 5
192
Yes
Answe r Op tio ns
sk ip p e d q ue stio n
7. I re ce ive d sup p o rt in this p ro je c t thro ug h my s ta te EHDI Co o rd ina to r a nd /o r AAP EHDI Cha p te r Cha mp io n.
a nswe re d q ue stio nNo
© Hands & Voices 2015
Re sp o nse Pe rce nt
Re sp o nse Co unt
95.2% 204.8% 1
210
NoYes
sk ip p e d q ue stio na nswe re d q ue stio n
9. T he s ite lo ca tio ns we re re ce p tive to the info rma tio n?
Answe r Op tio ns
Re sp o nse Pe rce nt
Re sp o nse Co unt
90.0% 1810.0% 2
201sk ip p e d q ue stio n
a nswe re d q ue stio n
10. I fe e l a s if the s ite lo ca tio ns a re co mmitte d to us ing the ma te ria ls?
NoYes
Answe r Op tio ns
Re sp o nse Pe rce nt
Re sp o nse Co unt
90.5% 199.5% 2
210sk ip p e d q ue stio n
13. T his p ro je c t wil l a ss is t with lo ss to fo llo w up in my s ta te ?
a nswe re d q ue stio nNoYes
Answe r Op tio ns
© Hands & Voices 2015
From Respondents – Top 2 Successes Working easily with local audiologist to find dissemination sites.
One location recognized they had no protocols for hearing screening at their facility.
One location didn't realize there was a problem with families following up after the referred hearing screening.
Connecting with key leaders involved with expecting and new parents and sharing this info, as well as introducing our Hands & Voices chapter.
Getting involved with local prenatal classes, their leaders, and the expecting parents.
Those who watched the video with me were really touched by it, and felt that is was reassuring and empowering.
Reconnecting with members of NICHQ project.
New connections with WIC office.© Hands & Voices 2015
This project was presented to our EHDI Task Force, so all members are aware of our participation in this important project and it also tied in nicely with the NICHQ PDSA's that our group worked on.
One hospital had it, but didn't know how much it was being used. Now they have a check-off included in their computer system. Another hospital was really receptive and happy to have the visit.
I connected with two new providers (new to H&V) - in the Nurse Family Partnership and the midwifery practice.
Willingness to incorporate material in pre-natal classes. Connected in person with hospital screeners in remote areas of our state. Helped to answer questions from a parent perspective and could help
them understand next steps for families in their area. A concrete example of what family support looks like. Nurses doing first screenings will start seeing this video. That can only
improve their attention to EHDI. Currently screening is often seen as an annoyance by busy nursing staff asked to screen otherwise healthy infants.
© Hands & Voices 2015
Highlights from the Project:
One location that didn’t have NBHS protocols in place, now does because of the site receiving the project information.
87% of the sites who answered the survey stated that they gained knowledge of the parent’s perspective on NBHS through this project.
The project demonstrates Hands & Voices capability to disseminate a National project in an accessible and timely manner.
© Hands & Voices 2015
How do you include the “parent perspective” in your NBHS training?