The umbrella term transgender is used to describe individuals whose sexual identity or gender expression is different from that assigned at birth (Kattari and Hasche, 2016). The health care needs of this population can be complex and individuals face many barriers to accessing health and support services. Within the wider LGBTQI community there are higher levels of depression and poorer mental health than the general population (Hudson-Sharp and Metcalf, 2016); however, the international literature suggests that, within this community, transgender individuals are at higher risk of depression and suicide relative to non-transgender individuals (Su et al, 2016; Hunt et al, 2020; Parr and Howe, 2019). The Equality and Human Rights Commission (2015) highlights the fact that transgender individuals experience discrimination and disadvantages in accessing health care.
Aim of the study
This literature review aimed to consider and consolidate the current literature exploring the health care experiences of transgender individuals.
Method
Online databases provide credible, scientific and evidence-based research and are the preferred method of finding relevant literature (Taylor, 2014). CINAHL, Scopus, MEDLINE, AMED, PubMed, Web of Science, ASSIA and PsycINFO were selected to conduct the literature search. Aveyard (2014) states that the identification of key words and the subsequent search is the most robust method of identifying the relevant literature. Boolean operators ‘AND’ and ‘OR’ capitalise on the relationship between key words to either refine the search results or facilitate a wider search by allowing two key words to be combined (Jahan et al, 2016). Truncation tools were used across the searches to gather all variances of root words and to capture plural meanings (Bramer et al, 2018).
Inclusion and exclusion criteria set the parameters of a review, specify the scope of literature, providing a systematic review tool (Jahan et al, 2016). The initial literature search highlighted a limited evidence-base of literature related to transgender care. To obtain a wider understanding of transgender care, the search included articles on the experiences of pre- and postoperative trans individuals, along with self-identifying individuals. Due to a limited amount of UK-based research, an international search was undertaken of studies carried out in member countries of the Organisation for Economic Co-operation and Development (OECD). To eliminate any corruption though translation, only papers written in the English language were included. Furthermore, literature written prior to 2010 was excluded because the Equalities Act 2010 has protected trans individuals from discrimination from this date; however, legislation in other OECD countries may have come into effect at a different time or is outstanding and, consequently, trans services may not be recognised or trans rights will not be not protected. Quantitative studies were also excluded because they do not explore the lived experience, however mixed-method studies were included if the qualitative aspect could be drawn upon separately.
A total of 149 relevant studies were identified from eight databases, of which 132 did not meet the inclusion and exclusion criteria (Table 1). The remaining 17 studies were retrieved for full-text evaluation and six duplicates removed, leaving 11 studies. These were reviewed and six were deemed appropriate for inclusion in the final review.
| Inclusion | Rationale | Exclusion | Rationale |
|---|---|---|---|
| Adults ages 18 years and older | Young people (16-17 years) can make their own healthcare decisions, but their decision can be overruled. Transition to UK adult services stands at 18 years | Patients aged 17 years and under | Transition to UK adult services starts at 18 years |
| Papers published 2010 onwards | Since 2010, the Equalities Act 2010 has protected trans people against discrimination on grounds of gender reassignment/identification | Papers published prior to 2010 | Published before the introduction of the Equalities Act 2010 |
| Qualitative and mixed method | Aim to gain an insight into the lived experience. Multiple studies if available | ||
| International studies from Organisation for Economic Co-operation and Development countries | Countries represent economic stability and growth | Secondary sources, literature reviews | The remit of the study focused on primary sources only |
| Post-operative and self-identification | A broader representation on the trans community | ||
| Those who have not legally changed gender, for example changed birth certificate | Fewer than 5000 individuals have legally changed gender in the UK, since the Gender Recognition Act 2004 (https://tinyurl.com/y6hu3a7f). The Act was updated on November 30, with the legal requirements to change gender remaining the same, but a modernisation of the application |
Five of the six studies had a qualitative design (Roller et al 2015; Ross et al, 2016; Von-Vogelsang et al, 2016; Westerbotn et al, 2017; Persson Tholin and Broström, 2018), and the sixth used a mixed-method approach (Riggs et al, 2014).
Initially, the studies were appraised for their strengths and limitations, methodology and the identification of themes to answer the question posed. Aveyard (2014) advocated the use of a robust framework to ensure rigour in the critiquing process; Taylor (2014) supported the use of a framework because it provides a concise method to present the findings and aids the identification of themes. The framework devised by Holland and Rees (2010) is recognised and widely used for qualitative and quantitative research, but is not appropriate for mixed-methods research. Consequently, this framework was used to appraise each aspect of the mixed-method study and the QATSDD tool, which is a 16-point quality assessment tool (Sirriyeh et al, 2012), was used for critiquing the mixed-method studies as advocated by Fenton et al (2015).
