Experiences and Perspectives of Transgender Youths in Accessing Health CareA Systematic Review
Question What are the experiences, challenges, and needs of transgender youths in accessing health care?
Findings In this systematic review, we identified 6 themes regarding the experiences and needs of transgender youths: experiencing pervasive stigma and discrimination in health care, feeling vulnerable and uncertain in decision-making, traversing risks to overcome systemic barriers to transitioning, internalizing intense fear of consequences, experiencing prejudice undermining help-seeking efforts, and experiencing strengthened gender identity and finding allies.
Meaning This review suggests that improving access to gender-affirming services with a cultural humility lens and addressing sociolegal stressors may promote engagement in care, minimize the use of unsafe interventions, and improve health outcomes in this population.
Importance Transgender and nonbinary youths have a higher incidence of a range of health conditions and may paradoxically face limited access to health care.
Objective To describe the perspectives and needs of transgender youths in accessing health care.
Evidence Review MEDLINE, Embase, PsycInfo, and the Cumulative Index to Nursing and Allied Health Literature were searched from inception to January 2021. Qualitative studies of transgender youths’ perspectives on accessing health care were selected. Results from primary studies were extracted. Data were analyzed using thematic synthesis.
Findings Ninety-one studies involving 884 participants aged 9 to 24 years across 17 countries were included. We identified 6 themes: experiencing pervasive stigma and discrimination in health care, feeling vulnerable and uncertain in decision-making, traversing risks to overcome systemic barriers to transitioning, internalizing intense fear of consequences, experiencing prejudice undermining help-seeking efforts, and experiencing strengthened gender identity and finding allies. Each theme encapsulated multiple subthemes.
Conclusions and Relevance This review found that transgender youths contend with feelings of gender incongruence, fear, and vulnerability in accessing health care, which are compounded by legal, economic, and social barriers. This can lead to disengagement from care and resorting to high-risk and unsafe interventions. Improving access to gender-affirming care services with a cultural humility lens and addressing sociolegal stressors may improve outcomes in transgender and nonbinary youths.
Transgender and nonbinary people make up around 0.5% of the world’s population (25 million people), and most are children, adolescents, and young adults.1,2 A detailed list of transgender-associated terms and definitions is presented in eTable 1 in the Supplement. Transgender and nonbinary youths face considerable disparities in access to health care and outcomes.1,3-6 They are exposed to stigma and violence,1 have an increased risk of anxiety and depression, and are more than 20 times more likely to die by suicide than the general population.1,3 Transgender and nonbinary people have a high prevalence of substance abuse and are more likely to smoke compared with their peers.1 Transfeminine individuals have a disproportionate burden of HIV infection, with a global prevalence of 20%.6
In addition to general health care needs, transgender and nonbinary people often require specific medical interventions, namely hormone therapy, gender-affirming surgery, and reproductive care. However, transgender and nonbinary people have reported difficulties in accessing safe treatment and quality care.5 In many countries, health care for transgender and nonbinary youths are not explicitly addressed in legislation and policy, and patients encounter legal and insurance-associated barriers in accessing care.3,6 This can lead to disengagement from health services and resorting to nonprescription hormone use or self-performed surgeries, which can lead to life-threatening complications.7,8
There is very limited understanding of the experiences, challenges, and needs of transgender and nonbinary youths. A systematic review of qualitative studies on the perspectives of transgender and nonbinary youths can generate more comprehensive evidence that spans different populations and health care contexts. We aimed to describe the attitudes and experiences of this population in accessing health care to inform strategies to improve the quality of care and health outcomes.
We conducted a systematic review and thematic synthesis of primary qualitative studies in which the data were reanalyzed across all eligible studies.9-11 We followed the Enhancing Transparency of Reporting the Synthesis of Qualitative research (ENTREQ) framework.12 Ethics approval and informed consent of participants were not required for this systematic review.
Qualitative studies that described the experiences and perspectives of transgender children, adolescents, and youths (aged up to 24 years, based on the upper age limit used to define young people by the World Health Organization13) on access to health care were eligible. We excluded studies that did not elicit or report data from transgender children and young people and non–English language articles to minimize misinterpretation of linguistic nuances and meaning. Some studies included both transgender and nonbinary participants; however, we excluded nonbinary identities because the studies did not elaborate on data specific to this population.
The search strategy is provided in eTable 2 in the Supplement. Searches were conducted in MEDLINE, Embase, PsycInfo, and the Cumulative Index to Nursing and Allied Health Literature from database inception to January 2021. Google Scholar and the reference lists of relevant studies were also searched. The first author (L.S.H.C.) screened the abstracts and excluded studies not meeting inclusion criteria, and 2 authors (J.K. and C.G.) cross-checked the screening. The full texts of potentially relevant articles were then assessed for eligibility.
