'The Training Needs of Nursing and Medical Practitioners to Promote Clinical Knowledge and Cultural Competence in the Care of Transgender Clients.'
'The Training Needs of Nursing and Medical Practitioners
to Promote Clinical Knowledge and Cultural Competence
in the Care of Transgender Clients.'
By Susannah Clark B.Sc., M.A., Cert.Ed., RN.
Supervisor: Dr Louise Phillips (City University, London, UK)
Overview: There is a growing transgender population in the United Kingdom, but previous literature reviews have suggested a shortfall of research on transgender health. Transgender clients face stigma and significant psycho-social pressures which often leave them marginalised and vulnerable. Access to treatment they need is conditional on a contentious mental health diagnosis, and they report problems with some practitioners who lack cultural competence.
Aims: To carry out a literature review of relevant research studies, to attempt to find out how nursing and medical curricula might be developed to help improve health provisions for transgender adults in the UK; and to identify gaps in the literature, where further research may be valuable.
Methods: A literature search was carried out, in a reproducible manner, using key words and search parameters, and it identified 9 relevant studies. These were critically appraised, using appropriate appraisal tools as a framework.
Limitations: Because of the paucity of UK research, there was a dependence on overseas studies. Additionally, because the literature is sparse, there is uncertainty about what is currently taught to students on transgender subjects in the UK.
Results: The 9 research studies under review provided valuable data from a number of angles. 4 ethnographic studies of transgender experience confirmed problems with practitioners' lack of knowledge and cultural competence about transgender health, which appears particularly acute at primary care level. 2 other studies showed that practitioners also express concern about knowledge shortfalls. The actual curricula being delivered in the UK about transgender health remains unclear. There is a case for a research agenda, like the one published in the USA in 2011 by the Institute of Medicine.
To my supervisor, Louise Phillips, who gave me so much support with this literature review. To Melissa Chamney, my personal tutor, who supported me throughout my training with great encouragement. To Gabriela Korn, who befriended me on my first day at university, and is my peer, my friend and my supporter. To Stewart Woodward, the friend who stood by me through good times and bad. To my four brothers, who are always there for me. To Doreen Pullen and Jose Cañamares who trained me as a healthcare assistant and gave me the confidence to become a nurse - and to all my friends and colleagues on the Critical Care Unit at Papworth Hospital. To Jessica Hart-Garbett, who gave me financial support to do this training. To my partner Karina Freyjudottir, who understood and gave me space when I was writing this dissertation. Last of all, and with tenderness forever, to my children, whose loyalty is humbling, and whose love touches me daily.
In this opening chapter, the background and reasons for the literature review are described, some subject-related terms are defined, a key question is identified, and aims and objectives are outlined.
Definition - the word 'Transgender'
For the purposes of this literature review, the term 'transgender' (or the abbreviated 'trans') will be used as an umbrella term for a diverse population who cross perceived social norms of gender, in the way they dress, identify or live. This term is used with slight differences in the United States (US) compared to the United Kingdom (UK), where the term 'transsexual' is more commonly applied to those individuals who undergo genital re-assignment surgery (GRS) or take hormones that may alter physical appearance. In this literature review, the term will be used in the collective and inclusive sense, while sometimes referring to transsexual people specifically. (A longer list of terms and definitions is appended in Appendix 1 as a reference resource.)
Who is transgender?
There are estimated to be 12,500 transgender individuals aged over 15 in the United Kingdom (UK) who have presented to the health service for help over gender issues, of whom 7,500 have undergone transition. This is a 2010 figure, but the number seeking treatment is doubling every 6.5 years according to the Gender Identity Research and Education Society (GIRES, 2011). This population is diverse: some undergo gender surgery; some live gender-variant lives without undergoing surgery; some would define more loosely as 'gender queer' (Nestle, Howell and Wilchins, 2002) or deny definition by a gender binary at all. The term 'transgender' is frequently conflated with sexual orientation: however, being transgender is about gender identity, not about who one is attracted to.
Transgender children and adolescents form a very important (and sometimes contentious) sub-category but have been excluded from this literature review because their specific and complex issues merit separate research and investigation (GIRES 2008), and are beyond the parameters that I, as a student of adult nursing, have set for this particular study.
Social determinants of poor health
Transgender health is not just about genitals and hormones. Transgender people are often vulnerable to stigma (Namaste, 2000), to transphobia (which is the fear, hatred or abuse of transgender people), to violence (Kenagy, 2005), and to economic and social marginalisation. These feed into social determinants that have negative consequences for health and access to health. Economic marginality leads some into sex work (Vanderleest and Galper, 2009), with related high rates of HIV (Herbst et al., 2007). Understanding transgender health needs therefore involves understanding the psycho-social contexts of transgender lives (Brennan et al., 2012).
Shortage of research and evidence-base
Literature reviews have for years been acknowledging the shortage of research undertaken with regard to the health needs of transgender clients (Meads et al., 2009), and specifically the need for better nursing and medical training in this area.
The rationale of this literature review is to identify research papers that offer relevant findings about the training needs of nursing and medical students, if they are to provide knowledgeable and culturally competent care to the growing transgender population.
Why this issue, and why now?
