The Health of Lesbian, Gay, Bisexual, and Transgender People Building a Foundation for Better Understanding (2011) / Chapter Skim
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3 Conducting Research on the Health Status of LGBT Populations
3 Conducting Research on the Health Status of LGBT Populations
Pages 89-140
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From page 89... ...
RESEARCH CHALLENGES Three important challenges confront researchers attempting to gather valid and reliable data for describing LGBT populations and assessing their health: (1) operationally defining and measuring sexual orientation and gender identity, (2)
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. Similarly, researchers who study LGBT populations face the challenges of defining sexual orientation and gender identity and developing procedures for operationalizing these constructs.
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While a number of effective measures of sexual orientation and gender identity have been developed, there remains a need for methodological research to determine the best ways to identify lesbian, gay, bisexual, and transgender people in health research. And while the most appropriate measures of sexual orientation and gender identity vary according to a
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A primary strategy to foster disclosure and reduce nonresponse is for researchers to establish a bond of trust with members of the target population. As with other populations, sexual and gender minorities are more likely to entrust researchers with sensitive information about themselves to the extent that they perceive the researchers to be professional, competent, and sensitive to their concerns about privacy (see, generally, Dillman et
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. Obtaining High-Quality Samples of Relatively Small Populations As documented below and in subsequent chapters, numerous studies of sexual and gender minorities that have relied on nonprobability samples have yielded important information about and insights into LGBT life and health.
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In addition to the data sets used in these secondary analyses, numerous other government and academic surveys routinely use large national probability samples to collect extensive data on the health of Americans. However, relatively few of these surveys have included measures of variables related to sexual orientation or gender identity.
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For application to LGBT health research, these measures require the implementation and use of consistent measures to identify LGBT populations. Raghunathan and colleagues (2007)
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For LGBT studies, researchers must identify and select the most effective methods to compensate for the unique research challenges discussed above. This section reviews sampling issues, including the utility of probability and nonprobability sampling for generating study populations for LGBT health research, and describes quantitative and qualitative analytic methods used in LGBT research.
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If the target population were the nation's LGBT populations, the sampling frame had characteristics such that it was possible to identify all LGBT people, and a probability mechanism were defined that gave everyone in the sampling frame an equal chance of being selected, then the findings could be generalized to LGBT populations in the United States -- within the scope of the study measures and subject to limitations of sampling and nonsampling error. Probability-based sampling methods rely on the assumption that a list of all eligible units of the target population can be constructed and that all units will have a known probability of selection.
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This method identifies areas where the target population is more highly concentrated and then samples a higher fraction of units within those areas. Disproportionate sampling may be an effective screening strategy for LGBT populations while ensuring that population estimates are possible.
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As explained above, the relatively small size of LGBT populations, the lack of research funding, and the sensitivity of questions relating to sexual behavior and gender expression have been barriers to effective probability sampling. Despite these challenges, some researchers have used probability samples for LGBT research.
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National Health and Social Life Survey (NHSLS) The NHSLS was designed to be a representative and current survey of adult sexual behavior in the United States.
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, employed a sampling frame that was created from a subset of adults first interviewed in the 2003 CHIS and included an oversample of sexualminority adults. These data have been used to examine physical health status, psychological distress, and mental health status in different sexual orientation groups (Cochran and Mays, 2007, 2009)
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Behavioral Risk Factor Sur veillance System requires all states to implement annual random-digit dialing surveys of community-residing adults to gather information about a wide range of health-related behaviors. The primary focus has been on behaviors that are linked with the leading causes of death -- heart disease, cancer, stroke, diabetes, and injury -- and other im portant health issues.
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Other studies have also examined subsets of sexual and gender minorities in LGBT populations using probability samples that were not designed to study those individuals. An example is the study of same-sex couples in the U.S.
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This sampling approach uses multiple stages of data collection to increase the likelihood of developing a representative sample of the target study population, focusing on key social and behavioral characteristics. With community involvement, personal interviews with community leaders and gatekeepers and focus groups are included in an ethnographic assessment to generate an exhaustive list of sites where members of the target population congregate.
