Health workers' perspectives of hepatitis B-related stigma among Aboriginal and Torres Strait Islander people in New South Wales, Australia.

BACKGROUND: Experiences of stigma and discrimination can act as a significant barrier to testing, monitoring, and treatment for hepatitis B virus (HBV). Aboriginal and Torres Strait Islander Australians are a population disproportionately impacted by HBV and yet limited research has explored HBV-related stigma in these communities. To begin preliminary explorations of HBV-related stigma among Aboriginal and Torres Strait Islander people, we interviewed health workers about their perceptions regarding HBV infection and HBV-related stigma. METHODS: Participants were recruited from staff involved in the Deadly Liver Mob (DLM) program which is a health promotion program that offers incentives for Aboriginal and Torres Strait Islander clients to be educated on viral hepatitis, recruit and educate peers, and receive screening and treatment for blood-borne viruses (BBVs) and sexually transmissible infections (STIs), and vaccination. Semi-structured interviews were conducted with 11 Aboriginal and Torres Strait Islander and non-Aboriginal or Torres Strait Islander health workers who have been involved in the development, implementation, and/or management of the DLM program within participating services in New South Wales, Australia. RESULTS: Findings suggest that stigma is a barrier to accessing mainstream health care among Aboriginal and Torres Strait Islander clients, with stigma being complex and multi-layered. Aboriginal and Torres Strait Islander people contend with multiple and intersecting layers of stigma and discrimination in their lives, and thus HBV is just one dimension of those experiences. Health workers perceived that stigma is fuelled by multiple factors, including poor HBV health literacy within the health workforce broadly and among Aboriginal and Torres Strait Islander clients, shame about social practices associated with viral hepatitis, and fear of unknown transmission risks and health outcomes. The DLM program was viewed as helping to resist and reject stigma, improve health literacy among both health workers and clients, and build trust and confidence in mainstream health services. CONCLUSIONS: Health promotion programs have the potential to reduce stigma by acting as a 'one stop shop' for BBVs and STIs through one-on-one support, yarning, and promotion of the HBV vaccine, monitoring for chronic HBV, and treatment (where required).

Comparing Australian health worker and student attitudes and concerns about providing care to people living with hepatitis B.

ISSUE ADDRESSED: Hepatitis B (HBV) is a major public health issue with over 250 million people chronically infected worldwide. In Australia, prevalence is higher among migrant communities and these groups may be reticent to attend health care services due to concerns about experiencing stigma and discrimination. The way health workers perceive their clients, particularly those of migrant backgrounds, may influence the way they treat these clients and the quality of care provided. This study investigated and compared the attitudes and concerns health workers and health students have towards working with clients living with HBV. METHODS: Health workers (n = 551) and students (n = 199) completed an online survey which investigated attitudes towards people living with HBV, comfort with providing care for these clients and concerns they have about working with them. RESULTS: Health students expressed less comfort (U = 47 611, z = -2.73, P = .006) and reported more concerns about working with people with HBV than qualified health workers (U = 61611.50, z = 2.64, P = .008). Students' concerns were centred around their own ability to provide care rather than issues related to clients. There were no differences in overall attitudes towards people living with HBV between health workers and students. CONCLUSION: To address concerns that health workers and students may have in working with people living with HBV, particularly those from migrant communities, and to ensure that health workers feel comfortable and confident, HBV workforce development should be included in undergraduate and postgraduate training programmes as well as in continuing professional education. SO WHAT?: This will assist the health workforce to develop competency in the treatment of people living with HBV, with the ultimate aim of providing best quality, non-judgemental care to all people living with HBV.

The role of social support in moderating the relationship between HIV centrality, internalised stigma and psychological distress for people living with HIV.

Research has documented the negative impact of stigma on health outcomes for people living with HIV (PLHIV). How central HIV is to the identity of the individual may increase the negative effects of stigma, including greater psychological distress, while having strong social supports may play a buffering role. This study aimed to establish whether internalised stigma mediates the relationship between the centrality of HIV identity and psychological distress, while also assessing the role of social support as a moderator. PLHIV (n = 181) responded to a survey assessing experiences of living with HIV focussed on centrality of HIV identity, internalised stigma, and wellbeing. After controlling for age and education, findings from the mediation analysis show that the more central HIV is to an individual's identity, the more stigma is internalised and the greater the negative impact on psychological wellbeing. However, this is only the case for people with low levels of social support. Regardless of how central HIV is to identity, social support appears to act as a buffer and promote positive wellbeing. For those working with PLHIV, promoting the importance of good social support systems may be one way to address some of the negative impacts of stigma.