The case for exploring this subject now appears compelling. As the social and legislative climate improves, with the Gender Recognition Act (Great Britain, 2004) and the Equality Act (Great Britain, 2010), an increasing number of people are coming forward to seek help, which creates growing demands on the Gender Identity Clinics (Davies et al., 2013) and increased interaction with GPs and primary care in the context of general health needs. In the context of this growing demand, the question of 'what needs to be taught' appears pertinent and urgent. It is important for practitioners themselves, who may experience uncertainty and discomfort (McNeil et al., 2012), if they lack knowledge and the cultural competencies to support their transgender clients.
What is needed in nursing and medical curricula in order to improve the healthcare provision for transgender/transsexual adults in the UK?
To explore the evidence base for:
(a) how transgender individuals view healthcare provision, and what improvements they would like to see factored into the training of healthcare practitioners
(b) the content and extent of trans-relevant training actually being taught in nursing and medical schools at present, and how it is delivered
(c) the outcomes of curricula measured in the actual knowledge and attitudes of nursing students and medical students with regard to transgender individuals
(d) what healthcare practitioners themselves believe they need to provide good standards of care to transgender clients
(e) what might be useful in terms of future research to aid curriculum development
In this chapter, the methodology for literature selection and critical appraisal is explained. The literature search, to identify papers relevant to the research question, is detailed with reference to: databases used, key words and search terms, filters applied, as well as inclusion and exclusion criteria. A table then sets out the results of the search. Having identified the literature to be reviewed, appropriate critical appraisal tools are selected.
The literature search was carried out to identify relevant peer-reviewed research and the process is outlined to promote transparency and reproducibility (Polit and Beck, 2009). Using Ebscohost, I selected 6 databases most likely to hold papers related to nursing and medical training and transgender needs. The selected databases were CINAHL Plus, Gender Studies Database, MEDLINE, PsycARTICLES, PsycINFO, and Psychology and Behavioural Sciences Collection.
I selected 2 dominant keywords: 1. Health care (technically two words but coupled). 2. Transgender. I selected 4 supporting keywords: 3. Education. 4. Medical. 5. Nurs* (truncated to include singular and plural). 6. Students. I then considered relevant synonyms and search terms: Transsexual, curricul*, and training. The literature search would continue until saturation appeared to have been reached. As well as identifying qualifying research papers, a record would be kept of relevant non-research papers and articles for later study and perspective.
Inclusion and Exclusion Criteria
Inclusion criteria to locate relevant studies were applied:
~ Peer-reviewed research with resilient methodology
~ Relevance to adult transgender health curricula
~ Studies only between January 2004 and 2014
Because previous reviews of literature in the field of transgender health had highlighted its scarcity, the date parameters were kept wide. For similar reasons, the search was not limited to UK studies, because of a historic lack of UK research in this field but transfer of findings to UK contexts would need to be cautious and circumspect.
Exclusion criteria to narrow down to most relevant studies were:
~ Studies unlikely to be transferable to UK curricula
~ Studies prior to 2004
~ Studies where the primary focus was on children and adolescents
The search then commenced, selecting the 'abstract' field to narrow down the results and increase their relevance.
The search commenced by using 'transgender' and 'health care' as keywords, but as this resulted in 503 results, a combination of secondary key words and synonyms were then used, identifying 12 articles in total (see Table 1). On closer inspection, 3 of these were eliminated: one for the cultural disparity of its religious community; one because the study did not seem resilient in its methodology; and one because it was based on earlier work dating back to 1997.
The order of the search process is set out below in Table 1. The figures in red are the number left after initial inclusion and exclusion criteria had been applied. The right-hand column lists duplicates already identified in an earlier search in the sequence.
Critical Appraisal is a process of systematically and objectively assessing research to ensure that data has been gathered and analysed through a methodology that can be trusted to provide valid and reliable evidence; and to measure the objectivity, relevance and usefulness of the findings. The ethics and integrity of the research are also reviewed. Critical appraisal tools support this process of appraisal by providing approach frameworks and checklists.
The following critical appraisal tools have been used in the appraisals in Chapter 3:
For the qualitative studies, The Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist (CASP, 2013) was applied. It is widely used in nursing study.
In addition, an adapted form of 'The Newcastle Ottawa cohort scale for Cross-Sectional Studies' (Wells et al., 2000) was used for the cross-sectional questionnaire-based research of Obedin-Maliver et al. (2009), Muller (2013), and Rondahl (2009). There is less consensus about critical appraisal tools for cross-sectional research of this kind, but this particular model was found enabling and productive.
These tools are presented in Appendix 2.
In this chapter, 9 journal papers are critically appraised, using the critical appraisal tools detailed in section 2.4. (Appendix 3 provides the reader with a summary overview of these 9 studies.) A synthesis of their main findings is then presented, as they relate to the research question of this literature review.
9 research studies were identified by search process. 6 of these were qualitative studies and the Critical Appraisal Skills Programme Qualitative Research Checklist (CASP UK, 2013) was used to help appraise these. In the appraisal which follows, significant criteria from this tool have been applied to all 6 studies, and then criteria are outlined one by one, to see how well the various papers met them.
