Alys Donnelly, BA, MPhil
University of Cambridge, Centre for Gender Studies, Cambridge, UK.
Richard Green, M.D., J.D., FRCPsych
Professor of Psychiatry Emeritus, University of California, Los Angeles, USA.
health care experiences of transgender/transsexual
A cross-national comparison
Keywords: Gender Identity Disorders, Puberty Suppression, Adolescent, Netherlands, Great Britain, Public Policy
In the UK at the time of data collection, youths with severe gender dysphoria who might seek medical advice to alleviate this distress and met diagnostic criteria of Gender Identity Disorder were not eligible for somatic medical treatmentuntil 16-18 years of age. However, Dutch clinicians have shown that effective medical intervention can begin earlier in adolescence, at around 12-13 years.
The current study sought to explore and identify themes representing transgender/transsexual youths’ experience of their respective healthcare systems during adolescence. The study also sought to identify any potential differences in how these themes applied to the participants, as the UK and Netherlands previously took different approaches to the treatments available to these individuals. Since data for the current study were gathered, a programme of somatic treatment has been introduced in the UK for transgender/transsexual youths in early adolescence.
This study used an online questionnaire to gather information on the healthcare experiences of the youths during adolescence. The ninety-five questionnaire responses were subsequently analysed and grouped into themes. Six themes characterised the adolescent healthcare experiences in the UK and Netherlands: Peer Support, General Practitioner Knowledge, Delay, Relationships with Medical Professionals, Self-Directed Treatment, and Access to Different Healthcare Options.
The transgender youths surveyed in the UK and Netherlands engaged with and experienced their healthcare systems in different ways during adolescence. The previous difference in approach between these two countries, in terms of age at which treatment can begin, is highlighted as a potential element contributing to these different experiences.
Over the last decade the medical options available to transgender/transsexual youth have changed dramatically. As clinicians have enhanced their understanding of the “persistent discomfort” or “gender dysphoria” (APA, 2000) that individuals can feel based on differences between their perceived gender and the sex-specific features of the body of their natal-sex, they have developed innovative ways of treating gender dysphoria. Medical professionals frequently play an integral part in transgender individuals’ course of development as the psychiatric DSM-IV-TR (APA, 2000) classifies transgender individuals as having “Gender Identity Disorder” (GID) and the ICD 10 states that transgenderism encompasses the “wish to have surgery and hormonal treatment to make one's body as congruent as possible with one's preferred sex” (World Health Organisation, 2010).
Across parts of Europe and the USA, GID is addressed early in adolescence with hormonal therapies that halt the physical changes accompanying puberty. “Gonadotropin releasing hormone analogs” (GnRHa) are used to delay the physical changes of puberty, providing the individual with the breathing space to reflect on their gender identity development without developing the distressing secondary sexual characteristics of their natal-sex (e.g. facial hair, deep voice, breast growth). Puberty suppression can provide a life-long advantage to transsexual adolescents as it both relieves the immediate distress of experiencing the puberty of their natal-sex and enhances the success of subsequent interventions aimed at shaping the body towards their perceived gender (Cohen-Kettenis et al, 2008).
Clinicians in Amsterdam treating adolescents with gender dysphoria have pioneered the approach of using GnRHa to put puberty on hold (Cohen-Kettenis et al, 1997; Smith et al, 2001; Smith et al, 2005; De Vries et al, 2011; Cohen-Kettenis et al, 2011). Yet despite their success in reducing the distress of their clients and increasing their social functioning by intervening in early adolescence, some clinicians highlight areas of concern with this type of treatment.
In the UK, the Tavistock& Portman Clinic treating transgender youths previously did not administer GnRHa until the individual was 16-18, when puberty is mostly completed. (Since the data for this study were gathered a pilot programme of puberty suspension for younger transgender adolescents has been introduced at the Tavistock& Portman clinic (GIRES, 2012)). These clinicians previously raised concerns with the use of GnRHa at this early stage, including concerns about the stability of adolescents’ gender identity, the potential risks of treatment to skeletal development, and the ethics of administering treatment to minors (for a detailed discussion of concerns, see De Vries, Cohen-Kettenis and Delemarre Van der Waal (2006) and Viner et al (2005).)
