Abstract
Background
Transgender and nonbinary (TNB) people face barriers to primary care, which remains the main entry point for accessing gender-affirming healthcare in the UK.
Objectives
This systematic review aims to summarise the evidence regarding TNB people’s experiences of primary care to inform improvements in service and patient outcomes.
Methods
This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) reporting guidelines. A systematic literature search was conducted across articles from 2005 to April 2023 across Ovid Medline, Ovid Embase and PsychInfo using established keywords relating to gender identity, primary care and experiences. Qualitative data were thematically analysed and quantitative data were compiled using a descriptive narrative.
Results
Following eligibility criteria, 16 articles were included in this review. This review identified both facilitators and limitations and barriers experienced by TNB people related to primary care provider knowledge; the patient-provider relationship, and healthcare settings. Quantitative findings reported up to 54.4% of participants were uncomfortable discussing TNB issues with their physician. Overall findings suggest TNB people face discrimination on a systemic level utilising primary care services, though positive healthcare encounters at a local level were reported. Participants expressed a desire for primary care-led gender-affirming healthcare services, with involvement from local TNB communities.
Conclusion
This review demonstrates TNB people’s mixed experiences of primary care alongside their recommendations for service improvement. This is the first systematically reviewed evidence on the topic, emphasising the need for clinicians and policymakers to centre the voices of the TNB community in service design and improvement.
KEY MESSAGES
Many TNB participants had negative experiences in primary care, attributed to a lack of healthcare provider knowledge and medical gatekeeping.
Many TNB participants desired gender-affirming healthcare services to be more primary care-led.
Primary care services should consult local TNB communities in service design, evaluation and improvement.
Introduction
Transgender (trans) is an umbrella term to describe those who go across or beyond culturally defined categories of gender [Citation1]. In European culture, or cultures with a history of European colonisation, gender is culturally defined as binary, comprising two mutually exclusive categories (man or woman), which are assigned at birth based on the observable biological sex traits of the infant [Citation2]. Individuals who have the binary gender they were assigned at birth are described as cisgender (cis man or cis woman). Trans individuals may have a binary gender different to their assigned gender at birth (trans man or trans woman), or they may not have a binary gender (nonbinary person). Trans and nonbinary (TNB) people make up a minority group and are marginalised in these cisnormative cultures [Citation1,Citation2]. Cisnormativity is the assumption that being cisgender is normal, and that individuals will generally conform to the binary gender norms of that culture in that time [Citation2].
In the United Kingdom (UK), with increased sociocultural awareness of TNB identities, primary care services are more likely to care for TNB patients. However, across healthcare services broadly, TNB people experience poorer physical and mental health outcomes compared to the cisgender population, which in part may be due to the direct and indirect effects of stigma, transphobia, and the general cultural climate of hostility towards TNB people globally [Citation3]. This is encompassed under the minority stress model, which describes increased stresses faced by marginalised people due to institutional stigma and discrimination and the impact of such on individuals’ health and well-being [Citation4].
Within primary care, TNB people commonly have adverse experiences. Examples of this include general practitioners (GP) being unwilling to provide or support TNB people in accessing gender-affirming healthcare (GAHC), such as hormone replacement therapy (HRT) and/or gender-affirming surgery [Citation5–7]. In the UK, TNB people who wish to medically transition often first try to access GAHC through their GP as part of the National Health Service (NHS) GAHC pathway [Citation8]. The GP can make a referral to the Gender Identity Clinic (GIC), where individuals are assessed by a psychiatrist for a diagnosis of gender dysphoria, which is necessary for further state-funded interventions, such as HRT [Citation8].
These pathways rely on healthcare professionals’ assessment of the patient’s gender identity. This often results in TNB individuals’ experiencing pressure to conform to cisnormative expectations of presentation and behaviour to access care [Citation6,Citation9,Citation10]. There are added difficulties for nonbinary people, as healthcare services and providers may have a binary view of gender, which contributes to nonbinary individuals feeling ‘invisible’ in navigating both trans-specific and broader healthcare services [Citation11]. These barriers impact primary care services, such as cancer screenings, where research suggests there is lower uptake by TNB people partially attributed to experiences of discrimination [Citation12].
Moreover, there are significant waiting times to access a GIC, which has a significant impact on individuals’ mental health. The UK Trans Mental Health Study found that 63% of TNB participants reported increased suicidal ideation before transitioning, which decreased to 3% after accessing GAHC [Citation10]. To avoid delays, many TNB people access GAHC through private providers instead. Associated financial stresses and the mental health impact of this may influence both TNB people’s broader health and further experiences within primary care.
