HIV/AIDS Stigma and Discrimination

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Australian Social Work

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Grappling with Realities: Policy and Practice in HIV Social Work

Gary Hampton, Michael Buggy, Jenni Graves, Lisa McCann & Jude Irwin

To cite this article: Gary Hampton, Michael Buggy, Jenni Graves, Lisa McCann & Jude Irwin (2017) Grappling with Realities: Policy and Practice in HIV Social Work, Australian Social Work, 70:1, 92-103, DOI: 10.1080/0312407X.2016.1146313

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Grappling with Realities: Policy and Practice in HIV Social Work Gary Hamptona,b, Michael Buggya,c, Jenni Gravesa,d, Lisa McCanna,e, & Jude Irwinf

aSocial Workers in HIV (SWHIV), Sydney, New South Wales, Australia; bADAHPS (AIDS Dementia and HIV Psychiatric Service) South Eastern Sydney Local Health District, Sydney, New South Wales, Australia; cAlbion Centre, South Eastern Sydney Local Health District, Sydney, New South Wales, Australia; dPrince of Wales Hospital, South Eastern Sydney Local Health District, Sydney, New South Wales, Australia; eSydney Sexual Health Centre, South Eastern Sydney Local Health District, Sydney, New South Wales, Australia; fFaculty of Education and Social Work, University of Sydney, Sydney, New South Wales, Australia

ABSTRACT In 2012 the NSW HIV Strategy 2012–2015: A New Era was released, with a goal of eradicating Human Immunodeficiency Virus (HIV) by 2020. This new policy, prioritising biomedical treatment, has raised challenges for social work practitioners working in the HIV field. We undertook a research project exploring the implications of the Strategy on social work clients and practice. A questionnaire was sent to 57 HIV social workers and 32 (56.1%) responses were received. Thematic analysis identified five main themes affecting social workers and their clients. These were a new stigma, treatment benefits, the complexity of people’s lives, the psychosocial voice, and ethical and professional tensions. We propose that a more holistic HIV strategy including the psychosocial realities that inform HIV transmission, testing and treatment options, and adherence be adopted.

ARTICLE HISTORY Received 30 April 2015 Accepted 7 December 2015

KEYWORDS AIDS and HIV; Clinical Practice; Social Work Practice; Social Work History; Social Workers; Gay and Lesbian Issues

In 2014 throughout the globe there were an estimated 36.9 million people living with Human Immunodeficiency Virus (HIV), with 2 million new HIV transmissions that year (World Health Organization, 2015). Many countries in both the developed and devel- oping world are struggling with increasing HIV transmission. Across the world human relationships have had to change and social, political, and health care structures have had to respond to this disease.

Australia, and particularly New South Wales (NSW), is internationally respected for its work on the management of HIV (O’Donnell, Grulich, Garsia, Parkhill, & Browne, 2010). In NSW, the social work profession has been fundamental to the HIV response. Since the early days of the HIV epidemic social workers have advocated for clients’ rights, partici- pated in policy and program development, and ensured stakeholder engagement of people affected by HIV. Social workers have been change agents from the outset, uniquely placed to advocate for social, cultural, and clinical change. They have worked across a wide range of fields such as policy, case management, counselling, research, and with communities and peer networks. “Our work with individuals, families, groups, and communities uses

© 2016 Australian Association of Social Workers

CONTACT Gary Hampton [email protected]

AUSTRALIAN SOCIAL WORK, 2017 VOL. 70, NO. 1, 92–103 http://dx.doi.org/10.1080/0312407X.2016.1146313

the entire array of social work competencies, in terms of our abilities to assess needs on a variety of systems levels and identify resources to formulate and implement interventions” (Linsk, 2011, p. 218).

In 2012 the NSW HIV Strategy 2012–2015: A New Era (the Strategy) was released (NSW Ministry of Health, 2012). It sets out a range of approaches and implications for social workers in HIV. The Strategy is a bold document that aims to virtually eliminate HIV transmission in NSW by 2020. While continuing to emphasise the longstanding reductions on risk behaviours and harm minimisation, the Strategy clearly prioritises increasing HIV testing and treatment (NSW Ministry of Health, 2012, p. 5).

