Lesbian, gay, bisexual, transgender, queer, and questioning (LGBTQ) youth – a group including non-heterosexual, gender non-conforming, and gender dysphoric children, adolescents, and young adults on multiple developmental trajectories toward LGBT adulthood -- are more likely than their peers to experience stigma in the health care environment.1,2 Providing care that is affirming and inclusive – that is, care that draws on knowledge and skills enabling a health care provider to work effectively with LGBTQ youth – is critical to improve health outcomes and quality.2–4 The broader clinical environment, clinic flow and other organization functions, and administrative systems aso need to be considered in order to ensure that clinical services are welcoming. Increasingly, examining these components and the messages they send to LGBTQ youth is not simply good care, but should be the baseline standard health care organizations apply.5 This is particularly important since prevalence estimates reveal that LGBTQ youth are inevitably a part of every general medical practice, whether providers realize it or not.6
This article begins by reviewing special considerations for the care of LGBTQ youth, then turns to systems-level principles underlying inclusive and affirming care. It then examines specific strategies that individual providers can use to provide more patient-centered care, and concludes with a discussion of how clinics and health systems can tailor clinical services to the needs of LGBTQ youth.
Special considerations in LGBTQ youth care
Ensuring high-quality care for LGBTQ youth requires providers to understand principles of caring for LGBTQ individuals as well as those of caring for young people more generally. Although most LGBTQ youth are physically and mentally healthy, certain LGBTQ youth are at elevated risk of human immunodeficiency virus (HIV) infection, sexually transmitted infection (STI), pregnancy, obesity, substance use disorders, mood and anxiety disorders, eating disorders and other body image-related concerns, peer bullying (please see Valerie Earnshaw, Laura Bogart, V. Paul Poteat, et al: LGBT Youth and Bullying, in this issue), and family rejection (please see Sabra Katz-Wise, Margaret Rosario and Michael Tsappis: LGBT Youth and Family Acceptance, in this issue).1,7 LGBTQ youth may avoid seeking health care due to fear of discrimination, and even once in care, may fear disclosure of their sexual orientation or gender identity and therefore withhold truthful responses from their health care providers.1 Transgender youth face the added burden of locating providers with sufficient knowledge, competence, and experience to affirm their gender identity.8,9 LGBTQ youth are also disproportionately more likely to be homeless,10 and in many cases, this may be due to parental rejection or other trauma.11
Critical to understanding care of LGBTQ individuals and underlying many of these health disparities is stigma (please see Mark Hatzenbeuhler: Clinical Implications of Stigma, Minority Stress, and Resilience as Predictors of Health and Mental Health Outcomes, in this issue).12,13 Stigma is defined as the labeling of a specific group, and associated stereotyping, separation, status loss, and discrimination.13,14 Both interpersonal (i.e., stigma between patients and other people, which in the health care setting may include providers and other clinic staff) and structural stigma (i.e., stigma resulting from systems and organizations, which in the health care setting may include the clinical environment, clinic flow, and other functions) have been barriers to inclusive and affirmative care for this population.12,13,15,16
As an example of how stigma affects the health of youth, rejection of an LGBTQ individual by his or her parents (please see Sabra Katz-Wise, Margaret Rosario and Michael Tsappis: LGBT Youth and Family Acceptance, in this issue) may lead to separation and isolation, loss of resources (such as housing, food, clothing, and money), disadvantaged financial and social status, and ongoing discrimination. The links to social determinants of health (such as homelessness and poverty) and to adverse health outcomes (such as mood and anxiety problems, and substance use and related harms) are obvious. Stigma adversely affects LGBTQ youth, and is perpetuated in some health care settings. This is perhaps not surprising given the current lack of attention to educating medical students, trainees and clinicians about issues related to LGBTQ health.17,18
Ensuring inclusive and affirmative health care environments for LGBTQ youth also requires in-depth understanding of general issues pertinent to caring for all children, adolescents and young adults.19 Youth have unique physiological, neurocognitive, and psychosocial needs; accordingly, their care should be developmentally appropriate to these. Appropriate handling of youths’ confidentiality is important; when sensitive information is disclosed by LGBTQ youth, it is a matter of paramount importance, discussed later in this article.22 For youth in the process of transition from pediatric to adult clinical services, care can become fragmented.20,21
Youth often use language pertaining to sexual orientation and gender identity that may be unfamiliar to health care providers. Currently, there is expansive thinking about both sexual orientation and gender identity, particularly among youth. Many in the LGBTQ community even reject the terms lesbian, gay, bisexual, and transgender as not capturing all sexual orientations or gender identities.23 For example, many youth describe themselves as queer, an umbrella term inclusive of all non-heterosexual sexual orientations and non-cis-gender identities. Some youth describe themselves as pansexual, asexual, or aromantic regarding sexual orientation. Gender identity is often thought of as outside the traditional male-female binary and on a spectrum; many youth self-describe as gender non-conforming (defined in this volume as nonconformity in gender role expression, but sometimes used by youth differently to refer to gender identity variance) and use terms such as “gender-queer” or “gender-non binary”. These issues, and how providers and their organizations can address them to generate LGBTQ youth-affirming clinical services, are outlined in subsequent sections.