The other 3 studies were cross-sectional studies and an adapted form (Newcastle-Ottawa Scale adapted for cross-sectional studies, no date) of 'The Newcastle Ottawa cohort scale for Cross-Sectional Studies' (Wells et al., 2000) was used to appraise these. Once again, significant criteria from this tool are applied and reported in the same way.
The 6 Qualitative Studies
Two Screening Questions:
All 6 qualitative studies met the requirements of the screening questions of the critical appraisal tool - they presented clear statements of their research aims; and selection of a qualitative methodology was fit for purpose.
Research Design and Data Collection Method:
All the qualitative studies sought to ground research in the lives and healthcare experiences of transgender people (Bauer et al., 2009; Poteat, German and Kerrigan, 2013; Rounds, Burns McGrath and Walsh, 2013; Xavier et al., 2013) or practitioners (Lurie, 2008; Snelgrove et al., 2012). Two approaches were used: individual interviews or focus groups. The approaches were mostly semi-structured, often framed around key topics. 4 studies reported use of scrutineers to help shape and review which topics to employ (Poteat, German and Kerrigan, 2013; Rounds, Burns McGrath and Walsh, 2013; Xavier et al., 2013; Lurie, 2008).
Recruitment Strategy and Sampling:
The sample sizes of the qualitative studies in this review vary. Larger samples - 88 (Bauer et al., 2009), 77 (Poteat, German and Kerrigan, 2013), 47 (Xavier et al., 2013) - provide a challenging volume of data to analyse, and saturation was sometimes reached (in Poteat's case, after 42 samples). Smaller samples - 11 (Rounds, Burns McGrath and Walsh, 2013), 13 (Lurie, 2008), 13 (Snelgrove et al., 2012) - provided in-depth descriptive data, but could have reliability implications if findings were transferred to different contexts (acknowledged by Rounds, Burns McGrath and Walsh, 2013).
Recruitment in these qualitative studies was usually purposive. Some snowball sampling was used (Snelgrove et al., 2012), enabling the elaboration of emerging themes. There were some limitations to the sampling in these papers. The absence of any trans woman in one study reduced its representational quality (which was acknowledged - Rounds, Burns McGrath and Walsh, 2013). One of the sampling challenges was recruitment of those who are most erased. Xavier et al's (2013) sample was an exception, attracting more marginal individuals.
Ethics and Integrity of the Researcher's Role:
Generally, the relationship between researcher and participants has been considered, for example by involving other people in the execution of the data collection (Bauer et al., 2009), or by subjecting structured questioning to independent review (Xavier et al., 2013). In 5 of the 6 qualitative studies, ethical approval was obtained for the study design and data collection processes. Lurie's (2008) study was funded by the US Department of Health who may have required ethical approval for the research, but this is not explicitly stated. Informed consent was sought in all 6 studies and confidentiality was protected, typically ensuring no disclosure of identifying information.
Rigour and Clarity of the Data Analysis and its Reporting:
The reporting of the data analysis process varied considerably in detail. The use of data analysis software was reported in 4 of the 6 qualitative studies, offering objective methods of organising data and coding transcripts: NVivo 2 (Xavier et al., 2013), NVivo 7 (Bauer et al., 2009), Atlas.ti (Poteat, German and Kerrigan, 2013), and Weft QDA 1.01 (Snelgrove et al., 2012). In all these four cases, a grounded theory approach was being used, allowing for the natural emergence of pattern and theory, in initial open coding, and then grouping by constant comparative analysis (Bauer et al., 2009; Poteat, German and Kerrigan, 2013).
Rounds, Burns McGrath and Walsh (2013) and Lurie (2008) reported on coding taking place but there was no explicit description of how this was done, or how data was selected. This is a limitation compared to the other 4 qualitative studies.
(The last two questions of the appraisal tool concern the clarity and significance of the findings, and are addressed in Section 3.3. )
The 3 Cross-Sectional Studies
For the cross-sectional studies in this review, an adapted version of the Newcastle-Ottawa Scale was used (see Appendix 2). One study (Obedin-Maliver et al., 2009) included free text answers, and the qualitative appraisal tool was also used in tandem with the cross-sectional tool in this case. The research aims of all 3 studies were clearly stated, and ethical approval and informed consent were gained in all cases.
Representative Nature of Sample and Sample Size:
In all 3 studies the samples were numerically quite small. The study of 132 medical schools in North America (Obedin-Maliver et al., 2009) offered sufficient range of replies to draw generalised and system-wide conclusions with small confidence intervals in the findings. On the other hand, Muller (2013) and Rondahl (2009) used samples from a single university, resulting in specificity that makes generalisations less secure. The response rate in Rondahl's (2009) study was 92% which is strong, Obedin-Maliver et al.'s (2011) response rate was sound, but no response rate is provided in Muller's (2013) report, which limits the ability to be clear about possible bias in the sample (Polit and Beck, 2009).
Appropriate Measurement Tool:
All three studies used questionnaires. Obedin-Maliver et al.'s (2009) tool was new, and the questionnaire was piloted (appropriate for a new tool). Muller (2013) used Obedin-Maliver's instrument and adapted it. She did not report on how questions were drafted, or whether they were reviewed or piloted. Rondahl (2009) used a modified version of the 'Knowledge about Homosexuality' questionnaire (Harris, Nightengale and Owens, 1995). Because this was a modified tool being used for the first time, it was reliability-tested with a Cronbach alpha reliability co-efficient of 0.82 which is sound. All three questionnaires were suitable tools to achieve snapshot cross-sectional measurements.