The transparency of reporting of each study was independently evaluated by 5 authors (L.S.H.C., J.K., A.B., C.G., and D.J.T.) using the Consolidated Criteria for Reporting Qualitative Research (COREQ).14 This includes criteria specific to the research team, study methods, study context, analysis, and interpretations. Any discrepancies were resolved by discussion with the senior author (A.T.).
Thematic synthesis was used to analyze the data.11 All text and quotations from the results/findings and conclusion/discussion sections of the included studies were imported into HyperRESEARCH software version 3.7.3 (Researchware Inc). One author (L.S.H.C.) performed line-by-line coding of the text and inductively identified concepts reflecting access to health care. Similar concepts were then grouped into themes and subthemes. Investigator triangulation was achieved by discussing the preliminary themes with 4 authors (A.B., C.G., D.J.T., and C.S.H.) who had read the articles. This ensured that the findings captured the full range and depth of the data.
We included 91 articles13,15-104 from 17 countries involving 884 participants (41 studies did not specify the number of patients aged 24 years or younger) (Figure 1). The study characteristics are provided in Table 1. Detailed study characteristics are provided in eTable 3 in the Supplement. Participants were aged 9 to 24 years. The sex and gender identity of participants were reported in 25 studies (27%)15,17,18,20,30,33-35,40,47,50,51,63-65,67,80-83,85,87,89,104 and 33 studies (36%),13,15,17,18,20,21,30,32-35,40,47,50,51,55,60,63-65,67,68,77,80-85,87,89,104 respectively. In total, 180 participants (20.4%) were assigned male at birth, 304 (34.4%) identified as male, 288 (32.6%) identified as female, and 95 (10.7%) were nonbinary or unsure of their gender identity. Eleven studies (12%)17,20,29,30,32,40,64,67,80,82,87 reported on commencement of medical or surgical interventions (eg, pubertal blockers, cross-sex hormones, or gender-affirming surgery), with at least 158 participants (17.9%) having accessed these interventions.
The studies reported from 5 to 20 of the 24 COREQ items (eTable 4 in the Supplement). Eighty-three studies (91%)13,15,17-20,22-33,35-52,54-60,62-65,67-94,96,98-104 described the sampling strategy. Fifty-nine studies (65%)13,15,18,19,25-29,31-33,35-39,41-46,48,50-52,54-57,61,62,65-76,78,79,81,83,86,91-96,102-104 stated the venue of data collection; 58 studies (64%)15,20,21,23,25-30,32,36-43,46,48,50,51,53-60,62-66,68-76,78-82,84-86,89,91-95,97,98,100-102,104 included questions, prompts, or a topic guide; and 54 studies (59%)13,17,18,20,22,24,26-36,38,41,44-46,49-52,54-56,58-61,64-66,70,71,75,76,79,81-83,89-91,96-99,101-103 reported the use of software to support data analysis. A total of 88 studies (97%)13,15-20,22-27,29-94,96-104 provided quotes from participant or raw data.
We identified 6 themes: being hurt by pervasive stigma and discrimination in the health system, feeling vulnerable and uncertain in decision-making, traversing risks to overcome systemic barriers to transitioning, internalizing intense fear of consequences, experiencing prejudice undermining help-seeking efforts, and experiencing strengthened gender identity and finding allies. eTable 5 in the Supplement details the number of studies in which the themes were identified. The respective subthemes are detailed, and concepts unique to particular groups (eg, age, country) and stage of gender transition are indicated where specified. Selected supporting quotations are provided in Table 2. Figure 2 depicts the associations within and across themes.
