Copies of this report or any other publications from this project may be obtained by contacting:

Papua New Guinea Institute of Medical Research

PO Box 60 Goroka EHP 441 Papua New Guinea

Telephone: +675 532 2800 Fax: +675 532 1998 Email: [email protected] Website: http://www.pngimr.org.pg

School of Public Health and Community Medicine

University of New South Wales Level 2, Samuels Building Sydney NSW 2052 Australia

Telephone: +61 2 9385 1036 Fax: +61 2 9385 8685 Email:[email protected] Website: http://www.sphcm.med.unsw.edu.au/SPHCMWeb.nsf/page/IHRG

© Papua New Guinea Institute of Medical Research 2009 ISBN 9980 71 013 6

Layout & design by Douglas Diave and Llane Munau

Suggested citation: Kelly, A., Frankland, A., Kupul, M., Kepa, B., Cangah, B., Nosi, S., Emori, R., Walizopa, L., Mek, A., Pirpir, L., Akuani, F., Frank, R., Worth, H., & Siba, P. (2009). The art of living: the social experience of treatments for people living with HIV in Papua New Guinea. Goroka: Papua New Guinea Instittue of Medical Research. The art of living: the social experience of treatments for people living with HIV in Papua New Guinea

Angela Kelly

Andrew Frankland

Martha Kupul

Barbara Kepa

Brenda Cangah

Somu Nosi

Rebecca Emori

Lucy Walizopa

Agnes Mek

Lawrencia Pirpir

Frances Akuani

Rei Frank

Heather Worth

Peter Siba

Papua New Guinea Institute of Medical Research Univeristy of New South Wales

2009 Contents

Abbreviations and acronyms 5 Foreword I 6 Foreword II 7 Acknowledgement 9 Executive summary 11 Introduction 14 Background 15 Methodology and methods 17 Sample demographics 19 Key findings 24 Knowledge and beliefs regarding HIV and ART 24 Access to services 29 Adherence 34 Food security and alcohol 39 Disclosure of HIV status 42 Health and well-being 46 Stigma and discrimination 52 Sexual practices 56 Recommendations 64 References 65

4 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Abbreviations and acronyms

ART – antiretroviral therapy HIV – human immunodeficiency virus AIDS – acquired immunodeficiency virus PLHIV – people living with HIV PNG – Papua New Guinea VCT – voluntary counselling and testing

Papua New Guinea Institute of Medical Research and University of New South Wales 5 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Foreword I

Welcome everyone to this first research report on living with HIV in PNG: ‘THE ART OF LIVING’ covering people living with HIV (PLHIV) who are on ART and the issues they face with life on treatment.

This report contains data on the religious, sociocultural, emotional and health challenges and successes faced by PLHIV their partners, children and extended family as a whole. Some of the highlights of this report include the challenges posed by certain religious denominations with ART adherence, people with HIV complex negotiation of condoms, sex and sexuality, excellent adherence to ART, and the dramatic improvement ART makes on people’s mental health.

We hope the evidence presented in this research report will prompt you all to • respond accordingly to the challenges faced by PLHIV, • address emerging issues and • build on the successes that have taken place.

As the national group representing PLHIV, Igat Hope Inc. ensures that all research about PLHIV in PNG is done in collaboration with us as these researchers have: Nothing for us without us. This successful collaboration reenforces the need for partnership between PLHIV groups and the wider community including researchers in the national and global response to HIV and AIDS.

Mr Peter Momo Ms Helen Samilo Ms Maura Elaripe President Immediate Past President GIPA Advocacy Officer Igat Hope Current Board Member PNG-Australia HIV& AIDS Igat Hope Program (AusAID) and member Igat Hope

6 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Foreword II

A major challenge facing Papua New Guinea is evidence on which to build policies and programs to prevent the spread of HIV and to provide treatment, care and support for those living with HIV . In order for PNG to scale up access to ART we not only need to gear up our clinical response but to understand the needs of HIV-positive people and the barriers and challenges to access and adherence to therapy.

The ART of Living: the social experience of treatments for people living with HIV in Papua New Guinea is extremely timely. It presents the results of a study carried out through a partnership between the PNG Institute for Medical Research and the University of New South Wales and funded by the National AIDS Council. It is the first large-scale study of people’s experiences of living with HIV in Papua New Guinea. Importantly the study was done using Papua New Guinean research trainees – the PNGIMR cadets – a group of ten early career HIV social researchers.

The project aimed to examine people’s social experiences of ART, to explore stigma and the barriers and enabling factors for adherence to antiretroviral therapies, to understand the sexual practices of those on ART, and to understand the role of health care workers and families in the roll-out of treatments.

One of the successes of this report is that it presents both qualitative and survey data. You can not only examine the graphs and tables, but you can read the narratives of HIV-positive people and see the ways they represent their experience of living with HIV before and after ART through their own drawings.