Systems-level principles underlying LGBTQ youth-friendly services
The World Health Organization and other leading professional organizations have highlighted principles that should underlie all youth-friendly care,19,24–26 and in addition, there are a number of technical reports and clinical practice guidelines to help clinicians apply these principles specifically to the care of LGBTQ youth.1,5,27,28 Recognizing the unique biological, developmental, and psychosocial needs of children, adolescents, and young adults, and especially those who are LGBTQ, health services for youth should be optimized with regard to availability, accessibility, acceptability, and equity.19
Availability refers to the presence of health care providers with knowledge, competence and experience working with young people with current or developing LGBTQ identities, feelings, or behavior. Accessibility is the relative ease with which LGBTQ youth can obtain care from an available provider. Acceptability is the extent to which clinical services are culturally competent and developmentally appropriate for LGBTQ youth, and as a critical component of this, the degree to which parents are involved when appropriate (especially in the care of younger children) and confidentiality is assured and protected with youth while maintaining collaborative relationships that include appropriate boundaries with parents, other guardians, community members like school personnel, and colleagues. Equity refers to the extent to which clinical care and services are friendly to all LGBTQ youth, regardless of sexual orientation, gender expression, gender identity, race, ethnicity, language, ability to pay, housing status, and insurance status, among other factors. Each of these principles is reviewed below and is summarized in Table 1.
Table 1.
Principle | Definition | Examples |
---|---|---|
Availability | The presence of health care providers with knowledge, competence and experience working with young people and with people with current or possibly developing LGBTQ identities, feelings, and/or behavior |
|
Accessibility | The relative ease with which LGBTQ youth can obtain care from an available provider |
|
Acceptability | The extent to which clinical services are culturally competent and developmentally appropriate for LGBTQ youth, and to which confidentiality is assured and protected |
|
Equity | The degree to which clinical care is friendly to all LGBTQ youth, regardless of race, ethnicity, language, ability to pay, housing status, and insurance status, among other factors |
|
Adapted from Tylee A, Haller DM, Graham T, Churchill R, Sanci LA. Youth-friendly primary-care services: how are we doing and what more needs to be done? Lancet. 2007;369(9572):1565–1573 and Department of Maternal Newborn Child and Adolescent Health. Making Health Services Adolescent Friendly - Developing National Quality Standards for Adolescent Friendly Health Services. Geneva, Switzerland; 2012, with permission.
