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Article
December 2006

Nondisclosure of Sexual Orientation to a Physician Among a Sample of Gay, Lesbian, and Bisexual Youth

Author Affiliations

Author Affiliations: UCLA/RAND Center for Adolescent Health Promotion, Los Angeles, Calif (Drs Meckler, Elliott, Kanouse, and Schuster); RAND, Santa Monica, Calif (Drs Kanouse and Schuster); Department of Psychology, California State University, Fullerton (Dr Beals); Department of Pediatrics, School of Medicine, University of California, Los Angeles (Dr Schuster); and Department of Health Services, School of Public Health, University of California, Los Angeles (Dr Schuster). Dr. Meckler is now with Oregon Health and Sciences University, Portland.

Arch Pediatr Adolesc Med. 2006;160(12):1248-1254. doi:10.1001/archpedi.160.12.1248
Abstract

Background  The American Medical Association, the American Academy of Pediatrics, and the Society for Adolescent Medicine recommend discussing sexual orientation as part of the health supervision of all adolescents. Little is known about whether lesbian, gay, and bisexual (LGB) youth hide their orientation from health care providers, which can potentially lead to missed opportunities in identifying individual health risks and provide appropriate screening and counseling.

Objectives  To describe the health care experiences of a nonclinical sample of LGB youth and identify factors associated with disclosure and nondisclosure of orientation to physicians.

Design  Community-based participatory study using a self-administered questionnaire.

Setting  Los Angeles youth empowerment conference held in October 2003 targeting high school–aged LGB youth.

Participants  One hundred thirty-one youth aged 14 to 18 years who identified themselves as LGB.

Main Outcome Measure  Physician's knowledge of participant's sexual orientation.

Results  Thirty-five percent of the sample reported that their physician knew they were LGB. Bisexual youth were less likely than gay and lesbian youth to have disclosed. The strongest predictor of disclosure was having discussed sex or sexual health of any kind with a physician (odds ratio, 15.47; 95% confidence interval, 4.34-55.18). When asked what a physician could do to make talking about being LGB more comfortable, 64% of participants chose the survey response, “Just ask me.”

Conclusions  Even among a nonclinical sample of LGB youth who were open enough about their orientation to attend a conference on the subject, only 35% reported that their physician knew their orientation. The results indicate that physicians had not discussed sexuality with most LGB youth in the study and that most youth would welcome such a discussion.

The development of a healthy sexual identity during adolescence is often fraught with stress.1,2 The process may be particularly difficult for lesbian, gay, and bisexual (LGB) youth, who not only face challenges and health risks in common with their heterosexual peers, but who also must confront stigma while struggling to reconcile emerging sexual feelings with social norms.24 Some LGB youth are at heightened risk for depression, suicide, substance abuse, rejection by family, violence, school failure, and sexually transmitted infections, including human immunodeficiency virus.3,521 Although particular sexual behaviors, rather than sexual orientation itself, determine a youth's risk for sexually transmitted infection, self-identification as LGB may be associated with feelings of isolation and stigma, which contribute to the risk for psychosocial problems. Therefore, guidelines from the American Academy of Pediatrics (AAP), the American Medical Association, and the Society for Adolescent Medicine recommend that health care providers discuss sexuality with all adolescents and provide nonjudgmental communication about sexual orientation.2228

Despite these recommendations, several studies report low rates of disclosure of sexual orientation to health care providers by LGB adolescents and adults.2933 Obstacles to disclosure include homophobia among health care providers; a lack of provider training, knowledge, and comfort about LGB issues; and patient concerns about confidentiality.2,7,29,3444 Nondisclosure may result in missed opportunities for health care providers to offer appropriate health education and counseling, perform targeted screening and treatment, and identify individual risks. Disclosure of sexual orientation to a provider has been associated with increased levels of patient satisfaction2,29,30,33,34,36,45 and quality of care.46 Although many studies have described the health care experiences of LGB adults, few have included LGB youth.4749 One study that surveyed 18- to 23-year-olds about their experiences at ages 14 to 18 years found that only 13% of self-identified LGB youth had disclosed their orientation to a provider.47 Little is known about the health care experiences of nonclinical samples of LGB youth, or how growing public awareness and increasing societal acceptance of homosexuality in recent years50 may have affected their experiences discussing sexual orientation with a provider.