The results are too numerous to detail here – you must read the report. The study will be useful to numerous groups: funders, NGOs, international donors. But here I just want to highlight a few of the results and the recommendations that are most pertinent to the Government of PNG.

When ART began to be rolled out there was a feeling that those in developing countries would be unable to adhere to a pill-taking regime. This report clearly indicates that in PNG this is not the case. The rates of adherence are similar to those in Australia and elsewhere. However, while ART treatment in this country is provided free of charge one of the main barriers to access is the cost of transport to the clinic, particularly for those in more remote parts of the country. We need to think about the placement of new ART sites so that people do not have to travel such long distances to access their drugs.

The study plainly shows that because people living with HIV and on ART are feeling healthier they are returning to normal life. Some of the respondents felt that clinic staff were antagonistic to them resuming a normal sexual life. This is unfortunate -we must be sure to include safe sex counselling for people living with HIV rather than insisting on abstinence.

Feeling well is not just about sex – those on ART felt hungrier. Good nutrition is essential to successful treatments and yet the report shows that a number of people (particularly those in NCD where people do not have their own gardens) did not have enough to eat. We must examine the urgent need for food programs in Port Moresby for those on treatment.

As the complexity of issues around the rolling out of universal access to ART facing us increase, we need to think about ways to effectively communicate these results to those working in the field. This will ensure that research results are translated into action.

Papua New Guinea Institute of Medical Research and University of New South Wales 7 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Foreword II

The ART of Living has not only produced data that is useful to the government and donors, but has shown a genuine commitment to the GIPA principle (a greater involvement of people living with AIDS). I appreciate the support of Igat Hope, people living with HIV and others who were centrally involved in the development of the reports recommendations and in the dissemination of the results.

Research provides important evidence for policymaking and programs. The National AIDS Council now has a Research Agenda and NACS has begun funding rounds for research grants which will continue this kind of work on other HIV topics. These projects will continue to provide high quality scientific evidence for the Government and other stakeholders to use to implement HIV policies and programs.

I commend this report as an example of the kind of research that is essential to the response to HIV in Papua New Guinea.

Mr Wep Kanawi CSM, OBE Acting Director National AIDS Council

8 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Acknowledgements

Without the people living with HIV (PLHIV) on antiretroviral therapy (ART) who generously gave of their time for this research this project would not have been possible. Thank you for sharing with us your experiences of treatment so that we can learn something of your lives. We hope that this report reflects your lives in part or in whole. We also anticipate that these findings will help in advocating for better services for people on treatment and provide the evidence of the positive impacts of treatment. For those who provided feedback on the findings at the Igat Hope workshop in Port Moresby and to those who helped develop the report’s recommendations, thank you for your time and suggestions. We look forward to working together again in the future in this partnership model.

This project would not have been possible without the support of the staff and PLHIV at the recruitment sites in Mendi and Tari (Southern Highlands Province), Kainantu (Eastern Highlands Province), Mingendi (Chimbu Province), Mt Hagen (Western Highlands Province), Lae (Morobe) and Port Moresby (National Capital District). The recruitment sites we are indebted to are: Epe Anda and St Francis Care Centre (SHP); Poro Support Project Kainantu and Salvation Army Drop in Centre (EHP); St Joseph’s Rural Hospital (Chimbu Province); Rabiamul Clinic, Friends Club, Tininga Clinic at Mt Hagen Hospital, True Warriors and Baptist Union (WHP); Morobe Network of Positive Living and Anua Morere at Angau Memorial Hospital (Morobe); and Simon of Cyrene, Igat Hope, Hederu Clinic and Ward 4B at Port Moresby General Hospital, Anglicare StopAIDS, St Mary’s Medical Centre, Poro Support Project, House of Hope, and 9 Mile Clinic (NCD)

We would like to thank the key stakeholders involved in this project for their support, encouragement, advice, engagement and participation in developing the recommendations. They are Igat Hope, the peak body of PLHIV in PNG, particularly Rei Frank, Helen Samilo, Maura Mea and Peter Momo; the National Department of Health, particularly Dr Daoni Esorom and Dr John Millan; the National Catholic AIDS Office, particularly Sr Tarcisia Hunhoff; and Dr Agatha Lloyd of the WHO.

We would also like to thank Dr Patrick Rawstorne, (University of New South Wales) for his ongoing support with the design of the questionnaire and guidance in writing the report, Ms Llane Munau (Papua New Guinea Institute of Medical Research) for formatting the survey used in the study and for designing the report with Mr Douglas Diave (Papua New Guinea Institute of Medical Research) and to Ms Evelyn King (AusAID) for her support to do this study.