Availability
Availability of LGBTQ youth-friendly services in many locales is limited by access to a workforce of health care providers with experience working with youth and LGBTQ populations.27,29,30 This workforce includes a wide range of disciplines, including physicians, nurses, psychologists, social workers, dieticians, clinical assistants, community workers, clerical staff, and other professionals involved in health care delivery. The existing LGBTQ youth-friendly workforce is currently concentrated in urban areas and may be non-existent in some rural and other locales.31,32
Even where clinical services for LGBTQ youth are available, quality of care may vary if patients and their caretakers do not receive the full set of recommended physical and mental health screening services, anticipatory guidance, and treatment.27,28,33–36, 73 For example, Chlamydia trachomatis screening for the general adolescent population has shown wide provider variability in adherence to recommended screening practices.37,38 Although well-established clinical practice guidelines exist for providers caring for LGBTQ youth,27, 73, 28 such guidelines are relatively new and there is likely to be wide variability in receipt of recommended screening and interventions across health care settings. Furthermore, as new knowledge emerges (as is often the case in the rapidly evolving field of LGBTQ youth health care), providers are likely to require ongoing training to remain up to date. Therefore, ensuring the availability of the full range of appropriate clinical services should not be viewed as a static, binary outcome that is either present or absent, but rather as a continuous process subject to ongoing measurement and quality improvement.39
Accessibility
Even where appropriate health services exist and where practices adhere to guidelines, providers should consider the accessibility of their services – not only with regard to the physical location, but also with regard to ease of entry into such services. LGBTQ adolescent and young adult-friendly services should be located near where LGBTQ youth live, study, or work, and should be accessible by public transportation or with free or low-cost parking.19 In particular, LGBTQ youth may congregate in certain parts of cities or towns that are more LGBT-friendly, and locating clinical services nearby may be a logical choice.2,40 Since LGBTQ youth are disproportionately likely to be homeless,10 considering where and how homeless youth access health services is also critical and should take into consideration locations that homeless youth are likely to be present. In some cities, services are provided by a mobile van that travels to particular locations to maximize accessibility.41
Where conveniently located, health care providers should ensure optimal accessibility in how adolescents obtain services. A critical component of the patient-centered medical home42 is ‘enhanced access’,43,44 which entails offering expanded hours during evenings and weekends,45 same-day urgent care appointments,46,47 drop-in visits,48 and allowances for patients who arrive late for appointments.49,50 Increasingly, youth and their caretakers are likely to expect internet-based scheduling and communication with health care providers through email or even telemedicine, where allowable.51–54
Acceptability
Especially salient in the care of LGBTQ youth is ensuring that even when services are available and accessible, clinical services have acceptability. Often, improving acceptability requires assessing the clinical environment and understanding ways that it can become more welcoming for and supportive of LGBTQ youth and families. For example, health brochures and other written materials available in the clinic should not assume heterosexuality, and certain topics – particularly safe sex, reproductive health, intimate partner relationship safety, family acceptance, and bullying – should be tailored to address the unique needs of LGBTQ youth.2
Traditional bathrooms can be very problematic for transgender youth.55 For clinics with single-occupancy bathrooms, clinics should avoid labeling them as “male” or “female”, or have an explicit, readily visible policy allowing youth to choose the bathroom that matches their identified gender rather than their biologic sex. For clinics with shared bathrooms, clinics should allow youth to choose the bathroom that matches their identified gender with a highly visible policy statement, and consider installing stalls with walls that reach to the floor for greater privacy.
More than simply identifying and eliminating potential barriers to care for LGBTQ youth, clinical leadership should be proactive about creating an affirming and inclusive environment for LGBTQ youth. This starts with the most fundamental aspect of a clinic: its mission statement.2,5 Whether a clinic serves a large population of LGBTQ youth or the broader general adolescent population, it should explicitly state that it is welcoming, inclusive and affirming of all youth with regard to sexual orientation, gender expression, and gender identity. To reinforce the mission statement and make clear that the clinical environment is welcoming to LGBTQ youth, signs and stickers might be placed in several well-trafficked locations (e.g., rainbows or other widely understood symbols in clinic check-in areas and examination rooms). Providers might wear lapel pins or lanyards that reaffirm these messages to show that they as an individual clinician also seek to provide care sensitive to the needs of LGBTQ youth. These approaches establish an environment that reduces interpersonal and structural stigma and promotes a safe clinical space for LGBTQ youth.
Providing appropriately confidential clinical services for LGBTQ youth is central to achieving acceptability, since fear of a breach of privacy is a common reason that adolescents avoid seeking care.22,56 Approaches individual providers should take to protect confidentiality are discussed below.
