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Adolescent and Caregiver Perspectives on Receiving Gender-Affirming Care in Primary Care
Pediatrics
Abstract
Background:
Transgender and gender-diverse (TGD) adolescents experience barriers to receiving gender-affirming care. Delivering services in the pediatric primary care setting may help facilitate improved access. With this study, we aimed to explore TGD adolescents' and caregivers' experiences receiving primary care services and their perspectives regarding gender-affirming care delivery in pediatric primary care.
Methods:
TGD adolescents aged 14 to 17 and caregivers of TGD adolescents currently receiving gender-affirming medical care participated in 1-hour-long, semi-structured, individual, virtual interviews. Each interview was recorded and transcribed. Transcripts were then individually coded, and themes were generated iteratively by using a reflexive thematic analysis framework. Recruitment of each group continued until thematic saturation was reached.
Results:
A total of 33 participants (15 adolescents and 18 caregivers) completed interviews. Adolescent participants (mean age of 15.7 years) predominantly identified as transmasculine or trans male (73%), and caregiver participants were predominantly mothers (83.3%). Four themes were identified, which included (1) barriers, such as microaggressions and poor psychosocial support, (2) benefits, such as existing trusted relationships with primary care providers (PCPs) and convenience, (3) improvement strategies, such as training and interdisciplinary collaboration, and (4) opportunities for integrating primary care and specialty gender-affirming care.
Conclusions:
TGD adolescents and their caregivers reported previous negative interactions with PCPs; however, some desired to receive gender-affirming care in this setting, citing increased convenience, efficiency, and availability. Participants highlighted an ongoing need for further work to provide resources, education, and training to PCPs and their staff and improve PCP-to-specialist communication and collaboration.
... Studies examining TGD adolescents' experiences with PPCP's suggests many have had un-affirming interactions with providers that influence TGD adolescents' comfort disclosing their identity and seeking future care [4,5,13]. In one study, most TGD adolescents reported rarely or never having positive, gender-affirming interactions when scheduling, registering, or waiting for appointments [5]. ...
... Caregivers of TGD youth also report substantial difficulties finding PPCPs who are affirming of their child or adolescent and experienced caring for TGD youth [4,7]. In a study of parents of TGD adolescents in Australia, 23.3% reported needing to visit two or more PPCPs to receive the help they were looking for with regards to gender-affirming care [7]. ...
Purpose of Review
Transgender and gender diverse (TGD) youth are a growing population. This paper aims to review the perspectives of TGD adolescents, their caregivers, and their providers regarding the care of TGD youth in the primary care setting and discuss how to create affirming clinical environments and provide quality primary care for TGD youth.
Recent Findings
TGD youth and their caregivers report substantial difficulties finding pediatric primary care providers (PPCPs) who have experience providing affirming care. Similarly, PPCPs report a lack of knowledge and training that limits their confidence in caring for TGD youth.
Summary
PPCPs are well-positioned to improve health outcomes for TGD youth and provide the support TGD adolescents and their caregivers need. It is important for PPCPs to create inclusive clinical environments, understand the specific health needs of TGD youth, and educate themselves about how to provide affirming care.
... As in our findings, researchers in that study reported that predominant emotions about abortion restrictions included feeling scared and sad (42%), with reasons for these feelings ranging from favoring a right to abortion to concern for autonomy, safety, and choice [4]. Our study also contributes to knowledge regarding adolescent perspectives on genderaffirming care restrictions and access; past research with adolescents and parents has suggested similar negative emotions and concerns [20][21][22]. ...
Objectives
Restrictive policies on abortion and gender-affirming care have increased in recent years, particularly in some Midwest states, and can have a disproportionate impact on young people. We sought to explore adolescent perspectives on such policies.
Study design
We conducted virtual semistructured interviews with 39 participants aged 16 to 19 residing in the Midwest between April and June 2023, exploring participant reactions to state policies on abortion and gender-affirming care.
Results
Analysis revealed most participants opposed these restrictions, expressing concerns about the politicization of health care and the impact on their lives and the lives of loved ones. Policies also influenced future living decisions, with many expressing that a state’s policies on abortion and gender-affirming care would impact whether they wanted to attend college or live there.
Conclusions
This study highlights the largely negative responses of young people who will be voting for the first time in the 2024 elections to restrictive policies on abortion and gender-affirming care in the Midwest.
Implication
Findings indicate that policy makers should take into account young peoples attitude towards gender affeiming care and abortion bans when conaidering future legislation.
... La escasez de programas de atención médica integral para niños, niñas y adolescentes transgénero representa un obstáculo para una afirmación social y médica segura 15 , sumado al hecho de que la mayoría de las investigaciones son realizadas en adultos 2,16 . A pesar de que en Colombia se cuenta con sentencias de la Corte Constitucional que protegen los derechos de personas trans, se sigue experimentando resistencia social para aceptar completa y abiertamente a personas con género diverso 17 . ...