Some clinicians suggest that as adolescence is a period of developmental change, the identity of youths with gender dysphoria may still be fluctuating, making it hard to make a conclusive diagnosis of Gender Identity Disorder (Viner et al, 2005), and therefore clinicians should refrain from administering treatment until a firm diagnosis can be made. However, Cohen-Kettenis et al (2011) argues that “GID in adolescence appears to be highly persistent” (p. 844), as demonstrated by the fact that none of the adolescents treated with GnRHa at the Dutch Gender Identity Clinic have subsequently changed their minds or declined further treatment. This research suggests that if appropriate diagnostic criteria are in place, transgender youths diagnosed as having GID can be successfully identified, allowing appropriate intervention to begin earlier than the British protocol previously facilitated.
Further concerns with the use of GnRHa center on the effects of GnRHa on bone development. As healthy bone growth has been linked to the typical hormonal changes of puberty (Cohen-Kettenis, et al 2008), putting puberty on hold may damage these individuals’ future skeletal development. Vanderschueren et al, (2004) found that adolescents with a naturally delayed puberty had a lower bone mineral density than adolescents who went through puberty at a typical age, which suggests this may be an issue for those whose puberty is delayed by GnRHa treatment.
However, research by Cohen-Kettenis et al (2011) involving a 22-year follow up study with an individual treated with GnRHa (followed by cross-sex hormone therapy) found that the bone mineral density of this individual was in the normal range for both sexes in adulthood. Although this is a single case report, it suggests that risks to skeletal development may be minimal in these circumstances.
Yet, even if there is a small risk to skeletal development associated with GnRHa, this may be considered an acceptable risk by many with gender dysphoria in adolescence given the potential benefits of puberty suppression. Giordano (2008a, p.581) argued that because “obtaining medical help is for many a matter of survival” some transgender individuals may seek medication through illicit channels (e.g. buying hormones online and self administering these outside of a medical context) if they are unable to receive treatment in a legitimate context. It is unclear to what extent these individuals understand the risks involved in pursuing these kinds of treatments outside the legitimate healthcare system.
Although there is no conclusive evidence as to the long-term effect of GnRHa on bone development, Giordano (2008b) argued that it is not unethical to administer GnRHa as a treatment for gender dysphoria, and that if administering treatments with unknown long-term consequences were unethical, no medical research would be possible. Instead, according to Giordano (2007), informed consent should form the basis of access to such treatments. Informed consent involves patients being able to weigh the pros and cons of treatment in terms of both psychological and physical effects, and deciding whether this would be preferable to non-treatment. If the treatment was likely to cause significant harm to the individual then the legitimacy of the individual’s informed consent may be called into question (Giordano, 2008b). However, as treatment with GnRHa has so far shown no significant negative effects in follow up studies (Cohen-Kettenis, 1998), there appears to be no reason to think the informed consent given by these individuals would be invalid.
Furthermore, Giordano (2008b) stated that medical professionals should also consider the ethical basis of their inaction as well as their actions. This is important as evidence emerging from studies of transgender youths has shown that failing to intervene early can significantly contribute to the emotional harm these individuals experience during adolescence and can compound the social obstacles they experience if they make a gender role transition later in adulthood (Green, 2008). As secondary sexual characteristics are irreversible, the success of clinicians’ efforts to shape the adult body towards the gender identity experienced by the individual can vary in their success. This can make it difficult for some transgender individuals to be perceived by others as a member of their identified gender in various aspects of their lives.
This study sought to explore themes surrounding transgender/transsexual youths’ opinions and experiences of the available care in their respective countries during adolescence. Our hypothesis was that both British and Dutch participants would have a favourable attitude towards puberty suppression treatments and that their experiences of their respective healthcare systems would vary partly due to previous differences in British and Dutch clinicians’ perspectives on using GnRHa in early adolescence.
Ethical approval was received from the University of Cambridge Ethics Board and is based on the first author’s Master’s thesis.
Ninety-five participants accessed the web-based Transgender Youth Healthcare Questionnaire (TYHQ). Seventy-six participants were British, and nineteen were Dutch.
Eighty-six UK university LGBT societies and fifty Dutch Universities and Hogeschools (similar to applied skills colleges) sent the web-link to the TYHQ to students who had joined their LGBT societies/support groups. This was an efficient way of contacting individuals over 18 years old yet close enough to their adolescent years to recall their experiences accurately. Recruiting a sample based solely on university students would have biased the educational attainment and socio-economic status of the sample. Therefore the TYHQ was also sent to independent support groups in the UK (including Mermaids, Gender Intelligence Trust, GIRES, and Queer Youth Network) and Netherlands (including Transvisie, Ganymedes, ILGA – Europe, The Centre for Culture and Leisure (COC), T&T Utrecht, and the Transgender Netwerk Netherlands).