We examined the health care experiences of LGB youth using a nonclinical sample from a 2003 LGB conference. We aimed to (1) describe access to and use of health services among LGB youth, (2) determine rates of disclosure of LGB sexual orientation, as perceived by LGB youth, (3) identify potential barriers to disclosure and elicit suggestions for how to make discussing sexual orientation more comfortable, and (4) identify factors that were associated with disclosure.

METHODS
HUMAN SUBJECTS APPROVAL

This study was reviewed and approved by the institutional review board at the University of California, Los Angeles.

PARTICIPANTS

Participants were invited to take part during the Models of Pride Youth Conference held in October 2003 on a southern California college campus. This privately funded conference is an annual full-day youth empowerment event that is open to all LGB high school–aged youth from Los Angeles County. Among 192 conference participants, aged 14 to 18 years, 179 (93%) completed the questionnaire. Analyses presented here do not include 25 respondents self-identified as heterosexual, 9 who were identified as transgender (because survey items analyzed for this article focused on orientation rather than gender identity), 5 who were missing data (>90% of items missing), and 9 who had not visited a physician since realizing their sexual orientation. The analytic sample size was 131.

COMMUNITY-BASED PARTICIPATORY RESEARCH

The study was conducted using a Community-Based Participatory Research framework.5153 The head of Project 10 (Los Angeles Unified School District's LGB anti-discrimination office) partnered with the research team in developing and implementing this study. In addition, the Models of Pride conference planning committee (which included youth) provided input on the study design and questionnaire content. The UCLA/RAND Center for Adolescent Health Promotion's Community Advisory Board also participated in developing the study.

DATA COLLECTION

On arrival, conference participants received a packet containing a cover letter, information sheet, and anonymous questionnaire. Participants received a pair of movie passes for returning a packet, even if the questionnaire was not completed.

QUESTIONNAIRE AND MEASURES

The self-administered questionnaire was mostly multiple-choice and included the following topics:

  • Primary Outcome Variable: Disclosure of sexual orientation to a physician was measured with the question: “Does your doctor know that you are LGB?” This item was analyzed as a dichotomous variable.

  • Demographics: Age, gender, race/ethnicity, and maternal education were included.

  • Orientation and Disclosure: Sexual orientation was assessed on a 5-point continuum from “100% lesbian or gay” to “100% straight/heterosexual.” Youth who responded “100% straight/heterosexual” were omitted from analysis, and the remaining 4 categories were dichotomized into “100% or mostly lesbian/gay” and “bisexual or mostly straight.” Disclosure of orientation to others was measured by 5 ordered responses to the question “How ‘out’ are you overall?” (out to everyone, out to most, out to some, out to a few, not out to anyone), which were treated linearly as a predictor of disclosure. In addition, participants were asked to identify from a list everyone who knew that they were LGB (mother/stepmother, father/stepfather, sister/brother, gay friend(s), straight friend(s), teacher, counselor/psychologist, doctor).

  • Health Care Variables: Usual setting of care was measured by the question: “What kind of place do you usually go to for your health care?” Responses were coded into 1 of 3 categories: doctor's office, no usual source of care (“I don't have a place where I go for health care”), or other setting (eg, school clinic or teen health center). Length of time since the most recent visit for routine or preventive care was measured in 12-month increments from “within the past 12 months” to “more than 4 years ago”; these categories were treated as linear. Communication with a physician about sexual issues was assessed by asking, “Has a doctor ever talked to you about sex (gay or straight) or sexual health?”

  • Attitudes and Expectations: Attitude toward disclosure of patient orientation was assessed with: “How important do you think it is for a doctor to know that you are LGB in order to give you the best health care possible?” Answers ranged on a 4-point scale from “very important” to “not at all important.” The questions, “How do you think your care would change if your doctor knew that you were LGB?” and “If your doctor does know that you are LGB, how has your care changed as a result?” used a 5-point scale. Possible responses ranged from “my care would be/is a lot better” to “my care would be/is a lot worse.” We analyzed respondents separately by whether they had disclosed to their physician.