Stigma, Anxiety, and Depression Among Gay and Bisexual Men in Mixed-Orientation Marriages.

The mental health of gay and bisexual men in mixed-orientation marriages is poorly understood. In this article, the authors explore the development of anxiety and depression among gay and bisexual men in heterosexual marriages. Sixteen men, living in the Australian states of New South Wales, Queensland, Victoria, and Tasmania were interviewed throughout 2016 and 2017. An analysis of interviews identified four main themes, namely, compulsory heterosexuality, existential distress, compartmentalization, and integration and resolution. Participants reported experiencing anxiety and depression, which were exacerbated by the stigmatization of same-sex attraction and by an overwhelming distress from feelings of shame and guilt regarding their marital infidelity. Findings indicate that gay and bisexual men in mixed-orientation marriages develop anxiety and depression in response to the exigencies of compulsory heterosexuality and the compartmentalizing of same-sex attraction and identity during heterosexual marriage. Coming-out as same-sex attracted resolved men's distress by facilitating an integrative self-structure.

Predictors of health care workers' support for discriminatory treatment and care of people who inject drugs.

Complex lifestyle issues associated with injecting drug use may make it difficult to provide care to people who inject drugs (PWID). Negative attitudes towards PWID can undermine the provision of good quality care, hence, it is important to explore the impact of health workers' attitudes in the delivery of care to PWID. An online survey was administered to 336 health workers assessing contact with and attitudes towards PWID, concerns about these clients as well as whether health workers feel stigmatised by working with PWID. Health workers were also asked whether they supported the discriminatory behaviour of a colleague in a series of hypothetical scenarios about working with PWID. In correlational analyses, negative attitudes towards PWID, greater concerns about the behaviour of PWID, not feeling stigmatised by colleagues and seeing fewer clients who inject were associated with greater support for discriminatory actions in the hypothetical scenarios. Multiple regression analysis results showed that only attitudes towards PWID and concerns about the behaviour of injecting clients remain independent predictors of participant support for the hypothetical scenarios. This research highlights the role of attitudes toward PWID in understanding health workers' decisions, practices and potential behaviour.

Beyond cure: patient reported outcomes of hepatitis C treatment among people who inject drugs in Australia.

BACKGROUND: Recent advances in the treatment of hepatitis C virus (HCV) infection provide the possibility of eliminating HCV as a public health threat. This focus on HCV elimination through treatment, however, is also driving a concomitant focus on 'achieving cure' as the primary outcome of treatment. The aim of this paper is to explore what people who inject drugs consider to be important in relation to outcomes of HCV treatment, and whether there are outcomes 'beyond cure' that might be important to understand as part of improving engagement in treatment. METHODS: A peer researcher with experience of both HCV treatment and injecting drug use conducted interviews with 24 people in the following groups in Melbourne, Australia: (1) people who had refused or deferred HCV treatment; (2) people who were actively thinking about, planning and/or about to commence HCV treatment; (3) people currently undertaking HCV treatment and (4) people who had recently completed HCV treatment. RESULTS: The findings show that people who inject drugs are seeking outcomes 'beyond cure' including improved physical and mental health, positive changes in identity and social relationships and managing future health and risk. Participants indicated that these other outcomes had not been addressed within their experience of HCV treatment. CONCLUSION: While cure is an obvious outcome of HCV treatment, patients are seeking change in other areas of their lives. This study also provides valuable insights for the development of patient-reported measures in this context, which would be an important step towards more patient-centred approaches to HCV treatment.

Evaluation of the Deadly Liver Mob program: insights for roll-out and scale-up of a pilot program to engage Aboriginal Australians in hepatitis C and sexual health education, screening, and care.