La identidad de género se configura desde la infancia.Objetivo: explorar la experiencia en la construcción de un género diverso en la adolescencia en su contexto familiar y social.Sujetos y Método: Estudio cualitativo exploratorio que usó el método de Teoría Fundamentada y sus técnicas analíticas de codificación, categorización y comparación constante. Se realizaron 15 entrevistas semiestructuradas a jóvenes de entre 12 y 21 años, asistentes de un Centro Psicopedagógico Especializado de Colombia, sumado al aporte en 3 de las entrevistas, de adultos familiares cercanos. Se cumplieron los requerimientos éticos para estudios de este tipo.Resultados: La incongruencia entre cuerpo e identidad de género inicia con un conflicto interno que permite la exploración del ser como una labor inherente al individuo. La adolescencia exacerba la necesidad de reconocimiento de esa identidad. Se evidencia que la identidad de género es un proceso dinámico de construcción individual, permeado por el contexto familiar - social, que en ocasiones se agrede al imponer estándares hegemónicamente binarios: hombre-mujer; arquetipos que promueven la discriminación con graves consecuencias para la salud física y mental. Un manejo integral debería acoger y facilitar el proceso de construcción de un género diverso en la adolescencia.Conclusiones: La experiencia de un género diverso inicia en la infancia con la sensación de incongruencia cuerpo /identidad de género y se intensifica en la adolescencia, siendo la disforia predominante. La aceptación propia, el apoyo familiar y el inicio de la afirmación son fuentes de resiliencia que facilitan la revelación plena de un género diverso.
... La escasez de programas de atención médica integral para niños, niñas y adolescentes transgénero representa un obstáculo para una afirmación social y médica segura 15 , sumado al hecho de que la mayoría de las investigaciones son realizadas en adultos 2,16 . A pesar de que en Colombia se cuenta con sentencias de la Corte Constitucional que protegen los derechos de personas trans, se sigue experimentando resistencia social para aceptar completa y abiertamente a personas con género diverso 17 . ...
Objetivo:
explorar la experiencia en la construcción de un género diverso en la adolescencia en su contexto familiar y social.
Sujetos y Método:
Estudio cualitativo exploratorio que usó el método de Teoría Fundamentada y sus técnicas analíticas de codificación, categorización y comparación constante. Se realizaron 15 entrevistas semiestructuradas a jóvenes de entre 12 y 21 años, asistentes de un Centro Psicopedagógico Especializado de Colombia, sumado al aporte en 3 de las entrevistas, de adultos familiares cercanos. Se cumplieron los requerimientos éticos para estudios de este tipo.
Resultados:
La incongruencia entre cuerpo e identidad de género inicia con un conflicto interno que permite la exploración del ser como una labor inherente al individuo. La adolescencia exacerba la necesidad de reconocimiento de esa identidad. Se evidencia que la identidad de género es un proceso dinámico de construcción individual, permeado por el contexto familiar - social, que en ocasiones se agrede al imponer estándares hegemónicamente binarios: hombre-mujer; arquetipos que promueven la discriminación con graves consecuencias para la salud física y mental. Un manejo integral debería acoger y facilitar el proceso de construcción de un género diverso en la adolescencia.
Conclusiones:
La experiencia de un género diverso inicia en la infancia con la sensación de incongruencia cuerpo /identidad de género y se intensifica en la adolescencia, siendo la disforia predominante. La aceptación propia, el apoyo familiar y el inicio de la afirmación son fuentes de resiliencia que facilitan la revelación plena de un género diverso.
Purpose: To explore transgender and nonbinary (TNB) young adults' (1) interest in receiving gender-affirming medications through telemedicine before age 18 years and (2) willingness to initiate this care with primary care providers (PCPs). Methods: Data were from a survey of TNB young adults who had not received gender-affirming medications before age 18 years. Chi-square and Wald tests identified demographic differences in telemedicine interest and willingness to initiate medications with their PCP as minors. Results: Among 280 respondents, 82.5% indicated interest in telemedicine and 42.0% were willing to initiate medications with their PCP. Black/African American respondents were more likely to indicate interest in telemedicine than White and multiracial respondents. Respondents from rural areas were more likely to indicate willingness to initiate medications with their PCP than those from urban areas. Conclusions: Telemedicine expansion and further support for PCPs may represent critical opportunities to promote equitable access to adolescent gender-affirming care.
Objective: To examine how specialist-to-pediatric primary care provider (PPCP) consultative support may impact PPCP comfort in providing gender-affirming care. Methods: PPCPs in West Virginia completed an electronic survey. T-tests compared comfort providing gender-affirming care and rank-sum tests compared the practicality of four consultative support modalities by time in practice and specialty. Results: Of 51 participants, 47.1% had been in practice for <10 years and 59.6% were trained in pediatrics. PPCPs with <10 years in practice and those trained in pediatrics were more comfortable providing gender-affirming care than those in practice >10 years and those trained in family medicine. PPCPs felt that telemedicine was more practical than tele-education, although they reported all consultative support modalities would increase comfort providing this care. Conclusions: Access to consultative support can increase PPCP comfort providing gender-affirming care, although certain modalities may be more effective for PPCPs with varying levels of experience and specialty training.
Background:
Access to virtual care has increased since the beginning of the COVID-19 pandemic, yet little is known about transgender and gender diverse (TGD) youth's experiences and perspectives on receiving care via telemedicine.
Objective:
The purpose of this study was to explore these experiences to 1) inform necessary changes to the provision of pediatric gender-affirming care and 2) help providers and health systems determine if and how telemedicine should be made available post-pandemic.
Methods:
Youth (14-17) who completed a telemedicine visit in the Seattle Children's Gender Clinic were invited to participate in a semi-structured interview exploring perceived advantages/disadvantages of telemedicine and preferred visit modalities. Interview transcriptions were analyzed by two research team members using an inductive thematic analysis framework.