  • Reasons for Nondisclosure and Suggestions to Make Disclosure More Comfortable: All participants were asked, “What could your doctor do to make you more comfortable talking about being LGB?” and were instructed to indicate which of 6 listed items applied. Participants who had not disclosed their orientation to their physician chose from a list of 7 reasons for nondisclosure (Table 1). Items for both lists were derived from previously published qualitative work with LGB youth.46

Table 1. 
Perceived Barriers and Recommendations to Improve Disclosure of Sexual Orientation
Perceived Barriers and Recommendations to Improve Disclosure of Sexual Orientation
DATA ANALYSIS

Data were analyzed using SPSS 11.0. All hypothesis tests were 2-sided. We calculated descriptive statistics for health care utilization, attitudes, barriers to disclosing sexual orientation to a physician, and suggestions for increasing the likelihood of disclosure. Missing values for specific items were less than 5% for all variables except maternal education (13%). Missing values were replaced using mean imputation. Bivariate analyses (χ2 tests and simple logistic regression) and multivariate logistic regression were used to evaluate associations between disclosure of respondent's sexual orientation to a physician, and demographics, sexual orientation, health care experiences, and attitudes toward disclosure. Variables were included in the multivariate regression if they had at least marginal bivariate significance in our data (P<.10) or had been identified as relevant in previously published research.

RESULTS
SAMPLE CHARACTERISTICS

The sample was 57% female, 52% Latino, 21% white, 8% African American, and 19% “other.” Primary languages spoken at home were English (64%), Spanish (19%), and other (13%). The median age was 17 years (range, 14-18 years).

Most respondents (69%) identified themselves as either 100% or mostly lesbian or gay (Table 2). Respondents reported high levels of disclosure of their sexual orientation to others: 70% said they were “out to everyone” or to “most people,” specifically, to their friends (85%), mother (57%), father (45%), and teacher (52%).

Table 2. 
Sexual Orientation and Patterns of Disclosure
Sexual Orientation and Patterns of Disclosure
HEALTH CARE EXPERIENCES

Ninety percent of survey respondents had been to a physician for preventive health care within the past 2 years, and 66% had been within the past 12 months. Most participants (76%) received their health care in a physician's office, while 11% had no usual source of health care. Forty-nine percent said that a physician had ever discussed sex or sexual health with them.

DISCLOSURE OF SEXUAL ORIENTATION TO A PHYSICIAN

Sixty-six percent of study participants thought that it was very or somewhat important that a physician know their sexual orientation to provide the best health care possible (Table 3). However, only 35% reported that their physician knew their orientation, and only 21% of respondents whose physician knew their orientation said that their physician had raised the topic.

Table 3. 
Disclosure of Sexual Orientation to a Provider: Attitudes and Experiences
Disclosure of Sexual Orientation to a Provider: Attitudes and Experiences

Among youth who had not disclosed their orientation to their physician, 27% thought their care would be better if their physician knew that they were LGB, 65% thought it would have no impact on care, and 8% feared that their care would be worse. In contrast, 57% of those who had disclosed thought their care had improved as a result, 39% thought it had remained the same, and 4% felt it had become worse.

Although 17% to 23% of participants whose physician did not know their orientation cited concerns about privacy and confidentiality as barriers to disclosure, 37% stated that their physician simply had not asked about their orientation, and almost half (46%) did not think it was important (Table 1). Females were more likely than males to say that they did not know how to raise the topic (23% vs 7%, P = .05) and to report that they had not disclosed because a parent was in the examination room (34% vs 12%, P = .02). Older respondents (aged 17 to 18 years) were more likely to report that they were too embarrassed to bring up the topic of sexual orientation with a provider (22% vs 6%, P = .04). To make disclosure more comfortable, 64% of respondents thought that their physicians should “just ask” them.

In a multivariate model (Table 4), the strongest predictor of disclosure was having discussed sex or sexual health of any kind with a physician; 58% of youth who had discussed sex with their physician reported that the physician knew their orientation, compared with 9.7% who had not discussed sex (odds ratio [OR], 15.47; 95% confidence interval [CI], 4.34-55.18). The more important it was to participants that their physicians know their sexual orientation, the more likely it was that they did know (OR, 1.96 per level; 95% CI, 1.16-3.32). Youth who were more out overall were more likely to report having physicians who were aware of their orientation (OR, 2.66 per level; 95% CI, 1.28-5.57). Participants who had seen a physician for a routine physical examination more recently were more likely to have physicians who knew they were LGB (OR, 2.14; 95% CI, 1.05-4.35). The usual setting of care was no longer independently associated with disclosure after adjusting for covariates.