Statistical Tests used to Analyse the Data:
Rondahl (2009) used the Statistical Package for Social Sciences (SPSS) version 14 to test and analyse the data. Mean scores and standard deviation were clearly reported although the processes of analysis were not reported in detail. Obedin-Maliver et al.'s (2009) process of data analysis is clearly described. 2 investigators separately coded data, using professionally recommended survey metrics, while a 3rd reconciled discordant coding. Comparative analyses were made of different categories of school and course stages. In contrast, the paucity of Muller's (2013) methodological narrative - and specifically how the data was analysed - may be regarded as a significant omission that weakens confidence in what are otherwise interesting and potentially valuable findings (see 3.3).
Assessment of Outcome:
Interesting and useful findings from these studies are reported in section 3.3. Obedin-Maliver et al.'s (2011) outcomes were effective for measuring teaching content, but did not set out to measure efficacy (which is acknowledged). There was a possibility of bias in the school deans' self-reporting of teaching performance (also acknowledged) but only 25% said their delivery of LGBT was at least 'good', suggesting the encrypted confidentiality led to candid replies. Rondahl (2009) presented a case for more training, on the basis of failure rates in the tests, settling on a 70% score to 'pass', but did not report persuasively on how that exact score was established beyond author's own judgment. Muller's (2013) study produced interesting data, which justify the study's inclusion in this literature review. Having said that, there are reservations (detailed above) about process and process reporting.
The findings of the research are explored below in 8 categories. These categories are further explored in the wider commentary in the next chapter.
The first study explores the erasure of transgender clients' experience and its replacement with a medical definition of who they are (Bauer et al., 2009). Transsexuality is portrayed as an anomaly, focussed on genitalia rather than the wider social realities of transgender lives. This is re-inforced by psycho-pathologisation (Bauer et al., 2009) with access to the treatment made conditional on a mental health diagnosis (Snelgrove et al., 2012). Poteat, German and Kerrigan (2013) analyse the dynamic of medical power, with medical insecurity leading to stigma and status loss for the client. A strong case is made for opening students' minds to the damage stigma does, and to challenge stereotypical assumptions in their practice (Muller, 2013; Rondahl, 2009). This concerns attitude, as much as knowledge, (Muller, 2013) and should be a focus of good training (Bauer et al., 2009; Poteat, German and Kerrigan, 2013).
Having considered the dominant medical model of transgender healthcare, the principles of institutional ethnography are adopted by several studies, to build an evidence-base on the actual experience of transgender clients (Bauer et al., 2009), and initiate a form of 'reverse discourse' through which to critique the system. There are repeated calls for practitioners to develop greater 'cultural competency'. 'Lack of comfort', difficult meetings, and fear over wording (Lurie, 2008) are reported.
At the heart of much of this cultural competency deficit is a lack of knowledge and insight of the actual psycho-social challenges of living daily life as transgendered people (and a lack of interest in them - Bauer et al., 2009). The social realities of being transgender are often difficult, and can lead to marginality and sex work. (Xavier et al., 2013). 'Listening to' transgender experience is crucial because of a whole background (Xavier et al., 2013; Lurie, 2008) of social exclusion and erasure, which mean that 'being transgender' in is by its nature a significant social determinant of health (Muller, 2013; Xavier et al., 2013).
Often faced with life crises, transgender clients frequently report encountering lack of knowledge (Xavier et al., 2013) with a repeated call to practitioners to 'educate yourselves' and frustration that the clients often have to 'educate' the providers (Bauer et al., 2009; Rounds, Burns McGrath and Walsh, 2013; Snelgrove et al., 2012). This overall issue of cultural competence and medical competence presents a compelling evidence base for the need for further research into healthcare training.
There is a lack of precise information on what is taught by health faculties about transgender health. There is a case for more research, especially in the UK. The North American study by Obedin-Maliver et al. (2009) suggested LGBT teaching was not 'good' enough: only 25% of Deans claimed their curricula were 'good' or better. This is also reflected in the Cape Town study, where there was no reported LGBT teaching of any kind in the nursing curriculum (Muller, 2013). Secondly, what teaching there is, often seems to be interspersed, not co-ordinated (Obedin-Maliver et al., 2009).
On one topic, there is contradictory evidence. Obedin-Maliver et al. (2009) found that the teaching around transition needs was notably infrequent, even though these are probably the very issues most general practitioners encounter. In contrast, Muller (2013) found transition was covered well. This discrepancy can probably be accounted for by the specificity of Muller's study where the particular university had transgender specialist services.
Several of the studies also raise the usefulness of transgender involvement in delivery of curricula, enabling students to encounter actual trans people and listen to their narratives (Obedin-Maliver et al., 2009; Rondahl, 2009; Lurie, 2008). Some of Lurie's respondents make the point that continuing education should extend beyond student training to provide for staff at all levels in organisations. There are system-wide needs for cultural competency.