It was this prioritisation of biomedical treatment that led to the research that is the focus of this article. Social workers working in the area of HIV were concerned with the increased focus on biomedical treatment. While recognising the importance of this treatment, concerns were expressed that this was often at the expense of a more holistic approach, including psychosocial interventions. These concerns led to a research project being undertaken to explore the impact of the Strategy on social work. The article begins by providing a context and outlining the history of HIV in Australia. The research project is then described, followed by a presentation of the themes that emerged from the qualitative data and the implication of these for social work practice.

Decades of Change

During the past three decades, the lived experience of HIV for clients and service providers has been in a continual state of change (Table 1). Throughout the first decade (1982–1992) in NSW, and in the context of death and dying, social workers worked with grief and loss, at individual, community, and systemic levels (Kull, 2010). During this period commu- nities mobilised and sought ways to reduce transmission of HIV, such as access to condoms and needle and syringe programs (NSP). Social workers were involved with the development of innovative safer sex and harm minimisation programs. These strat- egies are well documented as having mitigated the impact of HIV in Australia (O’Donnell et al., 2010). In the context of death and dying, hope and optimism began to develop with the introduction and improvement of medical treatments (Bowen, 2013; Lowth, Yallop, Reid, & Fitzgerald, 1999). While efficacious management of HIV and AIDS was some way off, by the end of the first decade the death rate began to reduce, through improved medical treatment along with community and individual change.

The second decade of HIV (1992–2002) saw the consolidation of treatments. Within a few years there was a rapid turnaround of hopelessness that pervaded the first decade with the realisation that people may not necessarily die from this condition. “In no time since AIDS began … has there been so much hype, expectation and optimism around treatment options for people living with the virus” (Batrouney in Lowth et al., 1999, p. 32). Lowth et al. (1999) identified and explored the changing roles of health care practitioners working in HIV in the mid to late 1990s. Emotional adjustments were required by those working in the field, as clients reinvented lives and moved towards uncertain futures. Health care practitioners found that the lack of uniformity around issues of treat- ment increased uncertainty. Yallop, Lowth, Fitzgerald, Reid, and Morelli also found that “… the new therapies took away much of the crisis. The field is now dominated by more mundane concerns—drug regimens and getting people back to work, rather than

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Table 1 History of HIV Key Events in New South Wales and Australia Years Key events

1st decade: 1982–1992 A period of HIV consolidation in Australia, with a focus on death and dying, and community mobilisation and advocacy

1982 First person diagnosed with HIV in Australia at St Vincent’s Hospital in Sydney (a US citizen).

1983 First Australian diagnosed with AIDS, and the first death of an Australian.

The virus causing AIDS was discovered. 1985 HIV antibody testing becomes available. 1986 The virus that causes AIDS is named Human Immunodeficiency Virus (HIV).

NSW first Needle and Syringe Program (NSP) began. 1987 Peak in HIV diagnosis in Australia was at more than 2000. Zidovudine (AZT) is the first drug approved for use against HIV in Australia.

The grim reaper advertisement campaign was aired in Australia.

2nd decade: 1992–2002 The focus was on new treatments, living with HIV, reinventing life with new hope and optimism

1995 A peak of 654 deaths from AIDS in Australia, numbers declined from here on.

Highly active antiretroviral therapy (ART) or the second class treatment drugs.

1996 Consolidation of ART and the third class treatment drugs. 1997 Post exposure prophylaxis (PEP) made available for nonoccupational exposure to HIV in NSW.

Free access to HIV viral load testing becomes available to Australians.

1998 The lowest annual number of Australian HIV diagnosis recorded (1998).

Early 2000s HIV hospital bed numbers decreased, with the probable lowest number of beds during this time.

3rd decade: 2002–2012 A time of increasing stabilisation and consolidation of new therapies

Expansion of HIV treatments. 2005 The first time the manufacturing of an HIV drug (zalcitabine or DDC) was ceased due to obsolescence.

Begin to look at HIV and ageing, with increasing awareness of the impact of HIV on the neurological system.

4th decade, 2012–2022 Bold targets are being set in NSW, planning the virtual elimination of HIV transmission

2012 NSW HIV Strategy 2012–2015 released. The focus largely on treatment and prevention and innovative testing technologies.

