Experienced Researcher & Evaluator with a Doctor of Philosophy - PhD focused in Sociology of Health from Centre for Social Research in Health at the University of New South Wales (UNSW) and Master of Policy Studies (Evaluation) also from UNSW. Demonstrated history of working in academic, government and NGO and skilled in research & evaluation design and policy analysis. Currently working on research projects in the Asia Pacific in public health, sexual and reproductive health rights, blood-borne viruses, intersectionality, community participation/partnerships and research ethics
Objective:
The type of health education messages that communities and individuals seek to have c... more Objective:
The type of health education messages that communities and individuals seek to have communicated about the human papillomavirus (HPV) vaccine is important if vaccine programmes are to succeed, especially in settings such as Papua New Guinea (PNG), which have a high burden of cervical cancer, low health literacy and negative experiences of earlier vaccination programmes. This study sought to identify the health education messages that are viewed as most appropriate in such a context. Methodology:
A qualitative study using gender-specific focus group discussions (N = 21) and semi-structured interviews (N = 82) was undertaken in three sites in PNG. Sites included both rural and urban locations in Milne Bay, Eastern Highlands and Western Highlands Provinces. Results:
Two divergent discourses emerged. One group of participants, largely young people, felt communication messages should stress that HPV is a preventable sexually transmitted infection, which can cause cervical cancer. The other group, mainly members of the older population, believed that messaging should focus on the vaccine as a prevention strategy for cervical cancer. A small minority wanted both aspects of the vaccine discussed. Conclusion:
Sensitivity needs to be taken when engaging with communities which have negative experiences of earlier infant immunisation programmes. Ensuring that the health communication needs and priorities of different sections of the populations are taken into account is key to the successful introduction and roll-out of HPV vaccination in this setting.
Papua New Guinea has among the highest estimated burden of cervical cancer globally, but currentl... more 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.
Background: In Australia, sterile needles and syringes are distributed to people who inject drug... more 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.
Keywords: Bloodborne virus; Injecting drug use; Secondary syringe exchange; Peer distribution; Needle and Syringe Program; Australia
Hepatitis C (HCV) is a stigmatised disease due, in part, to an association with injecting drug us... more Hepatitis C (HCV) is a stigmatised disease due, in part, to an association with injecting drug use. Aboriginal Australians, a stigmatised group, are over-represented in patterns of HCV infections. We examined the experience of Aboriginal Australians living with HCV using qualitative in-depth interviews, paying particular attention to instances where multiple stigma mechanisms (relating to HCV, injecting drug use and Aboriginal identity) overlapped. Stigma held a central role in the experience of most of the 39 participants with reports of exclusion and alienation from families and communities. HCV-related stigma was accompanied by the notion of ‘shame’ which holds deep cultural significance for Aboriginal people. Participants’ accounts revealed overlapping stigma in their perception that others ‘automatically’ expect Aboriginal people to have a stigmatised disease such as HCV. HCV as a contemporary expression of colonisation was also woven into accounts of HCV-related stigma. Interventions to reduce HCV stigma should be specifically designed for minority populations to account for multiple, overlapping sources of stigma.
Introduction. Despite Aboriginal Australians being over-represented in populations of people livi... more 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.
Aim Prevention of hepatitis C (HCV) remains a public health challenge. A new body of work is emer... more 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.
Introduction. Despite Aboriginal Australians being over-represented in populations of people livi... more 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.
The hepatitis C virus (HCV) epidemic is a significant public health challenge in Australia. Curre... more 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.
The National Hepatitis C Testing Policy3 (Table 1) provides guidance on management of the diagnos... more The National Hepatitis C Testing Policy3 (Table 1) provides guidance on management of the diagnosis experience (ie. states which tests should be used, that pretest and post-test discussions are fundamental to the diagnosis experience, and outlines the issues that should be ...
Improving and scaling up access to sterile injection equipment for people who inject drugs (PWID)... more Improving and scaling up access to sterile injection equipment for people who inject drugs (PWID) is necessary to prevent transmission of hepatitis C. One alternative model is peer distribution, which is the term used for peer-based distribution of sterile injection equipment. However, in New South Wales this form of distribution is illegal and there has been little research in Australia into its application and effectiveness.
The aim of this study was to assess the extent of peer distribution in an attempt to understand the reasons why PWID participate in peer distribution and to document the strengths and weaknesses of this form of distribution. Using a qualitative methodology, 34 in-depth interviews were conducted with PWID in New South Wales in four metropolitan and regional study sites.
