Hispanic Women and Neural Tube Defects Study: Impact and Solutions in Florida

1. Migrant Farm Worker Hispanic Women & Neural Tube Defects Gwendolyn Quinn, PhD, Nazach Rodriguez, MSW, MPH, & Kimberlea W. Hauser, MBA University of South Florida

3. Introduction: Background Information

4. Study Background • What are neural tube defects? • What is folic acid? • What is the recommended dose? • Special populations?

5. What are Neural Tube Defects? • Neural tube defects (NTD) are birth defects of the spine and brain. • Most common are anencephaly and spina bifida, also known as myelomeningocele. • Affect approximately 1 in 1000 pregnancies

6. Anencephaly & Spina Bifida

7. What is Folic Acid? • Folic acid is a water-soluble B vitamin. • Must be taken every day to ensure the body has enough to function properly. • Found in multi-vitamins or supplements and in food. • Folic acid found in foods is called folate. • Leafy green vegetables, citrus fruits, peanuts, oatmeal, enriched foods and certain breakfast cereals are fortified with folic acid.

8. USPHSRecommendations: 1992 “All women of childbearing age, capable of becoming pregnant, should consume 0.4 mg (400 micrograms) of folic acid to reduce the risk of having a pregnancy affected by spina bifida or other neural tube defects (NTDs).”

9. Important Dates

10. NTD in Special Populations • Women of Mexican-origin are at increased risk of having a NTD affected pregnancy. • Studies in California and Texas showed increased risk in Hispanic populations of Mexican-origin. • Similar data found in Florida

11. Stage 1: Initial Planning

12. Florida Demographics • Florida ranks 4th in the nation in the number of annual births and Hispanic births, behind California, Texas, and New York • There were 205,800 births in Florida during 2001, of which 49,628 were Hispanic births (24.1% of all births) • Each year, approximately 100 babies in Florida are born with neural tube defects.

13. Florida Study To determine the impact of neural tube defects on the Hispanic population in Florida from January 1, 1996 through December 31, 1998.

14. Florida Live Births January 1, 1996 to December 31, 1998

15. Methodology • Neural tube defects (NTDs) defined as anencephaly, spina bifida (w/o anencephaly), and encephalocele • Data obtained from the Florida Birth Defects Registry (passive system) and the Florida Department of Health Bureau of Vital Statistics

16. Results

17. Overall State Rate: 5.6 NTDs by Maternal Hispanic Origin, Florida 1996-1998

18. NTD by Maternal Hispanic Origin and Maternal Place of Birth, Florida 1996-1998 Overall Hispanic Rate: 5.7 Overall Non-Hispanic Rate: 5.5

19. Data Limitations • 1996-1998 data may not reflect current situation • Registry uses data initially compiled for non-epidemiologic purposes • May not include all cases or may have miscoded diagnoses • Relatively small subgroup sizes

20. Study Conclusions • No statistically significant difference between overall Hispanic (5.7) and non-Hispanic (5.5) rates • Marked variability of rates among Hispanic subgroups • Higher risks for Hispanic mothers born outside the U.S.

21. Impact on Florida • Over 80% of Florida Hispanic NTD affected live births are to foreign-born mothers • Within the Hispanic subgroups, foreign-born Mexican mothers have the highest relative risk

22. Next Steps … • What do we do with this information? • How do we develop an action plan?

23. Stage 2: Formative Research

24. Do Hispanic women consume less folic acid? Do they know about the importance of folic acid? Do they know the relationship between NTD and folic acid? Do they know about birth defects? What is their typical diet? Are there differences in ability to store and metabolize folic acid across ethnicities? What Exactly is the Problem?

25. Use vitamins through injection Believe birth defects were an act of God Believe oral vitamins cause weight gain and nausea Folic Acid KnowledgeLiterature Review Hispanic women were less likely than Caucasian women to: And more likely to: • Know about folic acid. • Know that it prevents birth defects. • Take it every day.

26. First Steps • Study existing literature on knowledge, attitude and behaviors • Complete preliminary logic model • Conduct interviews with key informants • Develop focus group guides and plans • Take the data back to the larger group and make decisions

27. Preliminary Logic Model • In order to help: • Mexican, foreign born women • To: • Increase folic acid use • We will focus on: • Building knowledge • Improving access • Dispelling myths about diet • Dispelling myths about birth defects

28. Addressing the Problem • Began study to understand barriers to folic acid education among the Mexican population in Florida. • Use of funds from the March of Dimes Mission Investment Opportunity Grant to develop culturally appropriate folic acid educational materials.

29. Formative Research Goals • Identify • A target audience • The behavior • Factors that influence behavior • Benefits • Barriers • Placement • Promotional Activities Intervention

30. Research Questions • What do foreign-born Hispanic women know about vitamins? • What do foreign-born Hispanic women know about folic acid? • What do foreign-born Hispanic women know about heredity and genetics? • How do foreign-born, Hispanic women perceive risk related to birth defects? • What are foreign-born, Hispanic women’s perceptions of current materials? • Who would be an appropriate spokesperson?

31. Methods • Extensive literature review to identify past research attempts and findings • Collection of current media materials • Interview guide (n=14) • Focus group guide (n=44)

32. Sampling Plan • Farm worker populations • Mexican • Mexican-Americans • Teens • Adults • NTD family history

33. Results • Vitamins important only during pregnancy • Most women don’t take regularly • Nausea • Forget • Dr. didn’t tell them to • Didn’t have time or money to purchase

34. Results • Folic Acid • Acid is linked to illegal substance • Type of medicine that should be injected by a pharmacist • Do not believe there is a link between Folic Acid and NTD or birth defects

35. Results • Heredity/Genetics • Don’t recognize the words – use the term “running in the blood” • Understand diabetes and cancers as hereditary but also believes that personality and AIDS are genetic • Birth Defects related to past wrong-doing

36. Results • Perception of Risk • Women of all ages can list many birth defects • Both Mexican and Mexican-American teens and adults believe they are caused by: • Not complying with cultural/social norms • Harming someone • Sleeping with the moon shining in the window • Eclipses • Weak uterus caused by pesticides

37. Results • Perceptions of current media • Prefer novella concept • Prefer radio and TV • Less focus on the baby • Want health care professionals to recommend • Offended by sexy “Latina” • Remember MOD ads – “babies in shopping carts” (drugs)

43. Next Steps … • What do we do with this information? • How do we develop an action plan?

44. Stage 3: Strategy Formation

45. Working Logic Model • In order to help: • Hispanic women of childbearing age, primarily teens, particularly Mexican migrant first or second generation families • To: • Talk to a health care professional about the use of pre-conceptual folic acid to prevent birth defects • We will focus on: • Beliefs about vitamins • Perception of Risk • Attitudes toward vitamins • Culturally appropriate spokesperson • Role of the partner

46. Results • Spokesperson • Female • Health care professional • No famous people or cute babies • Begin with younger girls • “If you are sexually active you need vitamins”

47. Stage 4: Program Development

48. Media Products • Photo Novella • Brochure • Radio Ad • English andSpanish version of both

49. Photo Novella 26 participants n = 13 Mexican Ages 15-34 Brochure 10 participants n = 7 Mexican Ages 15-30 PSA – 2 versions 15 participants n = 9 Mexican Ages 15-30 Pretesting

50. Pretest Findings • Brochure • Well received. • Use of color and baby image were particularly appealing. • Image of doctor and patient not well liked – preferred image of a baby or woman.