Although the research of Obedin-Maliver et al. (2009) and Muller (2013) measured quantity of teaching, it also recognised the need for further research on its efficacy. This leads to Rondahl's (2009) study.
If evidence of teaching content is sparse, evidence of teaching outcomes is even scarcer, with searches revealing just one Swedish study of nursing and medical students (Rondahl, 2009). The findings indicated insufficient knowledge about various aspects of LGBT care. One reservation has been expressed above, about how 'passing scores' were established. However, the data does suggest a correlation between some religious beliefs and less cultural engagement. In addition, it raises particular concerns about nursing students' knowledge in aspects of care for transgender clients.
Two studies have been carried out on practitioners' experiences of transgender healthcare (Lurie, 2008; Snelgrove et al., 2012). They are interesting to compare and contrast. Lurie's involved HIV specialist providers likely to be familiar with transgender clients; whereas the other sample (Snelgrove et al., 2012) consciously selected a range of practitioners, including a significant proportion of generalists with little or no experience of transgender patients. Lurie's sample generates valuable input on the skills that practitioners need (and need to be taught) if they are to be culturally competent.
Snelgrove et al.'s (2012) sample, however, was of particular interest because so many problems are reported at primary care level (reflecting Obedin-Maliver et al.,'s findings on lack of teaching of primary care issues like transition and 'coming out'). The study confirmed front-line vulnerability at primary care level - a sense of being "completely out at sea"(Snelgrove et al., 2012).
Practitioners express anxiety over the ethics of transition (Snelgrove et al., 2012) and the difficulty of reversing it; and particularly anxiety over hormone treatment. This discomfort is compounded if the practitioner also feels that transgender clients are 'choosing' this as a lifestyle (Snelgrove et al., 2012) leading to the operation of an 'attribution model' of stigma (Poteat, German and Kerrigan, 2013).
One counter-argument is developed in Snelgrove et al.'s (2012) study which raises interesting and contradictory ideas to the main thrust of much of the research being reviewed. A number of doctors felt the curriculum was already too full, and transgender medicine too specialist, and that it would be better to have access to better guidelines, and to develop localised centres of transgender expertise (rather like sexual health clinics), where practitioners with special interest could develop skills, and act as a resource for others. This concept could merit research and piloting. However, while in fact there are very detailed guidelines available, the ethnographic data suggests that many doctors fail to read them. The reported experience of transgender clients suggests that cultural competency training is needed, and not just for specialists.
There is a shortage of research in many aspects of transgender healthcare, supporting Bauer et al.'s (2009) suggestion of system-wide erasure. Lessons can be learnt from the studies in this review, about how future research could be conducted, involving transgender groups, individuals and advocates in the various stages of the research process: in planning parameters and research questions; in gathering the data; and reviewing findings afterwards.
Methodological limitations have been evaluated above, and general limitations on the review will be mentioned in the next chapter. Some of the most significant limitations occurred around sample selection issues, which then coloured the research findings. The contrasting samples of Lurie (2008) and Snelgrove et al. (2012) have been mentioned.
This literature review is exploring the relevance of curriculum development for both medical and nurse training, but is submitted as a component of an adult nursing undergraduate course. These issues are specifically relevant to nurses. As Bauer et al.'s (2009 p. 359) study points out, "Nurses are in key positions to affect trans patients' experiences in health care." Their duty of care for transgender patients requires cultural competencies that need to be instilled in their training. Rondahl (2009) recommends that further research is carried out on practising nurses' LGBT knowledge and attitudes, to help inform the training that needs to be put in place.
In this chapter the findings of the 9 main studies are considered in the context of other work done in the field. The format used in 3.3 has been replicated for ease of reference. The implications for future nursing and healthcare practice are considered, with reference to research, education, and the needs of both clients and practitioners. In Chapter 5, the research question will be reviewed.
Bauer et al.'s (2009) study described the erasure of transgender lives. Poteat, German and Kerrigan, (2013) developed this further in their exploration of the way that stigma operates. These studies built on earlier work by writers like Namaste (2000) who spoke of the productive nature of power, with transgender clients reduced to medical versions of themselves. This is epitomised by the process of psycho-pathologisation (Bauer et al., 2009), with access to treatment conditional on a mental health diagnosis (Snelgrove et al., 2012; Merryweather and Bruce, 2014) which complicates therapeutic relationships (Davies et al., 2013; McNeil et al., 2012; Lev, 2005).
In the face of societal erasure, there is a counter-discourse (championed by Merryweather and Bruce, 2014 and also by MacDonnell and Andrews, 2006) that calls for research to promote trans' voices; and the building of 'transpositive' therapeutic relationships (Raj, 2002) where gender identity is not defined as a problem but a potential, leading to the prospect of 'transgender emergence' and empowerment (Lev, 2004). Education can play an important role in this by questioning social stereotypes.
Like Bauer et al. (2009), Poteat, German and Kerrigan (2013), Rounds, Burns McGrath and Walsh (2013) and Xavier et al.(2013) rooted their research in the voices and experiences of transgender individuals, to allow them to define their lives for themselves - "We are experts on our own lives and what we need as patients" (Feinberg 2001, p. 899). This method is what Smith (1987) called 'institutional ethnography', using subjective experience to voice a form of 'reverse discourse' that the researcher can then use to critique institutions, and - with reference to this literature review - identify education gaps.
