Using Community-Based Participatory Research to Improve Transgender Healthcare Access

in Virginia

Knowledge for Equity ConferenceSilver Spring

November 13, 2012

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Research Agenda. Four conceptual perspectives were used to understand priority areas of research and further the evidence base for LGBT health issues.

Recommendations 4-5: Methodological Research_________________________________________________________________

4. NIH should support the development and standardization of sexual orientation and gender identity measures.

5. NIH should support methodological research that relates to LGBT health.

Transgender is an umbrella term used to describe persons whose gender identity or expression does not conform to the sex they were born as or assigned to at birth. Few population-level data are available to assess the health care needs transgender communities. Additional methodological research is needed to investigate new sampling approaches with this community, including any biases that may be introduced as a result of specific study designs.

Study Objectives: (1) Examine the health-related needs of transgender persons, (2) Evaluate access to transgender sensitive healthcare and assess healthcare system readiness to provide culturally competent care; (3) Consider the methodological limitations of different sampling modalities.

Design and Setting: The Virginia Transgender Health Initiative Study (THIS) conducted a one-time statewide needs assessment of 350 transgender persons (229 male-to-female, 121 female-to-male) living in Virginia between 2005-2006. Community-based participatory research principles were used, stressing research “with” rather than “on” communities. Participants completed a one-time survey either (1) Internet, (2) paper-pencil.

Funding: Funded by the CDC to the Virginia Department of Health, Cooperative Agreement # U62/CCU323468-01. Approved by the Virginia Commonwealth University IRB.

Eligibility criteria: (a) age 18 years or older; (b) Virginia residents or students; (c) considered themselves transgender, defined as: had lived or wanted to live full-time in a gender opposite their physical sex; or had or wanted to wear the clothing of the opposite sex in order to express an inner, cross-gender identity.

Data Analysis: Analyses were conducted to examine differences in sociodemographics, geographic location and characteristics, family and social support, and public health indicators by sampling modality (Internet vs. paper). Analysis was conducted using SAS statistical software. Statistical significance at the α = 0.05 level.

Characteristics of a CBPR Project1. Recognizes community as a unit of identity.2. Builds on strengths and resources within the

community.3. Facilitates collaborative, equitable partnership in all

phases of the research.4. Promotes co-learning and capacity building among

all partners.5. Integrates and achieves a balance between research

and action for the mutual benefit of all partners.

Minkler M, Wallerstein N (Eds.). Community Based Participatory Research for Health. San Francisco: Jossey-Bass & Co., 2003.

Response Mode DifferencesPaper (n=140, 40%) 58% African American; 28% white; 10% Hispanic 56% urban, 28% suburban, 16% rural 38% no health insurance 23% not out to regular doc 19% own their homes 34% live alone 6% live with spouse

Web (n=210, 60%) 3% African American; 85% white; 9% multiracial 34% urban, 48% suburban, 19% rural 21% no health insurance 33% not out to regular doc 40% own homes 25% live alone 22% live with spouse

Web Respondents Higher incomes More highly educated Less likely out to regular doc More likely insured Fewer encounters with transgender people More likely to have children (14% v. 38%) and to

have children live with them Somewhat older (39 v. 34 for paper respondents) No difference in natal sex

Table 1. Characteristics of the study sample by modality of survey completion: Internet (N=210) and Paper (N=140). Overall, 60% were sampled via Internet and 40% paper-pencil.

