Transcript A Systems Approach to Parent Education

Informing Parents About
Newborn Hearing Screening:
Hidden Problems, Practical Solutions
Terry Davis, PhD
Department of Pediatrics & Medicine
LSU Health Sciences Center-Shreveport
February 19, 2004
EHDI Communication Stages
Initial
Screening
Retest
Early
Intervention
Informational, psychological and geographical
needs vary.
UNHS Parent Education Background
 UNHS legislated in 37 states
 Parent education materials available in 47 states (41 websites)
 Parents’ awareness low (Public health education is limited)
 Primary providers lack adequate information, materials, time
 EHDI program component #6 - appropriate parent information
 JCHI advices EHDI to develop family information materials–
accessible, languages other than English, appropriate for parents
w/ low literacy
 AAP recommends states mandate that hospitals provide parents
w/ information (who, what, when?)
EHDI Parent Education Challenges
 No standard protocol or guidelines for parent
education or evaluation
 Best practices yet to be identified
 Families of newborns represent a variety of
cultures, SES, languages and literacy levels
 Auditory technicians may lack parent
education/communication training
Hidden Barriers to Informing
Parents about EHDI
Patients:
 Education/Literacy/Language
 Health Literacy:
An individual’s capacity to
• Obtain, process, understand basic health
information and services
• Make appropriate health care decisions (act on
information)
• Access/navigate healthcare system
Patients/providers:
 Agendas/communication styles / knowledge level
Health communication
Hot national topic
Healthy People 2010
 Improve health communication/health literacy
IOM: Health literacy top 20 priority area
 More comprehensive approaches to health
information delivery; quality standards are needed
 Materials tailored to specific audiences with attention
paid to culture and language
JCAHO (1993); Balanced Budget Act (1997)
 Patients must be given information they can
understand
“Today, low health
literacy is a threat
to the health and
well-being of
Americans and to
the health and
well-being of the
American medical
system.”
Dr. Richard Carmona,
U.S. Surgeon General
AMA House of Delegates meeting, June 14, 2003
National Adult Literacy Survey
• n = 26,000
• Most accurate portrait of
literacy in U.S.
• Scored on 5 levels
1993 National Adult Literacy Survey
17%
32%
Level 3
Level 4
Level 1
Level 2
27%
Level 5 - 3%
21%
Wash., DC
Boston
Chicago
Los Angeles
37%
28%
37%
37%
Video
• Healthcare is
increasingly a written
culture.
• Understanding health
information is a
common problem.
• Self care can be
overwhelming for
people with low literacy.
Who is in Level 1?
LOW
LITERATE
•Medicaid recipients 41%
(over 1/3 births)
•Immigrants
MARGINALLY
LITERATE
•High School drop-outs
•Some H.S. graduates (25%)
LITERATE
Mismatched Communication
Provider Process: Giving information
Patient Process: Understanding, remembering, and acting on
information
Provider/Patient
Communication Challenges
 40-80% of medical information is
immediately forgotten.
 Almost half of information is remembered
incorrectly.
 The more information given, the more
information forgotten
Journal of the Royal Society of Medicine 2000
Low Literate Diabetic Patients Less Likely
to Know Correct Management*
Know symptoms
of low blood sugar
(hypoglycemia)
Know correct action
for hypoglycemic
symptoms
0
20
40
60
Percent
*Williams et al., Archives of Internal Medicine, 1998
80
100
Communication Barriers:
Cancer control “lay” terms and concepts
Terms not understood
Screening / Blood in Stool
Colon, Bowel, Rectum, Prostate, Cervix
Polyp / Tumor/ Growth / Lesion
Believed Screening not needed if…
 Older
 Not having sex
 Look /feel well
 Have no symptoms
1 in 4 did not know mammogram
(Thought Mammogram=Pap test)
Davis T, et al., Cancer Investigation, 2000, Davis, T el al ,Cancer ,1996; Davis T , Ca Cancer J
Are Parents Able to Read & Understand
EHDI Terms/ Concepts ?