To our knowledge, a systematic review of TNB people’s experiences within primary care is lacking. Existing studies have tended to examine aspects of TNB mental health [Citation6,Citation13,Citation14] or general healthcare [Citation15,Citation16]. Primary care-focused studies largely centre on TNB youth [Citation17–19]. There is a need to better understand TNB adults’ experiences of primary care, so as to inform improvement of primary care services, where a growing number of TNB people present to their GP. Within cisnormative cultures, GPs and primary care providers may experience challenges in providing or facilitating access to GAHC; however this is not the focus of this review. This review asks: What are TNB adults’ experiences of primary care globally?
Methods
A study protocol was registered at the International Prospective Register of Systematic Reviews (PROSPERO) with a Registration number CRD42022330310 and is available from (https://www.crd.york.ac.uk/PROSPERO/?msclkid=8c7ec6a6d13c11eca8a7c1709e55f422#myprospero). The systematic review follows the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines (Supplementary material) [Citation20].
Search strategy and selection criteria
A systematic search was performed to identify quantitative and qualitative studies regarding the experiences of TNB people in primary care. Keywords and Medical Subject Heading (MeSH) terms were developed and combined using (AND) and (OR) Boolean operators. The search was limited to articles from 2005 to April 2023. This was chosen for two main reasons: Prior to 2005, the Gender Recognition Act (GRA) 2004 was not enforced, which in part shaped the way primary care acted as the entry point to specialist gender identity services in the UK [Citation21]. Additionally, the development of GAHC pathways and services were generally limited globally. No limits were set on study location as this field has limited literature. Only studies written in English were screened. Data collection and screening were conducted from 30th June to 18th August 2022 by one independent reviewer and again in full between 11th and 17th April 2023 by two independent reviewers. A third reviewer resolved any disputes concerning which studies were eligible for inclusion. Three databases were used: Ovid Medline, Ovid Embase, and PsychInfo. This search was further supplemented by searching the reference lists of relevant studies.
Population search terms were: transgender OR trans OR gender non-conforming OR nonbinary OR gender diverse OR gender identity OR transsexual. Exposure-related search terms were: primary healthcare OR primary care OR general pract* OR GP OR healthcare service* OR healthcare access OR trans* inclusive. Outcome-related search term included: Experience* OR perception* OR expectation* OR marginalisation OR transphobia OR accessibility OR barrier* OR facilitator* OR attitude* OR stigma. Outcome specific search terms were kept broad to ensure the relevant literature could be screened whilst maintaining focus on capturing TNB people’s voices. The titles and abstracts were screened, removing any irrelevant and/or duplicate studies. The remaining studies were assessed for eligibility per the inclusion and exclusion criteria (). A full-text review of eligible studies was then performed.
Data extraction and synthesis
Key information was extracted and summarised to compare different study characteristics and outcomes. Thematic analysis was used to synthesise themes from the qualitative studies included in this review, following Braun and Clarke’s six-step process [Citation22]. This involves familiarising data, generating codes and searching, analysing and defining recurrent themes and patterns. Each study was read multiple times, with key themes and concepts recorded to formulate patterns between studies to group overall themes. Regarding quantitative studies, a narrative synthesis was completed whereby relevant data was compiled in a table with an accompanying narrative summary presented.
Quality assessment
The Mixed Methods Appraisal Tool (MMAT) was used to appraise the quality of the study reporting [Citation23] (). Quality appraisal was performed by two independent reviewers, both of whom had been trained in using the quality appraisal tool.
Results
The search strategy yielded 1,817 identified titles, with 1,128 titles screened for eligibility after removing duplicate studies. From these titles, 97 abstracts were screened with a full-text screening of 21 articles (). The 16 studies included are summarised in .
Ten of the studies were qualitative [Citation24–33], three were quantitative [Citation7,Citation34,Citation35], three were mixed methods designs [Citation36–38]. All studies were conducted in high-income countries and published between 2009 and 2022: the USA [Citation33,Citation35,Citation37,Citation38], the UK [Citation24,Citation27], Australia [Citation25,Citation30], Canada [Citation7,Citation29,Citation31], New Zealand [Citation26,Citation34,Citation36], France [Citation28] and Sweden [Citation32].
