Lessons from Grassroots Efforts to Increase Gender-Affirming Medical Care for Transgender and Gender Diverse Youth in the Community Health Care Setting

Abstract

Increasingly, transgender and gender diverse (TGD) youth are seeking gender-affirming medical care. Most multidisciplinary gender-affirming pediatric clinics are located in academic facilities in urban areas. To improve access to care and advance the field, grassroots establishment—without targeted funding or explicitly trained gender health providers—of multidisciplinary gender health clinics in rural and community health care settings can increase care access and lay the foundation for dedicated funding, staff, and clinic space. In this perspective piece, we share our grassroots process of establishing a multidisciplinary gender health clinic in the community setting, highlighting critical turning points that facilitated our clinic's rapid growth. Our experience can provide important lessons learned for community health care systems seeking to establish programs that will serve TGD youth.

Introduction

Transgender and gender diverse (TGD) youth are presenting to health care providers in increasing numbers nationwide seeking gender-affirming medical care.^1–4 It has been shown that access to gender-affirming medical care^5–7 and the support of immediate family,^8–10 peers,^11,12 and/or other supportive adults^10,13 are critical for positive social outcomes for TGD youth. A multidisciplinary clinic model that incorporates medical, mental health, and psychosocial support is considered fundamental to the provision of comprehensive care for this unique population.^4,14–16

Although there is no definitive tracking of multidisciplinary pediatric gender health clinics in the United States, one source approximates that, at the time of this writing, there are an estimated 54 such clinics serving TGD youth.^17,18 Of these, 35.2% (n=19) are west of the Mississippi river, 79.6% (n=43) are housed in academic medical facilities, and 92.6% (n=50) are located in areas with a population of >50,000 people.¹⁷ This clustering of clinics in urban teaching hospitals amplifies pre-existing disparities related to rurality¹⁹ and insurance coverage²⁰ for youth seeking gender-affirming care.

Thus, beyond access barriers that may include lack of family support,²¹ a frequently hostile broader social environment,²² and insurance gatekeeping,²⁰ the scarcity and site-based homogeneity of clinics further complicate the logistics of accessing care. Twenty-one states currently have no multidisciplinary youth gender health clinic, and the gender-affirming care provided in at least 21 states faces debilitating or criminalizing legislation.^7,23

Now is a critical time to expand access to multidisciplinary gender-affirming care for TGD youth. Expanded access requires decentralizing care in academic urban settings through deliberate and strategic efforts to establish multidisciplinary clinics in community health care settings. Although dedicated clinic space and staffing are ideal, grassroots work can begin to provide holistic gender-affirming care before the establishment of physical space or dedicated staffing. Indeed, the provision of such care before the dedication of resources can justify the need for targeted funding, personnel, and clinic space.

Washington State is home to three multidisciplinary gender clinics, all of which operate out of the two urban hubs of the Puget Sound region, Seattle, and Tacoma. One is affiliated with the University of Washington, one is part of an integrated managed care consortium, and the third, about which we write here, is embedded in the pediatric endocrinology clinic in a community hospital system.

The aim of this perspective is to communicate lessons learned in the grassroots establishment of our multidisciplinary gender health clinic in the community setting, characterized by slow establishment, followed by rapid growth. We hope that our experience and reflections can provide valuable insight and reduce challenges for other community-based health care systems in establishing a care model for TGD youth. We provide data on patient volumes to contextualize the distinct phases of our journey as a clinic.

Beginnings: 2012–2015

MultiCare Health System is a nonprofit community health care system in Washington State serving patients on both sides of the Cascade mountain range. Youth receive primary care in our system through several pediatric and family medicine clinics, and specialty care through a network of specialty and hospital services provided by the Mary Bridge Children's Hospital network. Until 2012, our system did not provide gender-affirming care to TGD youth. That year, a transgender teenager on puberty blockers relocated to the region and sought care continuity at our pediatric endocrinology clinic. Over the subsequent years, the clinic experienced a slow increase in patients seeking gender-affirming care.

For 4 years (2012–2015), TGD patients were managed medically by a single physician endocrinologist, who, in response to patient need, sought targeted gender health learning through the WPATH Foundations course, UCSF Transgender Medicine Conference, and Gender Odyssey conferences. All social work tasks, including field calls, provision of resources to patients/families, and safety screens, were completed by the pediatric endocrinology registered nurse (RN) tasked with serving all pediatric endocrinology patients at 0.6 full-time equivalent (FTE).