Internet (N=210) Paper (N=140) p-value

Mean Age (SD), range 19-69 39.1 (13.7) 34.0 (10.3) 0.0001

Gender Vector

Male-to-female (MTF) 66% (138) 65% (91) 0.89

Female-to-male (FTM) 34% (72) 35% (49)

Race/Ethnicity

Any racial/ethnic minority 15% (31) 71% (100) <0.0001

Socioeconomic Position

Low income (<$16,999) 33% (69) 45% (63) 0.005

HS diploma/GED or less 11% (22) 38% (53) <0.0001

Public health insurance 4% (9) 20% (28) <0.0001

No health insurance 20% (43) 36% (50) 0.0006

Gender Transition

Live full-time 43% (90) 44% (62) 0.79

Hormones ever 56% (118) 57% (80) 0.86

Healthcare

Discrimination by healthcare provider 23% (49) 25% (35) 0.61

Out to provider 41% (86) 5% (63) 0.45

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Rural Urban Suburban0

10

20

30

40

50

60

18.6

33.8

47.6

15.7

53.6

27.1

Internet Paper

Pe

rce

nt

χ2 statistic=17.2, 2 df, p=0.0002

Figure 1a. Comparing characteristics of place by Internet and paper-pencil modalities.

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Western Northern Central Eastern0

5

10

15

20

25

30

35

40

45

26.7

38.1

18.1

11.9

7.1 6.4

14.3

38.6

Internet Paper

Pe

rce

nt

χ2 statistic=76.5, 3 df, p<0.0001

Figure 1b. Comparing geographic region and characteristics of place by Internet and paper-pencil modalities.

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Biological or adopted parent

Live with spouse or significant

other

No face-to-face contact with transgender

persons

No family support

05

1015202530354045

38.141.9

19

38.1

13.6

22.1

9.3

20.7

Internet Paper

Perc

ent

Figure 2. Family characteristics and social support differed by sampling modality (all p<0.05).

Table 2. Public health indicators by sampling modality

Internet (N=210)

Paper (N=140)

p-value

Substance Use Behaviors

Drinking problem ever 25% (52) 20% (28) 0.30

Tobacco (smoking) problem ever 61% (127) 68% (95) 0.16

Injection drug use (IDU) 4% (9) 9% (12) 0.10

Mental Health Suicide attempt ever 24% (50) 27% (38) 0.48

Violence

Physical violence 40% (84) 35% (49) 0.18

Sexual violence 22% (30) 31% (43) 0.08

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Summary Participant characteristics varied by response mode.

Generally not surprising Race/ethnicity, income, education, health insurance, geography

Public health indicators did not vary by response mode. Health-related behaviors and experienced violence were

similarly reported, consistent with numerous community surveys of transgender people.

Result: Statewide coverage and demographic representation were convincing of the need for attention to healthcare access and provider preparation.

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2010 Summer Institute in LGBT Population Health Preparing the Next Generation of LGBT Health

Scientists

37 Colleges and Universities RepresentedBoston College Boston UniversityBrandeis UniversityCity University of New YorkCornell UniversityGeorge Washington UniversityHarvard UniversityIndiana UniversityJohns Hopkins UniversityMichigan State UniversityRutgers UniversitySan Francisco State UniversitySt. Louis UniversitySuffolk UniversitySyracuse UniversityTufts UniversityUniversity of Alabama, BirminghamUniversity of ArizonaUniversity of California, Berkeley

University of California, San Francisco University of Chicago University of Illinois. Chicago University of Massachusetts, Boston University of Miami University of Minnesota University of Montana University of Naples University of North Carolina University of Pennsylvania University of Pittsburgh University of South Florida University of South Carolina University of Texas, Austin University of Utah University of Washington University of California, Berkeley West Virginia University

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The LGBT Pop Center is supported by theEunice Kennedy Shriver National Institute for Child Health and Human Development (NICHD)

R21HD051178 (2007-2013): Population Research Infrastructure Program (PRIP)R25HD064426-01 (2010-2015): Educational Program for Population ResearchR13HD066965-01 (2010-2013): Conference Support_____________________________________________________________

Contact the LGBT Pop Center:jbradford@fenwayhealth.org, TFI co-chair and popcenter director/PIavanwagenen@fenwayhealth.org, TFI manager of administration and operationshttp://www.icpsr.umich.edu/icpsrweb/FENWAY/