Co-locating art and health: engaging civil society to create an enabling environment to respond to HIV in Indonesia.

Background This paper will report on the successful co-location of a community-based arts and sexual health project that aimed to engage, educate and create testing, treatment and care pathways at a co-located mobile sexual health clinic and community-controlled art gallery in Yogyakarta, Indonesia. METHODS: Mixed methods were used to evaluate the project, including a visitor (n = 1181) and artist (n = 85) log book, a convenience audience survey (n = 231), and qualitative semi-structured interviews (n = 13) with artists and audience to explore the effect of arts-based activities on access to sexual health information and services, and stigma and discrimination. RESULTS: In total, 85 artists curated five separate exhibitions that were attended by 1181 people, of which 62% were aged ≤24 years. Gallery attendance improved awareness and participatory and interactive engagement with sexual health information through a medium described as interesting, fun, cool, and unique. The co-located clinic facilitated informal pathways to sexual health services, including HIV/AIDS testing, treatment, and care. Importantly, the project created shared understandings and empathy that challenged stereotypes and myths, reducing stigmatising beliefs and practices. CONCLUSIONS: Arts-based programs are transformative and can be effectively implemented, replicated and scaled up in low-resource settings to create awareness and initiate for HIV prevention, testing, treatment, and care. Art-based health programs engages people in their communities, mobilises civil society, builds enabling environments to reduce stigma and discrimination and improves access to testing and prevention; essential features needed to end AIDS in Indonesia (and the Southeast Asia region) while improving the lives of those most vulnerable to infection.

HPV vaccination in Papua New Guinea to prevent cervical cancer in women: Gender, sexual morality, outsiders and the de-feminization of the HPV vaccine.

Papua New Guinea has among the highest estimated burden of cervical cancer globally, but currently lacks national cervical screening or human papillomavirus (HPV) vaccination programmes. The Papua New Guinean government is committed to introducing the HPV vaccine for primary prevention, but locally-relevant research evidence is not available to guide implementation. Experience from earlier Papua New Guinean health programmes suggests that appropriate engagement with local health cosmologies and cultures for health/wellbeing, illness/disease, and recognition of the role of 'outsiders' in preventing, promoting or contributing to sickness, are essential to the successful introduction of biomedical interventions in this setting. We describe findings from a multi-site qualitative study undertaken in three provinces in Papua New Guinea (2012-14). Twenty-one gender specific focus group discussions and 82 semi-structured interviews, with a total of 208 participants, were conducted. There was strong community support for the introduction of the HPV vaccine for cervical cancer prevention in Papua New Guinea. Significantly, and despite being officially discussed in the context of a planned future intervention focusing on vaccinating young girls to prevent cervical cancer, the intervention was de-feminised, where both girls and boys were supported to be vaccinated in any HPV programme in Papua New Guinea.

'Good enough' parenting: Negotiating standards and stigma.

BACKGROUND: Policy concern with families has led to the framing of 'good parenting' as a skill set that parents must acquire while 'poor parenting' is linked to a raft of social problems, including child maltreatment. A range of professionals are responsible for monitoring parents for evidence of 'poor parenting', and for reporting those parents to statutory child protection authorities. Little is known about how parents in vulnerable circumstances negotiate these dual pressures of 'good parenting' and surveillance. METHODS: Eight parents who use drugs were interviewed about raising children well. The data is drawn from a project that used a positive deviance approach to understand the practices and norms that contribute to positive child outcomes in communities where positive outcomes are unexpected or statistically anomalous. RESULTS: Parents use a range of strategies to minimise risk of harm from drug use. Participants resist negative stereotypes that portray their parenting primarily in terms of risk; and in contrast to previous research, describe feelings of guilt but not shame. Systemic barriers to safe environments include the nature of illicit drug markets and the surveillance and policing responsibilities of service agencies. CONCLUSION: The findings contribute to an understanding of safe and competent parenting by parents who use drugs and highlight how drug laws and fear of intervention can work against the creation of safe family environments.

"We get by with a little help from our friends": Small-scale informal and large-scale formal peer distribution networks of sterile injecting equipment in Australia.

BACKGROUND: In Australia, sterile needles and syringes are distributed to people who inject drugs (PWID) through formal services for the purposes of preventing blood borne viruses (BBV). Peer distribution involves people acquiring needles from formal services and redistributing them to others. This paper investigates the dynamics of the distribution of sterile injecting equipment among networks of people who inject drugs in four sites in New South Wales (NSW), Australia. METHODS: Qualitative data exploring the practice of peer distribution were collected through in-depth, semi-structured interviews and participatory social network mapping. These interviews explored injecting equipment demand, access to services, relationship pathways through which peer distribution occurred, an estimate of the size of the different peer distribution roles and participants' understanding of the illegality of peer distribution in NSW. RESULTS: Data were collected from 32 participants, and 31 (98%) reported participating in peer distribution in the months prior to interview. Of those 31 participants, five reported large-scale formal distribution, with an estimated volume of 34,970 needles and syringes annually. Twenty-two participated in reciprocal exchange, where equipment was distributed and received on an informal basis that appeared dependent on context and circumstance and four participants reported recipient peer distribution as their only access to sterile injecting equipment. Most (n=27) were unaware that it was illegal to distribute injecting equipment to their peers. CONCLUSION: Peer distribution was almost ubiquitous amongst the PWID participating in the study, and although five participants reported taking part in the highly organised, large-scale distribution of injecting equipment for altruistic reasons, peer distribution was more commonly reported to take place in small networks of friends and/or partners for reasons of convenience. The law regarding the illegality of peer distribution needs to change so that NSPs can capitalise on peer distribution to increase the options available to PWID and to acknowledge PWID as essential harm reduction agents in the prevention of BBVs.