Readiness assessments were performed by a clinical psychologist, who did not have capacity to provide ongoing mental health services; patients/families had to seek and initiate care among community providers. During this time, the team averaged 2.1±2.3 new patients and 14.0±14.4 gender health encounters per quarter (Fig. 1).

FIG. 1.

Clinic intakes (solid line, left vertical axis) and encounters (dotted line, right vertical axis) by quarter. Mean intakes/encounters per quarter and staffing model described in thetable.

Transitions: 2016–2019

In 2016, our system funded an additional 0.3 FTE social worker to support pediatric endocrinology patients. This person made an effort to help support the social work tasks for gender health patients but did not have dedicated gender health FTE or expertise. The clinic established a 9-month 0.1 FTE graduate student social work internship to support gender health patients; two such internships were completed nonsimultaneously over this 3-year period. The endocrinologist, psychologist, and endocrinology RN continued to serve TGD patients as part of their patient load, but as demand increased, the team struggled to meet patients' needs.

During this phase, the clinic averaged 13.5±4.7 new patients and 130.0±45.2 encounters per quarter. Patient experience suffered amid this growth due to waits of 6–18 months between referral and intake, lack of staff with training/experience specific to gender health, and limited options for readiness assessments due to insufficient relationships with community mental health providers. In 2018, endocrine clinic staff recognized that, under the current model, they were unable to provide high-quality care to youth in crisis. They had reached a critical junction: stop serving gender health patients or formalize a gender health program.

Today: 2019–2021

In 2019, with a continued increase in TGD patient volume, our pediatric gender health program was formalized. Grant funding was secured to hire a full-time clinical social worker (CSW) tasked with establishing and growing a formal pediatric gender health program. The pediatric endocrinology RN was increased to 0.7 FTE, and in 2020 a third social work internship began. The gender health CSW approached program establishment from three overarching areas: (1) program and resource development, (2) delivery and facilitation of patient care, and (3) education, outreach, consultation, and training surrounding pediatric gender health issues (Fig. 2).

FIG. 2.

Key components to development of community-based clinic serving trans and gender diverse youth.

FIG. 3.

Gooseman. Signature drawing by Jay Taylor.

The CSW first sought to establish trust, rapport, and visibility for the clinic in the TGD community. This effort included development of a website and brochures, in-person distribution of these materials throughout the region at community health and social service organizations, posting flyers in coffee shops, and in-person relationship building with community organizations serving TGD youth. They also created clinic workflows designed to ensure consistent and thorough care for patients/families. In this structure, a caregiver phone screen is completed before the first clinic visit to discuss clinical care pathways, mental health needs, and to provide referrals as needed.

Youth 13–17 years old are also offered an opportunity to meet with clinic staff before their initial medical appointment and all referrals are followed up within 14 business days. Additional process and environment changes include warm handoffs between clinic staff, the establishment of name and pronouns at the start of every visit, including provider and staff pronouns, and the conversion of restrooms from male/female to gender neutral.

The CSW has increased TGD visibility and education within our health care system through implementation of a year-long gender health Lunch & Learn education series and has increased clinic visibility within community organizations through pointed outreach efforts and relationship building. Recognizing the need for both ongoing mental health services and mental health readiness assessments before the initiation of gender-affirming medical intervention, the CSW also compiled a list of vetted gender-affirming community-based therapists, making cold calls to potential partners and interviewing therapists before adding them to a referral list that now contains >50 providers.

During this phase, the clinic saw an average of 33.3±6.8 new patients and 285±61.5 encounters per quarter, despite various pandemic-related restrictions on care provision (Fig. 1). Although the first two quarters of the coronavirus pandemic saw a decline in new patients, this number increased steadily between mid-2020 and early 2021. The team also established virtual care options, which are especially beneficial for rural patients and those who do not live in the same region as the clinic. Patients are now able to receive all of their care virtually, provided they are seen in clinic once per year.

Tomorrow: 2021 Onward

With clinic materials, workflows, and community relationships established, the groundwork has been laid to facilitate a shift from grassroots efforts to strategically growing our now formalized pediatric gender health program and assessing and improving care quality. The CSW has directed attention to obtaining funding for dedicated gender health clinic staff, developing a partnership with our organization's research institute, and collaborating with a single adolescent medicine physician who serves TGD youth on the eastern side of the state to expand and streamline care for this population.

