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Journal of Adolescent Health 59 (2016) 254e261 www.jahonline.org Original article Youth and Caregiver Perspectives on Barriers to Gender-Affirming Health Care for Transgender Youth Samantha J. Gridley a,b, Julia M. Crouch, M.P.H. b, Yolanda Evans, M.D., M.P.H. b,c, Whitney Eng, M.D. c, Emily Antoon, M.D., M.A. c, Melissa Lyapustina, R.N. d, Allison Schimmel-Bristow b,e, Jake Woodward b,f, Kelly Dundon, M.D. c, RaNette Schaff, R.N., C.P.N. g, Carolyn McCarty, Ph.D. b,c, Kym Ahrens, M.D., M.P.H. b,c, and David J. Breland, M.D., M.P.H. b,* a Vanderbilt University School of Medicine, Nashville, Tennessee b Seattle Children’s Research Institute, Seattle, Washington c Department of Pediatrics, University of Washington, Seattle, Washington d Department of Psychosocial and Community Health, University of Washington School of Nursing, Seattle, Washington e Loyola University Maryland, Baltimore, Maryland f Carleton College, Northfield, Minnesota g Division of Adolescent Medicine, Seattle Children’s Hospital, Seattle, Washington Article history: Received December 20, 2015; Accepted March 16, 2016 Keywords: Transgender; Gender dysphoria; Gender incongruence; Adolescents; Qualitative study; Puberty suppression; Cross-sex hormones; Preferred name; Barriers; Multidisciplinary gender clinic See Related Editorial p. 241 ABSTRACT IMPLICATIONS AND CONTRIBUTION Purpose: Few transgender youth eligible for gender-affirming treatments actually receive them. Multidisciplinary gender clinics improve access and care coordination but are rare. Although ex- This study gives a voice to perts support use of pubertal blockers and cross-sex hormones for youth who meet criteria, these both contemporary trans- ’ are uncommonly offered. This study s aim was to understand barriers that transgender youth and gender youth and their fi their caregivers face in accessing gender-af rming health care. caregivers on the topic e Methods: Transgender youth (age 14 22 years) and caregivers of transgender youth were of barriers to gender- recruited from Seattle-based clinics, and readerships from a blog and support group listserv. affirming health care. Through individual interviews, focus groups, or an online survey, participants described their Their perspectives and experiences accessing gender-affirming health care. We then used theoretical thematic analysis to recommendations empha- analyze data. size the need for multidis- Results: Sixty-five participants (15 youth, 50 caregivers) described barriers spanning six themes: ciplinary gender clinics, (1) few accessible pediatric providers are trained in gender-affirming health care; (2) lack of which currently exist in consistently applied protocols; (3) inconsistent use of chosen name/pronoun; (4) uncoordinated only a handful of U.S. cities. 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 recommen- dations: (1) mandatory training on gender-affirming health care and cultural humility for pro- viders/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 Conflicts of Interest: None of the authors have a conflict of interest, real or perceived, to report. * Address correspondence to: David J. Breland, M.D., M.P.H., M/S CSB-200, P.O. Box 5371, Seattle WA 98145-5005. E-mail address: [email protected] (D.J. Breland). 1054-139X/Ó 2016 Society for Adolescent Health and Medicine. All rights reserved. http://dx.doi.org/10.1016/j.jadohealth.2016.03.017 S.J. Gridley et al. / Journal of Adolescent Health 59 (2016) 254e261 255 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. Ó 2016 Society for Adolescent Health and Medicine. All rights reserved. “Transgender” describes a person whose gender identity does Prior qualitative studies assessing barriers to gender-affirming not match their natal sex or does not align with traditional notions health care have focused on the perspectives of physicians of masculinity or femininity [1].Transgenderyouthhavehigher [16,18e20] or adult transgender patients [21e23]. Little is known rates of anxiety, depression, substance abuse, and suicide than about the experiences of transgender youth and caregivers; their peers [2,3].Delayinggender-affirming treatment, including the single study examining male-to-female transgender youths’ pubertal blockers and subsequent cross-sex hormones, is corre- perspectives about health care utilization is based on data over lated with further increased psychiatric comorbidity within this 15 years [24]. The present study aimed to identify barriers to population [4]. In contrast, timely administration