Improving health access for gender diverse children,youth,and emerging adults?

This special edition of Clinical Child Psychology and Psychiatry presents manuscripts on health care of gender diverse children, adolescent, and emerging adults. Several of these articles are written by members of The Tavistock and Portman NHS Foundation Trust (2018)—Gender Identity Development Service (GIDS), a “highly specialised clinic for young people presenting with difficulties with their gender identity”. The service was established in 1989 in Great Britain (The Tavistock and Portman NHS Foundation Trust, 2018). It is one of several such specialized clinics in Western Europe, Australia, and North America, with others being established in other countries (Center De Sante Meraki, 2018; Children’s Hospital Los Angeles, 2018; The Royal Children’s Hospital Melbourne, 2018; Vu University Medical Center Amsterdam, 2018).

An individual’s sex is usually defined as male or female and is based on the person’s biological status. The sex assigned at birth is usually determined based on the genital appearance (Winter et al., 2016). However, as stated by the Endocrine Society, the actual appearance of the genitalia may not accurately reflect the person’s genetic make-up, hence they discourage the use of such terms as “biological sex” or “biological male or female” (Vance, Ehrensaft, & Rosenthal, 2014). Gender is defined by Winter et al. (2016) as

the personal experience of oneself as a boy or a man, girl or woman, as neither, or as a gender beyond man or woman. Some individuals “particularly in cultures which accept the idea of genders beyond man and woman” identify as members of a “third gender” or use indigenous gender labels.

This definition moves away from the rigid, traditional binary notion of gender to that of a more inclusive spectrum allowing for individuals to self-define using a broad terminology. This allows for gender nonconforming or gender diverse people. These are “persons with behaviors, appearance, or identities that are incongruent with those culturally assigned to their birth sex. Gender nonconforming individuals may refer to themselves as transgender, gender queer, gender fluid, gender creative, gender independent, or non-cisgender” (Vance et al., 2014). It is important to understand that, while attempting to be inclusive, this definition reflects the culture of origin of the authors and the year of publications of the manuscript, thus it may be restrictive in its inclusivity. Nonetheless, it provides us with a departure point and therefore, as used in the introductory paragraph, the term “gender diverse” will be used from this point on in this article.

The discrepancy between a person’s assigned gender at birth and the self-definition of their gender will lead to a sense of discomfort within oneself defined in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM 5) as Gender Dysphoria (American Psychiatric Association, 2013). This dysphoria may be related to the entire body or parts, the genitalia, or secondary sexual characteristics such as the breasts or body hair. The intensity of the discomfort resulting from this dysphoria may be variable (Coleman et al., 2012). The combination of dysphoria, ongoing stress, as outlined in the Minority Stress Theory (Dohrenwend, 2000; Meyer, 2003) and the stigma related to living in a society which traditionally defines gender as binary and rejects the notion of gender as fluid results in psychosocial, mental, and physical health problems (Shumer, Nokoff, & Spack, 2016; Tellier, 2017; Vance et al., 2014; White Hughto, Reisner, & Pachankis, 2015). The range of situations and consequences that affect gender diverse children, youth, and emerging adults is broad and disproportionately high compared to their sexual minority and cis-gender peers (James et al., 2016; Shumer et al., 2016). These include verbal, physical, and sexual abuse by family members and others, harassment in educational settings, and rejection (Coulter, Bersamin, Russell, & Mair, 2018). This may lead to poor academic achievements, homelessness, survival sex, and human trafficking (Morton, Samuels, Dworsky, & Patel, 2018). The consequences being high rates of depression, anxiety disorder, suicidal ideation and attempts, self-harm behavior, disordered eating, substance use and abuse, sexually transmitted infections, and HIV (Connolly, Zervos, Barone, Johnson, & Joseph, 2016; Coulter et al., 2018; Peterson, Matthews, Copps-Smith, & Conard, 2017; Reisner et al., 2015; Shumer et al., 2016; Spack et al., 2012; Winter et al., 2016). Moreover, there is evidence that stressful childhood experiences or adverse childhood experiences may lead to long-term health problems such as ischemic heart disease, cancer, stroke, emphysema, and diabetes (Bockting et al., 2016; Schneeberger, Dietl, Muenzenmaier, Huber, & Lang, 2014).