One of the recurring accounts of transgender clients is of 'having to educate' their practitioners (Namaste, 2000; McNeil et al., 2012; Bauer et al., 2009)(Rounds, Burns McGrath and Walsh, 2013). Perhaps more than anything, there is a lack of understanding of the psycho-social challenges of trans lives (Xavier et al., 2013; Lurie, 2008). 'I don't think the health care professionals see the years of isolation and struggle,' one trans person said (Schilder et al., 2001, p. 12). Transgender life can involve years of social exclusion, discrimination, job loss, economic hardship, homelessness (Thornhill and Klein, 2010; McNeil et al., 2012), depression (McNeil et al., 2012), violence (Kenagy, 2005), suicide attempts(McNeil et al., 2012), and sometimes resorting to survival sexwork - related in Xavier et al.'s study (2013), and also reported by Hannsmann et al. (2012), Schilder et al. (2001), Thornhill and Klein (2010), Vanderleest and Galper (2009) and Keiswetter and Brotemarkle (2010). This in turn is linked to high prevalence of sexually-transmitted infections (Lim, Brown and Jones, 2013) and trans people testing positive for HIV (28% of North American trans women, Herbst et al., 2007). These are significant social determinants of health (Muller, 2013; Xavier et al., 2013; Brennan et al., 2012; Lim, Brown and Jones, 2013) yet they are often unreported.
The narratives of the ethnographic approach raise significant issues for healthcare education. As one of the studies put it in its title: "I don't think this is theoretical - this is our lives" (Bauer et al., 2009).
Lack of transgender content in healthcare education is reported by Vanderleest and Galper (2009), Alegria (2011), Sequeira, Chakraborti and Panunti (2012) and Brennan et al. (2012).
A key principle, raised by Obedin-Maliver et al. (2009) and Muller (2013), and repeated by many, is that it is attitudes and not just knowledge that need to be addressed. Statistically, it has been shown that contact with a minority group tends to reduce prejudice (King, Winter and Webster, 2009, developing Allport's 1954 classic contact theory). To achieve this, transgender involvement in the delivery of the curricula has been advocated by many (Obedin-Maliver et al., 2009; Rondahl, 2009; Lurie, 2008; Kelley et al., 2008; Brennan et al., 2012; Hanssmann et al., 2010; Thornhill and Klein, 2010).
There is also a need for continuing education at all levels of organisations to promote transgender cultural competency at work (Whittle, Turner and Al-Alami, 2007; Keiswetter and Brotemarkle, 2010; Hansmann et al., 2010) (Vanderleest and Galper, 2009).
Obedin-Maliver et al.'s (2009) research has had an impact in the US, along with the subsequent clear call for research by the Institute of Medicine (2011). A persuasive case could be made for equivalent research in the UK.
Rondahl's (2009) research into what nursing and medical students actually learn about LGBT issues in their training has been discussed above (3.3) and is corroborated by repeated client accounts of having to 'educate the providers' (Bauer et al., 2009; Rounds, Burns McGrath and Walsh, 2013). In other studies, Eliason and Raheim (2000) investigated nursing students before their main training began, and found discomfort about groups they were not familiar with. Dorsen (2012) reviewed literature on nurses' attitudes to LGBT, and found correlations to do with personal contact, education, and conservative religion (Tee and Hegarty, 2006; Dinkel et al., 2007).
Although Rondahl's (2009) data pointed to poor outcomes in an existing curriculum, the fact that curriculum change can make a positive difference has been demonstrated by Kelley et al. (2008) and Strong and Folse (2013) in pilot interventions that measured attitudes before and after.
Just as it is valuable to gather first-hand data from transgender clients about their experience of health care, it is also valuable to draw on first-hand data from practitioners as well, if a clear understanding of training needs is to be gained.
To begin with, a distinction - illustrated in the different samples of Lurie (2008) and Snelgrove et al. (2012) - needs to be drawn between specialist transgender care (in HIV and Gender clinics) and the frontline vulnerability and uncertainty of primary care practitioners. This position of GP's is particularly acute because at the crisis point of transition, these are exactly the people transgender clients are most likely to turn to (Wylie, Hainsworth and Ryles, 2007).
It is the strongest observation of this literature review that many primary care practitioners are lacking in knowledge and competencies to adequately care for transgender clients, and that this shortfall needs to be addressed through education.
Practitioners in the reviewed literature acknowledge a lack of cultural competency. They express a lack of comfort (Bauer et al., 2009; Rounds, Burns McGrath and Walsh, 2013; Lurie, 2008), a fear of saying the wrong thing (McNeil et al., 2012; Lurie, 2008), and uncertainty about the right terminology (Brennan et al., 2012). Most serious, there is a lack of knowledge (including medical knowledge). It is exacerbated by a lack of training and insight about the lives of transgender people, and the profound social pressures they face (Cobos and Jones, 2009).