As there are no recognized or established parameters available about the transgender population that could have guided the current study (Whittle et al, 2008), techniques used to calculate how many participants would be necessary to provide a representative sample or to facilitate random sampling could not be used (Sue and Ritter, 2007). Thus, non-probability sampling was the only option.
There were fewer UK MtF participants (individuals assigned as male at birth but who identify as female) than FtM participants (individuals assigned as female at birth but who identify as male), while 7 participants defined their gender as “Other” (see Table 1). However, subsequent analyses did not compare MtF, FtM, and Other individuals against each other but looked at the group holistically. This could be an area for future research.
Table 1: Age and Gender Expression of Participants (N = 95)
The Transgender Youth Healthcare Questionnaire (TYHQ) was piloted in consultation with a UK-based university LGBT society with the final version consisting of 22 open and closed questions, taking approximately 15 minutes to complete.
The TYHQ was designed as an online questionnaire because it allowed the researchers to contact a population otherwise nearly untraceable. Health researchers have used online surveys to reach individuals who are stigmatized for their conditions offline (Braithwaite et al, 1999) and may be wary of meeting researchers face-to-face (Wright, 2005). This is relevant to transgender youths as high incidences of transphobic bullying highlight the public stigma these individuals can experience due to their gender identity (Whittle et al, 2007). Previous online studies with gender variant participants (Miner et al 2011) have also shown the value of this method.
To ensure the content of the questionnaire was consistent between the English and Dutch sample, the questionnaire was translated into Dutch by a native Dutch speaker with extensive experience of translating documents from English into Dutch. This translation was then double-checked by another native Dutch speaker before it was sent to participants. The TYHQ itself and participants’ responses to it were both translated by the same translator to ensure consistency across translations.
The researcher designed the TYHQ based on Dillman,Tortora and Bowker’s (1998) principles for “respondent friendly” surveys and feedback from support groups to ensure questions were appropriate. For example, instructions were given alongside each question rather than at the beginning of the survey to ensure clarity. No questions were compulsory, as participants may have felt uncomfortable being forced to reveal information about themselves in relation to certain questions. Although this would have eliminated issues of non-response, this would have been achieved in an “overbearing” fashion (Best and Harrison, 2009) and may have contributed to a higher non-completion rate.
All questions were designed by the principal investigator, except three, which were taken from Whittle’s(2007) pan-European transgender healthcare survey (examples of questions in the TYHQ are shown in Table 2). Participants were also asked to indicate the kind of treatment they had already received to facilitate potential comparisons between the types of treatment received between participants in the UK and Netherlands as shown in Table 3.
Table 2: Example questions from the TYHQ
Table 3: Types of Treatment Received by Participants
Participants completed the TYHQ following a link sent in an email from transgender support group mailing lists. Participants were asked not to provide personally identifying information (e.g. names or specific ages), with only participants’ IP addresses differentiating responses. Participants were also asked to check a box confirming they were 18 or older before participating.
Informed consent was obtained with participants reading an informed consent form and ticking a box indicating they had understood the content and purpose of the study.
A mixture of qualitative and quantitative analyses were used to evaluate the data gathered from the TYHQ.
The researchers compared the answers of British and Dutch participants to closed questions in the TYHQ by comparing the percentages of participants’ responses. This was because the sample was not large enough to facilitate statistical tests of significance. However, thematic analysis was used to identify and analyse responses to the open questions in the TYHQ.
Thematic analysis is a method used to identify and analyse themes within a dataset (Braun and Clarke, 2006), but can also be used to interpret aspects of the research (Boyatzis, 1998). There is currently no paradigmatic agreement as to how to conduct thematic analysis, as Braun and Clarke (2006) point out different instances of its use in the work of Attride-Stirling (2001) and Tuckett (2005).
When using thematic analysis researchers must decide whether to use an inductive or deductive approach when coding the data and organising participant responses into themes. Inductive analyses involve coding the dataset without attempting to fit it into the framework of a pre-existing code or theoretical preconceptions about what the content and meaning of the data should be. A benefit of inductive analysis is that the themes remain strongly linked to the data itself (Patton, 1990) as with grounded theory (Glaser and Strauss, 1967).
Deductive analysis, on the other hand, provides a less rich description of the whole dataset but provides more detailed analyses of particular aspects of the data (Braun and Clarke, 2006). This is because deductive analyses are frequently driven by pre-existing theoretical assumptions and coding structures about the particular area of study leading the researcher to focus on one or two particular aspects of the dataset.
The inductive approach was taken as little prior research has been carried out in relation to the way transgender/transsexual young people experience the healthcare system. As this was an exploratory study the inductive stance was more appropriate than a deductive approach, as it meant the researchers could take a more holistic approach to the data, allowing varied and perhaps unexpected insights to be extracted from participants’ responses.