Results
Three themes emerged from the review:
Health professionals' knowledge and attitudes
Health professionals have a responsibility to maintain their knowledge and skills to ensure that they deliver effective and non-discriminatory care (Nursing and Midwifery Council, 2018). Under UK law, the Equalities Act 2010 protects trans individuals from discrimination; across the OECD, legislation is uneven: in some countries legislation is already enacted or there are plans to put it in place, but in others there are no trans protection laws. Despite the legal protection of individual rights, five of the six studies reviewed highlighted a distinct lack of knowledge and three illustrated negative attitudes, discrimination and ignorance experienced by transgender individuals. The relationship between transgender individuals and health professionals often depended on the patient educating the professionals on trans-related issues and the effect that different stages of transition have on health. A ‘burden of responsibility’ was expressed by some participants (Persson Tholin and Broström, 2018: 428) in educating health professionals about trans health. Positive encounters were reported when staff were professional, upheld integrity and respect, inspired trust and confidence, and were responsive to the patient's needs, whether or not they had specific knowledge of trans health.
Within Von-Vogelsang et al's (2016) study, all participants experienced positive and negative encounters with health professionals. Participants reported that some health professionals acknowledged their limited knowledge of transgender issues, demonstrating a desire to know more, which led some participants to take on the role of educator. Although some perceived this as positive, other participants described the process of being the primary source of education as tiresome. Furthermore, many participants found that most health professionals made assumptions about their sexuality, with the result that they were consistently mis-gendered.
Ross et al (2016) enrolled transgender individuals who had experienced positive healthcare interactions, however many still reported negative aspects of care. Positive experiences were identified and characterised as encounters grounded in respect and understanding, along with health professionals' knowledge about trans care. Unlike the other studies, in addition to transgender individuals, Ross et al (2016) interviewed friends, family, significant others, and health professionals. One health professional in the study revealed that ‘there was no trans awareness in my formal education’ (Ross et al, 2016: 242); it was noted that individual health professionals make attempts to compensate for the lack of knowledge by engaging in additional training within continued professional development and seeking courses (Ross et al, 2006).
Participants in Westerbotn et al's (2017) study reported that gender identity was the focus of their interactions with health professionals, regardless of its relevance to the presenting issue. All participants reported having negative experiences, citing ignorance, discrimination and mis-gendering. Examples of this included calling out a person's birth name, which may not align with their gender identity, in a waiting area, or questioning why official documents, such as health records, National Security/social security numbers, birth certificates, passports or driving licences did not align with their presented gender, which caused distress or led to embarrassment. Participants in Westerbotn et al's (2017) study thought that health professionals’ own feelings affected how they treated patients, with outward displays of hostility and perpetuating stereotypes.
All the transgender participants in the study (Westerbotn et al, 2017) felt that they had more positive experiences with health professionals when they were accessing non-trans-specific services compared with their experiences of trans-specific treatment. All transgender participants divulged that, during their transition, health professionals within gender services demonstrated a more stereotypical and conservative view on gender compared with staff in non-trans-specific healthcare settings.
Persson Tholin and Broström (2018) reported that, in their study, transgender individuals expected that health professionals would have limited knowledge about trans health and how it might affect non-trans health-related issues. The findings of this study (Persson Tholin and Broström, 2018) supported the findings of Westerbotn et al (2017), that cis-normative stereotypes were perpetuated onto transgender individuals within health care, and the majority of participants found this frustrating and discomfitting. Participants reported a positive experience when their preferred name and pronoun were used and felt positive when health professionals asked them about their preference, acting in a non-judgemental and patient-focused manner (Persson Tholin and Broström, 2018). However, several participants reported that many health professionals continually ignored their preference, eliciting feelings of anger, frustration and emptiness. Participants reported that they feared to reveal their gender identity, worrying that it would result in poorer care and being met with ignorance.
In the mixed-method study undertaken by Riggs et al (2014), participants were first asked to used a Likert scale to rate their mental and physical health, and their experiences with psychiatrists, GPs and surgeons; this was followed up with open-ended questions to enable them to elaborate on their experiences. Researchers in Australia used a snowball sampling technique, recruiting a total of 188 transgender individuals—110 male to female (MtF) and 78 female to male (FtM—to the study with the aim of identifying the healthcare experiences of gender-diverse individuals. About 70% (n=131) of participants had accessed a psychiatrist, a large minority of whom (n=43) reported a positive experience with the psychiatrist, who was described as professional, helpful and knowledgeable. However, some (n=67) described their experience with a psychiatrist as negative, perceiving it to be solely a gatekeeping exercise, that was intrusive and during which they were subjected to rude questioning.