Having said that, practitioners clearly require support as well. For example, transition-related competencies would be beneficial, but practitioners are also confronted with the ethics of transition (Snelgrove et al., 2012), and this can place them in sensitive and problematic situations. This is particularly the case with hormone treatment, because there is uncertainty and lack of research over long-term effects of transgender hormone treatment (Feldman and Goldberg, 2006) (Gooren 2011). Some types of hormone therapy are not even officially licensed for gender dysphoria.
There is also the issue of moral and social attitudes. As Poteat, German and Kerrigan (2013) observed, some practitioners exercise an 'attribution model' of stigma and medical power, where being transgender gets seen as a choice of lifestyle (Snelgrove et al., 2012), and cosmetic, leading to reticence over treatment. In this, some practitioners reflect society at large. Gender is relegated to 'construction' and given 'performance status' (Namaste, 2000) with transgender people seen by some as the 'dupes' of gender, aspiring to stereotypes in what amounts to a fantasy (Lev, 2004).
There is a serious case for investigating a future where transgender health networks are developed to operate at primary care level. Snelgrove et al.'s (2012) findings on this are valuable and potentially significant. If they were, then education could be disseminated to local practitioners. However in the absence of funding for these, the onus falls on training and curricula to prepare for the real (and growing) demands being placed on healthcare providers.
Research is a vital foundation for evidence-based curriculum development (Vanderleest and Galper, 2009).
However, there is a serious shortage of research on transgender health generally, supporting Bauer et al.'s (2009) evidence of erasure. An extensive literature search and review carried out by Meads et al., (2009) for Birmingham University, found an absence of any peer-reviewed UK-specific research on the general health of transgender people. Specifically, a scarcity of nursing literature and research is reported (Merryweather and Bruce, 2014; Lim, Brown and Jones, 2013; Keepnews, 2011; Dinkel et al., 2007; Eliason, Dibble and DeJoseph, 2010).
Outside of the main body of peer-reviewed journal articles, two large-scale studies of transgender individuals have been carried out in recent years in the UK. These fall outside of the parameters of the main texts studied in this literature review, but they carry weight from a UK perspective: McNeil et al. (2012) with 889 transgender respondents and Whittle, Turner and Al-Alami (2007) with 872 transgender respondents.
There is a strong case for further research, and there are opportunities in the UK for academics and health faculties to form alliances with research groups like GIRES, both in the development and execution of research, and in working towards curriculum development.
The lack of UK research and academic literature on this subject has been acknowledged, and limits the review, because of dependence on overseas studies.
The papers reviewed in this dissertation, and much of the discourse, focus upon the expressions of 'transgender' to do with transition and journeys including hormones or surgery. The author acknowledges this focus, but it needs to be borne in mind that transgender is a term that describes wide and diverse gender expressions, all of which may be encountered by health practitioners.
The final limitation is a simple lack of knowledge, because of absence of research, of what is already being done in nursing and medical education in the UK to equip practitioners to care for transgender clients in the future. This limitation invites the prospect of research to redress it.
Nurses are in key positions to influence the health care experience of transgender clients (Bauer et al., 2009). They are the largest group of health providers, they spend most direct time with clients (Benner at al., 2010) and are therefore a key group for training in cultural competence (Lim, Brown and Jones, 2013) and challenging stereotypes (Muller, 2013; Rondahl, 2009).
Nurses are also well-positioned to be advocates of transgender clients (Merryweather and Bruce, 2014; Polly and Nicole, 2011; Keiswetter and Brotemarkle, 2010; Vanderleest and Galper 2009). Such advocacy depends on education: "The capacity to advocate… is shaped by awareness" (MacDonnell, 2009, p. 13).
These issues present challenges for the student nurse, but they also offer opportunities for learning, for growing as a person, and for providing competent and compassionate care to a marginalised and often mistrustful minority.
This literature review set out to find answers to its research question:
'What is needed in nursing and medical curricula in order to improve the healthcare provision for transgender/transsexual adults in the UK?'
This remains a question that merits further research. However, the 9 research studies under review provided valuable data from a number of angles.
The 4 ethnographic studies on transgender experiences highlighted both continuing erasure of the transgender population, and a view that many practitioners do lack knowledge and cultural competencies about transgender health. This appears particularly acute at primary care level.
The practitioners also express varying degrees of anxiety, when faced with clients that they have not been adequately trained to support.
The trans health curriculum being delivered in the UK is unclear. The studies elsewhere suggests that teaching needs to be co-ordinated, and ideally include contact with trans people in its delivery. However, until more research has been carried out, there is a lack of evidence-base to inform curriculum development.
With a growing transgender population, there is a case for a research agenda, like the one published in the US by the Institute of Medicine. This would support both clients and practitioners, and might contribute significantly to a more collaborative medical model.
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People who cross social gender norms in the way they live or dress or express or feel. Usually used as an adjective, not a noun.
|Trans||A shortened version of 'transgender' and usually interchangeable.|
Sometimes (and particularly in UK) used to describe people who undergo surgical changes to make gender and sex organs more congruent.
|Trans Man||Usually a person born with female genitals who identifies as male.|
|FTM||Female-to-Male, sometimes used as an abbreviation for a trans man.|
|Trans Woman||Usually a person born with male genitals who identifies as female.|
|MTF||Male-to-Female, sometimes used as an abbreviation for a trans woman.|
Usually an intermediate stage of changing from one gender expression to another. Not all transgender individuals transition, and not all do so full-time.