Care and treatment of hepatitis C among Aboriginal people in New South Wales, Australia: implications for the implementation of new treatments.

INTRODUCTION: Despite Aboriginal Australians being over-represented in populations of people living with hepatitis C (HCV), there is a dearth of research to guide policy and programme development in the area of care and treatment, particularly relating to new HCV treatments. METHOD: In-depth interviews were conducted with 39 people identifying as Aboriginal Australians and living with HCV in New South Wales. RESULTS: Participants' experiences were characterised by a lack of detailed or appropriate information provided at diagnosis, high levels of stigma associated with HCV and low overall knowledge of HCV as reported for themselves and their communities. Despite poor diagnosis experiences, participants had undertaken changes to their lifestyle, especially in relation to alcohol use, in order to promote liver health. Concerns about treatment side effects and efficacy impacted participants' decisions to undertake treatment. Eleven participants had undertaken HCV treatment in a variety of care models with a peer worker and in prison. CONCLUSIONS: The similarities between concerns and experiences of Aboriginal people and other populations living with HCV do not suggest that services and strategies to engage these populations should also be the same. These results suggest that further engagement of the primary care sector in HCV care is important as well as increasing Aboriginal community knowledge of HCV. A variety of service models should be available to meet individuals' preferences, including those offered within Aboriginal community controlled health services emphasising holistic notions of health, and supported by information and communication programmes using principles of health literacy relevant to Aboriginal people.

A qualitative study trialling the acceptability of new hepatitis C prevention messages for people who inject drugs: symbiotic messages, pleasure and conditional interpretations.

AIM: Prevention of hepatitis C (HCV) remains a public health challenge. A new body of work is emerging seeking to explore and exploit "symbiotic goals" of people who inject drugs (PWID). That is, strategies used by PWID to achieve other goals may be doubly useful in facilitating the same behaviours (use of sterile injecting equipment) required to prevent HCV. This project developed and trialled new HCV prevention messages based on the notion of symbiotic messages. METHOD: New HCV prevention messages were developed in a series of 12 posters after consultation with staff from needle and syringe programs (NSPs) and a drug user organisation. Two posters were displayed each week for a 6-week period within one NSP. NSP staff and clients were invited to focus groups to discuss their responses to the posters. RESULTS: A total of four focus groups were conducted; one group of seven staff members and three groups of clients with a total of 21 participants. Responses to each of the posters were mixed. Staff and clients interpreted messages in literal ways rather than as dependent on context, with staff concerned that not all HCV prevention information was included in any one message; while clients felt that some messages were misleading in relation to the expectations of pleasure. Clients appreciated the efforts to use bright imagery and messages that included acknowledgement of pleasure. Clients were not aware of some harm reduction information contained in the messages (such as "shoot to the heart"), and this generated potential for misunderstanding of the intended message. Clients felt that any message provided by the NSP could be trusted and did not require visible endorsement by health departments. CONCLUSIONS: While the logic of symbiotic messages is appealing, it is challenging to produce eye-catching, brief messages that provide sufficient information to cover the breadth of HCV prevention. Incorporation of symbiotic messages in conversations or activities between staff and clients may provide opportunities for these messages to be related to the clients' needs and priorities and for staff to provide HCV prevention information in accord with their professional ethos.

The politics of place(ment): problematising the provision of hepatitis C treatment within opiate substitution clinics.

The hepatitis C virus (HCV) epidemic is a significant public health challenge in Australia. Current initiatives to expand access to HCV treatment focus on opiate substitution therapy (OST) settings where the prevalence of hepatitis C among clients is high. In Australia, the provision of OST for many clients is via large clinics, with an estimated median of 150 clients per service. Conceptually informed by the work of Michel Foucault, our analysis of the proposed integrated treatment model focuses on the critical but overlooked question of organisational culture and power operating within OST. We argue that the specific context of OST not merely reflects but actively participates in the political economy of social exclusion via which the socio-spatial segregation and stigmatisation of the service user as 'drug user' is enacted. This paper analyses data collected from two samples during 2008/9: OST clients living in New South Wales, Australia and a range of OST health professionals working in Australian settings. In total, 27 interviews were conducted with current OST clients; 19 by phone and 8 face-to-face. One focus group and 16 telephone interviews were conducted with OST health professionals. Our analysis of key themes emerging from the interview data suggests that the successful introduction of HCV treatment within the OST clinic is not a given. We are concerned that particular areas of tension, if not explicit contradiction, have been overlooked in current research and debates informing the proposed combination treatment model. We question the appropriateness of co-locating a notoriously arduous, exacting treatment (HCV) within the highly surveillant and regulatory environment of OST. While applauding the intention to improve access to HCV care and treatment for people who inject drugs we caution against a treatment model that risks further entrenching (socio-spatial) stigmatisation amongst those already experiencing significant marginalisation.

A diagnosis of hepatitis C - insights from a study on patients' experiences.

BACKGROUND: Previous research has documented patient experiences of hepatitis C virus (HCV) diagnosis to be without sufficient pretest and post-test discussions - health professionals have expressed a need for training in this area. OBJECTIVE: This study aimed to examine the diagnosis experiences of 24 people diagnosed with HCV in the preceding 2 years. METHODS: Face-to-face interviews of 24 participants (recruited through advertising) were conducted. RESULTS: Overall, the HCV diagnosis experience of participants was poor. Participant narratives of HCV diagnosis were characterised by confusion in relation to tests that were performed and the implications of test results. Post-test discussions were inadequate - there was a reported lack of information, support and referral provided to participants. DISCUSSION: Most clinicians do not receive specialised training in hepatitis C but may be involved in diagnoses in their careers. The impact of negative diagnosis experiences for patients can be serious and long term. These findings highlight areas of suboptimal diagnosis experience and suggest training and support needs of health professionals.