One study included data solely from transgender women [Citation33]. Nonbinary identities were under-represented across the studies; three studies had a majority of nonbinary participants [Citation34–36]. Participant numbers ranged from 8 to 27,715. Participant ages ranged from 14 to 83, with four studies including data from participants under the age of 18 [Citation7,Citation34,Citation36,Citation37]. Only data pertaining to TNB adults above 18 years of age were included in the analysis.
Most studies were considered to have a good or satisfactory quality appraisal level. shows the quality appraisal on included studies using the MMAT. provides a descriptive assessment as to the quality of individual studies. Cohen’s kappa coefficient was calculated based on MMAT scoring to assess the level of agreement and interrater reliability between reviewers. This was calculated as 0.61, demonstrating substantial agreement between the reviewers as to the quality of the studies.
The research aims and analysis of both qualitative and quantitative studies were clearly discussed. However, the quantitative studies were limited in discussing the quality of their data collection. The mixed methods studies were of varying quality. Of the three included studies, one failed to justify a mixed methods approach [Citation38] and two could have better integrated their quantitative and qualitative findings [Citation36,Citation37].
Study findings
Three key themes were identified; 1. Primary Care Provider Attitudes and Knowledge, 2. The Patient-Provider Relationship, and 3. Healthcare Settings. Themes 1 and 2 were discussed in thirteen studies each and theme 3 comprised of eight studies.
Primary Care Provider (PCP) attitudes and knowledge
PCP attitudes were a recurring theme across thirteen studies [Citation7,Citation24,Citation25,Citation27,Citation29–32,Citation34–38].
Upholding cisnormative views and stereotypes
Experiences of discrimination created anxiety among participants over not knowing how PCPs would respond to their gender identity (, Quotation 1). Across all study methodologies, participants (8–948) would avoid primary care services altogether, irrespective as to why they may need to be seeking healthcare (, Quotation 2) [Citation29,Citation31,Citation32,Citation34,Citation37].
Qualitative studies with 33 participants reported common experiences of participants having to alter their gender presentation to access care without being challenged (, Quotation 3) [Citation29,Citation31,Citation32].
Positive healthcare interactions were associated with increased engagement with services, better confidence in navigating other healthcare systems and significantly decreased levels of psychological distress [Citation34,Citation37].
PCP knowledge and attitude
Lack of PCP knowledge was a major theme [Citation7,Citation24,Citation25,Citation27,Citation29–32,Citation34–38], reported between 28 and 54.4% of participants across quantitative studies, which ranged from 433 to 27,715 participants [Citation7,Citation34,Citation35]. One quantitative study (n = 27,715) found that nonbinary people generally perceived their PCP as being ‘less knowledgeable’ not just about TNB identities and trans-specific healthcare needs but also how changing social and political climates negatively impact on TNB people’s health [Citation35].
Across multiple studies, with 28,851 participants, TNB people had low confidence in PCPs and perceived themselves as not being involved in healthcare discussions and shared decision-making [Citation35–37]. Due to a lack of general PCP knowledge regarding trans-specific healthcare, many TNB participants were often forced into the role of patient educator. Participants ranged from 11 to 1024 across multiple studies reported being the primary source of information for their PCP regarding GAHC [Citation24,Citation25,Citation27,Citation29–31,Citation36], often compiling information through peer networks and online sources in a process described as ‘exhausting emotionally’ [Citation29]. Some perceived the lack of proactive learning as unprofessional and as an unwillingness to learn. Studies with a total of 987 participants recalled being asked invasive questions irrelevant to their healthcare, perceived as being largely due to the PCP’s curiosity, to the detriment of the participants’ health and personal boundaries [Citation25,Citation27,Citation31,Citation34]. The incidences of participants being asked inappropriate questions were also seen as a way of PCPs exerting power as participants often felt forced to answer (, Quotation 4) [Citation25,Citation27]. Limited knowledge regarding GAHC pathways leading to referral delays was frustrating, especially to older TNB participants who expressed anxiety about ‘losing time’ [Citation27].
Positive experiences within primary care centred around having a proactive GP with an awareness of TNB specific and inclusive healthcare needs [Citation24,Citation25,Citation27,Citation30]. One study of 433 participants found having a knowledgeable PCP was associated with up to 63% decrease in levels of discomfort [Citation7]. Another quantitative study showed participants (n = 948) who had a supportive, knowledgeable PCP were less likely to have attempted suicide over 12 months [Citation34].
The patient – provider relationship
Topics relating to the patient-provider relationship came up across thirteen studies [Citation7,Citation24–31,Citation33,Citation36–38].
