MEASURING SEXUAL IDENTITY IN NCHS SURVEYS Jennifer Madans, Ph.D. U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Centers for Disease Control and Prevention National Center for Health Statistics 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 Background Need to better understand health of sexual minority groups Some evidence of health disparities Challenges to Researching Sexual Minority Health Conceptual Complexity Survey design Sexual identity Sexual attraction Sexual behavior Fluidity of identity Comprehension of terms Commonality of terms Population subgroup differences Context of questions Incorporation into ongoing survey Consideration of future survey changes 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 Patterns of Interpretation/Construct Equivalence Non-Minority Patterns Lack of salient sexual identity No concept of sexual identity but rather dis-identification “not me,” “I’m normal,” “soy mujer,” “I don’t know” Provided response categories: Interpretation of ‘heterosexual’ as gay; ‘bisexual’ as heterosexual LGBT Patterns Highly salient Identity rooted in complex process of negotiating and forming a sexual identity Shifting sexual identity For transgender respondents, intersection of gender and sexuality Provided response categories: Use of non-traditional identity categories Results Thus Far National Survey of Family Growth (NSFG) National Health and Nutrition Examination Survey (NHANES) Questionnaire Design Research Laboratory (QDRL) NSFG Cycle 6 (2002) Do you think of yourself as… Heterosexual Homosexual Bisexual or Something else NSFG Cycle 6 (2002) Table 1. Sexual identity by gender. Sexual Identity Men Women All Heterosexual 90.2% 90.3% 90.3% Homosexual 2.3 1.3 1.8 Bisexual 1.8 2.8 2.3 Missing 5.7 5.6 5.6 100 100 100 55,399 55,742 111,141 Weighted N in thousands Note. Missing data= something else, refused, and don’t know responses 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 NHANES 2002-2008 Table 2. Sexual identity by gender. Sexual Identity Men Women All 95.4% 93.2% 94.3% Homosexual or gay/lesbian 2.3 1.5 1.9 Bisexual 1.3 3.3 2.3 Missing 1.1 2.0 1.6 100 100 100 (3697) (4201) (7898) Heterosexual or straight n Note: Missing data = something else, not sure, don’t know, refused and don’t know responses NHANES 2002-2008 Table 3. Distribution of missing data by education Men Women Missing data <HS HS >HS <HS HS >HS Yes 3.4% 0.8% 0.4% 5.7% 2.1% 1.1% No 96.7 99.2 99.6 94.3 98.0 99.0 100 100 100 100 100 100 (976) (995) (1724) (976) (918) (2306) n Chi-square = 42.34, p<.0001 Chi-square = 50.29, p<.0001 NHANES 2002-2008 Table 4. Distribution of missing data by gender and ethnicity. Men Missing data Women Hispanic Non-Hispanic Hispanic Non-Hispanic Yes 3.4% 0.6% 5.8% 1.3% No 96.6 99.4 94.2 98.7 100 100 100 100 (1103) (2594) (1247) (2954) n Chi-square = 42.10, p<.0001 Chi-square = 46.06, p<.0001 Note. Missing data = something else, not sure, refused, and don’t know responses NHANES 2004-2008 Table 5. Distribution of missing data by language and ethnicity (for women only). Missing data Hispanic Hispanic Non-Hispanic English interview Spanish interview English interview Yes 3.3% 9.9% 1.4% No 96.7 90.1 98.6 100 100 100 (496) (426) (2169) n Note. Chi-square = 43.85, p<.0001 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 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 NSFG 2006-2008 Table 6. Sexual identity by gender. United States, aged 1844, 2006-2008 Sexual Identity Men Women All Heterosexual 95.7% 93.7% 94.7% Homosexual 1.7 1.1 1.4 Bisexual 1.1 3.5 2.3 Missing 1.5 1.7 1.6 100 100 100 55,556 56,032 111,588 Weighted N in thousands Note. Missing data= something else, refused, and don’t know responses NSFG 2002 and 2006-2008 Table 7. Percent missing data for sexual identity by selected characteristics: United States, aged 18-44, 2002 and 2006-2008 Men Women 2002 2006-08 2002 2006-08 Hispanic 10.8 4.5 10.2 4.8 NH White 3.0 0.5 3.5 0.9 NH Black 10.7 0.4 8.5 2.2 ACASI -English 5.4 0.9 5.1 1.2 ACASI-Spanish 12.0 8.5 12.6 9.2 Ethnicity Language Note. Missing data= something else, refused and don’t know responses NSFG 2002 and 2006-2008 Table 7 Continued. Percent missing data for sexual identity by selected characteristics: United States, aged 18-44, 2002 and 2006-2008 Men Women 2002 2006-08 2002 2006-08 Less than HS 12.7 3.9 15.1 4.2 HS 8.7 1.5 8.4 1.1 Some college 1.7 0.8 2.5 1.1 Bachelor’s degree or higher 1.3 0.7 1.5 1.0 Education Note. Missing data= something else, refused, and don’t know responses 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 Women: BMI by ‘Sexual Orientation’ 2002 NSFG Normal Overweight HETEROSEXUAL 49.7 25.6 HOMOSEXUAL 30.5 35.3 BISEXUAL 48.5 29.6 Obese 24.7 34.2 22.0 2006 NSFG Normal Overweight Obese STRAIGHT OR HETEROSEXUAL 40.7 26.5 32.8 GAY OR LESBIAN OR HOMOSEXUAL 38.2 33.0 28.8 BISEXUAL 36.5 19.5 44.0 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 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 139 Cognitive Interviews conducted 139 Cognitive Interviews conducted Design for New Question Goals for New Question: 1. Reduce misclassification, especially for non-minorities 2. Reduce “something else” and “don’t knows” 3. Sort non-minority from minority cases Revision Based on Principles: 1. Use labels that respondents use to refer to themselves 2. Do not use labels that respondents do not understandespecially if not required by any respondents 3. Use follow-up questions to meaningfully categorize ‘something else’ and ‘don’t know’ 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 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 What do you mean by something else? Please type in your answer _____________________________________ 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 What do you mean by something else? Please type in your answer _____________________________________ 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 NHIS THREE PHASE TEST 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 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 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 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 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 Timeline Date Activity Nov-Dec 2011 Phase 1 Apr-May 2012 Phase 2 Aug-Sep 2012 Phase 3 Jan 2013 Full Implementation NHIS Pretest Stay tuned….