In contrast, of the 80% (n=150) who had accessed GP services, the majority (n=85) had had a positive experience, emphasising that they had been treated with respect. Negative experiences with GPs (n=62) included intrusive or irrelevant questioning, discriminatory behaviours, and the need to educate the health professional. Just under half (42.5%, n=65) of participants had accessed gender-affirming surgery and described their experiences as part of the study. The majority (n=40) of this number reported that they had had a positive experience, characterised by good communication and collaboration. Those who reported negative experiences (n=25) said that these had centred around misinformation about surgical scarring and the sharing of information without consent, leading to embarrassment.
Navigating the system
The review identified that in order to access health care individuals felt that they needed to not only navigate the system to access trans-sensitive and specific care, but also care that was non-discriminatory. Individuals who participated in Roller et al's (2015) US-based study expressed difficulty in accessing trans-sensitive and trans-specific care. Due to the health care landscape in the USA, many transgender individuals found that insurance policies would not cover trans-specific health care. Participants described the process of needing to seek out health professionals who could assist with their complex health needs, without having to follow a generic healthcare path, and trying to find support groups and insurance companies with knowledge of transgender health. Once participants had found appropriate health professionals and insurance policies, they were forced to look for loopholes in the system (Roller el al, 2015). This involved working with the health professionals to ‘bend’ the truth, for example, to receive a diagnosis of hormone imbalance to access hormone treatment. Participants described the need to adapt and develop their relationships with the health professional to ensure they could get the treatment they needed. The study also noted that some participants would delay seeking health care in order to exacerbate an illnesses to facilitate treatment longer term, jeopardising their health, for example one participant postponed accessing health care for 6 years following an abnormal PAP scan in order to receive a hysterectomy.
Individuals in Von-Vogelsang et al's (2016) study undertaken in Sweden said they had to drive the process forward themselves, for example to get diagnosed with gender dysphoria in order to be referred to one of Sweden's six specialist gender teams for evaluation and the commencement of hormone therapy, mastectomy (FtM) and hair removal (MtF). They also highlighted issues of fertility (freezing eggs and sperm) and issues related to registering legal sex reassignment. Both MtF and FtM participants said that they felt that they had to dress and act in a certain way to conform to how they perceived health professionals wanted them to act and look.
Transgender individuals in Ross et al's (2016) qualitative study said that felt they were navigating the system alone. However, this sometimes led to positive actions because it often resulted in more timely, reliable and competent treatment—this was the result of networking with other transgender individuals, which was a valuable in gaining insight into treatments, health professionals and signposting to transgender services. According to Greatheart (2013), in Canada coverage of transgender services varies from province to province, with three provinces having no formal trans-care infrastructure. Ross et al's (2016) study, which was also undertaken in Canada, found that the lack of a formal trans care pathway had led to transgender individuals developing personal strategies to access treatment by ‘cherry picking services and creating their own pathway’; Roller et al's (2015) US-based study reported similar findings, that participants worked around to ‘bend’ the rules to access relevant health care. This meant accepting the deficit in transgender individuals health care and carefully roadmapping their healthcare journey to achieve their goals.
The literature also suggests that transgender individuals face social and institutional barriers when accessing health care. Poor infrastructure and provision of services have a profound impact on how transgender individuals access services and meet their unique health needs.
Vulnerability and avoidance of health care
Another finding of the review was the sense of vulnerability and healthcare avoidance reported by individuals. This finding highlights transgender individuals' perceptions of vulnerability, including their self-worth, feelings of invisibility and exposure, along with delaying access to health care due to fear, and weighing up the risks to get the desired healthcare outcome. Roller et al (2015) stated that a number of the FtM participants continued to work on their relationships with trans-competent health professionals to ensure that their healthcare needs (surgeries and referrals) were met. Participants stated that, despite the ongoing relationship building with health professionals, they continued to find it difficult to have their unique healthcare needs met in the long term.
One participant, who had had an abnormal cervical smear result, waited 6 years before seeking treatment. ‘I knew that I was at the point where I probably had cancer … and I did, and I was just at that point where [it] was CIN3 (cervical intraepithelial neoplasia) … my insurance covered my hysterectomy’ (Roller et al, 2015: 421). This example demonstrated the willingness to delay seeking treatment for a potentially life-threatening condition in order to get surgery to further their transgender health.
In the study by Von-Vogelsang et al (2016), participants expressed experiencing a negative self-view, feelings of isolation and not fitting in binary gender categories. Participants said that of necessity they had depended on the health system, but they felt they had little power in terms of accessing gender-affirming surgery services; they often felt that health professionals who had the power to make clinical decisions were ignorant of their needs. Many experienced an overarching feeling of not being taken seriously by health professionals and felt that their own knowledge was discredited. They also felt that being judged and questioned during the gender-affirming surgery process led to an increased sense of vulnerability and insecurity. However, participants reported that compassionate and holistic care from health professionals alleviated some of the anxiety.
