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In May 2022, a global outbreak of mpox (formerly monkeypox virus) affected thousands of mainly gay and bisexual men. Mpox is usually a time-limited illness that can involve fever, pain, and skin lesions, but may require hospitalisation. There is scant research into the firsthand experiences of people affected by mpox, including experiences of symptoms, healthcare, and recovery. This study considers the different illness narratives of people who experienced mpox in Australia in 2022. In-depth interviews and 6-month follow-up interviews were conducted with 16 people, including 13 people diagnosed with mpox and three close contacts. All participants were cisgender gay or bisexual men living in Australia. Participants' accounts described minor to severe periods of sickness, negative and stigmatising experiences engaging with healthcare, and some participants experienced long-term effects on their sexual well-being and complications from mpox. The emergency outbreak context meant that mpox was highly distressing, making it difficult to manage and producing varying forms of disruption to everyday life. Mpox was narrated as disruptive in different ways: as a minor interruption to holiday plans, a prolonged period of poor health, or a biographically disruptive event prompting a re-evaluation of sexual values and health. This analysis demonstrates that an unfamiliar emergent disease outbreak related to sexual practices and sociality can reconfigure personal life and sexual well-being, suggesting a need to focus on providing quality patient care in outbreaks of mpox and other infectious diseases.
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BACKGROUND: In the context of a syphilis outbreak in neighboring states, a multifaceted systems change to increase testing for sexually transmitted infections (STIs) among young Aboriginal people aged 15 to 29 years was implemented at an Aboriginal Community Controlled Health Service (ACCHS) in New South Wales, Australia. The components included electronic medical record prompts and automated pathology test sets to increase STI testing in annual routine health assessments, the credentialing of nurses and Aboriginal health practitioners to conduct STI tests independently, pathology request forms presigned by a physician, and improved data reporting. OBJECTIVE: We aimed to determine whether the systems change increased the integration of STI testing into routine health assessments by clinicians between April 2019 and March 2020, the inclusion of syphilis tests in STI testing, and STI testing uptake overall. We also explored the understandings of factors contributing to the acceptability and normalization of the systems change among staff. METHODS: We used a mixed methods design to evaluate the effectiveness and acceptability of the systems change implemented in 2019. We calculated the annual proportion of health assessments that included tests for chlamydia, gonorrhea, and syphilis, as well as an internal control (blood glucose level). We conducted an interrupted time series analysis of quarterly proportions 24 months before and 12 months after the systems change and in-depth semistructured interviews with ACCHS staff using normalization process theory. RESULTS: Among 2461 patients, the annual proportion of health assessments that included any STI test increased from 16% (38/237) in the first year of the study period to 42.9% (94/219) after the implementation of the systems change. There was an immediate and large increase when the systems change occurred (coefficient=0.22; P=.003) with no decline for 12 months thereafter. The increase was greater for male individuals, with no change for the internal control. Qualitative data indicated that nurse- and Aboriginal health practitioner-led testing and presigned pathology forms proved more difficult to normalize than electronic prompts and shortcuts. The interviews identified that staff understood the modifications to have encouraged cultural change around the role of sexual health care in routine practice. CONCLUSIONS: This study provides evidence for the first time that optimizing health assessments electronically is an effective and acceptable strategy to increase and sustain clinician integration and the completeness of STI testing among young Aboriginal people attending an ACCHS. Future strategies should focus on increasing the uptake of health assessments and promote whole-of-service engagement and accountability.
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BACKGROUND: Although there is a presumption that LGBTQ+ people living in rural Australia will have poorer health outcomes than those living in metropolitan areas, minimal research has focused specifically on the perspectives of transgender and gender diverse (henceforth referred to as 'trans') people living in these regions. The purpose of this study was to understand what health and wellbeing means to trans people in a regional or rural community and identify their health needs and experiences. METHODS: A total of 21 trans people were recruited through two regional sexual health centres (SHC) and interviewed between April and August 2021. Data were analysed via reflexive thematic analysis. This paper focuses on participants' accounts of health and wellbeing regarding gender affirmation, the experience of rural living, respectful holistic care, safety in rural communities, isolation, loneliness, and employment. RESULTS: The experience of living rurally can have both positive and negative impacts on the experiences of trans people. Participants reported experiences of stigma and discrimination, reduced employment opportunities and limited social interactions, which led to feelings of isolation and loneliness; however, they also reported high quality of care, particularly with the specific SHCs which supported this research. CONCLUSION: Living rurally can impact both positively and negatively on the health and wellbeing of trans peoples, and the experiences of living in this environment are diverse. Our findings challenge the perception that rural trans people experience only poor health outcomes and shows the difference that key health services such as SHCs can make in supporting trans health.