Short for 'Real Life Experience', not a term all transgender people favour. Clinicians use it to describe the minimum 1-year period required in new expression of gender before undergoing genital surgery, Usually it takes longer.
'Gender' or 'Genital' Re-assignment Surgery. Various other terms are used including 'SRS' for Sex Reassignment Surgery, and Gender Affirmation Surgery.
|Post-Op||Describes a transsexual person after genital surgery.|
Some transgender people have no desire to have surgery, or they are refused.
|Gender Identity Disorder||
Recently removed (2013) from psychiatric manuals because of implication of mental illness.
The experience of sadness and distress because of having to or trying to live in an attributed gender that does not feel right or authentic, and often because of incongruency between gender and genitalia. Not all transgender people experience gender dysphoria.
A term used by some to identify as not exclusively male or female, and not feeling they identify with one particular gender.
|Gender Identity Clinics||
The pathway provided for transgender clients wanting to explore gender issues in the UK and some other countries. They are a mandatory pathway for clients seeking genital surgery through the NHS in Britain.
|Gender Recognition Certificate||
Also known as 'GRC' it provides UK citizens with legal rights in a new gender, including pension rights. A trail of documentation and medical evidence has to be submitted to a 'Gender Recognition Panel'.
The belief that gender should not be limited or defined as just two standard genders. Non-binary people may choose to identify as neither male nor female.
Critical Appraisal Skills Programme (CASP) Qualitative Research Checklist
This is a summary of the main questions in the checklist, which provide a framework for appraisal. Three broad issues need to be considered when appraising the report of a qualitative research:
~ Are the results of the review valid?
~ What are the results?
~ Will the results help locally?
The 10 questions that follow are designed to help think about these issues systematically. The first two questions are screening questions and can be answered quickly. If the answer to both is "yes", it is worth proceeding with the remaining questions.
1. Was there a clear statement of the aims of the research?
2. Is a qualitative methodology appropriate? After the screening questions, the appraisal continues if those were answered 'Yes'.
3. Was the research design appropriate to address the aims of the research?
4. Was the recruitment strategy appropriate to the aims of the research?
5. Was the data collected in a way that addressed the research issue?
6. Has the relationship between researcher and participants been adequately considered?
7. Have ethical issues been taken into consideration?
8. Was the data analysis sufficiently rigorous?
9. Is there a clear statement of findings?
10. How valuable is the research?
Newcastle-Ottawa Scale adapted for cross-sectional studies
1) Representativeness of the sample:
~ a) Truly representative of the average in the target population. * (all subjects or random sampling)
~ b) Somewhat representative of the average in the target population. * (non-random sampling)
~ c) Selected group of users.
~ d) No description of the sampling strategy.
2) Sample size:
~ a) Justified and satisfactory. *
~ b) Not justified.
~ a) Comparability between respondents and non-respondents characteristics is established, and the response rate is satisfactory. *
~ b) The response rate is unsatisfactory, or the comparability between respondents and non-respondents is unsatisfactory.
~ c) No description of the response rate or the characteristics of the responders and the non-responders.
4) Ascertainment of the exposure (risk factor):
~ a) Validated measurement tool. **
~ b) Non-validated measurement tool, but the tool is available or described.*
~ c) No description of the measurement tool.
Comparability: (Maximum 2 stars)
1) The subjects in different outcome groups are comparable, based on the study design or analysis. Confounding factors are controlled.
~ a) The study controls for the most important factor (select one). *
~ b) The study control for any additional factor. *
Outcome: (Maximum 3 stars)
1) Assessment of the outcome:
~ a) Independent blind assessment. **
~ b) Record linkage **
~ c) Self report. *
d) No description.
2) Statistical test:
~ a) The statistical test used to analyze the data is clearly described and appropriate, and the measurement of the association is presented, including confidence intervals and the probability level (p value). *
~ b) The statistical test is not appropriate, not described or incomplete.
This scale has been adapted from the Newcastle-Ottawa Quality Assessment Scale for cohort studies to perform a quality assessment of cross-sectional studies.
The 9 Research Studies in this Literature Review are detailed in the following pages in landscape format, summarising some of the main points of methodology, findings, limitations, and relevance to the research question detailed in Section 1.3.
A snapshot version is set out below (only the primary researcher is named in this Appendix):
|In the central papers, the curriculum and its immediate teaching outcomes is the focus of research. 4 papers prioritise the healthcare experiences of transgender individuals (and in some cases LGBQ too). Finally 2 papers focus on practitioner experiences. Collectively these studies contribute to the understanding of training needs that healthcare practitioners have with regard to transgender clients. No equivalent UK research papers are identifiable by search, but many of the findings are (with discretion) transferable to UK settings.|
|Susannah Clark is a registered nurse working in the United Kingdom. This literature review was written at City University, London. Further papers on this subject will be gratefully received. Susannah is available to offer lectures and training to companies, churches, mosques, schools, universities and other organisations and charities. Only travel costs are charged, with an optional donation to a charity. You can contact her here: susannahclark (at) googlemail (dot) com .|