of these treat- accessing gender-affirming health care and solicit recommenda- ments correlates with improved body image and lower risk of tions from transgender youth and their caregivers for overcoming long-term mental health problems [5e7]. However, in spite of these barriers. guidelines by the Endocrine Society, American Academy of Pedi- atrics, American Academy of Child and Adolescent Psychiatry, and Methods World Professional Association for Transgender Health which support gender-affirming medical management for transgender We used a mixed methods approach to increase flexibility for youth [8e11], few transgender youth who are eligible for these participants and allow for triangulation of key themes from interventions actually receive them [12]. Multidisciplinary gender multiple data sources. We invited transgender youth age 14e22 clinics pose a promising solution to this access problem by offering and caregivers who are parenting a transgender youth age 22 coordinated, team-based gender-affirming health care [1,13,14]. years to participate in qualitative interviews, focus groups, or However, few medical centers house such clinics or even offer an online survey (Figure 1). Although caregivers from other gender-affirming treatments to eligible youth [12]. states were allowed to participate, recruitment efforts were Many provider- and health care systemerelated factors impact concentrated in Washington State. Participants were specifically access to these interventions. Pediatricians rarely receive training recruited from Seattle-area clinics serving transgender youth, a in gender-affirming health care, which may lead to insufficient support group listserv, and a hospital-sponsored blog. understanding of the unique health issues transgender youth Potential participants were informed that they would be asked face and inadequate knowledge of how to prescribe treatments about their experience seeking gender-affirming health care, [12,15e17]. Other barriers include limited insurance coverage [12] including barriers encountered. Youth at any stage of gender and provider concerns about limited data on long-term outcomes transition were eligible to participate as long as they self-identified and the validity of gender dysphoria as a medical diagnosis rather as having a gender identity incongruent to their sex assigned at than a social construct [17]. birth. Youth participants endorsed a range of gender identities Figure 1. Study recruitment and participants. 256 S.J. Gridley et al. / Journal of Adolescent Health 59 (2016) 254e261 Table 1 Demographics of study participants Caregiver participants, n ¼ 50 Youth participants, n ¼ 15 Age, average (range) 47 (29e71 years) 18 (14e22 years) Gender identity, n (%)a Female: 40 (83) Transfeminine: 3 (20) Male: 7 (15) Transmasculine: 7 (47) Transmasculine: 1 (2) Otherb: 5 (33) Did not answer: 2 Sex assigned at birth, n (%) [Data not collected] Female: 10 (67) Male: 5 (33) Race/ethnicity, n (%) White: 39 (78) White: 10 (67) Black/African-American: 2 (4) Black/African-American: 0 (0) Native American/American Indian or Native American/American Indian or Alaska Native: 1 (7) Alaska Native: 2 (4) Hispanic/Latino(a): 1 (7), Asian/Pacific Islander: 0 (0), Hispanic/Latino(a): 1 (2) more than one race/ethnicity: 3 (20) Asian/Pacific Islander: 2 (4) More than one ethnicity: 4 (8) Education, n (%) Advanced degree: 14 (29) Some college/vocational school: 4 (27) Bachelor’s degree: 19 (39) High school diploma/GED: 5 (33) Some college/vocational school: 13 (27) Currently in high school: 6 (40) High school diploma/GED: 3 (6) Did not answer: 1 Marital status, n (%) Married: 35 (71) [Not applicable] Divorced: 8 (16) Separated: 1 (2) Single: 4 (8) Domestic partnership: 1 (2) Did not answer: 1 State of residency, n (%) WA: 33 (67) WA: 15 (100) Other state (not WA)c: 16 (33) Other state Did not answer: 1 Age at which realized gender identity was [Not applicable] Age <7: 2 (18) different from sex assigned at birth, n (%) Age 8e13: 6 (55) Age 14e17: 3 (27) Age 18: 1 (9) Did not answer: 3 Pubertal blockers, n (%) Received: 2 (20) Want or might want: 0 (0) Did not want (was eligible): 0 (0) Too old for blockers (was not eligible): 8 (80) Did not answer: 4 Cross-sex hormones, n (%) Received: 9 (64) Want or might want: 4 (28) Do not want: 1 (7) Did not answer: 1 Gender-affirming surgery, n (%) Received: 0 (0) Want or might want: 7 (100) Do not want: 0 (0) Did not answer: 8 a Percentages for some variables do not add up to 100 due to rounding. b “Other”
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