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Salud Sexual , Personas Transgénero , Humanos , Australia , Atención a la Salud , Investigación CualitativaRESUMEN
Aboriginal and Torres Strait Islander (Aboriginal) young people seek information and access health services for their sexual health needs. This study examined Aboriginal young people's perspectives on sexual health services and sex education in Australia. Overall, 51 Aboriginal people aged 16-26 years were interviewed by peer researchers in Sydney, Australia in 2019-2020. The findings suggest that the internet was used to assess information quickly and confidentially, but Aboriginal young people questioned its reliability and accuracy. Family, Elders and peers were seen as sources of advice because they had real-life experience and highlighted intergenerational learning that occurs in Aboriginal communities. School-based sex education programmes had mixed reviews, with a preference for programmes delivered by external specialists providing anonymity, clear and accurate information about sex and relationships and positive approaches to sex education, including how to gain consent before sex. There was a need identified for school-based programmes to better consider the needs of Aboriginal young people, including those who identified as LGBTQI + . Aboriginal Medical Services were highly valued for providing culturally safe access to services, while sexual health clinics were valued for providing specialised confidential clinical services with low levels of judgement.
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Aborigenas Australianos e Isleños del Estrecho de Torres , Educación Sexual , Adolescente , Humanos , Australia , Atención a la Salud , Reproducibilidad de los ResultadosRESUMEN
My Health Record is Australia's national, digital, personal health record system. All Australians have a record in the system unless they choose to opt out of it. Concerns about privacy, security and unwanted sharing of data, particularly in marginalised populations, may impede its use. We conducted a national, online survey of Australians' attitudes to digital health in April-June 2020. The sample (N = 2,240) was recruited from the general population and four priority populations affected by HIV and other sexually transmissible infections: gay and bisexual men, people living with HIV, sex workers, and trans and gender diverse people. This analysis assesses factors associated with greater knowledge of My Health Record and the likelihood of opting out of the system. Due to increased concerns about data privacy and misuse, we hypothesised that priority population members would know more about and be more likely to opt out of the system. We found that most of the sample (71.2%) knew little about My Health Record and 29.4% had opted out of the system. Greater knowledge of My Health Record was associated with younger age, having a university degree, having one or more health conditions, and being trans or gender diverse. Being a student, unemployed, receiving government benefits, or having poor self-reported health, were associated with less knowledge. Opting out of My Health Record was associated with having a university degree, one or more health conditions, and being a priority population member. The likelihood of opting out was lower among people born overseas, residents of Queensland, and people who were students, unemployed, or receiving government benefits. We recommend additional investment in community-based education to address people's concerns about My Health Record and support people to use the system without compromising their health care, privacy, or security. Opting out may be a legitimate choice for people who perceive more risks than benefits from the system.
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Introduction: In 2018, following government policy changes to Australia's national electronic health record system, 'My Health Record', consumer advocates-including organisations representing people living with HIV, people who use drugs and sex workers-raised concerns about privacy and data security. Responding to these controversies, this study explores the practical, ethical and political complexities of engaging stigmatised communities with digital health systems. Methods: We conducted 16 qualitative semi-structured interviews in 2020 with key informants representing communities who experience stigma, discrimination and marginalisation in Australia. These communities included people living with HIV, sex workers, people who inject drugs, gay and bisexual men and transgender and gender diverse people. We conducted a reflexive thematic analysis. Results: Key informants were sceptical of proposed benefits of electronic health records for their communities, and concerned about privacy risks and the potential for discrimination. Meaningful consultation, consent mechanisms and tackling structural stigma were raised as solutions for engaging communities. Conclusions: Although communities could benefit from being included in digital health systems, significant cultural, legal and social reforms from government were believed to be necessary to build trust in digital health systems. We argue that these forms of data justice are necessary for effective future systems. Policy Implications: Engaging stigmatised communities-including in relation to gender, sexuality, sex work, drug use, HIV-requires a commitment to data justice. The design and implementation of digital health systems requires investment in ongoing and meaningful consultation with communities and representative organisations.