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. Nonprobability Sampling For a variety of reasons, including a historical lack of the resources needed to obtain probability samples of sexual and gender minorities, the majority of studies addressing topics relevant to LGBT health have been conducted using nonprobability samples (Herek et al., 2010)
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From page 106... ...
Similarly, the terms community sample and community-based study are used in this report to refer to nonprobability samples that are obtained from a specific locale, such as a city or neighborhood. The various techniques for collecting nonprobability samples of LGBT populations, each of which can be understood as incorporating "some level of systematic exclusion and inclusion criteria" into the task of obtaining participants (Binson et al., 2007, p.
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Many studies of sexual and gender minorities with large nonprobability samples have used a combination of the above and related methods (e.g., Bell and Weinberg, 1978; Herek et al., 1999; Kennamer et al., 2000; Martin and Dean, 1990; Meyer et al., 2008; Morris and Rothblum, 1999)
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In 2004–2005, the Virginia Department of Health's HIV Prevention Community Planning Group drew on findings from existing nonprobability transgender health surveys to develop the Virginia Transgender Health Initiative Survey (THIS)
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Even though the extent to which their findings accurately characterize the entire LGBT population is unknown, studies based on nonprobability samples have yielded valuable information for expanding the field of LGBT research and addressing health service gaps (see Box 3-4)
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. Virginia Transgender Health Initiative Survey Focus groups were conducted to determine constructs for a statewide survey and to gather information about regional differences that could affect survey distribu tion methods.
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and sociocultural characteristics, assessing knowledge and opinions, assessing behavior and behavioral intentions, and gathering data to describe the distribution of health conditions among populations and subpopulations. When a survey is used to gather information about a target population, it is important to assess the quality of the survey data to determine how useful the data are for drawing inferences about that population.
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Coverage error occurs when members of the target population are excluded from the frame population, when members outside of the target TABLE 3-1 Sources of Nonsampling Error in Survey Research Coverage Error Associated with differences between the target population (a set of characteristics defining the population to be studied) and the sampling frame population.
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. More recently, the exclusion of households without a land-line telephone has exacerbated the coverage error of random-digit dialing surveys and resulted in the need to include a cell phone sampling frame in addition to the land-line telephone sampling frame.
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. As a data collection mode, the Internet can be used with probability or nonprobability samples, depending on the existence of a sampling frame and the use of a probability-based method of sample selection (Couper, 2000)
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In health research, RCTs typically are used to assess the efficacy of a behavioral or clinical intervention, such as in a drug trial, or participation in a risk reduction program. While RCTs, at their best, can have high internal validity, concerns invariably remain with regard to external validity.
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program staff for selected evidence-based prevention interventions that focus on HIV, other STIs, and viral hepatitis. Initiated in 1999, the program includes evidence-based behavioral interventions identified in the 2009 Compendium of Evidence-Based HIV Prevention Interventions, which were evaluated through a series of efficacy reviews, many of which involved RCTs (CDC, 2009)
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Longitudinal designs may be employed with probability as well as nonprobability samples, the data may be qualitative or quantitative, and data collection can utilize any of the methods discussed in this chapter. Some examples of longitudinal cohort studies are presented in Box 3-5.
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Use of patient-level data. Coupled with national health care reform initiatives, the growing awareness of health disparities among LGBT people
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. New accreditation requirements have been developed to assess hospital performance, including two that are specifically relevant to the care of LGBT people: the first addressing the patient's right to choose his or her support individuals; the second addressing prohibition of discrimination, encompassing that based on personal characteristics, including "sexual orientation and gender identity or expression." These new requirements will count toward a hospital's accreditation decision beginning July 1, 2011 (The Joint Commission, 2011)
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The use of patient-level data holds great potential for yielding a better understanding of the health status and health-related needs of LGBT people and how these differ from those of other groups in the U.S. population.
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Focus groups. Focus groups are often used as one component of a mixedmethods study in which the goal is to obtain quantitative data on a target population.
