Fetal and Infant Mortality Review: A Tool Communities Can Use to Address Disparities in SIDS Rates and Improve Risk Re

1. Fetal and Infant Mortality Review: A Tool Communities Can Use to Address Disparities in SIDS Rates and Improve Risk Reduction Activities Kathleen Buckley, MSN,CNM National Fetal and Infant Mortality Review Program Ellen Hutchins, MSW, ScD Chief, Perinatal and Women’s Health BranchMaternal and Child Health Bureau

2. What is Fetal and Infant Mortality Review (FIMR)? FIMR is a type of continuous quality improvement that uses local, de-identified review of cases as a springboard to improve services and resources for women, infants and families.

3. FIMR Includes Key Informant Interviews The FIMR process also includes a standardized home interview with the mother who has suffered a SIDS loss, if she agrees and conveys the mother’s story to the FIMR review members. This information is key todeveloping culturally sensitive SIDS risk reduction education and interventions.

5. Johns Hopkins National Evaluation of FIMR “[The FIMR program] …also creates a setting and a set of concrete activities wherein everyone has a contribution to make and everyone learns from the process. The case study findings indicate that because the FIMR process extends beyond problem identification to promote problem solutions, observable changes in practice and programs occur; ‘things get fixed’ and participants are inspired to take further action.” The evaluation of FIMR programs nationwide: early findings. [Online, 2002]. Available from: http://www.jhsph.edu/wchpc/pub/Brochure.pdf.

6. Disparities in SIDS Rates Persist While the overall SIDS rates have declined in all populations throughout the United States, disparities in SIDS rates and prevalence of risk factors remain in certain groups. SIDS rates are highest among African Americans and American Indians and are lowest among Asians and Hispanics (NICHD 2001).

7. SIDS Deaths by Race and Hispanic Origin of Mother, 2001 Rate (NCHS 2003)All races 55.5White 45.6 African American 113.5American Indian 145.7Asian/Pacific Isl. 18.5Hispanic 27.1

8. US Infant Mortality 1990, 1998-2001by Maternal Race and Ethnicity Rates per 1,000 Live BirthsSource:National Center for Health Statistics, Linked Birth/Infant Death Data Sets: 1997, 1998, 1999, 2000,2001

9. Hauck, FR et al. Sleep Environment and the Risk of Sudden Infant Death Syndrome in an Urban Population: The Chicago Infant Mortality Study. PEDIATRICS Vol. 111 No. 5 May 2003, pp. 1207-1214 “…to lower further the SIDS rate among black andother racial/ethnic groups, prone sleeping, the use of softbedding and pillows, and some types of bed sharing should bereduced...”

10. Rasinski KA et al. Effect of a sudden infant death syndrome risk reduction education program on risk factor compliance and information sources in primarily black urban communities.PEDIATRICS. 2003 April Vol 111(4 Pt 1):e347-354. “…our findings suggest that cultural explanations for specific infant care practices must be more clearly understood to close the gap between SIDS risk factor compliance and apparent knowledge about SIDS risk factors.”

11. Sheers NJ et al. Where Should Infants Sleep? PEDIATRICS Vol. 112 No. 4 October 2003, pp. 883-889 Data from NICHD showed: • Infant deaths in adult beds were 8.1 times more likely in the 1990s than in the 1980s. • Infant deaths on sofas and chairs were 17.2 times more likelyin the 1990s than in the 1980s. • The risk of suffocation was approximately 40 times higher forinfants in adult beds compared with those in cribs. The authors conclude that reported deaths of infants who suffocated on sleepsurfaces other than those designed for infants are increasing.

12. Common SIDS Threads Emerging from 220+FIMR Programs In 42 States In general, families most at risk for SIDS may not: Know about SIDS risk reduction messages Know that SIDS messages relate to them Trust SIDS reduction messages Trust the SIDS risk reduction messengers

13. Can FIMR Make a Difference? YES! FIMR Can: • Increase community awareness about SIDS, • Ensure that SIDS risk reduction messages are delivered by trusted messengers and • develop culturally appropriate SIDS educational messages

14. Increasing Community Awareness about SIDS

15. FIMR SIDS Intervention: In Oakland California, the FIMR team found that SIDS risk reduction literature was available only in English. The primary language of their community residents included not only English but also Chinese, Vietnamese, Spanish, Amharic, Thai, Croatian and Laotian. FIMR team members worked together to produce SIDS educational materials in all eight languages, along with minimal reading materials and a special message for grandparents and made them available for distribution throughout the community.

16. FIMR SIDS Intervention:After reviewing many African-American SIDS deaths, the Richmond VA FIMR found that many new mothers, family members and some community day care providers didnot know about SIDS risk reduction practices. FIMR worked with the Health Department to design culturally appropriate materials and developed a door hanger with the "back to sleep" message with a picture of an African American baby. The Healthy Start Consortium and the regional perinatal council distributed the hangers “door to door” throughout the community. This campaign is being continued today and has been adopted in several other states.

17. Using Trusted Messengers

18. FIMR SIDS Intervention: In the sections of Milwaukee, WI chosen for FIMR reviews, FIMR noted that families – including African American, Latino and Hmong residents - were less likely to place their infants on their back to sleep. The Health Department asked faith communities in these sections of Milwaukee to help them reach families with SIDS risk reduction messages. Nineteen parish nurses agreed to coordinate a church-based "Back to Sleep" campaign. These nurses also integrated the SIDS message into their ongoing teaching plans, thus the message will continue.

19. ] FIMR SIDS Intervention: Palm Beach County, FL FIMR found an increase in SIDS deaths. FIMR worked with the Medical Examiner and the Health Alliance on Safe Infant Sleeping Programs to identify messages about safe sleeping environments. A public education media campaign, spearheaded by Chief ME said: "The survival of your child will depend more on where and how he or she sleeps during the first year of life than any other action or care issue during childhood!“Palm Beach's coalition has developed an ongoing strategy to institutionalize SIDS education for child care workers, hospital staff, physicians, their office staff, prenatal and postnatal care agencies, parents and family members.

20. Understanding Cultural Traditions

21. FIMR SIDS Intervention: The Siouxland IA Health Department serves diverse residents including Native American families. FIMR found that many families did not have a crib at home for the newborn. FIMR also learned that local Native Americans believe that a pregnant woman should not make plans for the baby or buy a crib until after birth. It is considered unlucky and is forbidden by tradition. The local hospitals and the home visit agencies developed a postpartum nursing protocol to ask each new mother, Where will your baby sleep? A local foundation provides cribs for needy families. Knowing the traditions helps nurses to provide culturally relevant education, support and resources, including a new crib to families, as needed.

22. Conclusion SIDS Risk Reduction Messages Work When They Are: • community specific, • culturally appropriate and • reinforced by respected messengers. FIMR CAN MAKE THAT HAPPEN!