A 0.8 FTE gender health RN joined the practice in summer 2021, dedicated entirely to gender health patients; a new pediatric endocrinology physician joined the practice in autumn 2021 with 1 day per week dedicated to gender health patients; and the clinic has partnered with a single provider for all dietician referrals. These staffing shifts more than doubled appointment capacity and referral response for gender clinic patients. At the time of this writing, our clinic has a current case load of 403 active patients with 25–40 new referrals each month, both of which are steadily growing.

Conclusion

Multidisciplinary gender-affirming medical care for TGD youth can improve short- and long-term psychosocial outcomes and reduce risk of self-harm, anxiety, depression, suicidal ideation, and/or attempted suicide. Currently, access to such care is burdened by multiple factors, one of which is a limited number of such clinics in the United States, which are overwhelmingly located in academic medical facilities in urban areas. However, the provision of gender-affirming care by a multidisciplinary team that includes medical, mental health, and social work support is feasible within community health care settings.

In 2020, the health resources and services administration funded 1383 community-based health centers in the United States²⁴ with the specific goal of providing care to underserved and rural patients. These clinics have great potential for expanding gender-affirming pediatric care, a more detailed guide for which is presented by Morenz et al.²⁵

Several key lessons can be learned from our grassroots experience of low-census ad hoc patient care provision followed by rapid growth in patient load and program formalization. The most salient of these lessons are as follows:

• 1.Patients will come. Our clinic saw a >600% increase in encounter volume over a 4.25-year period (2016—Q1 2020), with a formal program standing up in only the last five quarters of that timeframe. Our clinic had hundreds of patients before resource development and workflow implementation. Initiating discussion surrounding environment, training, and care provision early will benefit patients and staff.
• 2.Training is available. Resources exist to educate providers who have not received explicit training in gender-affirming medical care, for which CME/CNE credits can be earned.
• 3.Partnerships are key. Alliances with community mental health providers, student interns, and organizations serving TGD youth led to improved patient and provider experience and reduction in delays surrounding readiness assessments and provision of mental health support.
• 4.Small changes have big yield. Establishing patient and provider name and pronouns, warm handoffs, and gender-neutral bathrooms are low-cost high-impact changes that increase patient comfort and communicate a welcoming environment.

Beginning this important work in the community setting, even in the absence of an established gender health clinic, has the potential to greatly expand access to care for TGD youth in the United States and may in fact be a necessary first step in an organization's efforts to create a dedicated program. Indeed, the urgency for this study has never been greater, with increasing number of patients presenting for care nationwide amid a climate of escalating physical and political violence enacted against TGD youth in the United States.

Although we recognize that resources, institutional culture and support, and surrounding community-based organizations vary, we provide evidence of the feasibility of grassroots development of a pediatric gender health clinic and critical lessons learned in hopes that others will benefit from our experience.

Our pediatric endocrinology clinic served TGD youth for several years on an ad hoc basis but saw a drastic increase in new patient intakes and encounters for established patients after developing clinic structure, establishing community trust, and engaging in education and outreach efforts within and outside of our health care system. Increasing access to multidisciplinary care for TGD youth is critical to the health and well-being of this population, to the development of an infrastructure for collaboration and research to advance the field, and to invalidating myths and assumptions surrounding TGD youth and gender-affirming care.

Dedication

We dedicate this manuscript to Jay Taylor (He/Him/His), 08/19/2008–01/17/2022, in whose memory we reaffirm our commitment to creating a safer world for trans youth, and in honor of Jay's mom, Leslie Taylor, who showed him the kind of love and support that all trans youth deserve.

Abbreviations Used

CSW

clinical social worker

FTE

full-time equivalent

RN

registered nurse

TGD

transgender and gender diverse

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This perspective was developed with funding from MultiCare Health System.

Cite this article as: Denaro A, Pflugeisen CM, Colglazier T, DeWine D, Thompson B (2023) Lessons from grassroots efforts to increase gender-affirming medical care for transgender and gender diverse youth in the community health care setting, Transgender Health 8:3, 207–212, DOI: 10.1089/trgh.2021.0092.