Participants felt “petrified”15(p347) to enter health care spaces because of having their gender identity mocked and dismissed by staff16 or other patients.17 They felt that some clinicians denied them care, breached confidentiality to other staff members and patients,18 or used other staff members as chaperones.16 They believed this was because of a moral opposition or “providers feeling ‘uncomfortable’”19(p237) regarding their transgender or nonbinary status: “They don’t want to treat it [gender dysphoria], so you better just figure it out on your own.”20(p259) Their fear of discrimination was exacerbated by having to repeatedly out themselves to staff without knowing how they would react to their identity.19,21,22
Some participants were angered by clinicians who they thought made prejudiced assumptions about their sexual preferences, HIV status, and recreational activities. Others reported clinicians “preaching”18(p9) to them to revert their gender status18 or pursue fertility preservation despite their expressed preference not to do this.23 Some described clinicians asking irrelevant questions about their transgender status during unassociated medical appointments, performing unnecessary examinations on their genitals, or exhibiting them as a case study to other physicians, which made them feel violated, “like a bloody research animal,”24(p353) or like a “freak of nature.”17(p86)
Improper pronoun use was common, distressing, and annoying for participants, who felt that it reflected a disrespect and doubt about their gender identity.25 Some at the beginning of their transformative process described clinicians dismissing their gender identity as “just a phase”17(p85) to “grow out of”17(p85) or “need[ing] to be corrected,”17(p85) which was confusing and made them reluctant to continue to access care. Others reported being allocated to gender-incongruent hospital wards, which made them feel unsafe because of fear of how other patients would react to them.22,24 They also felt “discouraged”17(p84) by administrative processes that did not represent them, such as intake forms using binary language or wristbands displaying the legal name that they no longer identified with.
Participants were frustrated by clinicians they felt had “poor and inadequate”26(p872) knowledge of transgender anatomy and health preferences.26 Some were angry about having to educate their physicians, while others were afraid of being harmed because of ignorance. For example, youths assigned female at birth experienced pain during speculum examinations if their physician was unaware of the effects of testosterone therapy on vaginal atrophy and “refused to use a really small speculum.”27(p2140) Those who wished to change clinician faced limited options; “[I] always ended up going back because there’s nowhere else to go.”28(p28)
Participants noted a shortage of transgender-specific and nonbinary-specific clinical guidelines, data on long-term treatment outcomes, and information on available services. At the beginning of the transition process, some did not know “where to go”29(p57) or “where to start”29(p57) in obtaining medical care, which prolonged their gender dysphoria. Some resorted to online forums and social media despite doubting the credibility of information. Those undergoing medical transition were concerned that clinicians could not give them a straight answer30 on treatment’s adverse effects, including how it would affect fertility, sexual health, and cancer risks.
Some participants, particularly those from low-income countries or with minimal education, were uncertain about how being transgender affected their risk of sexually transmitted infections and gynecological malignant conditions. Some transmasculine youths believed they had an elevated risk of cervical cancer because of testosterone treatment.31 Others were uncertain about HIV/AIDS and treatments available, such as preexposure prophylaxis (PrEP). Younger participants found sex education at school “super heteronormative”32(p1838) and not applicable to them.
Participants underwent strict medical and psychological evaluations to be deemed eligible to have hormonal and surgical therapy. They felt pressured to fit a stereotype and were angered by the need to take arbitrary measures such as “getting a haircut”62(p1377) to prove to clinicians they were “trans enough.”20(p259) Some who experienced from familial disapproval despaired when clinicians necessitated parental approval of therapy.33 Others felt powerless in decision-making and feared that access to therapy could be withdrawn at any time. They tried to present themselves as the perfect patient, concealing their lifestyle choices and emotional struggles with gender transition, even if they felt they needed psychological support.
Participants in lower socioeconomic strata struggled to afford the high cost of treatment, including hormones, surgery, fertility preservation, and HIV care, as well as associated travel.34 Some older transfeminine youths turned to prostitution or survival sex35 as “the only way to get enough money,”29(p56) which they regretted: “It sucks. I am honestly not out there on the street working for Gucci glasses….funding for surgeries needs to be appropriated.”29(p56) Some older youths resorted to illegal options, including street hormones, feminizing silicone, and needle sharing, with some self-administering large medication doses in an attempt to achieve more immediate results.36 Others approached unregulated private clinics or traveled outside their home country (eg, to Mexico) to obtain therapy despite the “many horror stories.”29(p53) They were aware of the increased risk of HIV infection, dose-associated adverse effects, and legal ramifications of their risk-taking behavior; however, they took this “chance”37(p46) “to pass and be a little accepted”37(p45) as their affirmed gender identity.
Participants felt exhausted by the travel burden and prolonged waiting periods to access services for transition and HIV treatment. Young transfeminine individuals working in prostitution faced particular difficulty because of their work schedules: “We are up until 2 or 3 am and to wake up at 6 or 7 am is very hard.”38(p3306) Some interpreted the limited services as a sign of institutional discrimination,27 causing them to feel discouraged and give up HIV treatment.39 Others in the US felt they had no choice but to relocate to states with more accessible health care,40 and some became homeless after the move.40
Participants resented strict laws and complex insurance policies that prevented them from accessing gender-affirming care or HIV treatment. Some older transmasculine participants maintained their female gender status so they would be covered by insurance for Papanicolaou tests. Others “worked the system”41(p22) through activities such as avoiding cervical cancer screening to increase their risk of malignant conditions to obtain a funded hysterectomy.42 Participants who had not yet undergone legal name or gender marker changes encountered scrutiny over discrepancies with their health care card and insurance documentation and were refused care. Others who had resorted to illegal treatment or left home underage avoided health care services for fear of legal consequences.