Responses from the 95 participants in terms of the previous medical treatment they received are shown in table 2.
However, their other responses to the questionnaire were categorized into six themes that best described their answers: Peer Support, General Practitioner Knowledge, Relationships with Medical Professionals, Delay, Self-Directed Treatment, and Access to Different Healthcare Options.
Participants’ responses from both countries showed that peer support was important in providing the social support transgender adolescents needed to “come out” as being transgender. All participants valued their peers for providing social acceptance and for acting as potential sources of information about transgender healthcare issues. (Peer support in this instance was defined as participants’ friends, classmates, and colleagues).
British participants were more likely than their Dutch counterparts to obtain information about transgender healthcare from their peers, especially from older individuals who had previously been in similar situations. For example 50% (n = 32) of UK participants, compared to 21% (n = 4) of Dutch participants, first approached a friend to discuss their transgender identity.
A similar pattern
emerged when participants indicated how they found out about transgender
healthcare issues. UK participants used their peer networks to find out about
transgender healthcare options twice as often as Dutch participants (63% (n
= 41) vs. 32% (n = 6), while almost all participants used other sources
of information, such as the Internet. The quotation below illustrates the way
British participants in particular valued their peers as sources of
information, while the quotation from the Dutch participant shows the
importance of peers as providing a safe environment in which individuals could
express their gender identity:
“I have been fairly assertive and acquired transgender friends, some of whom were post-op, in the early stages of my transition and thus was given a lot of help that I would not have been able to gain from any medical official, so really the state of things is not very good, as unless one has access to other informed individuals, it is very difficult to know where to even begin and that can be a very harrowing position to be in.” (UK)
“(I live as my preferred gender only) in myownbedroom, withmyfriends, duringpartiesand at youthgatherings.” (Netherlands)
General Practitioner Knowledge
For many transgender youths, meeting a General Practitioner was their first point of contact with the healthcare system. However, the outcomes of these initial meetings varied widely.
British transgender adolescents frequently encountered General Practitioners who were unaware of transgender issues. Indeed, 53% (n = 31) of UK participants vs. 23% (n = 3) of Dutch participants described their General Practitioner as “wanting to help, but lacking information”. Similarly80% (n = 40) of British participants felt they would have received better healthcare if medical professionals were better informed about transgender healthcare. One British participant went so far as to say:
“Mostly I find myself educating doctors more than the other way round.” (UK)
In contrast, Dutch doctors were perceived to have greater baseline knowledge of transgender healthcare issues, as 69% (n = 9) of Dutch participants rated their General Practitioner as “informative and helpful”. The quotation below illustrates the way in which well-informed General Practitioners can put transgender patients at greater ease when seeking professional help.
“(My General Practitioner was) well informed about potential medical and psychological support. He asked good questions, was understanding, and consensus orientated.”
Relationships with Medical Professionals
Positive patient-General Practitioner relationships appeared to be less common in the UK than the Netherlands. For example, 12% (7) of British participants felt they had been refused treatment because a doctor did not approveof their transgender identity while no Dutch participants reported feeling this way.
“The first doctor I approached thought I was ‘going backwards in evolution’ because ‘women are smarter’. He said he'd refuse to write me refills for T (testosterone) because it was ‘against his ethics’.”
Thirty one percent (n = 13) of UK participants compared with 8% (n = 1) of Dutch participants felt that being transgender had negatively affected how they were treated by medical professionals. For example some doctors conflated the individual’s transgender identity with homosexuality.
“The first time I saw a General Practioner she told me there was nothing she could do and kept on thinking I was a lesbian who wanted to be turned straight.” (UK)
“I was simply a confused gay effeminate male, despite being attracted to women and "butch", and that was the line given to me over the 2 years I depended upon that General Practitioner” (UK)
In particular, these individuals encountered challenges with the use of gendered pronouns, titles, and names.
“He (the doctor) didn't even bother to ask me what name I would prefer to be called, and when I told him he still continued to use my birth name. And he kept referring to me as female instead of male, which made me feel very uncomfortable.” (UK)
While these experiences illustrate some of the difficulties some youths had with some medical practitioners, most UK participants were not treated in this manner. Indeed, 62% (n = 25) felt that being transgender had not negatively affected the way they were treated by medical professionals. Similarly 67% (n = 8) of Dutch participants also felt that being transgender had not negatively affected the way they were treated by medical professionals.