Results:
Fifteen TGD youth completed an interview. Commonly cited advantages of telemedicine were convenience and comfort with having visits in their own environments. Reported disadvantages included technical issues, discomfort with the impersonal nature, lack of familiarity with the platform, and privacy concerns. Overall, slightly more youth preferred in-person visits over telemedicine, referencing both specific characteristics of the clinical visit (i.e., initial vs. return, complexity) and proximity to the clinic as reasons for this preference. Although a plurality of TGD youth preferred in-person visits, they also recognized the value of telemedicine and the impact it may have in facilitating access to care.
Conclusions:
Given variations in needs and visit complexity, our study supports the provision of both in-person and telemedicine modalities as options for pediatric gender-affirming care.
OBJECTIVES:
Geographic barriers limit access to clinical care in the United States for transgender and gender-diverse (TGD) youth. Some factors differentiating access to care are variability in state laws/policies, the number of available clinical care programs and mental health providers for TGD youth.
METHODS:
We aggregated data from the Human Rights Campaign for pediatric clinical care programs for TGD youth, the Movement Advancement Project for state-by-state assessment of gender identity laws and policies, and Psychology Today for mental health providers for TGD youth by state. Current prevalence rates for TGD youth were applied by state with 2020 Census data. Findings were summarized as a whole and per capita by state, region, and country overall.
RESULTS:
The South has the highest number of TGD youth per clinic (36 465–186 377), and the lowest average equality score in gender identity laws and policies (1.96). The Midwest has the highest number of TGD youth per mental health provider (278–1422). The Northeast has the lowest number of TGD youth per clinic (11 094–56 703), the highest average equality score in laws and policies per state (17.75), and the highest average number of TGD youth per mental health providers (87–444).
CONCLUSIONS:
Findings support there are barriers to TGD youth care throughout the United States, especially the South and Midwest. Increasing medical and mental health care for TGD youth is likely to improve their health and well-being. Enacting gender identity protective laws/policies would allow for equal treatment and access to care among TGD youth.
Importance:
Transgender and nonbinary (TNB) youths are disproportionately burdened by poor mental health outcomes owing to decreased social support and increased stigma and discrimination. Although gender-affirming care is associated with decreased long-term adverse mental health outcomes among these youths, less is known about its association with mental health immediately after initiation of care.
Objective:
To investigate changes in mental health over the first year of receiving gender-affirming care and whether initiation of puberty blockers (PBs) and gender-affirming hormones (GAHs) was associated with changes in depression, anxiety, and suicidality.
Design, setting, and participants:
This prospective observational cohort study was conducted at an urban multidisciplinary gender clinic among TNB adolescents and young adults seeking gender-affirming care from August 2017 to June 2018. Data were analyzed from August 2020 through November 2021.
Exposures:
Time since enrollment and receipt of PBs or GAHs.
Main outcomes and measures:
Mental health outcomes of interest were assessed via the Patient Health Questionnaire 9-item (PHQ-9) and Generalized Anxiety Disorder 7-item (GAD-7) scales, which were dichotomized into measures of moderate or severe depression and anxiety (ie, scores ≥10), respectively. Any self-report of self-harm or suicidal thoughts over the previous 2 weeks was assessed using PHQ-9 question 9. Generalized estimating equations were used to assess change from baseline in each outcome at 3, 6, and 12 months of follow-up. Bivariate and multivariable logistic models were estimated to examine temporal trends and investigate associations between receipt of PBs or GAHs and each outcome.
Results:
Among 104 youths aged 13 to 20 years (mean [SD] age, 15.8 [1.6] years) who participated in the study, there were 63 transmasculine individuals (60.6%), 27 transfeminine individuals (26.0%), 10 nonbinary or gender fluid individuals (9.6%), and 4 youths who responded "I don't know" or did not respond to the gender identity question (3.8%). At baseline, 59 individuals (56.7%) had moderate to severe depression, 52 individuals (50.0%) had moderate to severe anxiety, and 45 individuals (43.3%) reported self-harm or suicidal thoughts. By the end of the study, 69 youths (66.3%) had received PBs, GAHs, or both interventions, while 35 youths had not received either intervention (33.7%). After adjustment for temporal trends and potential confounders, we observed 60% lower odds of depression (adjusted odds ratio [aOR], 0.40; 95% CI, 0.17-0.95) and 73% lower odds of suicidality (aOR, 0.27; 95% CI, 0.11-0.65) among youths who had initiated PBs or GAHs compared with youths who had not. There was no association between PBs or GAHs and anxiety (aOR, 1.01; 95% CI, 0.41, 2.51).
Conclusions and relevance:
This study found that gender-affirming medical interventions were associated with lower odds of depression and suicidality over 12 months. These data add to existing evidence suggesting that gender-affirming care may be associated with improved well-being among TNB youths over a short period, which is important given mental health disparities experienced by this population, particularly the high levels of self-harm and suicide.
Purpose
There are no large-scale studies examining mental health among transgender and nonbinary youth who receive gender-affirming hormone therapy (GAHT). The purpose of this study is to examine associations among access to GAHT with depression, thoughts of suicide, and attempted suicide among a large sample of transgender and nonbinary youth.
Methods
Data were collected as part of a 2020 survey of 34,759 lesbian, gay, bisexual, transgender, queer, and questioning youth aged 13–24, including 11,914 transgender or nonbinary youth. Adjusted logistic regression assessed whether receipt of GAHT was associated with lower levels of depression, thoughts of suicide, and attempted suicide among those who wanted to receive GAHT.