Westerbotn et al (2017) reported that participants often felt anxious prior to meeting health professionals, fearing that they would be treated poorly due to their gender identity, with some individuals admitting they had delayed seeking health care for this reason. Participants stated that they found it difficult to explain their situation and were fearful of how the health professional would respond. One participant had declined seeking treatment because they doubted that the health professional would have the medical skills to be able to treat their specific health needs.
In Persson Tholin and Broström's (2018) study participants reported feeling invisible and not being perceived in a way consistent with how they saw themselves. They also feared that health professionals would not take them seriously and would dismiss their gender identity. Many participants stated that they did not have confidence in the health system's ability to meet their needs, for example, FtM participants stated that they had not been contacted for preventive screening for cervical or breast cancers and there were similar fears among trans individuals more generally. All participants stated that they accessed health care when necessary, however the majority also reported that they had postponed seeking routine and preventive health care for as long as possible, while acknowledging the consequences of any delay.
Discussion
With referrals to gender dysphoria clinics increasing in the UK by 250% over the past 5 years, it is vital that health professionals recognise the unique health needs of transgender individuals (Torjesen, 2018). The literature suggests that their needs are not being met in a timely manner; moreover, when they access health services the lack of awareness on the part of health professionals, and fear of discrimination and negative encounters can delay individuals seeking health care (Shires and Jaffee, 2015; Lee and Kanji, 2017; Salkas et al, 2018). There is limited research exploring the experiences of transgender individuals with health services in the UK, which makes it difficult to gain a rounded picture of the trans experience in the country.
The evidence presented in this review suggests that, where health professionals were equipped with knowledge of the trans community and their health needs, there were positive interactions and outcomes, although it could argued that these encounters are in the minority. Furthermore, the evidence revealed ongoing themes of discrimination, ignorance and mis-gendering, which had a profound effect on participants and impacted their future interactions with health services. The wider body of research is consistent with these findings, which indicates that transgender individuals experience discrimination and ignorance from many health professionals (Smith et al, 2018) who can obstruct care, which leads to transgender individuals having to develop their own care pathways (Arman and Rehnsfeldt, 2007; Scheim at al, 2017).
Despite this lack of knowledge, positive encounters were reported when the health professional actively engaged and demonstrated a need to learn from the patient, when appropriate. Ross et al (2016) advocated that trans-specific education should be included in the healthcare curricula in order to address this. Stroumsa et al (2019) have supported further education, but argued that transphobia needs to be addressed within health services to ensure equity of provision.
The healthcare journeys of transgender individuals are unique and careful planning is needed, by the individual, to access care for both trans- and non-trans-related health needs. The international nature of the evidence has highlighted differences between healthcare systems, which can be state funded, partially funded and insurance-led. This led to some transgender individuals having to navigate their local system in a variety ways to meet their needs. Moreover, the need to construct their own journey was evident internationally, irrespective of funding model. This is consistent with the wider evidence base which suggests that, because transgender individuals are seen as being on the margins of society, their heath needs are not fully understood or met (Bockting et al, 2016; Gupta et al, 2016).
Transgender individuals experience a sense of vulnerability when accessing health care and frequently feel that, although they have orchestrated a healthcare journey, their treatment is ultimately in the hands of health professionals, which can evoke feelings of poor self-worth and anxiety. This contributor to mental health is evident in the wider literature (Samuel and Zaritsky, 2008; Seelman et al, 2017), and contributes not only to increased anxiety among this population, but also poorer mental health compared with the wider population. Moreover, the evidence within the review presented in this article suggests that an avoidance of health care is commonplace, not only due to anxiety and the fear of discrimination, but also due to the need to exercise control over health outcomes.
Stonewall (2018) advocates that additional education should be delivered and disseminated throughout health system and education curricula, with the and the Royal College of Nursing (RCN) (2016) publishing guidance on trans individuals’ care needs. The guidance (RCN, 2016) stresses the need for sensitive trans-related care and provides information on therapies, as well as resources for nurses with an interest in learning more. However, an understanding of how transgender individuals access non-trans services needs to be further researched to ensure that effective care can be delivered.
Conclusion
The evidence suggests that there are many barriers to transgender individuals accessing health care services, for example having to contend with discrimination, resulting in a reluctance to seek health care, and poor access to both trans-specific and non-trans-specific care. Furthermore, the review identified that the majority of health professionals lack adequate knowledge in relation to physiological health and service provision for this patient group.
International studies provide insight into the experiences of health care of transgender individuals, however, there has been limited relevant research with this patient group in the UK, so further research is needed. Research should be undertaken to ensure the delivery of holistic, patient-centred care to all transgender individuals, as advised by the NMC (2018).