Strategies for Family Support in the Universal Newborn Hearing Screen Program

1. Slide 1 Follow-up of Refer Babies in the Universal Newborn Hearing Screen Program: Strategies for Family Support Brenda Sommer, RN Pediatrix Newborn Hearing Screen Program Sunrise, Florida Follow-up of Refer Babies in the Universal Newborn Hearing Screen Program: Strategies for Family Support Brenda Sommer, RN Pediatrix Newborn Hearing Screen Sunrise, Florida

2. Faculty Disclosure Information In the past 12 months, I have not had a significant financial interest or other relationship with the manufacturer(s) of the product(s) or provider(s) that will be discussed in my presentation. This presentation will (not) include discussion of pharmaceuticals or devices that have not been approved by the FDA or if you will be discussing unapproved or “off-label” uses of pharmaceuticals or devices.

3. Goals of the Universal Newborn Hearing Screen Program: • 1. Hearing screen within first month of life 2. Audiological diagnosis by three months of life 3. Intervention by six months of life

4. Hearing Screen is done=Refer

5. Success in Screening and Providing Early Intervention for our Babies • Success begins in the hospital • capture rate, missed • decrease false positive • parent education for late onset hearing loss • data management is essential • Close the gap between the baby with a refer and diagnosis/intervention

6. Education is critical. • Importance of pre-hearing screen education: verbal and visual • Importance of family involvement during the hearing screen • Importance of support from the medical team: pediatrician, nurses • Importance of post-hearing screen education and family support Empower family with knowledge.

7. Refer Baby Follow-up: • Verify parents’ contact information with them • Set up audiology appointment • Notify Pediatrician • Provide parents with written information including: audiologist’s name address phone number directions to office date and time of the appointment instructions for preparation of infant for testing • Perform state reporting • Call to remind parents of the appointment

8. So Many Obstacles…. • Change of baby’s last name • Change of Residence/Phone Number • Change Parents (i.e. Adoption, Grandparents) • Change of Health Status • Change of pediatrician • Lack of Audiology Resources • Providers who Refuse Medicaid Babies • Parents Fear Bill Collectors; ignore letters • Lack of transportation • Lack Understanding the Need to Follow Up • Language Barriers • Emotional Response of Family

9. Family Response to Refer • Feelings of loss • Depression • Anger • Blame • Denial • Guilt • Sense of powerlessness

10. Team Effort to Support Family • Newborn Hearing Screen Program • Audiologist • Pediatrician • ENT • EHDI Programs • Community Resources • Other families, support groups

11. SCREENING By one month of life NEWBORNS Ineligible Medical Constraints Parent Refusal Death Transfer Out Not Screened Infants Tracked Screened Ineligible Medical Constraints Parent Refusal Death Transfer Out LOST Send Certified Letter Not Screened Infants Tracked Abnormal Normal

12. DIAGNOSTIC Normal Abnormal By three months of life Infants with Risk Factors to Audiologist Abnormal Normal Ineligible Medical Constraints Parent Refusal Death Transfer Out LOST Send Certified Letter Diagnosis Process

13. DIAGNOSTIC By three months of life Diagnosis Process Ineligible Medical Constraints Parent Refusal Death Transfer Out LOST Send Certified Letter Confirmed Abnormal Normal

14. INTERVENTION Confirmed Abnormal By six months of life Ineligible Medical Constraints Parent Refusal Death Transfer Out LOST Send Certified Letter Intervention Treatment No intervention Ineligible Medical Constraints Parent Refusal Death Transfer Out LOST Send Certified Letter Intervention Long Term Follow-up

15. Screen Today for a Better Tomorrow™

16. Reference List • http://www.jcih.org/jcih2000.pdf