Results
Half of transgender and nonbinary youth said they were not using GAHT but would like to, 36% were not interested in receiving GAHT, and 14% were receiving GAHT. Parent support for their child's gender identity had a strong relationship with receipt of GAHT, with nearly 80% of those who received GAHT reporting they had at least one parent who supported their gender identity. Use of GAHT was associated with lower odds of recent depression (adjusted odds ratio [aOR] = .73, p < .001) and seriously considering suicide (aOR = .74, p < .001) compared to those who wanted GAHT but did not receive it. For youth under age 18, GAHT was associated with lower odds of recent depression (aOR = .61, p < .01) and of a past-year suicide attempt (aOR = .62, p < .05).
Conclusions
Findings support a relationship between access to GAHT and lower rates of depression and suicidality among transgender and nonbinary youth.
Objective
Transgender and non-binary individuals frequently engage with healthcare services to obtain gender-affirming care. Little data exist on the experiences of young people accessing gender care. This systematic review and meta-ethnography aimed to identify and synthesise data on youths’ experiences accessing gender-affirming healthcare.
Method
A systematic review and meta-ethnography focusing on qualitative research on the experiences of transgender and non-binary youth accessing gender care was completed between April-December 2020. The following databases were used: PsychINFO, MEDLINE, EMBASE, and CINAHL. The protocol was registered on PROSPERO, international prospective register of Systematic Reviews (CRD42020139908).
Results
Ten studies were included in the final review. The sample included participants with diverse gender identities and included the perspective of parents/caregivers. Five dimensions (third-order constructs) were identified and contextualized into the following themes: 1.) Disclosure of gender identity. 2.) The pursuit of care. 3.) The cost of care. 4.) Complex family/caregiver dynamics. 5.) Patient-provider relationships. Each dimension details a complicated set of factors that can impact healthcare navigation and are explained through a new conceptual model titled “The Rainbow Brick Road”.
Conclusion
This synthesis expands understanding into the experience of transgender and non-binary youth accessing gender-affirming healthcare. Ryvicker’s behavioural-ecological model of healthcare navigation is discussed in relation to the findings and compared to the authors’ conceptual model. This detailed analysis reveals unique insights on healthcare navigation challenges and the traits, resources, and infrastructure needed to overcome these. Importantly, this paper reveals the critical need for more research with non-binary youth and research which includes the population in the design.
Purpose of Review
This paper reviews the evolving body of research on the mental health of transgender and gender diverse (TGD) youth. Minority stress experiences in families, schools, and the community impact the health and well-being of this population due to experiences of stigma, discrimination, and rejection. Poor healthcare access and outcomes may be compounded in youth with intersectional identities.
Recent Findings
There is increasing evidence that gender-affirming interventions improve mental health outcomes for TGD youth. TGD youth report worse mental health outcomes in invalidating school and family environments and improved outcomes in affirming climates. TGD youth experience significant healthcare disparities, and intersectional clinical approaches are needed to increase access to affirmative care.
Summary
Providers can best support TGD youth by considering ways they can affirm these youth in their healthcare settings, and helping them access support in schools, family systems, and communities. Understanding the intersection of multiple minority identities can help providers address potential barriers to care to mitigate the health disparities seen in this population.
Introduction
This study explored how transgender (trans) youth and parents of trans youth made decisions around hormone therapy initiation as well as trans youth experiences of barriers to care.
Methods
Participants included 21 trans youth (ages 14–18) and 15 parents of trans youth who resided in British Columbia, Canada. Data for this grounded theory research consisted of transcripts and lifeline drawings collected through semi‐structured interviews conducted August 2016 through February 2017.
Results
The decision‐making processes of youth and of parents are illustrated in three‐phase temporal models, starting with discovery, leading to (inter)action while seeking care, and reflection after hormone therapy initiation. Youth who sought hormone therapy were clear about their decision to access this care. Throughout these processes, youth experienced numerous parent‐ and system‐related barriers to care. Youth with the lowest levels of parent support experienced more system barriers, with non‐binary/genderfluid youth experiencing greater barriers and less support for hormone therapy than youth with binary genders. A new barrier identified in this study was health care provider imposed requirements for parental involvement and/or approval, which rendered some youth unable access to hormone therapy.
Conclusions
Health care providers should be aware of the deliberation and information‐seeking in which youth engage prior to seeking care as well as the temporally misaligned decision‐making processes of youth and parents. Understanding the challenges trans youth experience due to insufficient parental support and system barriers can provide important context for health care providers striving to provide accessible, gender‐affirming care and decision‐making support for trans youth.
Background: Canadian specialty clinics offering gender-affirming care to trans and gender diverse children and youth have observed a significant increase in referrals in recent years, but there is a lack of information about the experiences of young people receiving care. Furthermore, treatment protocols governing access to gender-affirming medical interventions remain a topic of debate.
Aims: This qualitative research aims to develop a deeper understanding of experiences of trans youth seeking and receiving gender-affirming care at Canadian specialty clinics, including their goals in accessing care, feelings about care and medical interventions they have undergone, and whether they have any regrets about these interventions.
Methods: The study uses an adapted Grounded Theory methodology from social determinants of health perspective. Thirty-five trans and gender diverse young people aged 9 to 17 years were recruited to participate in semi-structured interviews through the specialty clinics where they had received or were waiting for gender-affirming medical interventions such as puberty blockers, hormone therapy, and surgery.