“I have always been treated with professionalism by healthcare professionals and have never encountered outright transphobia.” (UK)
“Medicalpersonnel have always been very open tothis (mytrangenderidentity). I have never been negatively approached by these people.” (Netherlands)
Although the majority of participants from the UK and the Netherlands felt that they had been treated respectfully by medical professionals, Dutch participants rated the quality of the healthcare they had received higher than British participants. While 44% (n = 22) of UK participants described the medical care they received as “quite good”, a higher proportion of Dutch participants, 62% (n = 8), described their medical care as “quite good”.
Many participants reported experiencing delays in access to treatment. Delay was defined as waiting to be referred for appointments at Gender Identity Clinics, waiting to receive treatment once a clinical decision had been made and waiting for funding decisions for treatment. A third (n = 20) of UK participants thought they had waited longer than expected for treatment, while 43% (n =6) of Dutch participants felt they had been made to wait longer than expected. The frustration these delays cause is highlighted below:
“Being transgender is ranked as "low priority" by the NHS, but 90% of us attempt to take our own lives. Sometimes I wonder if they don't make the wait for rejection so long in an attempt to thin the herd a little; if they aren't hoping that we'll solve the problem for them.” (UK)
“Apart from the waitinglists the care is outstanding.” (Netherlands)
Many of the individuals responding to the TYHQ expressed the feeling that they needed to be the driving force behind their own treatment. This self-directed treatment ranged from directly asking General Practitioners for particular procedures (i.e. blood tests), to seeking illicit treatment via the black market/Internet.
Self-directed treatment was reported as more prevalent in the UK than the Netherlands, with 51% (24) of British participants compared to 33% (n =4) of Dutch participants considering accessing hormones outside of a medical context. Similarly, 8% (n =5) of UK participants compared to 0% of Dutch participants “paid for their own treatment from the beginning” rather than even attempting to use public healthcare.
The quotations below illustrate these different perspectives between British and Dutch participants on self-directed treatment:
“To get the help you need in this country (UK) you have to be well educated, well informed, do your research and not take ‘no’ for an answer. If you are not an intelligent, seemingly hard-working, productive member of society you will get nothing. You need to know how to work the system and it will work for you. If you just try and go along with the pace they set it will mess you up.” (UK)
“I have tried (purchasing hormones on the Internet) but I pulled out just in time because you never know whether the hormones you can get on the black market are good or whether you are taking rubbish, and the VU (clinic in Amsterdam) is also not happy when you take hormones via the black market.” (Netherlands)
Access to Different Healthcare Options
Many participants indicated feeling that they would have found earlier medical intervention valuable. Indeed, 90% (n = 37) of Dutch participants and 70% (n = 7) of UK participants who did not receive GnRHa would have wanted to use GnRHa if the option had been available to them in early adolescence:
“Of course I would have (wanted to use GnRHa)! It would have reduced many years of stress and near suicidal actions if they were available and I had known about them.” (UK)
However, many British participants did not know about the possibility of using GnRHa when they experienced puberty. This lack of knowledge combined with British clinicians’ previous decision not to use GnRHa at the beginning of puberty meant that only 8% (n = 4) of UK participants in this study had been prescribed GnRHa towards the end of their puberty after having reached at least the age of 16. The few individuals in the UK sample who had received GnRHa appeared to find it less effective than their Dutch counterparts, which could be related to delays in receiving treatment.
“It helps (GnRHa). A little. But nowhere near enough. It’s like a band-aid over a severed arm.” (UK)
Even though the options for treatment in the UK were previously more limited than in other countries very few participants considered going abroad to receive medical treatment. Only 3% (n = 1) of British participants had considered medical tourism, while 57% (20) had “not considered this at all”. The most frequent reason for not contemplating services abroad, mentioned by 63% (n = 20) of UK respondents, was a lack of awareness of this as a possibility. In the Netherlands, none had considered obtaining medical services abroad. Yet the reason for this response was quite different. Most did not want to receive treatment abroad due to the world leading clinicians being based in their own country. As one participant described the situation, “nowhere are they as far advanced in this (treatment) as here in the Netherlands.”