616 public health moms
Brochure Words
•
Disease
•
Abnormal
•
Diagnosis
% Unable to read
4%
11%
23%
Terms & Concepts
• “Cognitive development”
• “Evoked Otoacoustic Emissions Testing”
• “Auditory Brainstem Response Testing”
• “Diagnostic Referral”
• “Pediatric diagnostic audiologist”
• “Audiological evaluation”
• “Early intervention services”
• “Amplification technology”
Impact of Literacy & Health
Literacy on EHDI Education
Parents with low literacy
 Often try to hide literacy problems
 Ask fewer questions
 Can’t read/understand most materials
Do most parents have limited EHDI health
literacy?
 Have limited EHDI knowledge
 Popular baby books have limited EHDI information
Simplifying Written Materials:
Will it make a difference?
Immunization Knowledge
Score By Polio Pamphlet Read
CDC
100
90
80
70
60
50
40
30
20
10
0
LSU
**
*
1st to 3rd
4th to 6th
7th to 8th
9th +
Reading Ability
Davis, TC, Fredrickson DD, et al. 1988
*p<.05, **p<.011
Patient Education
 Written materials, when used
alone, will not adequately inform
 Simplified materials are necessary
but will not solve communication
problems
 Work with patients to identify best
practices
Commonwealth Study
National focus groups of Medicaid parents
Written Materials
 Avoid information overload
 Give simple, to the point information
 Organize for ease of parent
 Use illustrative color graphics
 Materials in Spanish, other languages
Commonwealth Report, 2001
Commonwealth Study
Provider/parent communication
National focus groups of Medicaid parents
Patients may ignore advice when…
 Inappropriate for their age, experience
 Culturally insensitive
 Preachy
 Given without explanation
Commonwealth Report, 2001
New Approaches
Patient Education Materials/Messages
Materials/messages developed in
partnership with patients &
providers significantly increased:
Patient understanding
 Patient satisfaction
 Provider/Patient communication
 Health outcomes
Vaccine Communication Materials
Vaccine Communication
Pre- and Post-Materials
100%
pre
post*
80%
* p < 0.001
60%
40%
20%
0%
Verb
a
l Tea
ching
Side
Effec
ts
Risk
s
T Davis et al, Ambulatory Pediatrics, 2002
Cont
ra
indic
a ti o n
Do current EHDI materials work?
HRSA Contract
 Evaluate user-friendliness, including
readability and cultural appropriateness, of
UNHS parent education materials
 Conduct listening groups of key stakeholders
 Create two education toolkits in English and
Spanish: one general, and one for parents of
babies who have an abnormal screening result
Brochure Readability
Gold Standard Readability: ≤6th Grade
60
50
Percent
40
30
20
10
0
7th
8th-9th
Initial Screening / Retest
10th-12th
Intervention
College+
Tips to Improve Readability
 Use fewer words, shorter sentences, conversational tone
 Avoid textbook style
The purpose of identifying newborns with hearing loss is
to prevent or minimize the effects of hearing loss on
language development, academic performance, and
cognitive development through appropriate intervention
services.
(30 word sentence, College level)
If your baby can’t hear, he or she may have problems learning to
talk. If you find a hearing loss early, your child will have the best
chance to learn.
(14-16 word sentence, 6th grade level)
Five User-friendly Criteria
5 Criteria (23 items)
 Layout makes reading easier.
 Illustrations help carry message.
 Messages are clear.
 Information is manageable.
 Parent feels “information meant for me.”
* Each item is assessed for Improvement Needed:
Little/None; Some; Much
Is Layout User-friendly?
VS
Is Layout User-friendly?
First impressions are too important to be left as an afterthought.
 Font is 12-point or larger
 Avoids use of ALL CAPS, italics and specialty
fonts
 Uses ample white space
 Limits paragraphs to 4-5 lines in length
 Uses bullets, boxes, indentations, bolding,
lists
User-friendly Layout
Do Illustrations Help Carry Message?
 Illustrations serve a purpose (not just decorative)
 Are clear and realistic
 Are familiar and likely to be understood
Is Message Clear?
 Are key messages easy to pick out?
 A clear message begins with the cover, title,
and headings
 Does material get to the point quickly
 Reader needs to be clear about what he or she
needs to know and DO
Is Message Clear & Easy to Pick Out?