2014 Pre exposure prophylaxis (PrEP) available in pilot projects. Focus on community viral load. Set targets to eradicate new transmissions of HIV in NSW by 2020.

Merging of treatment and prevention approaches to client care.

5th decade: 2022–2032 The vision of a post HIV world where positive people are not infectious and risk groups can be treated prior to exposure

Target 2020 and beyond: The virtual elimination of HIV in NSW.

Note. Information for the first three decades in this table was taken from The Albion Centre, 2012. Information for the fourth and fifth decades was taken from NSW Ministry of Health, 2012.

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helping people to reconcile their lives” (2002, p. 439). The lowest number of annual HIV diagnoses in Australia was recorded at 724 in 1999 (see Figure 1). The development of antiretroviral therapy (ART) revolutionised treatment, care, and outcomes for people living with HIV (PLHIV). The notion of living with a lifelong illness began to emerge and as people with HIV lived longer, they realised they had not planned for the future (Humble, Bride, Kolomer, & Reeves, 2012). Some had spent their superannuation and life savings, and others had not trained for careers or bought a house as there had pre- viously been no hope for the future.

Entering into the third decade (2002–2012) the focus became living a relatively normal life, while at the same time living with, and managing, a lifelong condition. People began looking at issues such as HIV and ageing and the impact of lifelong treatment and poly- pharmacy (Bowen, 2013; Ka’opua & Linsk, 2007). There was increasing knowledge of the impact of HIV on the neurological system and cognitive processes. Evidence showed that HIV aged the brain in some people—possibly up to 40–50% of those infected (Grant et al., 2014)—and irreversible damage could occur when people were immunosuppressed and not taking antiretroviral treatment. Some forms of antiretroviral treatment were effective in halting the progression of HIV-related brain damage, and in some cases reversing impairment (“Neurological disorders”, 2011; Tozzi et al., 2007). Hospitalisations for HIV/AIDS (acquired immune deficiency syndrome) hit a low as models of care continued to change and PLHIV accessed treatment at outpatients’ clinics and through general prac- titioners (GPs). Overall, the contributing factors to HIV management and prevention enabled the successes of sustained, relatively low numbers of new HIV transmission (Aggleton & Kippax, 2014; Kippax & Stephenson, 2012; Linsk, 2012).

As we are now within the fourth decade of the HIV epidemic (2012–2022), there has been a renewed push and vigour clearly aimed at the elimination of HIV transmission in NSW by 2020 (NSW Ministry of Health, 2012). Community, government, research, and nongovernment sectors are reorientating at a rate not seen since the early days of the epidemic. This push is revolutionising the sector with policy directives prioritising different strategies (such as testing and diagnostic capabilities) and redesigning systematic frameworks (such as access to health care models). In the late 1980s and 1990s the focus was on safe sex practices such as the use of condoms and NSP, which remain critical in the HIV response. Now, early recognition and treatment are the new priorities aimed at

Figure 1 Chart of New Diagnoses in Australia Note. Reproduced with permission from HIV, Viral Hepatitis and Sexually Transmissible Infections in Australia Annual Surveillance Report 2014, The Kirby Institute, UNSW, Sydney.

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ensuring improved health outcomes and reducing the risk of HIV transmission. The Strat- egy outlines that “recent studies have found that combination ART treatment can help prevent the transmission of HIV as well as improve the health and life expectancy of people with HIV” (NSW Ministry of Health, 2012, p. 8). This was good news for individ- uals with HIV and others who may have been exposed to transmission risks and led the push for early recognition and early treatment, and the term of “Treatment as Prevention.” Ideas developed by Whittaker (2011) that draw heavily on research to justify treatment as prevention, outline the enabling environment required for the virtual elimination of HIV in NSW to occur. Some of these actions include increased testing across certain popu- lations, maximising access to treatment, and increasing pre- and post-exposure prophy- laxis, setting bold targets, and mobilising affected communities.

As we project forward into a fifth decade (2022 and beyond), HIV remains a serious illness for those infected. The NSW Ministry of Health target is the virtual elimination of HIV transmission by 2020. This article seeks to examine the impact of the Strategy on social workers and their clients and to take stock and articulate lessons learnt prior to moving into HIV’s fifth decade.