A key concern for Dutch participants was having their family’s support if/when they took these hormones. While family support was also a feature of UK responses, it was most frequently cited as a reason by Dutch participants, as the quotation below illustrates:
“Because of my family, social, and personal circumstances, it (pubertysuppression) was notlikely a subject I would have brought up at thatage. A little less abstract: I lived in a village which was not friendly to difference, I was unhappy and insecure, my family life was not about emotions, nor about having time for one another.” (Netherlands)
A number of participants however, did not realise they were transgender until after puberty was mostly complete. This precluded them from being able to use GnRHa in early adolescence and illustrates that this kind of treatment is not appropriate for all transgender young people. Yet, many of these individuals believed that those who had realised their transgender identity earlier than themselves should have access to GnRHa if it was appropriate for them:
“I wasn't ready to face my gender issues back then, and was trying to firmly convince myself that I was a boy. If I could turn back time ... but I can't.” (UK)
“I didn't come out until I was 15 or so. So it (GnRHa) would have made no difference to me. I believe they should be available to those who need them at an early age, however.” (UK)
“They were available, but I didn't know I was gender dysphoric then. I only registered with the Amsterdam clinic when I was 16 and a year later I was taking puberty suppressing hormones.” (Netherlands)
“Yes, absolutely (I’d have wantedtouseGnRHa). It gives you the time to think it over well and to experience who you are. I am really annoyed that my environment did not recognise me as such (i.e. transgender) and that I only realise it now.” (Netherlands)
The current study suggests that although transgender/transsexual youths in the UK and Netherlands shared a favourable attitude towards the use of GnRHa, they also had different experiences in their respective healthcare systems and engaged with these systems in different ways.
One of the key differences between British and Dutch participants’ responses to the TYHQ was in their perceptions of General Practitioners knowledge of transgender health issues. Participants’ responses seem to suggest that perceived greater knowledge shown by Dutch General Practitioners in relation to transgender individuals’ healthcare facilitated these individuals’ diagnosis and referral, while reducing reliance on peers for information on these issues.
The knowledge and understanding shown by medical professionals in relation to transgender healthcare, especially in the UK, was highlighted as a point of concern in participants’ responses. Possibly in relation to a perceived lack of knowledge in some British General Practitioners, UK participants reported having poorer relationships with medical professionals. This is in line with Whittle et al (2008) who found that only 24% of those surveyed in their pan-European study who had transitioned in the last 5 years thought their doctor was “informative and helpful” or “wanted to help but lacked information”.
These different relationships with medical professionals, in combination with the Dutch policy of earlier intervention than previously available in the UK, may be a contributing factor to a larger number of British than Dutch participants indicating they were directing their own treatment (for exampleinjecting hormones obtained through illicit channels). (However,it must also be noted that delays in access to treatment were experienced as difficult to manage for participants in both countries.)
Self-medication in this population has been linked to potentially negative consequences, due to transgender youths injecting unregulated drugs away from a safe medical context (Giordano, 2008a). If self-medication is a potential result of delays in access to treatment and perceived lower levels of knowledge in British General Practitioners, this requires further research and potential action.
However, it is unclear whether organizational and systemic issues in each country’s respective healthcare system or differences in cultural attitude towards transgender healthcare (or both) play a role in this perceived difference in knowledge of transgender health issues, indicating a potentiality for further research on the factors contributing to patient satisfaction with transgender healthcare in these two countries.
While doctor-patient relationships can be an important avenue through which transgender individuals manage their gender identity, the current study suggests that peers can also play an important role. Half of British participants in the study first approached a friend to discuss their transgender identity. The importance of peer-support for transgender youth is also emphasized by support group personnel, as M. Griffiths of UK based support group Mermaids suggests that “when (transgender young people) talk to each other and socialize, they find ways of helping themselves and each other” (personal communication, 18/11/2009).
Although building relationships between transgender/transsexual youths, their peers and medical professionals is important, continuing to consider alternatives in the treatments used with these individuals is also valuable. As there is no agreed upon best practice in relation to the care of transgender youths (Zucker, 2008) using insights gathered from transgender individuals themselves, their doctors, and their peers may help guide future discussion and intervention and lead to new best practices.
Limitations of the Current Study:
The insights provided by individuals in the current study suggest that the option of treatment with GnRHa may be beneficial for some youths. However, it is difficult to know from the TYHQ whether the participants themselves would have been suitable for treatment with GnRHa, as this would be dependent on many factors, including what age they went to a Gender Identity Clinic and whether they met diagnostic criteria for its use. For example, if transgenderyouths attend a Gender Identity Clinic after the age of 17/18 and their puberty is finished, they may be started on an adult course of treatment straight away instead of using GnRHa. From the TYHQ it is unclear at what age participants had attended a clinic, if at all.
Despite this issue, for those who are eligible to receive GnRHa treatment and are able to be obtain it there can be important benefits. These primarily stem from the breathing space that GnRHa provides individuals, allowing them to explore their gender identity in greater depth without the distress of their body developing the sex-specific features of their natal-sex. This idea is in line with previous research that has demonstrated the potential benefits of using GnRHa in the diagnosis and treatment of Dutch transgender youths (e.g. Smith et al, 2001 and Cohen-Kettenis et al, 2011).
