How to Reach Sexual Minority Youth in the Health Care Setting: The Teens Offer Guidance

ABSTRACT

 

 

METHODS

 

RESULTS

The results of the Stage I expert focus group of eight youth leaders is best represented by the two NGT questions, their accompanying explanations, and the development of an “outness scale” used to describe youth. The questions were “What characteristics of a health care professional would help you to trust them?” and “What characteristics of a health care site would make you trust that the people in it can help you or serve you?” Following each question was a definition of health care professional, characteristics, and health care site. As part of Stage II, youth then developed 176 responses to provider characteristics and 168 responses to health care site characteristics. Because the top 34 rated items were used to create the survey for Stage III, the results of the NGT sessions are best presented as the items on the survey.

 

Survey Results

A total of 94 sexual minority youth completed the 34-question survey. Table 2 demonstrates the demographic characteristics of the youth that completed the survey. The participants ranged in age from 14 to 23 years, with 73% aged 17 to 21 years. Sixty-three percent of the respondents were male. Nineteen young people (20%) identified themselves as lesbians, 46 (49%) as gay men, and 22 (23%) as bisexual. A total of 66 adolescents (70%) said that they were either “out to most people” or “out to everyone.” Seventy-one percent reported seeing a health provider in the last year and 90% had seen one in the last 3 years. Table 3 lists the 34 items on the survey by descending mean Likert ratings with their respective ranking by the Marginal Homogeneity Test.

This test divided the items into six distinct ranks. Each ranking had between four and eight items that were not significantly different from each other but were significantly different from the items in the adjacent ranks.

The first rank contains items that relate to the provider’s interaction with the young person, including confidentiality, respect, and honesty. It also includes the adolescent’s concern that the provider is well-educated and pays attention to cleanliness. The concept of cleanliness also applies to the site and the instruments at the site.

The second and third ranks contain more desired qualities of providers’ interaction style including ones specific to LGBTQ youth. They include not talking down to the patient, being a good listener, not dismissing fears, being professional, and treating patients with sensitivity. Also included in these ranks are the concepts of being nonjudgmental toward LGBTQ issues, not assuming that LGBTQ youth have HIV or engage in dangerous sexual behavior, being educated about the gay lifestyle, and understanding same-sex partner needs.

Most of the items in the fourth rank have to do with general site-specific characteristics. These include a discreet staff, the choice of a male or female provider, a racially diverse staff, and a site in a safe area. The items in the fifth rank have in common site characteristics that focus on LGBTQ issues. According to these items, the site should have LGBTQ posters, a choice of an LBGT provider, services focused on LGBTQ youth, and openly gay or lesbian providers. Among the contents of the final rank are two site-related items that are specific to LGBTQ youth: having a sticker indicating that the clinic is a safe place for sexual minority youth and having magazines oriented to LGBTQ youth in the waiting room.

Using the Kruskal-Wallis test, all of the items on the survey were examined for differences among demographic subgroups. These subgroups included age, gender, sexual orientation, site of survey, and score on the “outness” scale. There were very few differences among these groups. However, females were more likely than males to desire a provider who is the same gender (p
.0001), aware and educated about the gay lifestyle (p
.03), did not dismiss or downplay fears (p
.04), and is friendly (p
.04). Older teens were more likely to be concerned about information being discussed in public areas than the younger respondents (p
.01). Less “out” youth were more likely to want health information to be displayed in a private place (p
.04).

 

Focus Group Results

Concerns not directly related to sexual minority status receive highest priority. The groups were initially shown the list of items and asked for comments on the ordering of items. All groups quickly noted that general items were rated most highly, but issues specific to sexual minority youth received lower ratings. Youth were asked why these general items were prioritized when the question specifically asked about the factors that make LGBTQ youth feel safe when they go for health care. Most responded that they had the same basic needs as all youth and that meeting those needs was the prerequisite to meeting any special needs. It is important to note, however, that youth in the focus groups related many of the general issues to the special needs of sexual minority youth. This was particularly true of the items related to privacy, honesty, professionalism, and sensitivity.

The fact that LGBTQ-specific issues were not among the highest ranked survey items generated quite a bit of controversy. Several youth felt strongly that sexual minority-specific items did not even belong on the list because being LGBTQ was not a medical issue. These adolescents stated that clinicians should focus solely on the presenting physical concern:

“. . . What you do behind closed doors, or what you do in bed, that really isn’t none of their business . . .if you’re gay or whatever, that isn’t their concern, their concern is to make sure you are healthy, and take care of your health, and that’s it.”

