Jennifer Madans, Ph.D.

1. U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Health Statistics Jennifer Madans, Ph.D. MEASURING SEXUAL IDENTITY IN NCHS SURVEYS

2. NCHS Staff • NSFG • Anjani Chandra • Casey Copen • Bill Mosher • Catlainn Sionean • NHIS • Marcie Cynamon • Jim Dahlhamer • Beth Taylor • QDRL • Heather Ridolfo • Kristen Miller • Aaron Maitland • Mike Ryan

3. Background • Need to better understand health of sexual minority groups • Some evidence of health disparities

4. Challenges to Researching Sexual Minority Health • Conceptual Complexity • Sexual identity • Sexual attraction • Sexual behavior • Fluidity of identity • Comprehension of terms • Commonality of terms • Population subgroup differences • Survey design • Context of questions • Incorporation into ongoing survey • Consideration of future survey changes

5. Definition of Construct • Sexual Orientation: • Generic term, catch-all • Sexual Behavior: • Same-sex vs. opposite-sex behavior • Not necessarily consistent with self-conception or presentation of self • Design problem: what counts as “sex” varies across sub-groups • Sexual Attraction: • Same vs. opposite sex/gender desire • Not necessarily consistent with self-conception or presentation of self • Latent and elusive phenomena, not tangible, not observable • Design problem: Variation in conceptualization, particularly in what respondents consider and actually report • Sexual Identity • Conscious understanding and identification of self • Similar to racial identity • Represents individuals’ relationship to social world • Design problem: complex and fluctuating

6. Patterns of Interpretation/Construct Equivalence

7. Results Thus Far • National Survey of Family Growth (NSFG) • National Health and Nutrition Examination Survey (NHANES) • Questionnaire Design Research Laboratory (QDRL)

8. NSFG Cycle 6 (2002) Do you think of yourself as… Heterosexual Homosexual Bisexual or Something else

9. NSFG Cycle 6 (2002)

10. NHANES 2002-2008 Do you think of yourself as… Heterosexual or straight (attracted to men/women) Homosexual or lesbian/gay (attracted to women/men) Bisexual (attracted to men and women) Something else Not sure

11. NHANES 2002-2008

12. NHANES 2002-2008

13. NHANES 2002-2008

14. NHANES 2004-2008

15. Results • High rates of missing data in comparison to the target group (something else, not sure, don’t know, and refused responses) • Unevenly distributed across population • Higher among low education • Higher among minority population

16. NSFG 2006-2008 Do you think of yourself as… Heterosexual or straight Homosexual or gay/lesbian Bisexual or Something else When you say “something else” what do you mean? Please type in your answer

17. NSFG 2006-2008

18. NSFG 2002 and 2006-2008

19. NSFG 2002 and 2006-2008

20. NSFG Results • 2006-2008 NSFG • Significantly improved question wording • Lower rates of missing data • Still high rates of missing in some populations • Lowest educational level • Spanish speaking, especially women

21. Women: BMI by ‘Sexual Orientation’

22. Preparing to Add Questions to the NHIS • What’s different about the NHIS? • Multipurpose General Population Survey • Interviewer Conducted Interview • Areas Needing Development • Audio Computer Assisted Self Interview (ACASI)Development • Question Development

23. Sources Informing NHIS Question Development • Quantitative Studies • 2001-2008 National Health and Nutrition Examination Survey (NHANES) • 2002 -2003 National Survey of Family Growth (NSFG) • 2006-2008 NSFG • Qualitative Studies • 7 cognitive testing study results • This project 139 interview • Total 377 cognitive interviews

24. 139 Cognitive Interviews conducted

25. 139 Cognitive Interviews conducted

26. Design for New Question Goals for New Question: • Reduce misclassification, especially for non-minorities • Reduce “something else” and “don’t knows” • Sort non-minority from minority cases Revision Based on Principles: • Use labels that respondents use to refer to themselves • Do not use labels that respondents do not understand- especially if not required by any respondents • Use follow-up questions to meaningfully categorize ‘something else’ and ‘don’t know’

27. Revised sexual identity question Do you think of yourself as… • Lesbian or gay • Straight, that is, not lesbian or gay • Bisexual • Something Else • Don’t Know

28. Revised sexual identity question By something else, do you mean that… • You are not straight, but identify with another label such as queer, trisexual, omnisexual or pan-sexual • You are transgender or transexual • You have not or are in the process of figuring out your sexuality • You do not think of yourself as having a sexuality • You personally reject all labels of yourself • You made a mistake and did not mean to pick this answer • You mean something else

29. What do you mean by something else? Please type in your answer _____________________________________

30. Revised sexual identity question By Don’t Know, do you mean that… • You don’t understand the words • You understand the words, but you have not or are in the process of figuring out your sexuality • You mean something else

31. What do you mean by something else? Please type in your answer _____________________________________

32. Additional work • Limitations: • Washington DC metro region • Different vocabulary can vary (particularly true for Spanish) • Question still being evaluated/may change with: • Field interview debriefings • Analysis of field test data

33. NHISThree Phase Test

34. The National Health Interview Survey • Since 1957 • General health survey • Noninstitutionalized population • In person interviews by Census interviewers • n = 40,000 households, national sample • Data on households, adults, and children • Annual , one time, and periodic content • One hour • Advance letter/informed consent

35. Phase 1: Bridging Field and Lab Techniques • n = 50 • Maryland, Virginia, and Pennsylvania • 6 interviewers • Adapting QDRL procedures to Census field requirements • Context of NHIS • Transition from standard CAPI to ACASI

36. Phase 2: Testing Technical Procedures • n = 500 • Several regions • Full NHIS with ACASI at the end • Tests procedures for • Using headphones • Delivering instructions • Respondent concerns • Input and output

37. Phase 3: The Pilot • N = 5,000 • Split Ballot • ACASI compared to CAPI • Additional issues and experimentation • Spanish • Question wording, order • Voice qualities (human or text to speech; sex; speed) • Placement

38. Evaluation Criteria • Break off rates • Nonresponse • Don’t know and refused responses • Impact on other survey data • Interviewer debriefing • Observer debriefing • Comparisons to other surveys

39. Timeline

40. NHIS Pretest Stay tuned….