Results: Young people felt positively overall about the care they had received and the medical interventions they had undergone, with many recounting an improvement in their well-being since starting care. Most commonly shared frustrations concerned delays in accessing interventions due to clinic waiting lists or treatment protocols. Some youth described unwanted medication side-effects and others said they had questioned their transition trajectory at certain moments in the past, but none regretted their choice to undergo the interventions.
Discussion: The results suggest that trans youth and gender diverse children are benefiting from medical gender-affirming care they receive at specialty clinics, providing valuable insight into their decision-making processes in seeking care and specific interventions. Providers might consider adjusting aspects of treatment protocols (such as age restrictions, puberty stage, or mental health assessments) or applying them on a more flexible, case-by-case basis to reduce barriers to access.
Purpose: To assess youth and parent/caregiver satisfaction with care at a pediatric multidisciplinary gender clinic.
Methods: Transgender/gender nonconforming youth (n=33) and their parent/caregiver (n=29) completed self-report questionnaires and individual interviews (n=20) about experiences and satisfaction with care.
Results: Quantitatively, participants reported being extremely satisfied with care experiences (parents 97%; youth 94%). Qualitatively, main themes included (1) affirmation due to use of preferred name/pronouns, (2) access barriers due to scheduling and readiness assessments, and (3) positive interactions with Care Navigator.
Conclusion: Youth and parents/caregivers are highly satisfied with multidisciplinary, coordinated health care for transgender/gender nonconforming youth; however, some challenges remain.
About 3.5% Americans identify themselves as lesbian, gay, or bisexual while 0.3% identify themselves as transgender. The LGBT (lesbian, gay, bisexual, and transgender) community belongs to almost every race, ethnicity, religion, age, and socioeconomic group. The LGBT youth are at a higher risk for substance use, sexually transmitted diseases (STDs), cancers, cardiovascular diseases, obesity, bullying, isolation, rejection, anxiety, depression, and suicide as compared to the general population. LGBT youth receive poor quality of care due to stigma, lack of healthcare providers’ awareness, and insensitivity to the unique needs of this community. The main objective of this literature review is to highlight the challenges faced by the LGBT youth and to enhance the awareness among physicians about the existing disparities in order to provide a more comprehensive, evidence-based, and humane medical care to this community.
Purpose:
Few transgender youth eligible for gender-affirming treatments actually receive them. Multidisciplinary gender clinics improve access and care coordination but are rare. Although experts support use of pubertal blockers and cross-sex hormones for youth who meet criteria, these are uncommonly offered. This study's aim was to understand barriers that transgender youth and their caregivers face in accessing gender-affirming health care.
Methods:
Transgender youth (age 14-22 years) and caregivers of transgender youth were recruited from Seattle-based clinics, and readerships from a blog and support group listserv. Through individual interviews, focus groups, or an online survey, participants described their experiences accessing gender-affirming health care. We then used theoretical thematic analysis to analyze data.
Results:
Sixty-five participants (15 youth, 50 caregivers) described barriers spanning six themes: (1) few accessible pediatric providers are trained in gender-affirming health care; (2) lack of consistently applied protocols; (3) inconsistent use of chosen name/pronoun; (4) uncoordinated care and gatekeeping; (5) limited/delayed access to pubertal blockers and cross-sex hormones; and (6) insurance exclusions.
Conclusions:
This is the first study aimed at understanding perceived barriers to care among transgender youth and their caregivers. Themed barriers to care led to the following recommendations: (1) mandatory training on gender-affirming health care and cultural humility for providers/staff; (2) development of protocols for the care of young transgender patients, as well as roadmaps for families; (3) asking and recording of chosen name/pronoun; (4) increased number of multidisciplinary gender clinics; (5) providing cross-sex hormones at an age that permits peer-congruent development; and (6) designating a navigator for transgender patients in clinics.
The transgender community is a population group that has experienced an increase in visibility, with only a small, concomitant increase in understanding. This study reports on four focus groups, in which 34 transgendered individuals discussed their experiences and interactions with the health care system.The specific aims of the study were as follows: •Identify the health needs of transgender and transsexual (TG/TS) individuals;•Hear the experiences and perceptions of TG/TS individuals who are using the current health care system;•Identify any barriers to obtaining services, support and/or resources;•Assess the extent to which health care providers and systems are able to offer sensitive, high quality and user friendly services that meet TG/TS consumers' needs; and•Identify ways that health care services can be enhanced to better meet the needs of the target population.What the study found was a system that was anything but high quality in meeting the needs of TG/TS individuals. Ignorance, insensitivity and discrimination appear to be the norm. Specifically, the focus groups found the following: •Transgendered and transsexual persons frequently encounter providers who will not treat them and blatantly say so. There is a need for education and a change in anti-discrimination law needed to change this.•The lack of provider training on transgender issues creates insensitivity to simple issues of respect for trans people. One example is the unwillingness to address TG/TS people by the pronoun preferred by the patient/client.•Many providers lack the knowledge to adequately treat many of the routine health care needs of TG/TS individuals when such treatment relates to issues of hormone use, gynecological care, HIV prevention counseling, or other concerns related to gender or sexuality.•Providers frequently refer to trans issues in unrelated health care situations such as setting a broken bone, filling a cavity or treating a cold. Greater familiarity with the health care needs of the trans population would reduce such incidents.•Mental health and substance abuse treatment providers need additional training in order to work cooperatively with TG/TS clients to identify when gender issues are or are not relevant to specific mental health or substance abuse treatment episodes. Sometimes gender issues are central to mental health or substance abuse treatment, sometimes they are peripheral and sometimes they are unrelated.•Discrimination in health insurance is the rule, not the exception. There is a need for education to encourage policy changes on the part of insurers and public policy changes on the part of legislators and regulators.