It is also important to note that there may be social and cultural differences between the UK and Netherlands in their attitudes towards gender in general that may have affected participants’ overall responses in this study. The World Economic Forum, for example, placed the Netherlands above the UK in its Global Gender Gap Ratings for 2011 (World Economic Forum, 2011). In this context “Gender Gap” refers to “gender based disparities” between men and women on “economic, political, education- and health-based criteria” (World Economic Forum, 2011, p.3). This difference suggests that people in the Netherlands may hold slightly different cultural attitudes towards gender than individuals in the UK, which may have in turn affected how these youths interacted with peers and medical professionals. Although it is beyond the current study’s scope to interpret how these factors may have affected the current study, this should be kept in mind in the discussion of our findings.
The small sample size in this exploratory study (n = 95) is a substantial limitation. The small sample size (particularly of the Dutch sample n = 19) meant that the results of the study cannot be generalized to the wider population and that statistical tests of significance were not appropriate. This means that it is not possible to show significant differences between responses from participants in the UK and the Netherlands. Instead differences between British and Dutch participants’ responses are suggested by comparing percentages and quotations between the two groups. These less robust methods of drawing differences between participants’ responses suggest potential areas for future research.
There is also a potential limitation to the study in terms of a self-selection bias in the sample. The participants had all identified themselves as transgender and gained access to support groups. It is unclear to what extent other similar individuals who perhaps do not identify as transgender or have not accessed support groups show the same concerns as the participants.
There is also a potential bias in the sample in terms of those individuals who decided to take part in the study relative to all the other individuals who were contacted by the support groups but did not take part. Individuals who chose to participate may have had particular views they wanted to express that may not be representative of the wider population.
The lack of a control group in this study also presents a limitation. As the responses from transgender youths were not compared against responses from healthy individuals or those with a different type of medical issue, it is difficult to prove an association between transgenderism and different relationships with medical professionals.
Despite the limitations of the methods used, they were appropriate given the exploratory nature of the study. As this study is the first to compare the healthcare experiences of transgender/transsexual youth in the UK and Netherlands, using a mixture of open and closed questions was useful in creating a strategy to uncover a range of experiences with the transgender-specific health care options in these countries. Subsequent research could build on the current study and overcome some of its limitations through creating a cross-national longitudinal follow-up study on transgender/transsexual youth going through the treatment process in their respective countries into their adult lives compared to a control group of cisgendered individuals of similar background and nationality.
Even though there are significant limitations in terms of the sample size and selection biases of the sample used, the study highlights points for further discussion. These were articulated by one British participant who simply wrote: “Train doctors better, help people younger. You’ll have less broken trans people.”
Since this study was carried out, the UK has introduced a pilot programme of pubertal suspension for transgender youths (GIRES (2012). This provides an opportunity for further research to uncover how GnRHa treatment affects British transgender youths’ physical, social, and emotional well-being, which might influence how these individuals interact with the British healthcare system in the future.
Attride-Stirling, J. (2001). Thematic networks: an analytic tool for qualitative research. Qualitative Research, 1, pp. 385-405.
American Psychological Association (2000).Diagnostic and Statistical Manual of Mental Disorders, (4th Ed., Text Revision). Washington D.C.:American Psychological Association.
Best, S. J. and Harrison, C. H. (2009).Internet Survey Methods.In The Sage Handbook of Applied Social Research Methods, 2nd Edition.(Eds. Bickman, L. and Rog, D.J.) Sage, London.
Boyatzis, R. E. (1998). Transforming qualitative information: thematic analysis and code development. Sage. London.
Braithwaite, D. O., Waldron, V. R., & Finn, J. (1999). Communication of social support in computer-mediated groups for people with disabilities.Health Communication, 11 (2), 123-151.
Braun, V. and Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77-101.
Cohen-Kettenis, P. T. and van Goozen, S. H. (1997). Sex reassignment of adolescent transsexuals: a follow-up study. Journal American Academy of Child Adolescence. 5, 55-271.
Cohen-Kettenis TP. (1998). Pubertal delay as an aid in diagnosis and treatment of a
transsexual adolescent. European Child and Adolescent Psychiatry, 7, 246–248.
Cohen-Kettenis, P.T., Delemarre-van der Waal, H., Gooren, L. J. G. (2008). The treatment of adolescent transsexuals: Changing insights. Journal of Sexual Medicine, 5, 1892-1897.