Hearing loss is invisible and is the most common birth disorder
in children. It affects as many as 16,000 babies born in the
United States each year. In our state about 150 babies are born
with or develop hearing loss each year. Newborn hearing
screening is available through every hospital in the state in
which more than 100 babies a year are born. The purpose of the
hearing screening is to identify children with hearing loss at an
early age so that proper follow-up and treatment can be
recommended.
(College level)
It is important to have your baby’s hearing tested before you
leave the hospital. Hearing problems need to be identified as
early as possible to make sure your baby has the best chance to
develop normally.
(6th grade level)
Is Information Manageable?
 Uses conversational, personal tone
 Focus is on “need to know” rather than “nice
to know”
 Limits number of messages (avoids
information overload)
 Limits graphs and statistics
Is Information Manageable?
There are two types of hearing screening tests that may be
used with your baby. Auditory Brainstem Response Testing
(ABR) tests the infants’ ability to hear soft sounds through
miniature earphones. Sensors measure your baby’s
brainwaves to determine if sounds are detected normally.
Otoacoustic emissions (OAE) are measured directly with a
miniature microphone and sent to a special computer to
determine your baby’s hearing status. Both tests are very
safe and take only minutes to evaluate each ear. Most babies
sleep through the hearing screening tests.
(College level)
A trained person will test your baby’s hearing. Your baby
will feel no pain. In fact, the screening test can be given
while your baby is asleep. It will show whether your baby’s
hearing is normal or whether more testing is needed.
(6th grade level)
Parent Likely to Feel “Information
Meant for Me”
 Well-targeted toward expectant/new parent,
particularly on the cover
 Uses familiar words, situations, and pictures
 Uses personal terms (i.e. your baby, your
doctor rather than a baby, the doctor)
 Uses conversational, friendly tone rather than
bureaucratic, textbook tone
“Meant for Me”
The Department of Health Services (DHS), Children’s Medical
Services Branch (CMS) has implemented a statewide comprehensive
Newborn Hearing Screening Program to help identify hearing loss in
infants. The program helps guide families to the appropriate services
needed to develop communication skills.
(Impersonal, bureaucratic
tone)
It is important to have your baby’s hearing checked.
• Your baby cannot tell you if he or she can hear your voice or a lullaby.
• Babies who do not hear have trouble learning to talk.
• Hearing problems need to be found as early as possible to give your
baby the best chance for a normal life.
• There is a quick, painless, easy way to test your baby’s hearing.
(Friendly, personal tone)
Five Tips Before Developing a Brochure
1) Plan. Identify and limit objectives
2) Focus. What do you want parents to know or do?
3) Start with mock up.
4) Style/tone. Use conversational language,
friendly tone
5) Feedback. Get parents’ input
Avoid a Common Mistake
Most patient education materials sequence information using:
Medical model - not effective for patient education
• Description of problem
• Statistics on incidence and prevalence
• Treatment forms and efficacy
Use newspaper model
• Gives most important information first
Use health belief model, for example:
• Your baby may be at risk
• There is something you can do about it
• Your baby will get personal benefits if you do
Lessons Learned from Focus Groups of
Mothers with Babies < 4 months
Mothers:
• have not heard of newborn hearing screening before
delivery
• do not know why their babies were tested at birth
• clearly remember their babies being tested for hearing
(unlike NBS)
• like getting results immediately after testing (signing
form seems to anchor)
Lessons Learned Contd.
Mothers:
• like having a pamphlet
they can take home
• like developmental
milestones
• like question/answer
format
• think OB good first
messenger (7 month)
Lessons Learned from Providers
• Half of parents may not attend prenatal classes
• OBs willing to discuss UNHS - need current info
• Pediatricians may lack current information
• Technicians lack patient education/
communication training – open to scripts
5 Criteria for Oral Education
 Limit information (3 key points)
 Give most important information 1st
 Layer Information
 Confirm Understanding
 Be positive, hopeful, empowering
UNHS Education Ideal
 Effective public health messages (government
health agencies, groups, lay press)
 Parent-centered materials/messages
 Productive interaction between parents and
multiple informed providers
 Tracking to measure quality, consistency and
efficacy of education
Feedback from Stakeholders
 How can our work best address your needs?
 What do we need to know before developing
toolkits for states?