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In Australia, the response to HIV, hepatitis C and hepatitis B has largely been through the constructed category of 'blood borne viruses' which treats these viruses as an interconnected set of conditions with respect to their mode of transmission. In this paper, we explore how people understand their viral infection, and compare the logics underpinning these different understandings. In-depth interviews were conducted with 61 participants who were either living with a blood borne virus or were the family members of people living with them. Our analysis reveals that the viral infection was often described as 'just a condition that needs to be managed', albeit in potentially exhausting ways. This understanding hinged upon a biomedical logic in which viral invasion was seen as causing illness and in turn necessitating biomedical intervention. In contrast, some participants with hepatitis B presented their infection as a condition unintelligible through Western biomedical logics, defined instead by symptomology - in terms of 'liver disease', and/or 'liver inflammation'. This focus on symptomology calls into question the soundness of prevention and management responses to hepatitis B based in biomedical logics and reveals the extent to which living with a virus involves multiple, sometimes incompatible, cultural logics. The different logics underpinning HIV, hepatitis C and hepatitis B reveal shortcomings of framing these viruses together as a coherent single construct.
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Infecciones por VIH , Hepatitis B , Hepatitis C , Automanejo , Virosis , Humanos , Hepatitis C/terapia , Hepatitis B/prevención & control , LógicaRESUMEN
A virus has a social history. In the case of the hepatitis C virus (HCV) and HIV, this history is one involving stigma and discrimination, advocacy and activism, and recent dramatic improvements in treatment. These social histories influence the experience of people who live with the viruses, and those who work with them. One aspect of this is the impact of social changes on the biographical disruption and integration brought about by illness. Healthcare practitioners who see significant improvements in the effectiveness of treatment for a condition over the course of their professional life will incorporate those changes into their own history and their relationship to that condition.This article is based on a study of the experiences of serodiscordance, or mixed infection status, in families living with HIV and two types of viral hepatitis, hepatitis B and hepatitis C. The article explores the perspectives of healthcare workers who work with people affected by these viruses, who were asked about their experiences in working with serodiscordance in families. Interviews revealed that changing social meanings given to bloodborne viruses, and changes to treatment over time, held a significant place in the accounts that service providers gave of their work. In asking them to describe their work with HIV and HCV, we were also asking about work that has been shaped by changing patterns and sources of stigma, and recently reshaped by changes in treatment and outcomes. While typically the experiences of patients and their families are used to investigate the social histories of diagnosis and stigma, the professional perspectives and life stories of the service providers who work with them are also revealing. We heard accounts in which histories as well as current regimes were prominent, illuminated further by insights from the sociology of health on narrative and biographical disruption.
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Infecciones por VIH , Hepatitis C , Humanos , Hepacivirus , Estigma SocialRESUMEN
In recognition of the broader relational aspects of viral infections, family support is considered important when someone is diagnosed with a blood-borne virus (BBV), such as HIV, hepatitis C (HCV) and hepatitis B (HBV). However, families' own support needs are often not a priority in service provision within the BBV sector. In this article, we draw on qualitative interviews with 20 key informants working in various professional capacities in health, social policy, care and advocacy sectors in Australia, and explore their experiences and perspectives on family inclusivity in their services. Overall, key informants acknowledged the diversity of what constitutes family, and consistently viewed family engagement as beneficial to both diagnosed individuals and the wider familial networks affected by a diagnosis. However, prioritising individual care in support services presented barriers to engaging families, which are further complicated by the role of stigma in shaping the social realities of living with a BBV. Increasing understanding in service provision settings that serodiscordance can be a family experience has the potential to widen this analytic lens to consider the support needs of families in their own right.