Cohen-Kettenis PT, Schagen SE, Steensma TD, de Vries AL, Delemarre-van de Waal HA. (2011). Puberty suppression in a gender-dysphoric adolescent: a 22-year follow-up. Archives of Sexual Behaviour, 40 (4), 843-847.
deVries, A. L. C., Cohen-Kettenis, P. T., &Delemarre-van de Waal, H. A. (2006). Caring for transgender adolescents in BC: Suggested guidelines. Clinical management of gender dysphoria in adolescents.International Journal of Transgenderism, 9, 83–94.
De Vries, A., Steensma TD, Doreleijers TA, Cohen-Kettenis PT. (2011). Puberty suppression in adolescents with gender identity disorder: a prospective follow up study. Journal of Sexual Medicine, 8 (8), 2276-2283.
Dillman D.A., Tortora, R. D., and Bowker, D. (1998). Principles for Constructing Web Surveys.SESRC Technical Report, 98-50. (Online) Available at: http://survey.sesrc.wsu.edu/dillman/papers/websurveyppr.pdf. (Accessed on 24th June 2010.)
Glaser, B., andStrauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Aldine Press. Chicago.
Giordano, S. (2007). Gender atypical organisation in children and adolescents: Ethico-legal issues and a proposal for new guidelines. International Journal of Children’s Rights, 15, 365-390.
Giordano, S. (2008a). Lives in a chiaroscuro. Should we suspend the puberty of children with gender identity disorder? Journal of Medical Ethics, 34, 580-584.
Giordano, S. (2008b).Ethics of management of gender atypical organisation in children and adolescents.International Public Health Policy and Ethics, 42, 249-272.
GIRES (Gender Identity Research and Education Society) (2012).Medical care for gender variant children and young people. (Online). Available at: http://www.gires.org.uk/varyoung.php (Accessed on 8th July 2012).
Green, R. (2008). A Tale of Two Conferences.Gender Trust News, 73, 10-11.
Miner, M. H., Bockting, W. O., Swinburne Romine, R., & Raman, S. (2011). Conducting Internet research with the transgenderpopulation: Reaching broad samples and collecting valid data. Social Science Computer Review, 30(2), 202-211.
Patton, M. Q. (1990).Qualitative evaluation and research methods (2nd Edition). Sage Press.
Smith, Y. L., van Goozen, S. H., and Cohen-Kettenis, P. T. (2001). Adolescents with gender identity disorder who were accepted or rejected for sex-reassignment surgery: a prospective follow up study. Journal of the American Academy of Child and Adolescent Psychiatry, 40, 472-481.
Smith, Y. L., van Goozen, S. H., Kuiper, A. J., and Cohen-Kettenis, P. T. (2005). Sex-reassignment: outcomes and predictors of treatment for adolescent and adult transsexuals. Psychological Medicine, 35, 89-99.
Sue, V.M. & Ritter, L.A. (2007). Conducting Online Surveys, Sage, London.
Tuckett, A. G. (2005). Applying thematic analysis theory to practice: a researcher’s experience. Contemporary Nurse, 19, 75-87.
Vanderschueren D., Vandenput L., Boonen S., Lindberg M.K., Bouillon R., Ohlsson C. (2004). Androgens and Bone.Endocrinological Review, 25, 389–425.
Whittle, S., Turner, L, Alami M. (2007). Engendered Penalties: Transgender and Transsexual People’s Experiences of Inequality and Discrimination, Cabinet Office, London.
Whittle, S., Turner, L., Combs, R., Rhodes, S. (2008). TransgenderEurostudy: Legal survey and focus on the transgender experience of health care. Press for Change. (Online) Available at: www.pfc.org.uk/files/ILGA_report.pdf. (Accessed on: 24th June, 2010.)
World Economic Forum (2011).Global Gender Gap Report 2011.(Online). Available at: http://www.weforum.org/issues/global-gender-gap. Accessed on: 3rd December 2011.
Wright, K. B. (2005). Researching Internet-based populations: Advantages and disadvantages of online survey research, online questionnaire authoring software packages, and web survey services. Journal of Computer-Mediated Communication, 10(3), Article 11.
World Health Organization (2010).International Classification of Diseases - 10.(Online). Available at: http://apps.who.int/classifications/icd10/browse/2010/en#/F64.0. (Accessed on 3rd December 2011).
Zucker, K. (2008). Children with gender identity disorder: Is there a best practice? Neuropsychiatrie de l’enfanceet de l’adolescence, 56, 6, 358-364.
Corresponding Author: Alys Donnelly
Contact Details: firstname.lastname@example.org
The University of Cambridge Centre for Gender