Equity
Finally, medical care has not been universally equitable for LGBTQ youth. 57,58 To achieve true equity, it must be provided to all groups of lesbian, gay, bisexual, transgender, queer, and questioning youth. For example, providers may have competence in working with gay, lesbian or bisexual youth, but may not feel comfortable or have comparable experience in caring for transgender and gender nonconforming youth.59,60 Providers also need to ensure that services are inclusive of and sensitive to the needs of diverse racial/ethnic groups of LGBTQ youth, including those of color and who are non-native English speaking patients.61 Finally, providers should ensure that services are provided to all LGBTQ youth regardless of ability to pay. Many youth, particularly those without legal immigrant status in the United States, without health insurance, or without stable housing are likely to have unmet health needs.62–64 LGBTQ youth who have been rejected by their families are especially at risk of being uninsured and homeless. Through public entitlements, grants or other funding opportunities, providers should attempt to provide free or low-cost services to LGBTQ youth who are unable to pay for clinical services.
Strategies for individual providers
Large-scale system changes can be daunting to a health care organization seeking to improve its care for LGBTQ youth. However, some solutions can be adopted more rapidly by providers and clinic staff and may be as simple as changing one’s language and approach. Specific strategies to make a clinic more inclusive and affirming for LGBTQ youth that are more immediately available to providers and their organizations are summarized in Box 1.
Box 1. Specific strategies for providers to create a welcoming environment for LGBTQ youth.
Language |
Use words that help establish a trusting relationship; avoid words that build barriers to care. Language and word choice is critical not only in your clinical encounter, but also in all communication with nurses, clinical assistants, front desk staff, and all other staff.
|
Expectations |
Be aware that LGBTQ youth may have had prior adverse health care interactions and may not immediately feel comfortable disclosing sensitive information with you.
|
Questions |
Understand that LGBTQ youth may have diverse and fluid identities with regard to sexual attraction, self-identified sexual orientation, gender identity, and gender expression.
|
Barriers |
Understand that navigating health care systems can be frustrating, and LGBTQ youth experience the same barriers to care as other youth, and more.
|
Charting |
Be aware that health care records and insurance plans often use the name a patient was assigned at birth, which can be problematic for transgender youth who have changed their name. The gender listed often reflects a patient’s assigned gender at birth.
|
Handling Mistakes |
Know that even experienced practitioners sometimes make mistakes with names and pronouns. Be prepared to correct them when they occur.
|
Adapted from: National LGBTQ Health Education Center. Providing Welcoming Services and Care for LGBTQ People. The Fenway Institute, Boston, MA: 2015, with permission.
Confidentiality
Establishing and safeguarding confidentiality with youth as a crucial element of a safe, viable treatment relationship, concomitantly with maintaining collaborative relationships that include developmentally appropriate privacy from adult parents or guardians, school personnel, colleagues, and other important adults in the youth’s life, is critical in the care of all youth, but especially so for LGBTQ youth. At the beginning of every encounter, providers should verify that confidentiality has been appropriately explained, assured, and fully protected in a manner consistent with applicable pediatric guidelines and ethics. Doing so is standard of care,37,38 and is especially important for youth who have not yet disclosed any non-heterosexual attractions, behavior or identity or gender-variant identity to family or friends.37,38 Improper disclosure of such details could damage the patient-provider relationship and lead to physical or emotional harm if caretakers or others have a negative reaction. Thus, information on sexual orientation and gender identity should be especially carefully protected.22,24,33,36 Although in certain clinical situations (such as suicidal ideation, homicidal ideation, or suspicion of abuse or neglect) local law may require disclosure to the parent or guardian of a minor patient, it may at the same time allow or require providers to protect a youth’s confidentiality of sexual and reproductive health concerns throughout treatment.22 Therefore, any mandatory disclosures should be handled in a way that discloses only the minimum information necessary to ensure immediate safety and preserves remaining confidentiality. In addition to protecting youth and preserving the clinical relationship with them, it may also improve the accuracy of youths’ responses to questions about risk behaviors and other sensitive topics, because they may feel more confortable disclosing personal information.65 Clinicians should also maintain confidentiality in medical records (both handwritten and electronic) by specific indications in clinical notes regarding any portions that are not to be shared with parents or guardians.22
For youth who are accompanied by a parent or guardian at their visit, the provider should ensure he or she spends time alone one-on-one with the patient.22,36 The provider can then update the parent on non-confidential aspects of care that the patient agrees to share. In some cases, providers may be instrumental in engaging families in difficult conversations regarding sexual orientation or gender identity if the patient wishes.