Social Workers, the HIV Response and the Research

As mentioned, social workers have had significant involvement in the HIV response. In NSW the majority of these social workers are members of Social Workers in HIV (SWHIV). SWHIV is a special interest group of social workers within the HIV sector in NSW, Australia’s most populous state. Previously known as Social Workers in AIDS (SWAIDS), SWHIV has been active for more than 25 years. The majority of the group’s approximately 60 members have worked as part of the HIV response throughout the decades of change, described above. The group meets regularly to enable discussion of current social work issues in the HIV sector, to act as a voice for PLHIV in the wider health sector, and to undertake investigation and research into social work issues for PLHIV.

When the NSW Ministry of Health launched the Strategy, all professionals working in NSW’s HIV sector, including social workers, were required to work towards the Strategy’s goals and targets. As the Strategy was rolled out from 2012, some SWHIV members were concerned that biomedical aspects may be privileged at the cost of psychosocial and indi- vidual care aspects. The group decided that a research project should be undertaken to explore social workers’ views and experiences of the impact the Strategy was having on their practice. A small group of members took responsibility for the research.

Methodology

The research project was developed following prolonged discussion between social workers in SWHIV meetings about the practice implications emerging from working under the Strategy. The purpose of the research was to explore HIV social workers’ experi- ences of how the Strategy was influencing their practice. An online questionnaire was developed aimed at collecting both quantitative (via closed-ended questions using a Likert scale) and qualitative data (by providing space for comment where respondents could elaborate on their responses to the questions). Questions were formulated by the research working group after discussions in SWHIV meetings. The questions explored

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biomedical approaches, social work professional ethics, challenges and benefits of the Strategy to the social worker and clients, and modifications to social work practice. The South Eastern Sydney Local Health District Human Research Ethics Committee provided ethics approval, following which the questionnaire was sent to all SWHIV members.

The quantitative data were collated and analysed descriptively. To ensure the authen- ticity and trustworthiness of the qualitative data a thematic analysis of the respondents’ responses was undertaken by all members of the research group, initially independently and then collectively, coding the texts, and using this coding to identify themes. The researchers worked methodically through the data to group themes and compare groups with subgroups. It is the themes that emerged from the qualitative data that are the focus of the remainder of this article.

Findings and Discussion

Thirty-two of 57 social workers responded to the survey (56.1%). The respondents were highly experienced with 50% (n = 16) having worked in the field for more than 10 years, many with more than 20 years experience. Just under 42% worked in a community setting, just over 38% worked in a clinic, and over 19% in hospital settings. The majority of the respondents (more than 90% or n = 29) identified working in case management or counselling roles with less than 10% in nonclinical roles.

Five main themes emerged from the qualitative data. These were: the emergence of a new stigma; the benefits of treatment and the Strategy; the complexity of people’s lives; the psychosocial voice; and ethical and professional tensions.

A New Stigma

Stigma and discrimination have long been associated with HIV and experienced by PLHIV especially given that key affected populations have been men who have sex with men (MSM), sex workers, and people who inject drugs. Stigma has been identified as either self-directed (internalised) or actual (enacted); the former having a significant impact on ART nonadherence (Earnshaw, Smith, Chaudoir, Amico, & Copenhaver, 2013; Katz et al., 2013). Analysis of qualitative data obtained in this study suggested a new stigma is emerging related to those, who for numerous reasons, do not take medication. A respondent commented “Disclosure, stigma and discrimination can be affected with the biomedical approach and I wonder if people who do not take medi- cation will become the new focus for HIV stigma?” Another wrote “It has created a new group of stigmatised individuals—those who do not accept, or are not ready for treatment.”

The Strategy and associated awareness campaigns have highlighted the public health gains that are made when there is early initiation of treatment and when PLHIV are on ART. This has been one of the most meaningful and life-changing medical discoveries of our generation, something not dreamed of in the early days of HIV. The Strategy’s target is for 90% of PLHIV to be taking ART, increasing from 2012 estimates of between 54 and 70% (NSW Ministry of Health, 2012, p. 25). This target is creating some pressure for social workers and clients. One respondent described how a client felt pressured to commence treatment:

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He felt that he should commence treatment, not because he felt unwell, or because he really wanted to, but because there is an expectation now in the community that everyone will com- mence treatment to achieve an undetectable viral load. He felt that it was somehow socially unacceptable to do otherwise.