Perceived affirmation or rejection of participants’ gender identity
How well participants viewed their care was highly dependent on the extent to which their gender identity was affirmed or rejected. The most common rejection perceived by participants was through misgendering or deadnaming (referring to a TNB person by a name they used prior to transitioning) [Citation27,Citation29,Citation33,Citation37]. This includes a failure to update medical documentation, which further contributed to the issue of healthcare avoidance [Citation25,Citation27,Citation31,Citation32].
Positive examples of gender affirmation included PCPs being non-judgmental, using the correct name and pronouns and adapting the language they used for each patient, acknowledging them as an expert in their own self (, Quotation 5) [Citation24,Citation29,Citation30,Citation33,Citation37,Citation38].
Ongoing support and gaps in medical research
Largely qualitative studies, with a total of 1,090 participants, reported a lack of ongoing support from their GP at various points: when on waiting lists for GAHC; following gender-affirming treatment; and when accessing specific healthcare services associated with gendered anatomy, for example, reproductive cancer screenings [Citation25–28,Citation36]. This extended to a general perception within one qualitative study (n = 928) that medical research was neglectful of TNB populations (, Quotation 6) [Citation30]. Specifically, 27% of participants expressed there was not enough research on the long-term effects of HRT and almost 19% of participants wanted further research into improving gender-affirming surgical techniques [Citation30].
Healthcare Settings
Healthcare settings were a theme across eight studies [Citation25,Citation28,Citation29,Citation31–33,Citation37,Citation38].
The physical environment
Participants across qualitative studies, ranging from 8 to 27, said that a welcoming physical environment was an important facilitator to seeking out primary care services. This included having visible posters or signs that could indicate safe spaces to TNB people (, Quotations 7–8) [Citation25,Citation28,Citation29,Citation31].
The waiting area was a key source of anxiety, primarily due to the perceived lack of privacy and fear of uncertainty as to whether participants would be misgendered by reception staff in front of others [Citation28,Citation29,Citation31,Citation32,Citation37]. This was exacerbated for participants in rural areas or who were more socioeconomically disadvantaged; participants would travel significant distances to attend a specific primary care centre to avoid these stresses [Citation28,Citation36].
Desire for more primary care led services
Multiple studies, spanning five countries, with 87 participants, expressed a desire from TNB people for more primary care-led services providing GAHC, particularly HRT [Citation26–29,Citation38]. Primary care was viewed as more holistic and accessible, with less waiting time and reduced financial and travel costs. Participants from qualitative studies, ranging from 8 to 22, felt better able to make informed health choices due to alleviating additional logistical stresses [Citation26,Citation38]. Integrating services within primary care was suggested as a method of increasing patient autonomy, service accessibility and reducing medical gatekeeping (, Quotations 9–10) [Citation26–29,Citation38].
Expectations of primary care services
Three studies explored expectations of ideal care. Participants ranged from 27 to 928, and most participants wanted, at minimum, their PCP to have basic knowledge around different TNB identities, how to initiate HRT and how to access further resources [Citation28–30]. One study detailed a desire by participants for practices to employ TNB people as advisors or educators to help inform practice policy and care delivery [Citation30]. Ideal care centred around principles of self-determination, where TNB people could access GAHC and legal documentation without the need for psychiatric assessment (, Quotations 11–12) [Citation28].
Discussion
Main findings
Findings from this review suggest that TNB people in high-income countries face insufficiently trained providers and discrimination when utilising primary care services. Primary care was perceived negatively on a systemic level, with some participants having more positive experiences on account of individual PCPs or clinics. Positive healthcare interactions were associated with increased engagement with healthcare services and reduced rates of psychological distress amongst TNB individuals. PCPs could provide better support through advocating on behalf of TNB patients, having more communication with their local TNB community and seeking access to guidelines and ongoing research. In addition, support should be provided directly to TNB patients through all stages of GAHC provision. There was a generalised desire for more primary care-led services to initiate and follow-up on gender-affirming treatments, as well as having more TNB representatives working in clinics.
Comparison with existing literature
Cisnormativity at a societal and interpersonal level isolates TNB people, especially if they are marginalised in multiple ways, for example, being TNB and also disabled, neurodivergent, working class or a person of colour. Conforming to gendered stereotypes to be validated by primarily cisgender PCPs creates a culture of uncertainty, fear, and exhaustion in navigating primary care spaces. This is corroborated by previous research exploring barriers to healthcare access for TNB people, suggesting a high prevalence of negative healthcare encounters across services [Citation6,Citation16,Citation39]. Participants who had had positive encounters were often surprised, speaking to the generalised negative perception of primary care, adding to the issue of healthcare avoidance based on lived, or anticipated, discrimination.