Despite efforts to assure confidentiality, some patients may not feel comfortable answering direct questions regarding sexuality, gender nonconformity and/or gender identity or related peer or family difficulties from the clinician honestly, and using collateral or alternatve information sources (including electronic or other forms of screening before the visit or in the waiting room) may help LGBTQ youth provide more honest responses to these and other sensitive topics.66,67 Unfortunately, for youth who are on parents’ insurance plans, explanations of benefit (EOBs) can sometimes reveal confidential care (e.g., sexually transmitted infection [STI] screening and/or treatment). There are currently efforts in some states to limit insurance companies’ communication of such confidential information to primary policyholders.68 Thus,it is important for clinicians to consider that inadvertent disclosure of sensitive clinical details can occur when they order lab tests or prescribe medications for STIs, and should plan accordingly. In some cases, offering care free-of-charge may be the only way to avoid accidental disclosure through EOBs; in some locales, use of special grant funds allows providers to offer free and confidential testing and treatment that avoid the need to bill patients’ insurance. Clincians should bear similar issues in mind when making a plan for delivering test results after an encounter or when writing or approving prescriptions, as well as when they are dispensed.
Strategies for clinics and health systems
The principles and strategies outlined above are important general approaches to improving the friendliness of clinical care for LGBTQ youth. However, delivering affirmative care may require moving past a one-size-fits-all approach and exploring the specific needs of the LGBTQ youth population of a clinic or health system. For example, the needs of a clinic serving primarily gay and lesbian youth is likely to be very different from one serving primarily transgender youth. Clinics serving young LGBTQ adults are likely to face different clinical scenarios from those who treat primarily younger adolescents. The needs of rural LGBTQ youth may be quite different from those of urban LGBTQ youth. Children who are or may be growing up, LGBTQ can and do live everywhere. Although core clinical practice guidelines exist and should be adhered to, clinics should explore the needs of their own population in order to develop and improve the services they offer LGBTQ youth. Here, we discuss approaches to assessing the needs of the population that a clinic serves.
Readiness assessment
As highlighted above, providers can make a number of small, easily accomplished changes to substantially improve the inclusiveness of their clinical services for LGBTQ youth. However, some clinics or health systems may seek to create broader changes and should first consider a readiness assessment that combines an analysis of population health data with qualitative study methods.2,14 For example, in evaluating their own population health data, a clinic might examine its rates of positive STI screens to understand which youth are most likely to test positive, and consider how best to deliver health services to those youth. However, examination of population health data alone is likely to lead to excessive focus on adverse health outcomes to the exclusion of positive health behaviors that clinicians might promote.69 Additionally, population health data alone are unlikely to fully describe patient satisfaction and experience of care, including highlighting ways in which LGBTQ youth may experience stigma in the health care environment.2,13
Therefore, clinics should supplement their study of population health data with qualitative methods in their needs assessment.70 Methodologic approaches might include focus groups of LGBTQ youth, or if younger adolescents are to be interviewed or there are confidentiality concerns, one-on-one interviews.71 Parents should also be engaged, either in their own separate focus groups or in interviews. Key informant interviews with community stakeholders (e.g., community workers and other service providers, educators, and faith leaders) should also be conducted to understand how LGBTQ youth interface with the world beyond the clinic’s walls.
Questions for youth, families, and stakeholders should focus on all aspects of the care experience and examine the systems-level principles outlined earlier (availability, accessibility, acceptability, and equity)19,24 as well as individual provider-level characteristics. Details considered might include clinic location, hours, services (including low-cost or free and confidential preventive screening, treatment and referral), costs, mission statement, facilities, signage (including evidence of LGBTQ friendliness), educational materials, confidentiality, and perceived inclusiveness for youth of color.19,25 Providers should also consider the extent to which they might bolster outside services to aid youth in the broader community (e.g., help with housing and other social services, legal support, help with employment searches, and collaborations with schools, faith-based organizations and other community organizations). The advantage to this approach is that clinics leveraging community programs do not need to necessarily duplicate such services within their own walls.