BACKGROUND: Deadly Liver Mob (DLM) is a peer-driven, incentivised health promotion program aimed at increasing understanding of hepatitis C, promoting harm reduction in relation to injecting drug use, and linking participants to screening for hepatitis C, other blood borne viruses and sexually transmissible infections among Aboriginal people in Western Sydney, NSW. This paper presents the evaluation of a pilot study examining the acceptability of the program as a first step of a scalability assessment. METHODS: Deadly Liver Mob operated in co-located needle and syringe programs and sexual health clinics in two sites: (Site 1: two and a half years for 2 days/week; Site 2: 1 year for 1 day per week). Comparisons were made of the proportion of Aboriginal clients (Site 1) and occasions of service provided to Aboriginal clients (Site 2) in the 12 months prior and post-introduction of DLM. Interviews were conducted with 13 staff involved in delivery of DLM and with 19 clients. RESULTS: A total of 655 and 55 Aboriginal clients, respectively, attended Site 1 and Site 2 for health education. The proportion of Aboriginal clients attending both sites was significantly higher during the DLM compared with prior to its implementation. Of those attending for health education, 79 and 73%, respectively, attended screening following education. DLM clients strongly endorsed the program. Some staff were concerned about workforce capacity to effectively engage Aboriginal clients with multiple and complex needs, managing the differing aims of the participating services involved, and about offering of incentives for attendance at health services. CONCLUSION: While acceptability was high among staff and clients and preliminary results show high engagement with Aboriginal communities, this evaluation of a pilot program raises some issues to consider in scale up of DLM to other sites. The initiation of additional DLM sites should address issues of alignment with governing strategies and workforce capacity.

Listening to the consumer voice: developing multilingual cancer information resources for people affected by liver cancer.

BACKGROUND: In Australia, liver cancer incidence is rising, particularly among people born in hepatitis B-endemic countries. We sought to build an understanding of the information needs of people affected by liver cancer, to inform the design of in-language consumer information resources. METHODS: We searched the World Wide Web for available in-language consumer information and conducted a literature search on consumers' information needs and their preferred means of accessing it. Qualitative data collection involved bilingual researchers conducting focus group discussions (26 participants) and in-depth interviews (22 participants) with people affected by liver cancer in English, Vietnamese, Cantonese and Mandarin. Sessions were audio-recorded, transcribed, translated and thematically analysed. The key themes and salient findings informed the development of in-language multimedia information resources. RESULTS: Many consumer resources did not cater for people with low literacy levels. The participants wanted more information on cancer diagnostic and treatment options, nutrition and Chinese Medicine and experienced communication challenges speaking to health professionals. While Vietnamese speakers relied entirely on information provided by their doctors, other participants actively searched for additional treatment information and commonly used the Internet to source it. We developed multilingual, multimedia consumer information resources addressing identified consumer information needs through an iterative process, in collaboration with our multilingual consumer panel. These resources are available in four languages, as separate modules accessible online and in DVD format. CONCLUSION: This process enabled the development of user-friendly patient resources, which complement health-care provider information and supports informed patient decision making.

"Why Am I the Way I Am?" Narrative Work in the Context of Stigmatized Identities.

There are particular complexities faced by people attempting to tell their stories in the context of social stigma, such as the hostility which often surrounds injecting drug use. In this article, we identify some of the distinct advantages of taking a narrative approach to understanding these complexities by exploring a single case study, across two life-history interviews, with "Jimmy," a young man with a history of social disadvantage, incarceration, and heroin dependence. Drawing on Miranda Fricker's notion of "hermeneutical injustice," we consider the effects of stigmatization on the sociocultural practice of storytelling. We note the way Jimmy appears both constrained and released by his story-how he conforms to but also resists the master narrative of the "drug user." Narrative analysis, we conclude, honors the complex challenges of the accounting work evident in interviews such as Jimmy's, providing a valuable counterpoint to other forms of qualitative inquiry in the addictions field.

Multiple strategies are required to address the information and support needs of gay and bisexual men with hepatitis C in Australia.