On an individual level, regarding GAHC, PCPs could provide further support for TNB people, for example, through prescribing bridging HRT, as detailed in guidelines developed by the UK Royal College of Psychiatrists [Citation40]. However, in practice, participants requesting this were often refused by PCPs on personal grounds or due to lack of knowledge. Research exploring PCP perspectives on TNB healthcare further demonstrates a lack of knowledge and confidence on a structural, educational, and cultural level [Citation5,Citation41]. This extends to consultations unrelated to accessing GAHC, such as knowledge around cancer screening and monitoring of physical health conditions. Changes to medical school curricula to include TNB healthcare needs have been shown to improve clinical knowledge and attitudes towards TNB patients [Citation42].
In the UK, this would require structural changes that redefine the role of primary care in trans-specific healthcare delivery. There is precedent for such change; the Republic of Ireland adopted a de-medicalised self-declarative system for gender recognition in 2015 [Citation43]. Moreover, the World Health Organisation declassified being transgender as a mental or behavioural disorder in 2019, signifying a global change in the way being TNB is perceived [Citation1]. Arguably, the reliance on psychiatric assessment in the UK perpetuates outdated assumptions that being TNB is a mental illness. However, changes to UK policy following consultation with over 100,000 respondents were halted, widely criticised by charities such as Stonewall and Mermaids [Citation44,Citation45].
Strengths and limitations
To our knowledge, this is the first systematic review focusing on TNB people’s experiences of primary care. Many participants in the included studies were white and/or transgender men or women, with fewer nonbinary participants. There was limited focus on the intersection between different identities and how they influenced experiences of primary care.
For this review, there were challenges in defining primary care globally across different healthcare services; therefore the inclusion criteria were kept broad to ensure as much data was collected that was still within the remit of our research question. Two reviewers conducted the data collection and quality appraisal but only one reviewer completed the data synthesis, so there may be bias on the interpretation of findings.
Most studies were qualitative, from high-income countries; therefore there may not be sufficient data to generalise these findings.
Implications for clinicians
The evidence from this review highlights both positive and negative experiences within primary care and where changes can be implemented.
PCPs can advocate for reform on a local and structural level in restructuring health policy, practice policy and medical education. International frameworks that may be useful include guidance published by the World Professional Association for Transgender Health and the Equality Challenge Unit, which outlines an overview of equality legislation, promoting TNB inclusive policies (including identifying documentation) and guidelines on cultivating a safe inclusive environment, which could be adapted for primary care settings in and outside of the UK [Citation1,Citation46]. It may be challenging within cisnormative cultures for PCPs to navigate and implement change in training programmes and medical practice. Local TNB communities or charities should be consulted in increasing accessibility and in the co-development of practice policy.
Areas for future research
Recommendations implemented to improve gender-affirming primary care services can be evaluated, to add to the evidence available exploring TNB people’s experiences of primary care. There needs to be an extended effort to include the voices of nonbinary people and TNB people of colour that utilises an intersectional framework and to explore the experiences of TNB people of other demographics. There needs to be research as to facilitators and barriers for PCPs in providing and supporting access to GAHC to add to the evidence of how to implement structural change effectively. Future research should employ quantitative or mixed method designs to gather more objective data to strengthen the findings of existing qualitative research. It would be useful to evaluate existing or future pilots integrating primary care with GAHC provision and its impact on positive health outcomes.
Conclusion
TNB people reported mixed experiences of primary care encounters. On a systemic level, there was a generally negative perception of primary care based on TNB people’s experiences navigating healthcare systems across high-income contexts. However, positive healthcare encounters and engagement with services were reported on a local level. There were variations in the consistency and quality of care and in navigating expectations of cisnormative PCPs and inaccessible healthcare systems. Multifaceted interventions that incorporate increasing PCP education and address areas such as improving the physical environment should be undertaken.
Challenges remain in reducing medical gatekeeping due to the continued pathologising of TNB identities. As such, there should be continued efforts to advocate for a reform to the GRA and the way GAHC is accessed in the UK.
Supplemental Material
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The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.
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The data underlying this article are available from the corresponding author on reasonable request.
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