Alternatively, some respondents reflected that now stigma could be reduced. One social worker wrote “The achievement of an undetectable viral load has the potential to decrease the stigma associated with being HIV positive, as well as to achieve optimal wellness for PLHIV.” Although some respondents mentioned that stigma could be reduced, the majority felt a new stigma towards those who were not under biomedical treatment has emerged both in the HIV community and within health care services.

Benefits of Treatment and the Strategy

In response to questions on the impact of the Strategy and the implications to their prac- tice, there was general agreement with the strategic directions, with 50% (n = 16) agreeing that the Strategy has provided opportunities for working with clients, and with nearly a third (28%, n = 9) modifying their practice. Noticeably just over 37% (n = 12) agreed that the Strategy had benefitted their clients; 48% (n = 15) were neutral or undecided.

When asked whether the Strategy had benefitted their clients, social workers had mixed responses. A range of individual and sector benefits, and recognition of treatment benefits, were identified. Individual benefits included better information for clients and increased client engagement in health care planning, which is supportive of PLHIV and decreases stigma. As reported by one respondent:

Knowing one’s own HIV status early is of benefit to the individual and to others. It allows a person the opportunity to plan and engage in a health care plan earlier, e.g., accessing support, talking about treatment options, protecting partners, and becoming informed about their socio-legal rights and responsibilities.

One of the main sector benefits identified was the re-energised HIV sector with respon- dents broadly in support of the Strategy, acknowledging the individual and community benefits. One social worker identified “The attention and focus on HIV by the state gov- ernment has ensured the sector has not lost funding (yet). This leadership surely filters down to clients.”

Increased access to treatments and testing were seen as positive outcomes of the new focus on ART therapies. The most dominant theme to emerge from the survey responses is concern that the emphasis on structural biomedical interventions may result in the dis- empowerment of the individual. A typical response identifies this concern:

As social workers we are being asked to apply a one-size-fits-all approach to clients with dif- fering needs and personal resources, on the basis that the testing and treatment of this model will benefit the population overall—without considering that they may not benefit some indi- vidual clients.

Complexity of People’s Lives

The majority of respondents commented that the Strategy assumes a homogenous popu- lation, whereas PLHIV come from diverse backgrounds, lifestyles, and lived experiences.

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For example, PLHIV come from various sociocultural, socioeconomic, sociopolitical, and geographical backgrounds as well as having different experiences of issues such as power, poverty, geographic connectedness to communities, and visibility. Many survey respon- dents considered the Strategy is limited in addressing the many needs and differences of individuals and their life circumstances. One respondent stated: “I feel the Strategy excludes people with complex issues (e.g. mental health and AOD [alcohol and other drugs] issues), PLWHIV from culturally and linguistically diverse (CALD) backgrounds, heterosexual people, and nongay-identifying MSM to a large degree.” Another respondent commented that the Strategy’s treatment as prevention approach is “A blunt instrument when considering the particularly complex individual, interpersonal, and relational issues of sex, sexuality, relationship, risk, pleasure, decision-making, and behaviour that is inherent in this field of work.”

The complexities are reported as occurring for individuals within the gay community or MSM population group and also those who acquire HIV in other ways (e.g., intravenous drug users, women, people from countries with high incidence of HIV). This is not a hom- ogenous group and there are vast behavioural differences between gay-identifying individ- uals and groups and nongay-identifying, married bisexual, and other men and women (Kippax, 2012).

Although the majority (84%) of new HIV infections in NSW are reported among gay and homosexually active men (NSW Ministry of Health, 2012, p. 7), there are sig- nificant differences within this group and for others who are not MSM and also newly infected. As one respondent commented there is a need for “Unpacking the complex- ities and range [of] HIV presentations that are represented with our clients.” Another commented that:

Not everyone is empowered regarding their status or sexual orientation. Additionally those with complex or emotionally deprived backgrounds, CSA (child sexual abuse), war zone torture and trauma don’t easily measure up to “one approach fits all.” It’s unlikely they ever will.

Respondents were especially apprehensive that marginalised populations and smaller groups of people whose needs may not be especially well attended, may become more mar- ginalised as a result of this strategy.