Such a needs assessment is likely to uncover unanticipated ways that a clinic might better serve its LGBTQ youth population. Not only should the needs assessment serve to help providers understand new services they might develop or preexisting services they might improve, but it also should help clinical leadership understand new measures for quality improvement.72 For example, one process measure might be asking all patients about sexual orientation and gender identity or about a preferred name and pronouns for the youth, and recording this in a prominent place in the patient care flow (for youth comfortable with this information being freely available) or in a confidential part of the electronic medical record (for youth who wish to maintain the privacy of this information). Youth might also help providers develop LGBTQ youth-specific patient satisfaction measures for the clinic.26 Each clinic should let the needs and requests of their own clinic population drive the development of quality measures, and ensure that such measures are frequently assessed to drive ongoing improvement.
Trainings
Many clinics choose to offer training on competent care for LGBTQ youth to their clinic staff. Trainings can be offered as an in-person workshop, or where such workshops are not readily available, online webinars offer excellent convenience (e.g., http://www.lgbthealtheducation.org/training/on-demand-webinars/). Training is available in both cultural and clinical competence. Some aspects of cultural competence training are appropriate for all clinic staff (including front desk and other administrative staff), such as proper use of pronouns and preferred names, to ensure competence at every moment of the care experience.55 Clinical competence trainings, such as those reviewing clinical practice guidelines for the care of LGBTQ youth,27,28,73,74 are more appropriate for clinicians. Such trainings may be critical given the lack of formal medical education on LGBTQ health care otherwise available to many providers, particularly those who trained some time ago.17 Providers and clinics might consider reaching out to local organizations who serve youth in the community or to other nearby health care providers with expertise in serving LGBTQ youth to help arrange trainings.
Conclusion
Reevaluating and redesigning systems of care and individual provider practices to improve clinical services for LGBTQ youth should be a priority for health care organizations.5 Some changes, such as changing the language clinic staff use when working with LGBTQ youth, can be put into practice immediately with minimal overhaul of clinical services. Others require a more in-depth readiness assessment and reorganization of preexisting practices. However, the up-front investment is likely to pay off for both patients and providers. Based on population estimates, all general medical providers are likely already caring for LGBTQ youth but may not realize it because youth are struggling with their own identity or may not be ready to disclose.6 It is not the task of the provider to identify LGBTQ youth, but rather to ask appropriate questions and signal support for when youth are ready to disclose, and then offer further support and resources. LGBTQ youth are especially susceptible to stigma and discrimination in the traditional health care setting and yet have important physical and mental health care needs. Realizing the goal of creating a welcoming, inclusive, and affirming health care environment can improve health care outcomes for this historically marginalized group and create a rewarding practice for providers.
Key Points.
Lesbian, gay, bisexual, transgender, and questioning (LGBTQ) youth may experience interpersonal and structural stigma within the health care environment.
Inclusive and affirmative care for LGBTQ youth requires a careful understanding not only of the unique aspects of LGBTQ health care, but also of skills unique to caring for youth more generally.
Although most LGBTQ youth are physically and mentally healthy, certain LGBTQ youth are at elevated risk of human immunodeficiency virus (HIV) infection, sexually transmitted infection (STI), pregnancy, obesity, substance use disorders, mood and anxiety disorders, eating disorders and other body image-related concerns, peer bullying, and family rejection.
Health care systems should be mindful of the availability, accessibility, acceptability, and equity of their services with regard to LGBTQ youth.
Large-scale system changes to improve care for LGBTQ youth can be daunting to a health care organization, but some solutions can be adopted rapidly by individual providers and clinic staff and may be as simple as changing one’s language and approach.
Acknowledgments
Dr. Hadland is supported by the Division of Adolescent and Young Adult Medicine at Boston Children’s Hospital and the Leadership Education in Adolescent Health Training Program T71 MC00009 (MCH/HRSA) and by a National Research Service Award 1T32 HD075727 (NIH/NICHD).
Footnotes
Conflict of Interest Statement
The authors have nothing to disclose.
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