Table 4. 
Multivariate Predictors of Disclosure of Sexual Orientation to Provider
Multivariate Predictors of Disclosure of Sexual Orientation to Provider
COMMENT

Although 70% of lesbian, gay, and bisexual youth in this study described themselves as out to everyone or most people, only 35% reported that their physician knew of their orientation. Respondents' perceptions that their physician knew their orientation was significantly less common among those who identified themselves as bisexual or mostly heterosexual than among gay and lesbian youth. Physician knowledge of patients' sexual orientation is important in identifying both the infectious risks associated with some sexual behaviors and the psychosocial issues that some LGB youth experience. Nondisclosure of sexual orientation to health care providers may lead to missed opportunities for providers to explore individual sexual risks; provide appropriate screening; and offer guidance, information, and support to LGB youth. Specific recommendations for addressing sexual orientation have been published by the AAP and others.23,28,54

Although access to health care in this sample was generally good, with 89% of the overall sample identifying a regular place where they received health care, about half (49%) of youth recall their physician as ever having discussed sex or sexual health with them. This finding is consistent with earlier studies of general samples. A survey of providers in a large health maintenance organization found that although 68% of pediatricians asked their patients about sexual intercourse, only 17% asked about sexual orientation.55 Similarly, in a study of more than 2000 southern California high school students, 49% reported having discussed at least 1 sexual topic with a physician, but only 8% had talked about sexual orientation.56

The importance of discussing sex and sexual health with all adolescents has been stressed in guidelines for adolescent preventive services published by several professional organizations.2327,35,44,54,5759 In “Sexual Orientation and Adolescents,” the AAP states: “Most nonheterosexual youths are ‘invisible’ and will pass through pediatricians' offices without raising the issue of sexual orientation on their own. Therefore, health care professionals should raise issues of sexual orientation and sexual behavior with all adolescent patients.”28 Suggestions for discussing sexual behavior and sexual orientation have been published elsewhere.23,44,48,6063

In our multivariate analysis, having discussed sex or sexual health with a physician was the strongest predictor of disclosure of the respondent's sexual orientation, lending support to the AAP's assertion that discussion of sexual behavior with adolescent patients may help identify nonheterosexual youth who might otherwise remain unrecognized. Moreover, the second most common reason for nondisclosure cited by youth in our sample was that a physician had not asked about sexual orientation. Nearly two thirds of youth selected “just ask me” from a list of actions their physician could take to make talking about being LGB more comfortable. Because general discussions of sex with a provider were included in the multivariate model, the effects of other predictor variables in the model should be interpreted as specific to disclosure of sexual orientation after these more general discussions have been taken into account.

Earlier research suggested that many gay and lesbian adults do not disclose their sexual orientation to providers because they fear their provider will not support them or that they will receive worse care.7,30,64,65 Such fears were consistent with findings from a study in which 67% of LGB physicians surveyed said they had witnessed colleagues giving “substandard” care to patients whom those colleagues knew to be LGB.42,43,66 These historically important barriers to disclosure of orientation to a provider appear to be less salient to our study population; only 8% of youth feared that their care would be worse if their physician knew they were LGB, and only 7% worried that their physician would not approve of their orientation. It is unclear whether this difference reflects improving provider acceptance of nonheterosexual patients, as some, more recent studies suggest38; developmental differences between youth and adults; or characteristics of the current study population.

Privacy and confidentiality are important concerns for many adolescent patients and may influence decisions to seek care or disclose sensitive information to providers.40,41,44,48,56,6770 Lesbian and gay youth in 1 study identified these concerns as among the most important barriers to disclosure of sexual orientation to their provider: 75% said they had not disclosed because they did not want to discuss sexual orientation in front of a parent, 57% were afraid that their provider would tell a parent, and 26% said that a parent was always in the examination room with them.47,48 In our study, issues of privacy and confidentiality were cited by some respondents as reasons for not disclosing to a physician: 23% said that a parent was always in the room and 17% were afraid that their physician would tell a parent. Eighteen percent said reassurance that their physician would not write their orientation in their medical record would make talking about orientation more comfortable.