The results from this study highlighted that peer distribution is a common and effective model of sterile injection equipment distribution. It is an organic process located in the social networks and relationships of PWID. Peer distribution takes on many forms. In some cases, it was an ad-hoc and informal activity. In other cases peer distribution involved large scale distribution, was highly organised and, although unregulated, was managed by a moral economy of people wanting to make sure their peers are healthy and not exposed to blood-borne viruses.
Improving access to meet the demand for sterile injection equipment requires alternative models of distribution that are appropriate to the needs and preferences of PWID. Peer distribution is one alternative. It is a pre-existing model of sterile injection equipment distribution and one that is able to remove the barriers associated with accessing equipment from existing services. It is cost-effective and has extensive outreach. However, until peer distribution is legitimised and legalised, it will continue to go unnoticed, uncounted and unattributed.
Drug use, in most cases, takes place in a social environment. However, little research has been ... more Drug use, in most cases, takes place in a social environment. However, little research has been undertaken on the impact of social networks on individual hepatitis C virus (HCV) risk behaviours and how social network factors interplay with the broader structural influences of HCV harm reduction. This study interviewed 34 people who inject drugs (PWID) in four metropolitan and regional study sites. The results have highlighted that PWID social networks are an effective way to transfer harm reduction messages. However, PWID social networks were somewhat ineffective for HCV information transfer because in the majority of cases, these discussions were completely absent. This absence was explained by the real, or perceived, consequences of stigma, prejudice or social and economic exclusion that resulted from participating in discussions about HCV. Participants identified that non-verbal exchange, such as secondary syringe exchange (SSE), was effective in overcoming HCV discussion barriers. However, SSE is an illegal form of equipment distribution in NSW. This data highlighted that although the HCV epidemic may still be somewhat ‘silent’, social network-based activities such as SSE are effective and should be legitimatised so that they can be further utilised in HCV peer education and harm reduction initiatives.
In Australia, peer education is a commonly used harm reduction strategy for the prevention of blo... more In Australia, peer education is a commonly used harm reduction strategy for the prevention of blood-borne viruses, such as hepatitis C, in people who inject drugs (PWID). It aims to improve the health and wellbeing of people who use drugs by minimising the adverse health, social and economic consequences associated with drug use.
The paper presents the findings from the study. The study aim was to understand how informal exchanges in PWID social networks impact on hepatitis C harm reduction. Using a qualitative methodology grounded in social and network theory, 38 in-depth interviews were conducted with PWID in 4 New South Wales sites, including Sydney City, Liverpool, Lismore and Newcastle. Social network mapping was used to document the composition and relationships of the social networks and informal discussions documented the informal, day-to-day informal discussions and exchanges that occurred with respect to social network relationships, injecting drug use, hepatitis C and health.
The results from the study highlighted that PWID social networks are an effective way to transfer harm reduction messages and health information to PWID who may not otherwise come into contact with health services, especially young people and people from CALD backgrounds. However, irrespective of network connection factors, such as trust and obligation, PWID social networks were somewhat ineffective for hepatitis C information transfer. This was because in the majority of cases hepatitis C discussions were completely absent from informal discussion. This absence of discussion was explained by the real, or perceived, consequences of stigma, prejudice or social and economic exclusion that resulted from initiating discussions about hepatitis C in people’s social networks.
Objective:
The type of health education messages that communities and individuals seek to have c... more Objective:
The type of health education messages that communities and individuals seek to have communicated about the human papillomavirus (HPV) vaccine is important if vaccine programmes are to succeed, especially in settings such as Papua New Guinea (PNG), which have a high burden of cervical cancer, low health literacy and negative experiences of earlier vaccination programmes. This study sought to identify the health education messages that are viewed as most appropriate in such a context. Methodology:
A qualitative study using gender-specific focus group discussions (N = 21) and semi-structured interviews (N = 82) was undertaken in three sites in PNG. Sites included both rural and urban locations in Milne Bay, Eastern Highlands and Western Highlands Provinces. Results:
Two divergent discourses emerged. One group of participants, largely young people, felt communication messages should stress that HPV is a preventable sexually transmitted infection, which can cause cervical cancer. The other group, mainly members of the older population, believed that messaging should focus on the vaccine as a prevention strategy for cervical cancer. A small minority wanted both aspects of the vaccine discussed. Conclusion:
Sensitivity needs to be taken when engaging with communities which have negative experiences of earlier infant immunisation programmes. Ensuring that the health communication needs and priorities of different sections of the populations are taken into account is key to the successful introduction and roll-out of HPV vaccination in this setting.