I think it is important that clients are fully informed so they can make the choice when to get tested and when to get treated. In prison for example it may not be optimal for a person to learn they are HIV positive—in fact it could be dangerous.

These complexities impact on an individual’s readiness for treatment and capacity to adhere to treatment. Without consideration of these factors other problems, both medical and psychosocial are likely to emerge, such as resistance to medications the person is currently taking. This could have enormous implications for an individual’s health and lifespan. The public health benefits of treatment as prevention as outlined earlier in this article, creates tensions between the need to utilise new evidence to benefit personal and collective health (i.e., ARTs keeping PLHIV alive and reducing infectivity from unprotected sex) and the needs and views of individuals, their self- determination, a core social work value (Australian Association of Social Workers, 2010, p. 25).

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The Psychosocial Voice

When asked about psychosocial strategies compared to biomedical strategies most respon- dents cautioned against resting solely on the predominantly treatment-focused HIV inter- vention, despite generally supporting the principles of treatment as prevention as described in the Strategy. For example, one respondent stated:

While it is helpful at a population level to identify HIV positive individuals through testing, the potentially devastating effect of a positive result on individuals must also be given suffi- cient importance and support. The two approaches—biomedical and psychosocial—surely don’t need to be mutually exclusive.

Respondents highlighted broad and varied psychosocial interventions used successfully by social workers across the continuum of care. These interventions include advocating on behalf of marginalised individuals and communities, assisting access to support services, and provision of case management, care planning, and care coordination services. In addition, individually focused strategies promoted the continuation of condom education, harm minimisation, behaviour change, and emotionally supportive counselling.

Central to respondents’ concerns was the idea of conserving and enabling client auton- omy, individual choice, self-management, and positive engagement in health. As one respondent stated:

Each individual client will have an individual plan designed and tailored for their direct needs. As part of this process medications and the need for ongoing testing and ART are referred to. So too is the encouragement of the use of condoms and the responsibility to inform potential sexual partners. Addressing stigma and discrimination and the resultant iso- lation has become a well-documented issue of concern.

Social workers have an active role to play in helping people at risk of becoming HIV positive be more mindful of how HIV may impact their lives, and better manage that risk by engaging in healthier sexual practices. Likewise, PLHIV or people receiving a new diagnosis of HIV can be assisted in attaining optimal wellness goals by being aware of their HIV status, knowing what ART options are available, and how to get the best results from treatment, for example through adherence, immune fitness, and AOD management. Being linked to psychological and social supports—for example, social workers, case workers, dieticians, and peer support groups—may assist care planning for people managing complex social issues such as homelessness and intravenous drug use. If these psychosocial factors are not addressed, this could create barriers to the effec- tive implementation of the Strategy. This has ramifications for patients’ individual health outcomes, with implications for public health.

Ethical and Professional Tensions

The majority (63%, n = 20) of respondents found the biomedical approach in the Strategy presented challenges in working with their clients and more than half (53%, n = 17) of the respondents were of the view that the Strategy presented challenges to their clients.

The Australian Association of Social Workers (AASW) Code of Ethics (2010, p. 9) out- lines social workers’ commitment to self-determination, culturally appropriate practice, informed consent, and prevention and elimination of discrimination, which in part may

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explain the tension that many social workers are experiencing. A number of ethical and pro- fessional concerns related to self-determination and discrimination were identified by respondents. In particular, they expressed unease that the Strategy seems to rest solely on a population health approach through treatment as prevention, to the exclusion of other social and behavioural interventions. It is considered that the imposition of the biomedical model at an organisational level could potentially undermine individual autonomy, self- determination, and personal choice, further restricting an individual’s ability to fully partici- pate in their own health care and make choices that will affect their future. For example, one respondent described “It is consistent with social work ethics as long as PLHIV can make their own choices within the medical frameworks in which they engage for monitoring. Their choice includes not being monitored as well.” Another wrote “The push for this I feel goes against good social work practice and values around client autonomy and self- determination and it has been challenging to incorporate this model in treatment discussion, particularly for newly diagnosed young people.”

