Policies on the collection, analysis, and reporting of sex and gender in Australian health and medical research: a mixed methods study.

OBJECTIVE: To explore the policies of key organisations in Australian health and medical research on defining, collecting, analysing, and reporting data on sex and gender, and to identify barriers to and facilitators of developing and implementing such policies. STUDY DESIGN: Mixed methods study: online planning forum; survey of organisations in Australian health and medical research, and internet search for policies defining, collecting, analysing, and reporting data by sex and gender in health and medical research. SETTING, PARTICIPANTS: Australia, 19 May 2021 (planning forum) to 12 December 2022 (final internet search). MAIN OUTCOME MEASURES: Relevant webpages and documents classified as dedicated organisation-specific sex and gender policies; policies, guidelines, or statements with broader aims, but including content that met the definition of a sex and gender policy; and references to external policies. RESULTS: The online planning forum identified 65 relevant organisations in Australian health and medical research; twenty participated in the policy survey. Seven organisations reported at least one relevant policy, and six had plans to develop or implement such policies during the following two years. Barriers to and facilitators of policy development and implementation were identified in the areas of leadership, language and definitions, and knowledge skills and training. The internet search found that 57 of the 65 organisations had some form of sex and gender policy, including all ten peer-reviewed journals and five of ten research funders; twelve organisations, including eight peak body organisations, had published dedicated sex and gender policies on their websites. CONCLUSION: Most of the organisations included in our study had policies regarding the integration of sex and gender in health and medical research. The implementation and evaluation of these policies is necessary to ensure that consideration of sex and gender is adequate during all stages of the research process.

Mpox Illness Narratives: Stigmatising Care and Recovery During and After an Emergency Outbreak.

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.

Logics of control and self-management in narratives of people living with HIV, hepatitis C and hepatitis B.

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.

Is sex lost in translation? Linguistic and conceptual issues in the translation of sexual and reproductive health surveys.

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.

Understanding the health care needs of transgender and gender diverse people engaging with rural Australian sexual health centres: a qualitative interview study.

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.

The freighted social histories of HIV and hepatitis C: exploring service providers' perspectives on stigma in the current epidemics.

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.

Prescribing as affective clinical practice: Transformations in sexual health consultations through HIV pre-exposure prophylaxis.

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.

Clinician imaginaries of HIV PrEP users in and beyond the gay community in Australia.

Through the development and implementation of HIV pre-exposure prophylaxis (PrEP), the characteristics of PrEP users have been configured in a range of ways. Drawing on the concept of 'imaginaries', we consider how clinicians imagine PrEP users and related communities. We conducted 28 semi-structured interviews in 2019-2020 with PrEP-providing clinicians based in New South Wales and Western Australia. Participants included general practitioners, sexual health nurses and sexual health doctors. We inductively developed three themes through a reflexive thematic analysis: 'PrEP users as 99% gay men/MSM', 'The informed and connected PrEP user', and 'Condom users in the PrEP era'. Participants imagined PrEP users primarily as gay men, and so we focused on how gay community was imagined in relation to PrEP users. Users were imagined as supporting one another to use PrEP effectively, but some were imagined as threatening norms of condom use amongst gay community. Analysing clinician imaginaries of PrEP users reveals insight into how clinicians speculate about and engage with changing community norms related to condom use and accessing PrEP. These imaginaries reveal ongoing tensions about who is believed to be best suited to PrEP, and PrEP's impact on norms of conduct in imagined biosocial communities like gay men.

Navigating trans visibilities, trauma and trust in a new cervical screening clinic.

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.

Sustaining sexual and reproductive health through COVID-19 pandemic restrictions: qualitative interviews with Australian clinicians.

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.

Family imaginaries in the disclosure of a blood-borne virus.