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Cognitive interviews are currently being used by the National Center for Health Statistics to develop and test measures for including LGBT questions on federal surveys. DATA SOURCES The relative lack of population-based data presents the greatest challenge to describing the health status and health-related needs of LGBT people.
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Recurring federally funded surveys that include LGB measures are listed and their properties described in Table 3-2. Not surprisingly, the limited number of studies that have used probability samples and rigorous methods and focused on sexual and gender minorities has contributed to the lack of an extensive published literature on LGBT health.
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Health risk behaviors, preventive Surveillance Systemd states have health practices, and health care cdc.gov/brfss/ included access related primarily to chronic identity, disease and injury behavior, transgender identity Current Population Survey Same-sex Monthly 2010: 97,263 Personal visits Work status, earnings, hours of work, census.gov/cps/ partner households (CAPI) , and other employment indicators; household telephone supplemental questions on diverse (CATI)
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limitations, injuries, health care cdc.gov/nchs/nhis.htm household access and utilization, health behaviors, health insurance, and income and assets National Household Survey Behavior Annually; sexual 1996: 18,300 Personal visits Use of illicit drugs, alcohol, and on Drug Abuse orientation individuals (SAQ until tobacco; substance abuse treatment oas.samhsa.gov/nsduh.htm assessed only in 1999, ACASIe history; illegal activities; mental 1996 thereafter) health; access to care; driving behavior; and demographics National Survey of Family Identity, 7 cycles 2002: 12,600 Personal visits Schooling, family background, Growth behavior, collected individuals (including marriage and divorce, fertility, family cdc.gov/nchs/nsfg.htm attraction since 1973; CAPI, ACASI, planning, sex education, sexual only the and interviewer history, sexually transmitted diseases 2002 cycle observations)
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f Locations that have historically measured sexual-minority status include Boston, Chicago, Connecticut, Delaware, Hawaii, Illinois, Los Angeles, Maine, Massachusetts, Milwaukee, North Dakota, New Hampshire, New York City, Rhode Island, San Diego, San Francisco, Seattle, Vermont, Washington (DC) , and Wisconsin.
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Health research studies of LGBT populations are often viewed in this way. Methodological challenges, however, can be overcome when careful attention is paid to scientific rigor and respectful involvement of individuals who represent the target population.
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• Identify or develop a sampling frame from which to select members of the target population for the study. • Determine and implement an appropriate method for drawing a probability-based sample to represent the target population or a recruitment strategy for the study population in a nonprob ability design.
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• Disseminate the results of the survey or research study widely, and in the case of community-based research, do so through meetings and presentations to the community and through partnership com munication channels. SUMMARY OF KEY FINDINGS AND RESEARCH OPPORTUNITIES Findings This chapter has addressed the challenges as well as the methodological issues associated with conducting research on LGBT populations and subpopulations.
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• The majority of studies addressing topics relevant to LGBT health have been conducted using nonprobability samples. Even though the extent to which their findings accurately characterize the en tirety of LGBT populations is unknown, studies based on non probability samples have yielded valuable information.
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These methods can be especially useful for generating hypotheses and laying the groundwork for future research. Research Opportunities A number of issues related to studying the health status of LGBT populations would benefit from additional research: • Federally funded surveys do not measure sexual orientation or gen der expression in a uniform and consistent way, limiting the ability to compare data across these surveys.
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Journal of LGBT Health Research 3(1)
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1999. A probability sample of gay urban males: The use of two-phase adaptive sam pling.
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Journal of LGBT Health Research 4(1)
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Los Angeles, CA: The Williams Institute. Gay and Lesbian Medical Association and LGBT Health Experts.
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2010. Sexual behavior in the United States: Results from a national probability sample of men and women ages 14–94.
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2006. Adapting evidence-based behavioral interventions for new settings and target populations.
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2005. Sexual behavior and selected health measures: Men and women 15–44 years of age, United States, 2002.
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2002. Combining estimates from complementary surveys: A case study using prevalence estimates from national health surveys of households and nursing homes.
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