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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?