The reduction in individual focus and self-determination arguably does not benefit clients and limits self-empowerment. Respondents stated there was a lack of complexity in the approach, further entrenching inequities and creating a new category of disempow- ered client. As one respondent stated “The Strategy may definitely benefit some clients, particularly those compliant, stable, and in relationships. However for many it promotes a false sense of security and for those with chaotic life circumstances it is daunting to watch.” More worryingly, the impact of the Strategy places constraints on the psychosocial and multidisciplinary approaches and practices in the sector. Another respondent stated that the Strategy has “ … shifted interpersonal power back to the medicos and treatment services rather than empowering individuals. … It has oversimplified a complex social issue, presenting a greater level of confusion for both HIV positive and negative people.”

None of the respondents were opposed to the idea of treatment as prevention when considered as part of a comprehensive health strategy, addressing both individual and population health needs. A high level of confidence was expressed about the benefits believed to be associated with increased uptake in testing. If people know about their HIV status they tend to be more protective of sex partners in order to avoid onward trans- mission of HIV (Fox et al., 2009) and more engaged in their own health care plans. In addition, recent studies show that current HIV treatments significantly improve individual health outcomes as well as reduce the HIV viral load within high-risk communities. However, respondents were keen to emphasise that this benefit should not come at the cost of reduced client autonomy. One respondent conveyed:

The AASW Code of Ethics (2010, p. 8) defines our clients as “individuals, families and other kinship arrangements, groups, communities, organisations and societies, especially those who are neglected, marginalised, vulnerable, excluded, disadvantaged, alienated or have excep- tional needs”—in this sense the public heath gains (i.e., the client who is not in the room/clinic) fits with professional ethics. However the practice of allowing a choice for the client and the responsibility of all people (not just PLHIV) to be safe should be paramount.

Conclusion

This questionnaire and analysis reported many social workers’ beliefs, perceptions, and practices working under the Strategy in NSW. The results indicate that while frontline

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workers find the Strategy works for large sectors of the HIV population, the assumptions underpinning it result in many individuals being inadequately catered for. A key concern is that a newly stigmatised group of people are being marginalised when they are not able to take ART. The dominance of the biomedical model detracts from psychosocial approaches and can simplify the complex realms of people’s lives.

Social workers have been involved in the HIV epidemic in NSW since the outset of the disease, whether in casework and counselling, policy development, or community activism and advocacy. This article has highlighted respondents’ concerns about the implications of certain aspects of policy making and implementation upon social work practices and PLHIV. The voice of the marginalised, oppressed, and poor are drowned out by the push towards treatment for all. Respondents showed concern about the silencing of the psychosocial voice and the hegemonic nature of the biomedical approach. While there is broad agreement that the biomedical approach is important and has made great differ- ences to the lives of PLHIV, it is argued that a balance needs to be returned to, encompass- ing the tried and tested successful psychosocial interventions utilised by social workers in the field for nearly 30 years.

NSW has historically managed to contain HIV to relatively small numbers, working in partnership with affected individuals and communities. Now, for a jurisdiction to aim to eliminate HIV transmission is quite remarkable and, until recently, only a dream. This is in contrast to countries in the developed world who are still struggling with poor social determinants of health.

It is proposed that a more holistic strategy including the psychosocial realities that inform HIV transmission, testing and treatment options, and adherence be adopted. Con- tinued research is needed into the impact of the current Strategy and treatment as preven- tion upon PLHIV and the role stigma, including selfstigma, will play in access to testing, beginning treatment, and ART adherence. The expertise and experience of social workers needs to be harnessed in the development and implementation of future strategies. If social workers do not have a voice then we will not be heard.

References

Aggleton, P. & Kippax, S. (2014). Australia’s HIV-prevention response: Introduction to the special issue. AIDS Education and Prevention, 26(3), 187–190.

Australian Association of Social Workers. (2010). Code of ethics. Kingston, ACT: Australian Association of Social Workers.

Bowen, E. (2013). AIDS at 30: Implications for social work education. Journal of Social Work Education, 49(2), 265–276.

Earnshaw, V. A., Smith, L. R., Chaudoir, S. R., Amico, K. R., & Copenhaver, M. M. (2013). HIV stigma mechanisms and well-being among PLWH: A test of the HIV stigma framework. AIDS and Behavior, 17(5), 1785–1795.