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Hepatitis B , Hepatitis C , Virosis , Humanos , Hepatitis C/prevención & control , Hepatitis C/diagnóstico , Hepatitis B/prevención & control , Hepatitis B/diagnóstico , Virosis/prevención & control , Hepacivirus , Estigma SocialRESUMEN
Translated questionnaires are increasingly used in population health research. Nevertheless, translation is often not conducted with the same rigour as the process of survey development in the original language. This has serious limitations and may introduce bias in question relevance and meaning. This article describes and reflects on the process of translating a large and complex sexual and reproductive health survey from English into Simplified Chinese. We interrogated assumptions embedded in taken-for-granted translation practice to locate the sociocultural origins of these assumptions. We discuss how terminology and expression related to sexual and reproductive health may lose their conceptual or linguistic significance during translation in three different ways. Firstly, meanings can be lost in the negotiation of meanings associated with linguacultural and geographical variations of terminology. Secondly, meanings can be lost in the clash between everyday and professional sexual and reproductive health discourses. Thirdly, meanings can be lost due to the design of the source questionnaire and the intended mode of survey administration. We discuss ways to help overcome the unavoidable translation challenges that arise in the process of translating English sexual and reproductive health surveys for migrants from non-English speaking backgrounds.
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Lenguaje , Salud Reproductiva , Humanos , Lingüística , Traducción , Encuestas y CuestionariosRESUMEN
Sociological scholarship has begun to explore imaginaries of family and reproduction, yet less work has focused on the emerging social form of the donor family. In this article, we consider the embodied sociotechnical imaginaries of donor-conceived people, exploring their reflections, judgements, hopes, and predictions regarding donor conception. Combining reflexive thematic analysis of free-text survey responses from sperm donor-conceived (n = 90) and egg donor-conceived (n = 1) and data from semi-structured interviews with sperm donor-conceived people (n = 28), conceived in both clinical and non-clinical contexts in Australia, we analyse donor-conceived people's imaginings of family, identity, and the practice of donor conception in the digital age. Our analysis centres the donor-conceived body that imagines, and in doing so, highlights the entanglements of reproductive and digital technologies, and the humans and institutions that drive their uptake. We argue that leveraging the imaginative and political capacities of donor-conceived people is a productive approach that illuminates possible (re)directions of the assisted reproduction industry as well as illustrating potential policy futures.
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Stigma in health services undermines diagnosis, treatment and successful health outcomes for all communities, but especially for those affected by blood-borne viruses and sexually transmitted infections (STIs). This study sought to examine experiences in accessing and receiving health services, including what characteristics promoted better health, safety and well-being for people with blood-borne viruses or STIss. It conducted 46 in-depth interviews with people who inject drugs, gay men and other men who have sex with men, sex workers, people in custodial settings, culturally and linguistically diverse people, Indigenous Australians and young people in one Australian urban community setting. Findings reveal that stigma persists in the provision of healthcare services, and that previous experiences of discrimination or fear of mistreatment may result in a reluctance to continue to access services. On-going staff training and education are important to ensure healthcare environments are welcoming and inclusive. Specialised services and services that employed peers were seen as favourable. Attending different services for different health needs created particular access challenges and undermined participant ability to engage in more holistic healthcare. The fragmented structure of health services was thus seen as a barrier to accessing health services, and stronger collaboration between health services is recommended.
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Homosexualidad Masculina , Minorías Sexuales y de Género , Masculino , Humanos , Adolescente , Australia , Investigación Cualitativa , Servicios de Salud Comunitaria , Accesibilidad a los Servicios de SaludRESUMEN
BACKGROUND: The sexual and reproductive health care of people with HIV and those at risk of HIV has largely been delivered face-to-face in Australia. These services adapted to the coronavirus disease 2019 (COVID-19) pandemic with a commitment to continued care despite major impacts on existing models and processes. Limited attention has been paid to understanding the perspectives of the sexual and reproductive health care workforce in the research on COVID-19 adaptations. METHODS: Semi-structured interviews were conducted between June and September 2021 with 15 key informants representing a diverse range of service settings and professional roles in the Australian sexual and reproductive health sector. Inductive themes were generated through a process of reflexive thematic analysis, informed by our deductive interest in clinical adaptations. RESULTS: The major adaptations were: triage (rapidly adapting service models to protect the most essential forms of care); teamwork (working together to overcome ongoing threats to service quality and staff wellbeing), and the intwined themes of telehealth and trust (remaining connected to marginalised communities through remote care). Despite impacts on care models and client relationships, there were sustained benefits from the scaleup of remote care, and attention to service safety, teamwork and communication. CONCLUSIONS: Attending to the experiences of those who worked at the frontline of the COVID-19 response provides essential insights to inform sustained, meaningful system reform over time. The coming years will provide important evidence of longer-term impacts of COVID-19 interruptions on both the users and providers of sexual and reproductive health services.