Introduction: Little is known about how expansion of telemedicine services during the COVID-19 pandemic has affected access to gender-affirming care for transgender and gender-diverse (TGD) youth. The purpose of this study was to explore differences in demographic characteristics and visit completion rates at a multidisciplinary gender clinic before and after telemedicine implementation in March 2020 and among telemedicine users and nonusers. Methods: Data were from electronic health records of Seattle Children's Gender Clinic (SCGC) patients seen between April 2019 and February 2021. We assessed differences in demographic characteristics and care utilization (i.e., encounter type and status) between April 2019 and February 2020 (pre-telemedicine) and April 2020 and February 2021 (post-telemedicine). Results: Of the 1,051 unique patients seen at SCGC during this time period, majority groups were as follows: 62% identified as transmasculine/male, 68% were non-Hispanic White, and 76% resided within 50 miles of the clinic. Statistically significant differences were observed in patient pronouns and insurance type when comparing the pre- and post-telemedicine periods (p < 0.01). Half (52%) of post-telemedicine period encounters were conducted through telemedicine, and telemedicine encounters were significantly more likely to be completed (72% vs. 50%) and less likely to be canceled (21% vs. 46%) compared with in-person encounters. Conclusions: Telemedicine services facilitated continued access to gender-affirming care services for TGD youth during the COVID-19 pandemic. Although the introduction of telemedicine did not exacerbate demographic disparities in access to this care, further research and interventions are warranted to address the ongoing disparities in access to gender-affirming care for youth of color and rural youth.
Background:
Limited prospective outcome data exist regarding transgender and nonbinary youth receiving gender-affirming hormones (GAH; testosterone or estradiol).
Methods:
We characterized the longitudinal course of psychosocial functioning during the 2 years after GAH initiation in a prospective cohort of transgender and nonbinary youth in the United States. Participants were enrolled in a four-site prospective, observational study of physical and psychosocial outcomes. Participants completed the Transgender Congruence Scale, the Beck Depression Inventory-II, the Revised Children's Manifest Anxiety Scale (Second Edition), and the Positive Affect and Life Satisfaction measures from the NIH (National Institutes of Health) Toolbox Emotion Battery at baseline and at 6, 12, 18, and 24 months after GAH initiation. We used latent growth curve modeling to examine individual trajectories of appearance congruence, depression, anxiety, positive affect, and life satisfaction over a period of 2 years. We also examined how initial levels of and rates of change in appearance congruence correlated with those of each psychosocial outcome.
Results:
A total of 315 transgender and nonbinary participants 12 to 20 years of age (mean [±SD], 16±1.9) were enrolled in the study. A total of 190 participants (60.3%) were transmasculine (i.e., persons designated female at birth who identify along the masculine spectrum), 185 (58.7%) were non-Latinx or non-Latine White, and 25 (7.9%) had received previous pubertal suppression treatment. During the study period, appearance congruence, positive affect, and life satisfaction increased, and depression and anxiety symptoms decreased. Increases in appearance congruence were associated with concurrent increases in positive affect and life satisfaction and decreases in depression and anxiety symptoms. The most common adverse event was suicidal ideation (in 11 participants [3.5%]); death by suicide occurred in 2 participants.
Conclusions:
In this 2-year study involving transgender and nonbinary youth, GAH improved appearance congruence and psychosocial functioning. (Funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development.).
Purpose:
To explore differences in healthcare experiences, healthcare avoidance, and well visit attendance between binary and nonbinary transgender adolescents; also, to explore the association between distinct healthcare experiences and healthcare avoidance and well visits.
Methods:
We surveyed transgender adolescents ages 12-26 (n = 156) recruited from a multidisciplinary gender clinic from July through November 2018. Differences in distinct healthcare experiences by demographics were assessed using multivariable linear regression. Multivariable logistic regression was used to examine independent associations between demographics and lifetime healthcare avoidance and past-year well visit and also, associations between distinct healthcare experiences and lifetime healthcare avoidance and past-year well visit.
Results:
Compared to transfeminine adolescents, more non-affirming healthcare experiences were reported by nonbinary (β = 1.41, 95% confidence interval [CI]: 0.49, 2.33) and transmasculine adolescents (β = 0.78, 95% CI: 0.02, 1.53). Gender-affirming healthcare experiences did not differ by demographics. Transmasculine adolescents had over three times the odds of lifetime healthcare avoidance (adjusted odds ratio [aOR] = 3.58, 95% CI: 1.41, 9.08) than transfeminine peers. Only younger age was associated with past-year well visit (aOR = 3.83, 95% CI: 1.44, 10.17). Non-affirming healthcare experiences were positively associated with healthcare avoidance (aOR = 1.85, 95% CI: 1.47, 2.34). Gender-affirming healthcare experiences were not associated with healthcare avoidance or past-year well visit.