Some respondents also indicated that placing LGB materials in waiting or examination rooms or posting a nondiscrimination policy in the office would help them feel more comfortable. However, previous studies have reported mixed attitudes from LGB youth with regard to this approach. Although some youth reported that they would appreciate these gestures, others felt that they were unnecessary and might even make them uncomfortable.47,48,66 Most of the research in this area has focused on self-identified LGB youth, but those who are unsure of their orientation or who have disclosed their orientation to fewer people may find such indirect displays of openness more helpful. Additional suggestions for creating a safe clinical environment for sexual minority youth have been published and include staff sensitivity training and the use of gender- and orientation-neutral intake forms.2,7,16,26,35,40,57,58,61,69,70

Studies have shown various effects of disclosing sexual orientation to providers. Early studies found that many LGB adults had a negative experience when they told their physician about their sexual orientation.7,30,66 Other studies have found higher rates of satisfaction with care among those who disclosed.30,33 In a recent study that suggested that disclosure might be associated with higher quality of care, disclosure was independently associated with receipt of recommended Papanicolaou screenings among lesbian adults.46

Because we used self-reports, some respondents may have forgotten prior discussions with providers; however, we believe that discussions about orientation would usually be salient and well remembered by youth. Although our results provide an indication of the prevalence of discussions between LGB youth and their physicians about sexuality, they do not provide information on the content or quality of those discussions. Future research addressing those aspects of communication is needed for a more complete picture of the quality of care received by LGB youth.

As with all cross-sectional studies, temporal ambiguity complicates causal interpretation in this study. The directionality of the observed association between talking with a physician about sex and disclosure of sexual orientation to a physician, for instance, cannot be determined from our study. Although some youth may have disclosed their orientation because their physician initiated a conversation about sexuality, other youth may have disclosed their orientation first, leading their physician to then discuss sexuality or sexual health. In addition, it is possible that youth who said that their physician knew their sexual orientation had not disclosed directly, but rather that their physician had become aware of their orientation indirectly, through a parent or another source.

Our sample of LGB respondents is probably not representative of most LGB youth. Most participants in this study described themselves as being out to everyone or most people, and a high degree of initiative was required for them to arrange transportation to the conference at which the study was conducted. These characteristics are of most concern for prevalence estimates, and may bias our results toward higher estimates of disclosure of orientation. Nonetheless, it is not necessarily the case that the overrepresentation of highly motivated out youth biases relationship estimates of predictors with disclosure presented here. Our findings, therefore, likely fall near the upper end of the range of disclosure to providers of LGB youth.

Despite these limitations, it is striking that even among this sample of highly motivated youth who have shared their sexual orientation with most people in their lives, only about one third had physicians who were aware of their orientation. This study is one of the first to examine the health care experiences of a nonclinical sample of high school–aged LGB youth, and the results reinforce the AAP's assertion that primary care providers do not recognize the orientation or sexual experiences of many nonheterosexual youth. Nearly two thirds of our sample reported that they would be more comfortable discussing their sexual orientation if their physician would “just ask.” Further research is needed to explore the effect of disclosure or nondisclosure of sexual orientation to all types of health care providers on the quality of health care they deliver and on subsequent health outcomes.

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Article Information

Correspondence: Garth D. Meckler, MD, MSHS, Oregon Health and Sciences University, 3181 SW Sam Jackson Park Rd, CDW-EM, Portland, OR 97201-3098 (mecklerg@ohsu.edu).

Accepted for Publication: June 7, 2006.

Author Contributions:Study concept and design: Meckler, Elliott, Kanouse, Beals, and Schuster. Acquisition of data: Meckler, Beals, and Schuster. Drafting of the manuscript: Meckler, Elliott, Kanouse, Beals, and Schuster. Critical revision of the manuscript for important intellectual content: Meckler, Elliott, Kanouse, Beals, and Schuster. Statistical analysis: Meckler, Elliott, Kanouse, Beals, and Schuster. Obtained funding: Meckler and Schuster. Administrative, technical, and material support: Meckler and Schuster. Study supervision: Schuster.

Financial Disclosure: None reported.

Funding/Support: Funding for this study was provided by the National Research Scientist Award Training Grant (PE1-9001) and grants from the Centers for Disease Control and Prevention (U48-CCU915773 and U48-DP000056).

Acknowledgment: We would like to acknowledge Gail Rolf, Project 10 advisor to the Los Angeles Unified School District, for partnering with us in developing, designing, and implementing the study. We would also like to thank the planning committee for Models of Pride Youth Conference and the Community Advisory Board of the UCLA/RAND Center for Adolescent Health Promotion for their participation in the study.

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