Fox, J., White, P. J., Macdonald, N., Weber, J., McClure, M., Fidler, S., & Ward H. (2009). Reductions in HIV transmission risk behaviour following diagnosis of primary HIV infection: A cohort of high-risk men who have sex with men. HIV Medicine, 10(7), 432–438.

Grant, I., Franklin, D. R., Deutsch, R., Woods, S. P., Vaida, F., Ellis, R. J., … Heaton, R. K. (2014). Asymptomatic HIV-associated neurocognitive impairment increases risk for symptomatic decline. Neurology, 82(23), 2055–2062.

Humble, M. N., Bride, B. E., Kolomer, S. R., & Reeves, P. M. (2012). Evolution of a virus: The framing of HIV/AIDS in social work journals. Social Work, 57(4), 371–376.

102 G. HAMPTON ET AL.

Ka’opua, L. S., & Linsk, N. L. (2007). Introduction. Journal of HIV/AIDS & Social Services, 6(1-2), 1–8.

Katz, I. T., Ryu, A. E., Onuegbu, A. G., Psaros, C., Weiser S. D., Bangsberg, D. R., & Tsai, A. C. (2013). Impact of HIV-related stigma on treatment adherence: Systematic review and meta-syn- thesis. Journal of the International AIDS Society, 16(3 Suppl 2), 18640.

Kippax, S. (2012). Effective HIV prevention: The indispensable role of social science. Journal of the International AIDS Society, 15(2), 17357. doi:10.7448/IAS.15.2.17357

Kippax, S. & Stephenson, N. (2012) Beyond the distinction between biomedical and social dimen- sions of HIV: Prevention through the lens of social public health, American Journal of Public Health, 102(5), 789–799.

Kull, R. M. (2010). HIV history, illness, transmission and treatment. In C. C. Poindexter (Ed.), Handbook of HIV and social work: Principles, practice and populations (pp. 3–30). New Jersey: Wiley & Sons.

Linsk, N. L. (2011). Thirty years into the HIV epidemic: Social work perspectives and prospects. Journal of HIV/AIDS & Social Services, 10(3), 218–229.

Linsk, N. L. (2012). Living with HIV and care and support: Implications for social work services. Journal of HIV/AIDS & Social Services, 11(1), 1–5.

Lowth, A., Yallop, S., Reid, J., & Fitzgerald, M. (1999). Looking beyond the optimism surrounding new treatments: Issues for HIV service providers and people living with HIV. Australian Social Work, 52(3), 31–36.

Neurological disorders strikingly high among HIV/AIDS patients. “They assumed [it] would go away, but that’s not the case”. (2011). AIDS Alert, 26(11), 121–2, 124–5.

NSW Ministry of Health. (2012). NSW HIV Strategy 2012–2015: A new era. North Sydney: Author. O’Donnell, D., Grulich, A., Garsia, R., Parkhill, N., & Browne, K. (2010). HIV in Australia. NSW

Public Health Bulletin, North Sydney, 21, 3–4. The Albion Centre. (2012). A HIV/AIDS timeline: Emphasising the Australian/New South Wales

perspective. The origins of HIV (6th ed.). Sydney, NSW: The Albion Centre. The Kirby Institute. (2014). HIV, viral hepatitis and sexually transmissible infections in Australia

Annual Surveillance Report 2014. Sydney, NSW: Author. Tozzi, V., Balestra, P., Bellagamba, R., Corpolongo, A., Salvatori, M. F., Visco-Comandini, U., …

Narciso, P. (2007). Persistence of neuropsychologic deficits despite long-term highly active anti- retroviral therapy in patients with HIV-related neurocognitive impairment: Prevalence and risk factors. Journal of Acquired Immune Deficiency Syndromes, 45(2), 174–182.

Whittaker, B. (2011). Australia should lead a global HIV prevention revolution. HIV Australia, 9(3), 7–8.

World Health Organization. (2015). Media Centre HIV/AIDS Factsheet. Retrieved 1 August 2015 from http://www.who.int/mediacentre/factsheets/fs360/en/

Yallop, S., Lowth, A., Fitzgerald, M., Reid, J., & Morelli, A. (2002). The changing world of HIV care: The impact on health professionals. Culture, Health and Sexuality, 4(4), 431–441.

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