Discussion:
Nonbinary and transmasculine adolescents experienced more non-affirming healthcare experiences than transfeminine adolescents. Non-affirming healthcare experiences were associated with healthcare avoidance, which was disproportionately more prevalent among transmasculine adolescents. Providers must be better equipped to provide inclusive, gender-affirming care to increase receipt of care for transgender adolescents beyond specialized gender clinics.
Purpose: Since May 2021, numerous state legislatures in the United States have introduced bills to restrict the participation of transgender and gender diverse (trans) youth in gender-segregated sports in a manner consistent with their gender identity. The purpose of this study was to understand how medical providers of pediatric gender-affirming care for trans youth view these legislative efforts and how they believe these bills will affect their practice and patients. Methods: In March 2021, we recruited participants using listservs known to be frequented by providers of gender-affirming medical care to complete a survey about bills that restrict trans youths' participation in sex-segregated sports. Eligible participants were over the age of 18, currently worked as a physician, nurse practitioner, or physician's assistant, and provided gender-affirming care to trans youth under the age of 18 in the United States. Results: We analyzed the responses of 103 providers from all 50 states and the District of Columbia. Most participants identified as White (77%), cisgender women (70%), and specialized in pediatric care (52%). The most salient theme, described by nearly all participants, was that legislation banning trans youth from sports participation would lead to worsening discrimination and stigmatization. Other themes included worsening mental and physical health of trans youth, forced changes to clinical practice, politicization of trans youth, and efforts required to stop these bills. Conclusion: Providers of gender-affirming care in this study overwhelmingly opposed legislation that bans trans youth from sports participation citing the severe consequences to the well-being of trans youth. More research is needed to examine stakeholder's opinions regarding legislation that does not ban but otherwise restricts sports participation by trans youth.
We explored gender diverse youth's experiences seeking and receiving gender-affirming care in various health system locations. Results provide evidence for system-, clinic-, and provider-level improvements to promote the development of affirming environments and to improve health outcomes for gender diverse youth.
Objectives
Numerous U.S. state legislatures have proposed bills to ban gender-affirming medical interventions for minors. Parents and caregivers play a critical role in advocating for and supporting their transgender and gender-diverse youth (TGDY). We aimed to understand parent and caregiver perspectives about this potential legislation and perceived effects on their TGDY’s mental health.
Methods
We developed and launched a social-media based, anonymous online survey in February 2020 to assess parent and caregiver perspectives on proposed laws to ban gender-affirming medical interventions for minors. Participants were asked to respond to two open-ended questions about these laws; responses were coded to identify key themes.
Results
We analyzed responses from 273 participants from 43 states. Most identified as white (86.4%) female (90.0%) mothers (93.8%), and 83.6% of their TGDY had received gender-affirming medical interventions before age 18 years. The most salient theme, which appeared in the majority of responses, described parent and caregiver fears that these laws would lead to worsening mental health and suicide for their TGDY. Additional themes included a fear that their TGDY would face increased discrimination, lose access to gender-affirming medical interventions, and lose autonomy over medical decision-making due to government overreach.
Conclusions
In this convenience sample, parents and caregivers overwhelmingly expressed fear that the proposed legislation will lead to worsening mental health and increased suicidal ideation for their TGDY. They implored lawmakers to hear their stories and to leave critical decisions about gender-affirming medical interventions to families and their medical providers.
Thematic analysis methods, including the reflexive approach we have developed, are widely used in counselling and psychotherapy research, as are other approaches that seek to develop ‘patterns’ (themes, categories) across cases. Without a thorough grounding in the conceptual foundations of a wide variety of across‐case analytic approaches, and qualitative research more broadly—something rarely offered in counselling training—it can be difficult to understand how these differ, where they overlap, and which might be appropriate for a particular research project. Our aim in this paper is to support researchers in counselling and psychotherapy to select an appropriate across‐case approach for their research, and to justify their choice, by discussing conceptual and procedural differences and similarities between reflexive thematic analysis (TA) and four other across‐case approaches. Three of these are also widely used in counselling and psychotherapy research—qualitative content analysis, interpretative phenomenological analysis and grounded theory. The fourth—discourse analysis—is less widely used but importantly exemplifies the critical qualitative research tradition. We contextualise our comparative approach by highlighting the diversity within TA. TA is best thought of as a spectrum of methods—from types that prioritise coding accuracy and reliability to reflexive approaches like ours that emphasise the inescapable subjectivity of data interpretation. Although reflexive TA provides the point of comparison for our discussion of other across‐case approaches, our aim is not to promote reflexive TA as ‘best’. Rather, we encourage the knowing selection and use of analytic methods and methodologies in counselling and psychotherapy research.
Purpose:
Transgender youth face significant health disparities and multiple barriers to receiving quality health care. Gender identity disclosure to health care providers (HCPs) is an important step in creating affirming relationships for transgender youth. The objectives of this study were to (1) determine the prevalence of voluntary disclosure and intentional avoidance to HCPs outside of gender clinics, (2) identify factors associated with voluntary disclosure and intentional avoidance, and (3) elucidate strategies to increase comfort with disclosure.
Methods:
A cross-sectional survey was administered to transgender youth aged 12-26 years. Bivariate analyses were conducted using χ2 or Fisher's exact tests. Two logistic regression models for each outcome variable were used to examine factors associated with voluntary disclosure and intentional avoidance.