BACKGROUND: Hepatitis C virus (HCV) infection is increasingly reported among gay and bisexual men. However, little is known about the personal and social dimensions of HCV-related experience among these men in Australia. METHODS: An online survey of 474 Australian gay and bisexual men was conducted from August to December 2013. A subsample of 48 HCV mono-infected and HIV/HCV co-infected men was analysed to explore HCV knowledge, sources of information, unmet information needs and use of HCV-related services. RESULTS: More than half of respondents in the subsample were unaware that HIV infection increases the risk of sexually acquired HCV and most wanted information about how to prevent the sexual transmission of HCV. A majority of respondents requested gay-specific HCV services, and approximately similar proportions of men indicated that they would like these services delivered by a hepatitis organization, a lesbian, gay, bisexual, transgender and intersex (LGBTI) organization and a HIV organization. Men in receipt of HIV antiretroviral treatments were most likely to request that gay-specific HCV information and support services be delivered by a LGBTI or HIV organization (OR = 8.63). CONCLUSION: These findings suggest that a variety of organizations are required to address the information and support needs of Australian gay and bisexual men with HCV.

Instrumental support to facilitate hepatitis C treatment adherence: working around shortfalls in shared-care.

Adherence to treatment for hepatitis C virus (HCV) infection is associated with the successful eradication of infection. However, patients often have difficulty adhering to HCV treatment because of factors such as the psychiatric side effects of regimens and social disadvantage. Commonly, health professionals including specialist physicians, nurses, social workers and psychologists work together under a multidisciplinary model of shared-care to support patients' adherence to HCV treatment. In some HCV treatment clinics, shared-care is not always available, or only partially implemented and this has implications for patient adherence. To explore the facilitators of adherence, an interview-based study was conducted in 2012 with a purposive sample of Australian physicians and nurses (N = 20). The findings reveal that when comprehensive shared-care was limited or unavailable, physicians and nurses filled in the gaps by assuming roles outside of their expertise to help patients adhere to HCV treatment. Physicians and nurses applied instrumental support strategies based on psychosocial interventions, namely patient advocacy, pragmatic problem-solving, treatment engagement and emotional support. These strategies were provided by dedicated physicians and nurses to address shortfalls in multidisciplinary shared-care. Although these interventions were reported to assist adherence, there is an increased risk of complications when physicians and nurses move beyond the bounds of their disciplinary training, for example, to assess and manage patients' psychiatric side effects or advocate on their behalf for social services. Future research should measure the effectiveness of instrumental support strategies on HCV treatment adherence, and explore the costs associated with physicians and nurses providing instrumental support in the absence of comprehensive multidisciplinary shared-care.

No ordinary mainstream illness: how HIV doctors perceive the virus.

Research has shown that social representations of HIV can constitute barriers to health workers' willingness to provide HIV care. Considering a growing shortage in the HIV primary workforce in Western countries, we examine how HIV is perceived today by doctors involved in its care. In 1989 Sontag predicted that once the virus became better understood and treatable, the dehumanizing meanings that defined the early epidemic would vanish and HIV would turn into an ordinary illness. However, research shows that HIV still carries stigma, including in the health care sector. Drawing on qualitative interviews, we found that HIV doctors in Australia perceived HIV as a far-from-ordinary chronic illness because of its extraordinary history and its capacity to extend in multiple clinical and social directions. These rarely explored perspectives can contribute to the social reframing of HIV and to strategies to build a dedicated HIV workforce in Australia and elsewhere.

Perspectives of a self-selected sample of former patients on the long-term health outcomes of interferon-based hepatitis C treatments: an exploratory study.

Research indicates that patients treated with interferon-based regimens can experience persistent neurotoxicity after treatment ceases and new symptoms attributable to the regimens can emerge post-treatment. To explore post-hepatitis C virus (HCV) treatment outcomes, in-depth interviews were conducted with a self-selected sample of people from two Australian states who had completed an interferon-based regimen at least 24-weeks prior to being interviewed. Participants comprised almost equal numbers of men and women aged from 26 to 57 years, who were treated for HCV genotypes 1 through to 4, and included treatment responders, non-responders and those who had relapsed after treatment. Of 27 participants who volunteered to be part of this study, 25 reported persistent physical and psychological side-effects after treatment. Participants perceived a direct causal link between the treatment regimen and their ongoing symptoms. Reportedly, recovery from treatment was inhibited by an absence of a follow-up protocol that identified and addressed patients' post-treatment needs, including medical care for persistent side-effects, referral, and information and advice about lifestyle issues. Although the study's sample was not representative of all people treated for HCV, it is likely that persistent side-effects and their impact can affect other patients following completion of HCV treatments. Further prospective studies of HCV treatment outcomes are needed. In the meantime, the systematic implementation of a follow-up protocol in liver clinics might expedite recovery in patients who experience ongoing adverse health.