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COVID-19 , Infecciones por VIH , Humanos , Pandemias , Salud Reproductiva , AustraliaRESUMEN
CONTEXT: Compared with the general population in Australia, men-who-have-sex-with-men (MSM) have higher rates of HIV and sexually transmissible infections (STIs). Despite widespread advice to test regularly, a minority of these men remain "hard to reach." We undertook qualitative interviews with a group of such men in Sydney to better understand their views and experiences in relation to sexual health screening. METHODS: We conducted semi-structured interviews with men engaging with HIV/STI screening services at a sex-on-premises-venue and the local Sexual Health Service in Greater Western Sydney. We analyzed these data for content and themes. RESULTS: Sexual behaviors and identities were diverse, often discordant and compartmentalized from everyday lives. Overall, reported HIV/STI knowledge was poor and men did not see themselves at risk of HIV/STIs regardless of sexual behavior. Men took calculated risks and balanced with pleasure and escapism. Reasons for avoidance of testing included fear, unwillingness to disclose behavior, privacy concerns, and perceived low risk. Men viewed sexual health care as distinct from general health care. Service delivery preferences varied by service venue. Participants highlighted convenience, confidentiality, and trust as critical factors for a testing service. CONCLUSION: A variety of testing options are needed to engage hard-to-reach MSM. Opportunities to enhance testing may include expanding health messaging, demystifying testing, and delinking sexual identity from sexual behavior and risk, thus promoting advantages of testing and establishing testing as standard of care.
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Infecciones por VIH , Salud Sexual , Minorías Sexuales y de Género , Enfermedades de Transmisión Sexual , Australia , Infecciones por VIH/diagnóstico , Infecciones por VIH/epidemiología , Homosexualidad Masculina , Humanos , Masculino , Tamizaje Masivo , Conducta Sexual , Enfermedades de Transmisión Sexual/prevención & controlRESUMEN
INTRODUCTION: Aboriginal and Torres Strait Islander (Aboriginal) people compared with non-Aboriginal people in Australia have higher rates of chronic conditions. These conditions increase the risk of poorer health outcomes if infected with COVID-19, highlighting the importance of COVID-19 vaccination. This study examined what Aboriginal people think about COVID-19 vaccines, reasons why they were vaccinated or not vaccinated and factors involved in receiving COVID-19 vaccination. METHODS: We used a participatory peer researcher method to interview 35 Aboriginal people aged 15-80 years living in Western Sydney, Australia. Local Aboriginal people who had ties with the community conducted the interviews. The questions and analyses were framed using the WHO's Behavioural and Social Drivers of COVID-19 model. Interviews occurred between February 2021 and March 2021. Peer researchers were paid for their time in training and to conduct the interviews and each participant received $50. RESULTS: Reasons why participants would seek vaccination included: to protect themselves from infection and severe illness, to protect others in their community, to travel again and to return to 'normal life'. Reasons why some participants were hesitant about being vaccinated included: fear of vaccine side effects; negative stories on social media; and distrust in Australian governments and medical institutions. Aboriginal people preferred to access COVID-19 vaccination through their local Aboriginal Health Service or a general practitioner they already knew. CONCLUSION: Achieving high vaccination rates in Aboriginal communities is possible if vaccination programmes are delivered through trusted general practitioners or Aboriginal Health Services.