Facilitator field notes revealed that youth more comfortable with public awareness of their sexuality believed an informed clinician could deliver better care, whereas more secretive youth tended to state their sexuality was irrelevant to clinicians. A female subject exemplified the viewpoint that clinicians should be aware of their patient’s sexuality:

“. . .Lesbians have specific health problems that tend to be fairly common within the lesbian community. . . Alcohol use is much higher, smoking is much higher, and the fact that you’re pretty likely not to get pregnant at some time in your life really does affect how your body works. And I’d like my doctor to be aware of that.”

Clinician-related items that affect LGBTQ youths’ perception of safety. The importance of privacy was discussed at length in all of the focus groups, generating more discussion than any other topic. Several survey items dealt directly with whether information would be treated as private (e.g., confidentiality, not discussing patient information in public areas, staff discretion, and fear of disclosure to other providers). Privacy issues were also raised repeatedly during discussions on professionalism, honesty, respect, and sensitivity. Fear was expressed about information, particularly related to sexuality, getting back to parents. Participants agreed that if they trusted clinicians to keep privacy, they would be more likely to share personal information. Several youth offered advice on how clinicians could reassure youth of confidentiality, one young person suggested:

“If they said, ‘everything you tell me now is just between you and me,’ it would make me a lot more comfortable talking . . . If there was something, like an actual physical piece of paper from somebody saying that is my responsibility to keep whatever you are telling me confidential, then that would make me feel a lot better. And probably help me to say more to them.”

Youth in every group agreed that clean clinicians, instruments, and sites are a top priority. They were afraid that diseases could be easily transmitted if cleanliness and sterility were not priorities.

“You go the doctor to be treated for illnesses and if you go and things aren’t clean and the person isn’t clean you might pick up something else.”

“. . . if there was someone with HIV, I wouldn’t know, but I wouldn’t want to give them what I have because it could be deadly for them. And I would not want to come in contact with HIV if things weren’t clean.”

The survey respondents also rated the item “the provider is medically well-educated” quite highly. When asked how a person would know this, youth offered several ideas including getting recommendations from friends, family, or a trusted clinician. Several youth responded with concrete answers such as, “You can look at the door at his certificates and stuff.” There was also support for the idea that how the clinician interacts with a patient is a good indicator of medical knowledge. One person offered, “If they seem like they’re stupid, then that’s when you take off.”

Many youth felt that clinicians should have sensitivity training regarding the issues of sexual minority patients as part of their medical training. In particular, they believed that clinicians should have an understanding of how sexual orientation may impact on emotional health.

“. . . sometimes a provider meet(s) a person who is dealing (with) a depression about their sexual orientation. And they just want to hurt themselves; they need some kind of assistance to help them with the mental situation. Now the doctor gotta pretty much know about the gay lifestyle, (and) where’s the first place to look at to give this child support for whatever dilemma they’re going through.”

Although some adolescents stated that many sexual minority youth do not go to doctors because they perceive that doctors do not understand their needs, others told stories of positive interactions with clinicians. These had in common trust, respect, and the clinician’s understanding of LGBTQ youth issues. The following is a description of one such relationship:

“My doctor is really cool, he’s never rude, any questions I ask him, he answers full right there to the T. And ‘cause I came out last year, I started talking to him . . . I don’t think there was a question that I have had, where I haven’t asked him.”

Although having an LGBT provider was near the bottom of the ranking, this issue was discussed at length in every group. Although the subject was interesting to most people, and important to many people, there was no consensus on the matter. Some youth said that having a gay or lesbian provider would make it easier for them to explain what was going on in their lives. Others stated strongly that only gay and lesbian providers could truly understand their perspective.

“. . . when I go to an Ob/Gyn, she needs to understand that I’m a lesbian and I do not like anything penetrating my body. And as a female, that’s what you are going to an Ob/Gyn for. So she would need to understand or be sensitive to that aspect of me. Because the only way she’s going to get me on the table is to calm me down . . . But if she’s a straight woman who enjoys penetration, she might be like, child, girl . . .”

It was clear, however, that for most youth the providers’ understanding of LGBTQ issues outweighed his/her orientation:

“It really doesn’t matter if the person’s gay or not, because as long as . . . they know about the gay lifestyle and what you’re going through, it shouldn’t really matter as long as they are gay-friendly.”