Participants were terrified of revealing parts of their bodies that they strongly disliked and did not want to acknowledge43 during medical examinations. Stripping away gender-congruent clothing, binders, and prosthetics was described as “stripping away [their] identity.”27(p2145) Sexual and reproductive health checks, such as cervical cancer screening, could trigger gender discordance and an “existential crisis.”27(pp2144) The use of gender-specific medical terminology, such as vagina, ovaries, and prostate, was similarly anxiety provoking.
Some experienced unpleasant adverse effects from hormone therapy, including mood swings, depression, weight gain, and sexual dysfunction. Others were concerned about long-term effects on fertility. Transmasculine participants undergoing fertility preservation found temporarily pausing testosterone therapy and taking ovary-stimulating hormones “so tough that I started to self-harm again.”43(p347) They were aware of the return of menstruation; having a different body odor;43 and the swelling of their hips, chests, and abdomens.
Participants considering hormonal and surgical transition were apprehensive about whether treatment would work.25 They also wondered whether they were strong enough to adjust to their new gender identity40 and could “handle what everyone’s going to say.”40(p48) Those undergoing transition grieved loss and change in their identity and some felt they “had to mature more than [they] were able to”25(p3584) in adjusting to their new identity. “There is inner turmoil, and it took a few months to [realize that]…it was the right decision.”44(p213)
Some older participants avoided HIV testing because of shame and fear of a positive result, including concerns that it would “prevent [their] transition.”45(p992) Others who had been recommended HIV treatment or PrEP were hesitant, concerned about potential interactions with hormone medication that they prioritized at all costs: “If PrEP stopped my hormone progress, I would be irate …I’d be like [snaps fingers], I am off [PrEP].”46(p1069) Others felt taking HIV medications added to their regimen of pills46 and worried about adverse effects.
Participants felt “kicked out of the loop”37(p45) by society, experiencing rejection from peers, employers, teachers, and landlords. Some transgender youths, especially those with HIV, struggled to overcome stigma and were reluctant to attend treatment clinics in case of breach of confidentiality: “If someone is HIV positive, even our own [transgender] people move away from them.”47(p45) Feminine participants working in prostitution avoided HIV testing in fear of potentially losing clients and income.
Some were traumatized by familial disapproval. They could not access services through their parents’ insurance, were physically and mentally abused, and were disowned without financial support. “My parents…used to beat me to force me to change my behavior…[My dad] used to burn the female clothes I used to buy.”48(p922) Some younger participants repressed their gender identities and postponed their body transformations to protect themselves from family rejection. Those with HIV concealed their serostatus, making it difficult to take medications and attend clinic appointments.
Some younger participants struggled with gender incongruence, identifying themselves as “freaks”44(p213) or separate from “real girls”49(p5) or boys. They felt ashamed50 and lacked confidence to pursue treatment; they needed “someone to push me in the right direction to achieve my goal.”44(p215) Others felt their gender dysphoria was not valid enough51 to be taken seriously by adults and were therefore reluctant to seek health care.
Some participants who embraced their identity and had a positive relationship with their body were better able to “express [themselves] in health care centres”52(p37) and discuss long-term goals, such as fertility preservation. Transmasculine participants reframed gynecological checks, such as Papanicolaou smears, as a way of protecting their physical health (“Man up and get your Pap done!”27(p2141)). Taking charge of their well-being empowered participants to routinize health care. Participants who were HIV positive and had undergone transition felt hopeful and committed to treatment: “There is more reason to live [now that I] can be who [I] want to be.”53(p518)
Participants were grateful for clinicians who provided gender-affirming care and treated them as equal partners54 in decision-making: “My HIV doctor explained the virus to me, explained the medications… Now I can explain it to [others].”55(p60) Some felt more “[drawn] into care”56(p473) by clinicians who understood their lifestyle and initiated discussions regarding sexual health, mental health, and stigmatized experiences, such as domestic violence and illicit hormone use.
Community-based clinics that provided hormones, management of sexually transmitted infections, and general checkups were convenient. So too were flexible outreach services, such as mobile HIV testing. Participants appreciated clinicians who also helped to navigate health insurance, obtain housing, and apply for legal name and gender changes.