Contemporary sociological work has emphasised that family is not static, but actively shaped by ideas of who and what makes family. Disclosure of an illness, including diagnosis of stigmatised infections such as HIV, hepatitis B virus and hepatitis C virus, can change the dynamics of family relationships. This paper draws on 61 qualitative semi-structured interviews conducted between 2017 and 2019 with people in Australia with one or more of these blood-borne viruses (BBVs) and their family members, to understand the experiences of serodiscordant (mixed viral status) families. Through a thematic analysis, we explore the family imaginaries that participants evoked when describing their disclosure practices in relation to (self-defined) family members, revealing how some participants disclosed in ways that enabled them to shape their family, to maintain boundaries between self and family or to protect family from distress. Participants' accounts of disclosure to family revealed imaginaries of family as a precious web of connections to be nurtured or protected, but also as sites of ambivalent belonging and complex history. We conclude that BBV disclosure practices within families reveal important ideas about families that are imagined in response to the threat of loss, change and stigma.

Beyond deficit: 'strengths-based approaches' in Indigenous health research.

Health research concerning Indigenous peoples has been strongly characterised by deficit discourse-a 'mode of thinking' that is overly focused on risk behaviours and problems. Strengths-based approaches offer a different perspective by promoting a set of values that recognise the capacities and capabilities of Indigenous peoples. In this article, we seek to understand the conceptual basis of strengths-based approaches as currently presented in health research. We propose that three main approaches exist: 'resilience' approaches concerned with the personal skills of individuals; 'social-ecological' approaches, which focus on the individual, community and structural aspects of a person's environment; and 'sociocultural' approaches, which view 'strengths' as social relations, collective identities and practices. We suggest that neither 'resilience' nor 'social-ecological' approaches sufficiently problematise deficit discourse because they remain largely informed by Western concepts of individualised rationality and, as a result, rest on logics that support notions of absence and deficit. In contrast, sociocultural approaches tend to view 'strengths' not as qualities possessed by individuals, but as the structure and character of social relations, collective practices and identities. As such, they are better able to capture Indigenous ways of knowing and being and provide a stronger basis on which to build meaningful interventions.

Challenges of providing HIV pre-exposure prophylaxis across Australian clinics: qualitative insights of clinicians.

Background HIV pre-exposure prophylaxis (PrEP) has been rapidly implemented in Australia, initially through restricted access in demonstration studies, and then through prescribing across sexual health clinics and general practice settings. In 2018, PrEP was publicly subsidised for people with Medicare (universal health insurance for citizens, permanent residents and those from countries with reciprocal arrangements). There is little research examining the experiences of PrEP providers in Australia, and existing research has been primarily conducted before public subsidy. METHODS: In this qualitative study, we examine the challenges that have emerged for PrEP-providing clinicians after public subsidy for PrEP was introduced. We conducted 28 semi-structured interviews in 2019-20 with PrEP providers in two Australian states, and analysed data thematically. Participants included general practitioners (GPs), sexual health nurses and sexual health physicians. RESULTS: Sexual health services have been reconfigured to meet changing patient demand, with an emphasis on ensuring equitable financial access to PrEP. Restrictions to nurse-led PrEP frustrated some participants, given that nurses had demonstrated competence during trials. GPs were believed to be less effective at prescribing PrEP, but GP participants themselves indicated that PrEP was an easy intervention, but difficult to integrate into general practice. Participants expressed discomfort with on-demand PrEP. CONCLUSIONS: Our findings indicate that supporting ways for patients without Medicare to access PrEP inexpensively, advocating for nurse-led PrEP, and developing guidelines adapted to general practice consultations could ensure that PrEP is delivered more effectively and equitably. Additionally, PrEP providers require encouragement to build confidence in providing on-demand PrEP.

Mapping Experiences of Serodiscordance: Using Visual Methodologies to Construct Relationality in Families Living With or Affected by Stigmatized Infectious Disease.

The "my health, our family" research project was established to document stories of what serodiscordance (mixed infection status) means for Australian families affected by HIV, hepatitis B, and/or hepatitis C. A family mapping exercise was developed for the start of interviews as a way to conceptualize serodiscordance as a movement of "closeness" and "distance" within the relational networks that participants defined as "family," the outcome of which was originally intended as a guide to explore the contributions of each family member in the in-depth qualitative interviews that followed. Such static representations of family were soon revealed to be inadequate for capturing the contingent, flexible, and multifaceted nature of familial relationality in the management of these infections. In this article, we explore these shifts for the conceptual openness mapping methods facilitate, and the constraints they reveal, for spatializing family relations in ways that heed diverse experiences of serodiscordance.