Under the watchful eye of 'a benevolent dictator' - general practitioner and patient experiences of hepatitis C treatment initiation and shared-care in general practice.

BACKGROUND: Innovative models of hepatitis C treatment delivery are needed to increase treatment uptake. METHODS: A qualitative evaluation of the Australasian Society for HIV Medicine's Initiation of Hepatitis C Treatment in General Practice Pilot was conducted between November 2010 and June 2012. Structured interview schedules collected data on the treatment experiences of seven general practitioners (GPs) and eight of their patients. RESULTS: GPs were satisfied with the process of initiating hepatitis C treatment. They were generally positive about the support they had experienced under shared-care arrangements with tertiary clinics and they saw few barriers to initiating treatment. Similarly, patients appreciated the continuity of care that this treatment model affords, the convenience of accessing treatment from their GP and being treated by a GP they trusted. CONCLUSION: The initiation of hepatitis C treatment through general practice is a viable model that could increase the number of people accessing hepatitis C treatment.

Australian health and medical workers' concerns around providing care to people living with hepatitis B.

There is established literature on health workers' attitudes towards working with people living with stigmatised health conditions and behaviours, such as HIV, hepatitis C and injecting drug use. Less is known about health workers' attitudes and concerns around providing care to people living with hepatitis B virus (HBV), which is concerning as research indicates that negative attitudes may impact on the quality of care provided to these populations, with adverse health outcomes for clients. The aim of this paper is to examine health and medical workers' concerns about providing care to people living with HBV, and the factors that may influence these concerns. Australian health and medical workers (n = 551) completed an online survey measuring their concerns about providing care to people living with HBV, stigmatising attitudes towards this group, perceived comfort of themselves and colleagues in providing care towards clients with HBV, and witnessing their colleagues behaviour in a discriminatory way towards clients with HBV. Multiple regression was used to ascertain factors predictive of health workers' concerns about working with clients with HBV. Results showed that older participants and those who had spent less time working in the health and medical field had greater concerns about caring for people living with HBV. Workers who did not know someone living with HBV, who were less comfortable around clients with HBV, who perceived their colleagues to be less comfortable working with clients with HBV, and who had more negative attitudes towards this group also had greater concerns around providing care to people living with HBV. Efforts should be made to improve health and medical workers' attitudes towards working with people with HBV. This may also improve workers' level of comfort with people with HBV and reduce the reported reticence they have towards working with this client group.

Positive effects of community attachment on internalised stigma and wellbeing among people who inject drugs.

BACKGROUND: Internalised stigma experienced by people who inject drugs (PWID) is known to have negative health consequences. Research has explored factors that may protect or buffer individuals from the negative consequences of internalised stigma. Community attachment, or perceived connection to a community of like people, can have numerous health-related benefits. However, this relationship may be complex for PWID; being part of a social network of PWID may provide opportunity for more frequent drug use and equipment sharing. This study investigated the relationships between community attachment, internalised stigma, and wellbeing among PWID, while also addressing potential health risks associated with PWID community attachment. METHODS: PWID (n=603) were recruited through nine peer-based drug user organisations across Australia with assistance from the peak consumer organisation. Participants completed a survey measuring community attachment, internalised stigma, personal wellbeing, injecting frequency, and equipment sharing. RESULTS: Greater attachment to a PWID community was associated with lower internalised stigma, but also with sharing of injecting equipment and increased frequency of injecting behaviour. The relationship between community attachment and personal wellbeing was mediated by internalised stigma, however this was only the case for PWID who reported no sharing of injecting equipment. CONCLUSIONS: This research highlights the significance of community attachment for PWID while also noting the complexity of this relationship and the potential negative consequences. It is important to view networks of PWID communities as sources of positive social capital, where norms about health behaviours and harm reduction can be promoted and which can buffer community members from the harms associated with stigma.