Some young participants used the internet and social media to explore their gender identity and the process of medical transition. Participants with HIV found motivation to pursue treatment through online support groups. Others did due diligence by researching their options to find gender-affirming care.42 They felt that online platforms with clinicians could allow those early in the transition journey to obtain reliable information anonymously and could act as a stepping stone to seeking care in person.
Some participants saw their friends, transgender community members, and others living with HIV “like family”57(p731) who “guided [them] along”57(p731) in navigating health care, identifying transfriendly clinicians, and coordinating HIV treatment. Others gained a “sense of solidarity”58(p964) from attending group workshops, which “highlight our strength as the LGBTQ [lesbian, gay, bisexual, transgender, and questioning] community.”59(p8) Some younger participants depended on their parents to help them manage numerous appointments and difficult health care interactions: “[My mother] uses her credibility to help me go where I need to go.”60(p193)
Transgender and nonbinary youths contend with numerous challenges in accessing health care that exacerbate their sense of vulnerability and gender incongruence. We generated broad insights about the experiences of transgender youths regarding access to health care, and most studies (85%) were conducted within the past decade.
Provision of care for transgender youths needs to address their medical, surgical, psychosocial, and legal needs. Based on our findings and current research1,5,6,105 regarding barriers to care, we have provided suggestions for improving gender-affirming, safe, and inclusive care; addressing confidentiality concerns and enhancing access to services; managing psychosocial and lifestyle risks; and providing specific transgender health services and information (Table 3). Some clinical workplaces currently use teaching tools, such as didactic lectures, online modules, and lunchtime educational sessions to increase clinician knowledge of transgender-specific social, political, and treatment concepts. However, these interventions are often singular events based on raising awareness and may group LGBTQ topics together.106,107 Table 3 includes suggestions for medical education to empower clinicians to address systemic care barriers faced by transgender youths.
Transgender and nonbinary youths are concerned with long-term outcomes of treatment, yet there is limited high-quality evidence to inform decision-making. We suggest that randomized clinical trials and registry-based observational studies are needed to investigate the long-term effects of hormone and surgical therapy, including adverse effects and outcomes in patients’ mental health and broader quality of life. In conducting randomized clinical trials, it is important to adhere to ethical guidelines.108 Research should also align with current professional standards that refute conversion, reorientation, or reparative therapy.108 Consensus statements and guidelines on supporting transgender children and adolescents in a transgender-specific clinic are also required. Furthermore, more research is needed to assess other social and legal drivers of ill health in transgender youths, including violence, social stigma, limited access to housing, education, and employment.
However, our study has some potential limitations. Some studies included nonbinary participants, indicated by demographic information in which participants identified as multiple genders or no gender. However, these studies did not elaborate on data specific to this nonbinary population, and therefore their views may not have been delineated. Many articles did not report the number of patients who had commenced medical or surgical intervention, so we were unable to draw detailed comparisons by type or stage of treatment.
Transgender and nonbinary youths contend with limited availability of gender-affirming services, strict gatekeeping measures to accessing therapy, and restricted insurance coverage and thus feel fearful, vulnerable, and uncertain when accessing health care. They experience barriers to accessing health care that are largely attributable to legal, economic, and social deprivations, discrimination, violence, and homelessness. Specific strategies to improve access to gender-affirming care services with a cultural humility lens, provide support during the transition process, and manage comorbidities and sociolegal stressors may contribute toward improved therapeutic outcomes and quality of life among transgender and nonbinary youths.
Accepted for Publication: March 3, 2021.
Published Online: July 19, 2021. doi:10.1001/jamapediatrics.2021.2061
Corresponding Author: Lauren S. H. Chong, MD, Kids Research, The Children’s Hospital at Westmead, Westmead, Sydney, NSW 2145, Australia (lauren.chong@hotmail.com).
Author Contributions: Drs Chong and Tong had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: Chong, Clarke, Kohn, Hanson, Tong.
Acquisition, analysis, or interpretation of data: Chong, Kerklaan, Baumgart, Guha, Tunnicliffe, Hanson, Craig, Tong.
Drafting of the manuscript: Chong, Kohn, Guha.
Critical revision of the manuscript for important intellectual content: Chong, Kerklaan, Clarke, Baumgart, Tunnicliffe, Hanson, Craig, Tong.
Statistical analysis: Chong, Guha, Hanson, Craig.
Administrative, technical, or material support: Clarke, Guha, Hanson.
Supervision: Kerklaan, Clarke, Kohn, Tong.
Other: Hanson.
Conflict of Interest Disclosures: Dr Kohn reported being a clinical supervisor for Dr Chong. Prof Allison Tong reported being a research supervisor for Dr Chong. No other disclosures were reported.
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