Papua New Guinea has among the highest estimated burden of cervical cancer globally, but currentl... more 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.
Background: In Australia, sterile needles and syringes are distributed to people who inject drug... more 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.
Keywords: Bloodborne virus; Injecting drug use; Secondary syringe exchange; Peer distribution; Needle and Syringe Program; Australia
Hepatitis C (HCV) is a stigmatised disease due, in part, to an association with injecting drug us... more Hepatitis C (HCV) is a stigmatised disease due, in part, to an association with injecting drug use. Aboriginal Australians, a stigmatised group, are over-represented in patterns of HCV infections. We examined the experience of Aboriginal Australians living with HCV using qualitative in-depth interviews, paying particular attention to instances where multiple stigma mechanisms (relating to HCV, injecting drug use and Aboriginal identity) overlapped. Stigma held a central role in the experience of most of the 39 participants with reports of exclusion and alienation from families and communities. HCV-related stigma was accompanied by the notion of ‘shame’ which holds deep cultural significance for Aboriginal people. Participants’ accounts revealed overlapping stigma in their perception that others ‘automatically’ expect Aboriginal people to have a stigmatised disease such as HCV. HCV as a contemporary expression of colonisation was also woven into accounts of HCV-related stigma. Interventions to reduce HCV stigma should be specifically designed for minority populations to account for multiple, overlapping sources of stigma.
Introduction. Despite Aboriginal Australians being over-represented in populations of people livi... more 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.
Aim Prevention of hepatitis C (HCV) remains a public health challenge. A new body of work is emer... more 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.
Introduction. Despite Aboriginal Australians being over-represented in populations of people livi... more 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.
The hepatitis C virus (HCV) epidemic is a significant public health challenge in Australia. Curre... more 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.
The National Hepatitis C Testing Policy3 (Table 1) provides guidance on management of the diagnos... more The National Hepatitis C Testing Policy3 (Table 1) provides guidance on management of the diagnosis experience (ie. states which tests should be used, that pretest and post-test discussions are fundamental to the diagnosis experience, and outlines the issues that should be ...
Improving and scaling up access to sterile injection equipment for people who inject drugs (PWID)... more Improving and scaling up access to sterile injection equipment for people who inject drugs (PWID) is necessary to prevent transmission of hepatitis C. One alternative model is peer distribution, which is the term used for peer-based distribution of sterile injection equipment. However, in New South Wales this form of distribution is illegal and there has been little research in Australia into its application and effectiveness.
The aim of this study was to assess the extent of peer distribution in an attempt to understand the reasons why PWID participate in peer distribution and to document the strengths and weaknesses of this form of distribution. Using a qualitative methodology, 34 in-depth interviews were conducted with PWID in New South Wales in four metropolitan and regional study sites.
The results from this study highlighted that peer distribution is a common and effective model of sterile injection equipment distribution. It is an organic process located in the social networks and relationships of PWID. Peer distribution takes on many forms. In some cases, it was an ad-hoc and informal activity. In other cases peer distribution involved large scale distribution, was highly organised and, although unregulated, was managed by a moral economy of people wanting to make sure their peers are healthy and not exposed to blood-borne viruses.
Improving access to meet the demand for sterile injection equipment requires alternative models of distribution that are appropriate to the needs and preferences of PWID. Peer distribution is one alternative. It is a pre-existing model of sterile injection equipment distribution and one that is able to remove the barriers associated with accessing equipment from existing services. It is cost-effective and has extensive outreach. However, until peer distribution is legitimised and legalised, it will continue to go unnoticed, uncounted and unattributed.
Drug use, in most cases, takes place in a social environment. However, little research has been ... more Drug use, in most cases, takes place in a social environment. However, little research has been undertaken on the impact of social networks on individual hepatitis C virus (HCV) risk behaviours and how social network factors interplay with the broader structural influences of HCV harm reduction. This study interviewed 34 people who inject drugs (PWID) in four metropolitan and regional study sites. The results have highlighted that PWID social networks are an effective way to transfer harm reduction messages. However, PWID social networks were somewhat ineffective for HCV information transfer because in the majority of cases, these discussions were completely absent. This absence was explained by the real, or perceived, consequences of stigma, prejudice or social and economic exclusion that resulted from participating in discussions about HCV. Participants identified that non-verbal exchange, such as secondary syringe exchange (SSE), was effective in overcoming HCV discussion barriers. However, SSE is an illegal form of equipment distribution in NSW. This data highlighted that although the HCV epidemic may still be somewhat ‘silent’, social network-based activities such as SSE are effective and should be legitimatised so that they can be further utilised in HCV peer education and harm reduction initiatives.