Site-related items that may be attractive to LGBTQ youth. Generally, youth felt that symbolic efforts to enhance their comfort, such as displayed stickers or LGBTQ-oriented magazines, would make little difference to them. Although some stated these would indicate a gay-friendly, comfortable environment, others expressed fear that these items would give away their orientation. One discussion follows:

“I think it’s important because you put a little sticker on there, means you’re gay-friendly, and that gays will want to go there.”

“Yeah, but that’s like labelizing us. That’s like the gayborhood; it’s only for gay people.”

“I’m saying, just because you put up a sticker, not only gay people going to go there . . . Some people don’t even know what that means. A rainbow? Oh and they walk right in.”

Survey respondents rated the placement of magazines and health information lowest among all survey items. Nevertheless, these items generated some interesting discussion regarding who would, and who would not, access these materials. There was general agreement that closeted youth would be unlikely to take openly displayed materials. A solution seems to have been generated by the item, “Health information is offered in a private place.” One youth explained why implementing this idea made sense to him:

“I know a lot of people that don’t want to pick up information if you walk in and there’s a whole room full of people waiting . . . I think that should be in the room where you get examined. When you (are) done getting examined and getting dressed, you can just get your stuff. Pick up the pamphlets and leave. Brochures for HIV and STDs should be in the room with you, too, not outside in the waiting room with the rest of the public.”

Actions that offend LGBTQ youth. Youth in every focus group recalled bad clinical interactions and stated clearly what offended them. First, they told of how many opportunities were lost when heterosexuality was assumed.

“I think that with sexual minority youth, a lot of health care providers are very heterosexist, where they just assume you are heterosexual. And that’s a big problem. They never really get to the point with that.”

Youth also made it clear that the relationship suffers if a clinician reacts negatively when they reveal their sexuality. Youth described instances of doctors changing demeanor when they revealed their sexuality and even of leaving the room and being replaced by another clinician.

“They changed in the middle of the conversation after they found out I was gay. They bring in the nurse or the nurse will bring in the guy because he was gay. And I was like ‘How dare she bring in a gay guy for me to talk to and I was happy talking to her.’”

“We were talking ‘cause I had went for the appointment to talk about hormones, and she told me to hold on a minute and she didn’t come back… On a certain level, I think it was okay for her to do that if she was uncomfortable, but she should have said . . . We have somebody who can help you better rather than just leaving the room and then have a completely different doctor walk in and not say anything about why. Bait and switch. That’s f-d up.”

Participants stated they are also offended when clinicians assume they are at greater risk for disease:

“Are you going to get HIV tested? Don’t think that just because somebody’s gay that that means they have to have HIV . . . Don’t place labels on people.”

Finally, group members stated how offensive it was to receive sexual health information from a judgmental stance:

“. . . when you tell them that you are gay, they be like—do you have oral sex and use a condom? WHY NOT?! They seem like they are jumping down your throat or something like that.”

Discussion

All clinicians who care for adolescents see LGBTQ youth in their practices. These adolescents may remain hidden because they have not identified themselves as sexual minority youth to their provider, but they exist nonetheless. Estimates of the prevalence of homosexuality in the adult population range from 3% to 10% [33–35]. Similar frequencies have been reported in teens, with a much higher response of “unsure” with younger adolescents [2,36]. Youth who are unsure are likely to experience turmoil, much as youth who have self-identified.

The process of sexual identity formation may produce a great deal of stress and is often accompanied by victimization as youth face verbal and physical abuse at school and in their homes. The increased stress and victimization of sexual minority youth have been linked to the increase in health risk behaviors [13,14,17,19,20].

A growing literature recognizes the importance of meeting the needs of sexual minority youth and offers advice and education in how to deal with LGBTQ adolescents [3,9,29,30,37]. In fact, the American Academy of Pediatrics has issued a policy statement on homosexuality and adolescents reaffirming practitioners’ duty to provide comprehensive care for all youth, including sexual minority youth [38]. However, the existing literature approaches this issue from an adult viewpoint. There is little documentation of how these youth interact with the health care system from their perspective.

This study reports ideas that sexual minority youth consider important to them when interacting with clinicians and clinical sites. First, sexual minority youth prioritized most highly the same issues as all youth, as demonstrated by previous research with Philadelphia-area teens [39]. These issues include confidentiality, infection control, competency, respect, and honesty. They emphasized that these are the prerequisites of care for all adolescents, and first and foremost, they have the same needs as others. However, the youth explained that these issues become even more important in making them feel safe in discussing their sexual orientation. In particular, the assurance of confidentiality became a recurrent theme in the explanation of many of the other responses. Cheng et al. [40] reported that less than half of adolescents remembered ever talking about confidentiality with their health care provider. As important as this issue is to adolescents, in general, sexual minority youth who participated in this study emphasized repeatedly that disclosure of their orientation must be kept confidential.