Young people may choose to transition or not. Transitioning includes a social, medical, and surgical component and individuals may choose to access care for one or more of these (Coleman et al., 2012; Winter et al., 2016). It has been shown that those receiving this type of service have better long-term health outcomes (Cohen-Kettenis, Steensma, & De Vries, 2011; Connolly et al., 2016; De Vries et al., 2014; Olson, Durwood, Demeules, & Mclaughlin, 2016). Existing Standards of Care and Guidelines (Coleman et al., 2012; Dahl, Feldman, Goldbeg, Jaberi, & Vancouver Coastal Health, 2015; Hembree et al., 2017; Telfer, Tollit, Pace, & Pang, 2018) stipulate that to achieve this a multidisciplinary team approach including mental health professionals, pediatricians, endocrinologist, and others is required. For children, this is usually available in specialized gender identity clinic such as The Tavistock and Portman NHS Foundation Trust—GIDS. Older adolescents and emerging adult may access care from individual practitioners such as family physicians, nurse practitioners, endocrinologist, and surgeons (Coleman et al., 2012; Dahl et al., 2015). Some of these practitioners require an assessment, of the person seeking care, by a trained mental health professional to diagnose gender dysphoria prior initiating medical or surgical therapy. Others may use a harm reduction and informed consent model, assessing the young person for gender dysphoria themselves, then initiating care and offering follow-up (Dahl et al., 2015). Alternatively, some young people may choose to start a medical transition by obtaining blockers or hormones from friends or off the web (Coleman et al., 2012; White Hughto et al., 2015). These individuals need support to minimize the harm that may come from using substances of unknown provenance. Furthermore, given the previously outlined vast array of health issues affecting gender diverse individuals, it is important that these youths have access to a broad range of services not only to transition but also for preventive health needs, as well as ongoing care for the various acute and chronic mental and physical problems that they experience (Giblon & Bauer, 2017; White Hughto et al., 2015).

However, access to care is difficult for various reasons. For those who want to transition specialized centers are few and located in major urban centers. Trained solo practitioners, whether mental health professionals able to diagnose gender dysphoria or family physicians, nurse practitioners, or endocrinologist willing to prescribe the appropriate medication, may be more accessible, than 10 years ago, but are not sufficient in number to meet the need. It has been shown that the majority of health care practitioners are not trained to care for this population (Lerner & Robles, 2017). Moreover, in countries where universal health care is not available, cost may be prohibitive (Robards, Kang, Usherwood, & Sanci, 2018). When gender diverse individuals seek care for other problems, they are frequently insulted, treated inappropriately, or refused care (Giblon & Bauer, 2017; Gridley et al., 2016; Lerner & Robles, 2017). These negative experiences often result in avoidance of care, thus leading to worsening of existing medical conditions, or lack of access to preventive services, such as pre-exposure prophylaxis (PrEP), to prevent HIV transmission (Lerner & Robles, 2017; Rider, Mcmorris, Gower, Coleman, & Eisenberg, 2018; White Hughto et al., 2015). Furthermore, in some countries, being seen seeking care from a center offering services to gender diverse individuals may put these young people lives at risks from others, including the authorities (Beattie et al., 2012; Madrigal-Borloz, 2018). Therefore, one must ask how can services be made accessible to a larger number of individuals, to those living in small communities, rural areas, or environments where discrimination is rampant (White Hughto et al., 2015; Whitehead, Shaver, & Stephenson, 2016).

To improve access, a variety of options have been proposed. These include training of students in the health professions, for example, medical students, nurses, social workers, or psychologist by adding appropriate courses to their curriculum, thus increasing awareness and eventually leading to more appropriate care. Continuing professional development can be offered during conferences or by distance learning using a variety of electronic methods such as longitudinal courses using video presentations combined with monitored discussion groups, or Massive Open Online Courses (MOOC) (Aoun & Johnson, 2002; Darcy & Lock, 2017; Lerner & Robles, 2017; Whitehead et al., 2016). The implementation of multidisciplinary virtual communities of practice to facilitate case discussions offering support to isolated practitioners is another option (Mcloughlin, Patel, O’callaghan, & Reeves, 2018). Assessment and care can also be done electronically and has been shown to be effective with managing mental health issues, such as substance use (Benavides-Vaello, Strode, & Sheeran, 2013; Coleman et al., 2012). This approach can also be used for those afraid of being seen seeking care (Anand et al., 2017). Support to individuals can also be offered using monitored peer or near peer discussion groups on the web (Robards et al., 2018). For those who have questions about their care, a reputable site with a professional, answering inquiries, has been evaluated well, by users (Anand et al., 2017). While these are novel and potentially useful methods to providing greater access, hurdles to widespread use do exist. Equipment for distance learning is costly; but, direct care can be offered using smart phones which are becoming more prevalent and proving to be a preferred method of communication for this age group (Chan, Godwin, Gonzalez, Yellowlees, & Hilty, 2017). A more difficult problem is the reimbursement of professionals doing distant education or offering care (Benavides-Vaello et al., 2013). However, some countries, with universal health care, are increasingly considering these methods as viable options of providing services and including them in their budgets. These various options are promising, for now, access to sensitive, appropriately trained health care professional unfortunately remains a problem for many gender diverse individuals.

In December 2012, the United Nations General Assembly passed a resolution on universal health coverage (UHC) setting “the stage for UHC to become a unifying central health goal in the post-2015 Millennium Development Goal Framework” (Vega, 2013). In a Bulletin of the World Health Organization, Evans, Hsu, and Boerma state that one step to attaining health coverage is improving universal health access. They outline that health access has three dimensions: physical accessibility, financial affordability, and acceptability. Acceptability is said to be low “when social and cultural factors such as language or the age, sex, ethnicity or religion of the health provider discourage them from seeking services” (Evans, Hsu, & Boerma, 2013). At this point in time, based on the evidence available in the literature, one can conclude that universal health access, as defined, is a goal that is yet to be met for most of gender diverse youth (Madrigal-Borloz, 2018). Hence, we need to work together, with those that we serve, to develop appropriate, sensitive, and accessible health care for all.