In Australia, peer education is a commonly used harm reduction strategy for the prevention of blo... more In Australia, peer education is a commonly used harm reduction strategy for the prevention of blood-borne viruses, such as hepatitis C, in people who inject drugs (PWID). It aims to improve the health and wellbeing of people who use drugs by minimising the adverse health, social and economic consequences associated with drug use.
The paper presents the findings from the study. The study aim was to understand how informal exchanges in PWID social networks impact on hepatitis C harm reduction. Using a qualitative methodology grounded in social and network theory, 38 in-depth interviews were conducted with PWID in 4 New South Wales sites, including Sydney City, Liverpool, Lismore and Newcastle. Social network mapping was used to document the composition and relationships of the social networks and informal discussions documented the informal, day-to-day informal discussions and exchanges that occurred with respect to social network relationships, injecting drug use, hepatitis C and health.
The results from the study highlighted that PWID social networks are an effective way to transfer harm reduction messages and health information to PWID who may not otherwise come into contact with health services, especially young people and people from CALD backgrounds. However, irrespective of network connection factors, such as trust and obligation, PWID social networks were somewhat ineffective for hepatitis C information transfer. This was because in the majority of cases hepatitis C discussions were completely absent from informal discussion. This absence of discussion was explained by the real, or perceived, consequences of stigma, prejudice or social and economic exclusion that resulted from initiating discussions about hepatitis C in people’s social networks.
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Papers by Jamee M Newland
The type of health education messages that communities and individuals seek to have communicated about the human papillomavirus (HPV) vaccine is important if vaccine programmes are to succeed, especially in settings such as Papua New Guinea (PNG), which have a high burden of cervical cancer, low health literacy and negative experiences of earlier vaccination programmes. This study sought to identify the health education messages that are viewed as most appropriate in such a context.
Methodology:
A qualitative study using gender-specific focus group discussions (N = 21) and semi-structured interviews (N = 82) was undertaken in three sites in PNG. Sites included both rural and urban locations in Milne Bay, Eastern Highlands and Western Highlands Provinces.
Results:
Two divergent discourses emerged. One group of participants, largely young people, felt communication messages should stress that HPV is a preventable sexually transmitted infection, which can cause cervical cancer. The other group, mainly members of the older population, believed that messaging should focus on the vaccine as a prevention strategy for cervical cancer. A small minority wanted both aspects of the vaccine discussed.
Conclusion:
Sensitivity needs to be taken when engaging with communities which have negative experiences of earlier infant immunisation programmes. Ensuring that the health communication needs and priorities of different sections of the populations are taken into account is key to the successful introduction and roll-out of HPV vaccination in this setting.
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.
Keywords: Bloodborne virus; Injecting drug use; Secondary syringe exchange; Peer distribution; Needle and Syringe Program; Australia
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.
Talks by Jamee M Newland
The aim of this study was to assess the extent of peer distribution in an attempt to understand the reasons why PWID participate in peer distribution and to document the strengths and weaknesses of this form of distribution. Using a qualitative methodology, 34 in-depth interviews were conducted with PWID in New South Wales in four metropolitan and regional study sites.
The results from this study highlighted that peer distribution is a common and effective model of sterile injection equipment distribution. It is an organic process located in the social networks and relationships of PWID. Peer distribution takes on many forms. In some cases, it was an ad-hoc and informal activity. In other cases peer distribution involved large scale distribution, was highly organised and, although unregulated, was managed by a moral economy of people wanting to make sure their peers are healthy and not exposed to blood-borne viruses.
Improving access to meet the demand for sterile injection equipment requires alternative models of distribution that are appropriate to the needs and preferences of PWID. Peer distribution is one alternative. It is a pre-existing model of sterile injection equipment distribution and one that is able to remove the barriers associated with accessing equipment from existing services. It is cost-effective and has extensive outreach. However, until peer distribution is legitimised and legalised, it will continue to go unnoticed, uncounted and unattributed.