Second, although participants in this study generated responses to questions about clinicians and sites, it was clear that when they consider safety in the health care setting, they prioritize characteristics and actions of the clinicians that serve them. They want clinicians who are nonjudgmental and honest, honor privacy, are good listeners, do not talk down to them or dismiss their fears, and treat them with sensitivity. The females in this study preferred to have female providers, but males did not indicate a preference; these findings are similar to those found in a study that sampled a cross-section of youth [41]. The youth care about diversity of the clinic staff and indicate that they appreciate knowing the site has some openly gay or lesbian providers. Although some youth prefer having an openly gay or lesbian provider directly serve them, most cared much more about the provider’s knowledge and attitude about sexual minority youth.

Third, LGBTQ youth shared that they have issues specific to their sexual orientation that need to be addressed if they are to feel safe in a health care setting. They report that they must get a feeling from the provider that he or she truly understands and cares about their health before they decide to disclose their orientation. They need clinicians to be open minded, as well as educated about LGBTQ issues. Discretion is key to gaining their trust, especially if their family is known to the clinical practice. In general, they are not made to feel more comfortable just because the clinicians “appear” to be sensitive to LGBTQ populations by placing rainbow stickers on their door or providing LBGTQ magazines in the waiting room, although some youth appreciated the effort.

Finally, youth were clear that specific actions offend them and affect their satisfaction, as well as their likelihood of returning for care. They have a strong concern that they will be judged or labeled. They perceive that some providers equate homosexual behaviors with HIV/AIDS and resent that association. Similarly, they are offended by the assumption that their sexual behaviors are dangerous or painful. They tire of the assumption that they are heterosexual and report in focus groups that it is an assumption they often do not correct. All of these issues create lost opportunities for effective behavioral counseling.

Clinicians are among the few adults who can have a consistent and confidential relationship with an adolescent. An assessment of risk is key to maintaining health for this population [42,43]. Although many doctors express the desire to serve LGBTQ youth and acknowledge their important role, many are not confident in their skills and knowledge of the issues [44]. This may stem from a lack of training in this subject area. In fact, the average time spent on gay and lesbian health care issues in general in American medical schools is 3.5 hours, suggesting that better education in this area is needed [45].

To date, there are no studies that demonstrate conclusively that these recommendations will, in fact, result in an improvement in the health status of LGBTQ youth. However, in a recent article, Blake et al. [46] reported that gay-sensitive HIV instruction in schools results in lowered sexual risk behavior in gay and lesbian adolescents. Although this relationship might be explained by other factors, this does provide some evidence that open discussion of homosexuality positively influences the behavior of sexual minority youth.

There are important limitations with this study. First, the participants may not be representative of sexual minority youth. Seventy percent of the participants categorized themselves as “out to most people” or everyone. It is quite possible that less “out” youth would feel differently about the issues discussed. However, because many sexual minority youth are not open about or fully aware of their sexuality, it is impossible to recruit a truly representative sample. Second, the mean age of the survey respondents was 19 years. Younger adolescents may have answered questions differently. Third, the youth in this study were all from a northeastern city or its metropolitan region. The issues that these adolescents face may be quite different from their rural and small-town counterparts and even different from youth from other metropolitan areas. Most importantly, this study explored sexual minority adolescents’ perceptions of factors they believe would enhance their likelihood of feeling safe in a health care setting rather than outcomes.

Conclusions

To best meet the special needs of sexual minority youth, clinicians should be equipped with the interpersonal skills and knowledge desired by these youth. This study demonstrates that, from an adolescent’s perspective, optimal interaction with sexual minority youth foremost requires the same interpersonal skills desired by all adolescents, as well as specific knowledge of how to address LGBTQ issues and, more pointedly, how not to offend LGBTQ patients. Future research is needed to explore whether providers educated to meet these needs produce better outcomes for sexual minority youth.

 

Acknowledgements

We would like to acknowledge the contribution of Drs. Thomas Dilling and Deborah Gill, who helped in study design and facilitated early focus groups. We would also like to thank Dr. Carrie Jacobs, director of The Attic, and The Attic’s Youth Planning Committee for their support and guidance. Above all, we appreciate the adolescent participants who shared their views on how we can better serve them.

 

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