Results:
Two thirds (65%) of youth (N = 153) identified as transmasculine, and 57% were under 18 years. Three-quarters (78%) had voluntarily disclosed their gender identity to an HCP outside of gender clinic, whereas 46% had intentionally avoided disclosure. Odds ratios (ORs) of ever having disclosed were lower for participants ≥18 years (OR = .33; 95% confidence interval [CI]: .11-.98), those out to fewer people (OR = .12; 95% CI: .02-.81) and out for <1 year (OR = .03; 95% CI: .004-.31). Odds of intentional avoidance were lower among youth with higher perceived parental support (OR = .83; 95% CI: .70-.98).
Conclusion:
A majority of transgender youth reported having voluntarily disclosed their gender identity to an HCP outside of gender clinic, but almost half reported having intentionally avoided disclosure when they felt it was important. Parental support may play a protective role in mitigating avoidance.
Background: Transgender and non-binary children and young people and their parents in England, UK are poorly served across a range of healthcare settings. Whilst UK equalities legislation and international guidance on transgender healthcare pathways protects this group from discrimination and mandates an affirmative approach, services in England are not keeping pace.
Aims: This study aims to draw on the experiences of transgender and non-binary children, young people and their parents in a support group in England in order to investigate their experiences of healthcare provision, and to develop some ideas for improvement.
Method: Data was collected with participants in a family support group which offers a parent helpline service, social groups for children and parents, and training for schools and other organizations. 65 parents and children from 27 families from the family support group attended participatory workshops where they were given a range of briefs: “health,” “family,” “friends,” and “education.” Their participation involved being asked to define their own interview questions and collect data by interviewing each other. Their interview notes constituted the raw data. Data was coded inductively by the author with respondent checking as a second stage.
Results: Results constitute the views of a small group of people, so cannot be generalized. However, they do illustrate some of the issues which may arise. Participants’ experiences elicited five key themes: professionals’ perceived lack of clinical and therapeutic knowledge; mental distress caused by excessive waiting lists; professionals’ stereotyped gender assumptions; direct discrimination within healthcare settings; and a lack of attention to parent and child voice, especially in terms of school-based experiences and where a patient had a diagnosis of autism.
Purpose:
Healthcare access is important for achieving health equity across vulnerable social groups. However, stigma can be a barrier for accessing healthcare among black transgender and gender diverse youth (TGDY) in the U.S. Using a resilience approach, this article examines the role of gender affirmation within healthcare to determine if it can mitigate the negative relationship between stigma and healthcare use.
Methods:
Data include responses from 110 black TGDY from 14 U.S. cities. Multiple logistic regression models were fit to determine relationships between stigma in healthcare (anticipated and enacted), gender affirmation in healthcare, and delayed/nonuse of primary care. Interaction terms were included to determine if gender affirmation moderates the relationship between stigma and healthcare nonuse.
Results:
In the main effects model, gender affirmation was the only variable statistically associated with healthcare nonuse. The interaction between gender affirmation and enacted stigma was not significant, but gender affirmation moderated the relationship between anticipated stigma and healthcare nonuse. For individuals who did not have their gender affirmation needs met, as anticipated stigma increased, healthcare nonuse also increased; however, this did not occur for those who had their gender affirmation needs met.
Conclusions:
Findings suggest that gender affirmation within healthcare is important for increasing access to care among black TGDY. Interventions should consider how to increase gender affirmation among healthcare providers and within healthcare settings. Additional research using an intersectional approach to understand the experiences of black TGDY is needed to highlight the unique healthcare needs of this population.
Purpose:
Transgender adults may avoid medical settings due to concerns about discrimination or past experiences of maltreatment. Emerging evidence shows improved outcomes and psychosocial functioning when transgender adolescents receive gender-affirming care, but little is known about transgender adolescents' experiences in primary care. The objective of this study was to learn about the experiences in primary care of transgender and gender nonconforming (TGN) adolescents and their recommendations for primary care practices and clinicians.
Methods:
Participants were recruited from primary care clinics, gender care clinics, and list serves. Semistructured qualitative interviews were conducted with 20 TGN adolescents aged 13-21 years (75% white/non-Hispanic, average age 16.7 years). Participants answered questions about primary care experiences, how to improve care, suggestions regarding how to ask about gender identity, and recommendations for making offices more welcoming for TGN adolescents. Interviews were transcribed verbatim, coded, and analyzed for themes.
Results:
Overall, participants reported positive experiences in primary care. Most participants commented on distress resulting from being called the incorrect name or the incorrect pronoun. Several concrete recommendations emerged from the interviews, including asking all patients about their gender identity and pronouns at every primary care visit and not asking about gender identity when caregivers are in the room. Participants emphasized the importance of using their affirmed name and pronouns and wanted providers to be knowledgeable about transgender health.
Conclusion:
Delivery of primary care services for transgender adolescents may be optimized if offices provide a welcoming environment, use correct names and pronouns, and discuss gender confidentially with patients.
This Policy Statement was reaffirmed August 2023
As a traditionally underserved population that faces numerous health disparities, youth who identify as transgender and gender diverse (TGD) and their families are increasingly presenting to pediatric providers for education, care, and referrals. The need for more formal training, standardized treatment, and research on safety and medical outcomes often leaves providers feeling ill equipped to support and care for patients that identify as TGD and families. In this policy statement, we review relevant concepts and challenges and provide suggestions for pediatric providers that are focused on promoting the health and positive development of youth that identify as TGD while eliminating discrimination and stigma.
Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.