Stigma as understood by key informants: A social ecological approach to gay and bisexual men's use of crystal methamphetamine for sex.

This paper explores the perceptions of 35 key informants (KIs) in a range of relevant health and community sectors regarding the stigmatisation of GBM's crystal methamphetamine use and sexual practice with view to informing stigma reduction efforts. A modified social ecological model was used to guide analysis and interpretation. At the individual level, KI participants indicated that crystal methamphetamine was used by some GBM to reduce the effects of internalised stigma. At the network level, KIs thought that some drugs and types of use could attract more stigma and that this could erode support from GBM networks for men who use crystal. KIs felt that few "mainstream" organisations could provide appropriate services for GBM who use crystal and furthermore, that there was significant work to "undo" misperceptions of the harms of crystal use. At the policy level, mass media anti-drug campaigns were seen to be a significant generator of stigma with irrelevant and patronising messages that lacked useful information. Efforts to reduce stigma about crystal methamphetamine use amongst GBM must address individual, network, organisation and policy issues and be underpinned by understandings of social power in relation to sex, sexuality, drug use, infectious status and sexual minorities.

Applying a diffusion of innovations framework to the scale-up of direct-acting antiviral therapies for hepatitis C virus infection: Identified challenges for widespread implementation.

BACKGROUND AND AIMS: Interferon-free, direct-acting antivirals (DAAs) for hepatitis C virus (HCV) offer much promise to achieve World Health Organization targets by 2030. However, impediments at the practitioner and health-system level will continue to obstruct the scale-up of DAAs worldwide unless identified and acted upon. Applying a diffusion of innovations framework, the aim of this study was to identify structural factors impacting practitioner experiences of managing HCV treatment. METHODS: In-depth, semi-structured, telephone interviews took place between September 2018 and April 2019 to investigate barriers and facilitators for engaging in HCV management and DAA therapy amongst general practitioners (GPs) who prescribe opioid agonist therapy and drug and alcohol specialists in Australia. Interviews were transcribed verbatim, de-identified, and coded, and data were analysed with iterative categorisation and thematic analysis using Everett Rogers's diffusion of innovation framework. RESULTS: amongst 30 participants (12 GPs, 18 drug and alcohol specialists), several structural factors were reported to impede practitioner efforts to deliver optimal HCV care. Two primary themes were explored: contextual factors for the diffusion of DAA therapies, including attempts by participants to shift clinic culture and respond to siloed health structures, and adopter factors. Some participants chose to 'rock the boat' by circumventing clinic protocol and HCV guidelines to treat more clients, effectively shifting adopter categories to become greater advocates in HCV care. Also, while a role for GPs as the 'new adopters' in HCV management was discussed, many participants expressed uncertainty as to how much GPs should become involved in the diffusion of DAA therapies more widely. CONCLUSIONS: Reducing the global burden of HCV infection will not be possible without the widespread delivery of HCV treatment amongst practitioners. Practitioners and health workers require leadership and resources from health authorities so that the individual and population-level benefits of DAA therapy are realised.

Stigmatising attitudes towards people who inject drugs, and people living with blood borne viruses or sexually transmissible infections in a representative sample of the Australian population.

Stigma has significant detrimental health outcomes for those affected. This study examined socio-demographic characteristics that were associated with stigmatising attitudes among the general population towards people who inject drugs, and people living with blood borne viruses or sexually transmissible infections. Questions were included in the Australian Survey of Social Attitudes (total sample = 1,001). Attitudes towards each of the target populations were measured by 5-item stigma scales. Bivariate analyses and multiple regression analyses were conducted to identify socio-demographic characteristics associated with stigmatising attitudes. Knowing a person affected by a stigmatised attribute was associated with reduced stigmatising attitudes, while voting for a conservative political party was associated with increased stigmatising attitudes. Age, gender, education, income, and marital status were each related to some stigmatising attitudes. Results also highlight differences between attitudes towards a stigmatised behaviour (i.e., injecting drug use) and stigmatised conditions (i.e., blood borne viruses and sexually transmissible infections). Identifying socio-demographic characteristics that are associated with stigmatising attitudes may have global implications for informing stigma reduction interventions, in order to promote positive health outcomes for affected communities.