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COVID-19 , Servicios de Salud del Indígena , Australia , COVID-19/prevención & control , Vacunas contra la COVID-19 , Humanos , Motivación , Nativos de Hawái y Otras Islas del Pacífico , VacunaciónRESUMEN
New medicines can transform routines and priorities in clinical practice, but how do clinicians think and feel about these changes, and how does it affect their work? In Australia, the HIV prevention regimen pre-exposure prophylaxis (PrEP) has been rapidly rolled out, transforming the sexual cultures and practices of users, but less attention has been given to the ways PrEP has reconfigured clinical practice. This paper draws on 28 qualitative semi-structured interviews conducted between 2019 and 2020 with PrEP-providing doctors and nurses in Australia to consider how they have affectively engaged with PrEP and put it into practice. Through a reflexive thematic analysis, we explore how clinicians adapted to PrEP, how the field of HIV prevention has been transformed, and how these developments have changed how clinicians approach patients. While the introduction of PrEP was initially received with uncertainty and shock, clinicians described PrEP as enjoyable to prescribe, and better aligned with the moral duties of sexual health consultations than existing HIV prevention strategies like condoms. Through approaching clinical work as an 'affective practice', we argue for attending not only to how new interventions change expectations and practices, but also how these changes are felt and valued by clinicians.
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Síndrome de Inmunodeficiencia Adquirida , Fármacos Anti-VIH , Infecciones por VIH , Profilaxis Pre-Exposición , Salud Sexual , Fármacos Anti-VIH/uso terapéutico , Infecciones por VIH/tratamiento farmacológico , Infecciones por VIH/prevención & control , Homosexualidad Masculina/psicología , Humanos , Masculino , Derivación y Consulta , Conducta SexualRESUMEN
OBJECTIVES: This paper examines factors that enabled successful integration of testing for sexually transmissible infections into routine care in Aboriginal Community Controlled Health Services. METHODS: This paper reports analysis of qualitative interview data recorded with 19 purposively sampled key informants in New South Wales, Australia, representing six Aboriginal Community Controlled Health Services and five government health bodies supporting those services. The analysis explicitly adopted a strengths-based approach. RESULTS: Participants reported a strong belief that routine screening overcomes shame and increases engagement with sexual health screening. Incorporating sexual health screening into general medical consultations increases the capture of asymptomatic cases. The Medicare Benefits Schedule 715 Adult Health Check was highlighted as an ideal lever for effective integration into routine care. CONCLUSION: Integration of testing for sexually transmissible infections into routine care is widely perceived as best practice by senior stakeholders in Aboriginal healthcare in NSW. Findings support continued work to optimise the MBS 715 as a lever to increase testing. IMPLICATIONS FOR PUBLIC HEALTH: Identifying accessible strategies to increase testing for sexually transmissible infections in Aboriginal Community Controlled Health Services can reduce disparities in notifications affecting Aboriginal young people.
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Servicios de Salud del Indígena , Salud Sexual , Enfermedades de Transmisión Sexual , Adolescente , Adulto , Anciano , Humanos , Programas Nacionales de Salud , Nativos de Hawái y Otras Islas del Pacífico , Atención Primaria de Salud , Enfermedades de Transmisión Sexual/diagnóstico , Enfermedades de Transmisión Sexual/prevención & controlRESUMEN
Trans and gender diverse people are globally recognised as being under-served in clinical services, with significant implications for their health. During a national reorientation of the Australian cervical screening programme - from Papanicolaou smears to human papillomavirus screening - we conducted interviews with 12 key informants in cancer policy, sexual and reproductive health and trans health advocacy to understand how trans people's needs and experiences were being accounted for and addressed in health policy and practice. Themes captured the complexities of increasing visibility for trans people, including men and non-binary people with a cervix. These complexities reflect the extensive system and cultural change required in asking policymakers and practitioners to think differently about who is at risk of a disease typically associated with cisgender women. Informants drew on the language of trauma to explain the resistance many trans people feel when engaging with clinical services, particularly relating to sexual and reproductive health. In doing so, they argued for increasing resources and processes to elicit trans people's willingness to put their trust in such services. Thinking critically about the relationship between the politics of trans visibilities, trauma and trust can support effective and inclusive approaches to transgender health.