The paper presents the findings from the study. The study aim was to understand how informal exchanges in PWID social networks impact on hepatitis C harm reduction. Using a qualitative methodology grounded in social and network theory, 38 in-depth interviews were conducted with PWID in 4 New South Wales sites, including Sydney City, Liverpool, Lismore and Newcastle. Social network mapping was used to document the composition and relationships of the social networks and informal discussions documented the informal, day-to-day informal discussions and exchanges that occurred with respect to social network relationships, injecting drug use, hepatitis C and health.
The results from the study highlighted that PWID social networks are an effective way to transfer harm reduction messages and health information to PWID who may not otherwise come into contact with health services, especially young people and people from CALD backgrounds. However, irrespective of network connection factors, such as trust and obligation, PWID social networks were somewhat ineffective for hepatitis C information transfer. This was because in the majority of cases hepatitis C discussions were completely absent from informal discussion. This absence of discussion was explained by the real, or perceived, consequences of stigma, prejudice or social and economic exclusion that resulted from initiating discussions about hepatitis C in people’s social networks.
The type of health education messages that communities and individuals seek to have communicated about the human papillomavirus (HPV) vaccine is important if vaccine programmes are to succeed, especially in settings such as Papua New Guinea (PNG), which have a high burden of cervical cancer, low health literacy and negative experiences of earlier vaccination programmes. This study sought to identify the health education messages that are viewed as most appropriate in such a context.
Methodology:
A qualitative study using gender-specific focus group discussions (N = 21) and semi-structured interviews (N = 82) was undertaken in three sites in PNG. Sites included both rural and urban locations in Milne Bay, Eastern Highlands and Western Highlands Provinces.
Results:
Two divergent discourses emerged. One group of participants, largely young people, felt communication messages should stress that HPV is a preventable sexually transmitted infection, which can cause cervical cancer. The other group, mainly members of the older population, believed that messaging should focus on the vaccine as a prevention strategy for cervical cancer. A small minority wanted both aspects of the vaccine discussed.
Conclusion:
Sensitivity needs to be taken when engaging with communities which have negative experiences of earlier infant immunisation programmes. Ensuring that the health communication needs and priorities of different sections of the populations are taken into account is key to the successful introduction and roll-out of HPV vaccination in this setting.
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.
Keywords: Bloodborne virus; Injecting drug use; Secondary syringe exchange; Peer distribution; Needle and Syringe Program; Australia
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.
The aim of this study was to assess the extent of peer distribution in an attempt to understand the reasons why PWID participate in peer distribution and to document the strengths and weaknesses of this form of distribution. Using a qualitative methodology, 34 in-depth interviews were conducted with PWID in New South Wales in four metropolitan and regional study sites.
The results from this study highlighted that peer distribution is a common and effective model of sterile injection equipment distribution. It is an organic process located in the social networks and relationships of PWID. Peer distribution takes on many forms. In some cases, it was an ad-hoc and informal activity. In other cases peer distribution involved large scale distribution, was highly organised and, although unregulated, was managed by a moral economy of people wanting to make sure their peers are healthy and not exposed to blood-borne viruses.
Improving access to meet the demand for sterile injection equipment requires alternative models of distribution that are appropriate to the needs and preferences of PWID. Peer distribution is one alternative. It is a pre-existing model of sterile injection equipment distribution and one that is able to remove the barriers associated with accessing equipment from existing services. It is cost-effective and has extensive outreach. However, until peer distribution is legitimised and legalised, it will continue to go unnoticed, uncounted and unattributed.
The paper presents the findings from the study. The study aim was to understand how informal exchanges in PWID social networks impact on hepatitis C harm reduction. Using a qualitative methodology grounded in social and network theory, 38 in-depth interviews were conducted with PWID in 4 New South Wales sites, including Sydney City, Liverpool, Lismore and Newcastle. Social network mapping was used to document the composition and relationships of the social networks and informal discussions documented the informal, day-to-day informal discussions and exchanges that occurred with respect to social network relationships, injecting drug use, hepatitis C and health.
The results from the study highlighted that PWID social networks are an effective way to transfer harm reduction messages and health information to PWID who may not otherwise come into contact with health services, especially young people and people from CALD backgrounds. However, irrespective of network connection factors, such as trust and obligation, PWID social networks were somewhat ineffective for hepatitis C information transfer. This was because in the majority of cases hepatitis C discussions were completely absent from informal discussion. This absence of discussion was explained by the real, or perceived, consequences of stigma, prejudice or social and economic exclusion that resulted from initiating discussions about hepatitis C in people’s social networks.