Making the subjects of mental health care: a cross-cultural comparison of mental health policy in Hong Kong, China and New South Wales, Australia.

Constituting 'social problems' in particular ways has a range of effects, including for how subjects are positioned within policy and discourse. Employing an approach grounded in poststructuralist and social constructionist thinking, this analysis interrogates how the subjects of mental health care were constituted and problematised in mental health policies in two distinctive contexts, unsettling the taken-for granted assumptions which underpin these problematisations. Two policies were selected for analysis as exemplar pieces of mental health policy reform in Hong Kong and New South Wales (NSW). Subjects were constituted as 'patientised' individuals (in Hong Kong) encouraged to depend on professionals who help them reintegrate into the 'normal' community, and as 'traumatised' individuals (in NSW) expected to take responsibility to guide the delivery of mental health care and respected as a part of diversity in community settings. While both policies constituted subjects as 'unwell individuals' and enacted 'dividing practices', subjectivities were shaped by distinctive cultural and socio-political contexts. This analysis shifts our attention away from a focus on the effectiveness of policy solutions to the heterogeneity and contingency of policy 'problems' and 'subjects', opening up new possibilities for 'out-of-the-box' policy responses to mental health.

HIV pre-exposure prophylaxis and the 'problems' of reduced condom use and sexually transmitted infections in Australia: a critical analysis from an evidence-making intervention perspective.

HIV pre-exposure prophylaxis (PrEP) has been embraced in Australia, making PrEP available with public funding to people at risk of HIV. Here, we consider the associated 'problems' of reduced condom use and sexually transmissible infections (STIs), as seen by HIV professionals. Twenty-one interviews were conducted during May-August 2017. All agreed that PrEP was a valuable addition to HIV prevention, but their views about reduced condom use and STIs were variable. Using poststructural policy analysis, three main stances were identified: (1) Concerned/alarmed. PrEP was seen as causing reduced condom use, STIs and antibiotic resistance, posing threats to the general population; (2) Neutral/normalising. Stakeholders emphasised that condom use was declining and STIs increasing independently of PrEP, and that PrEP was simply a new tool to be accommodated; (3) Optimistic/critical. PrEP was seen as diminishing fear of HIV and engaging users in more frequent testing and treatment that could lead to declining STI rates. What linked all three stances was the selective performance of evidence, deploying a mixture of personal experience, clinical observations, behavioural data and epidemiology. Anticipating possible futures through evidence-making suggested practical, political and moral consequences for what PrEP could become. We encourage others to consider these consequences with care.

Queer families: valuing stories of adversity, diversity and belonging.

The 2017 Australian Marriage Law Postal Survey provided an unwelcome reminder that the concepts of queer sexuality and family life continue to be viewed as incompatible by many. However, campaigns in support of marriage equality also provide opportunities to document and disseminate stories of queer belonging within families. This commentary proposes three new ways of understanding and valuing accounts of what family means to LGBTQ communities, based on emerging findings from social research studies. It argues that in post-marriage equality contexts, it is time to learn to accept and to celebrate the differences that exist within every community, including within the diverse forms of families that are made.

A 'scoping review' of qualitative literature about engagement with HIV care in Indonesia.

Background The Indonesian response to HIV has been informed largely by quantitative evidence. This review examines what is known about the Indonesian HIV care cascade from published qualitative research. METHODS: A 'scoping review' method was used to synthesise and interpret the findings of 17 eligible peer-reviewed publications. RESULTS: Qualitative findings are reported in relation to two themes. Factors influencing successful engagement include a lack of HIV-related knowledge among clients, fear of stigma or lack of privacy/confidentiality at services, limited accessibility and affordability, and poor linkages between services. Factors affecting the broader response include a failure to adapt programs to specific socio-cultural settings, political issues in the distribution of donor funding, distrust and poor communication between service users and providers, the need for cultural privacy in particular community settings, and systemic experiences of gendered stigmatisation. CONCLUSIONS: Enhancing understanding of the Indonesian context would benefit from future qualitative research on HIV care in urban settings, describing the experiences of the most at-risk populations, and examining the role of clinics and providers in delivering HIV care in an increasingly decentralised health system.