This project was carried out by early career researchers in Papua New Guinea. The researchers were employed in the Strengthening HIV Social Research Capacity Building Project funded by AHAPI (AusAID), a joint endeavour by the Papua New Guinea Institute of Medical Research (PNG IMR) and the University of New South Wales. The project was a two-year project which sought to build the capacity of Papua New Guineans in the area of HIV social research. We would like to thank the PNGIMR and UNSW for their ongoing intellectual and political commitment to this important piece of research.

Last but not least, this project would not have been possible without the National AIDS Council Secretariat (NACS) of Papua New Guinea with the financial support of the Government of Australia.

Papua New Guinea Institute of Medical Research and University of New South Wales 9 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Map of Papua New Guinea showing the research sites used for the study

10 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Executive summary

The Art of Living is a comprehensive study of the opportunity to tell their stories in more detail, in their lives of people in PNG who have been living on own words and in ways that allowed the researchers antiretroviral therapies (ART) for more than two weeks. to understand what was important in their lives. As a study that recruited from ART clinics, drop in All data was transcribed, translated and analysed centres and support groups for people living with HIV thematically. in six provinces (National Capital District, Southern Highlands Province, Western Highlands Province, The findings of this study are too numerous to Chimbu Province, Eastern Highlands Province and report here in this Executive Summary, as are the Morobe Province), this report goes to the details of reports recommendations which were developed in what it means to live with HIV and ART today in PNG. partnership with Igat Hope, representatives from the Designed to explore the social experiences of PLHIV National Department of Health and the World Health on ART in Papua New Guinea, the project had seven Organization. However, let us reflect on just some of key objectives: the critical findings for PLHIV, health care workers, government and non-government organisations and 1. Conceptualise and understand the way PLHIV researchers interested in the lives of PLHIV. think about ART in their lives; 2. Explore the relationship between stigma and the uptake of ART; Knowledge of HIV and ART 3. Determine the barriers and facilitators for PLHIV to adhere to ART; • Close to one fifth of the sample believed that 4. Understand PLHIV’s beliefs and knowledge ART could cure the virus. about ART; • The majority of the men and women surveyed 5. Explore the impacts of ART on PLHIV; (90.6%) believed that ART worked or worked 6. Explore the gender differences in the impacts well. of ART on PLHIV; • Some 77.3 % correctly knew that HIV could not 7. Understand the role of health care workers and be transmitted by mosquitoes. families in the experience of ART.

The study engaged a mixed-method research Access to health care services for HIV approach: survey, in-depth interviews and drawings. The quantative component of the study involved a • The majority of the respondents (65.2%) did cross-sectional survey of 374 people with HIV who not report experiencing any difficulties when had been taking ART for more than two weeks. A accessing treatment. non-probability, convenience sampling approach • A higher proportion of those in the Highlands was used. The questionnaire gathered information Region reported having had difficulties about the following: demographics; knowledge and accessing treatment (39%) compared to those beliefs of HIV and ART; stigma and discrimination; who lived in the Southern (27.6%) or Momase health and well-being; disclosure; food security (21.7%) Regions. and alcohol use; adherence to treatment; sexual • Insufficient money was the major obstacle to practices; and access to services. At the end of the treatment access with 60.5% of those who questionnaire one qualitative question on the meaning reported difficulties accessing treatment of ART in people’s lives was asked. The survey was identifying this as the primary cause. administered in English and Tok Pisin and analysed • The aspect that the participants were least using SPSS (v. 15). satisfied (38.5%) with was the amount of time that they had to wait to see a doctor or nurse at In-depth (semi-structured) interviews were conducted the clinic. with 36 PLHIV and 15 key informants. The PLHIV were • The aspect of attending the clinic that the drawn from those who participated in the survey. The participants were most satisfied (95.7%) with in-depth interviews provided people living with HIV an was that the staff were friendly.

Papua New Guinea Institute of Medical Research and University of New South Wales 11 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Executive summary

Adherence Disclosure

• Slightly less than half of the participants • Almost all people (91.6%) had disclosed their (45.6%) reported having ever missed a dose of HIV status to at least one person before they their medication. commenced ART. • Those who lived in the Southern Region (59%) After ART, only 65.6% of people had disclosed were most likely to have ever missed a dose their HIV status. while those living in the Highlands Region • Being on ART made it easier to disclose for (39.1%) were the least likely to have ever 62.4% of participants. More men (68.9%) missed a dose. than women (58.3%) reported that being on • Of all religious affiliations, those who identified treatment made it easier to disclose. as members of the Revival Church were • Close to 90% of the participants reported being significantly more likely than any other to have happy to very happy with the support they ever missed a dose of treatment (63.6%). received following disclosure. • The majority (79%) of the participants had been 100% adherent to treatment in the previous week. Health and well-being • The majority (65.4%) of the sample reported that in the previous week they had taken their • After treatment there was a 28.4% increase in treatment at the correct time as told to them by the proportion of people who reported that their their ART prescriber. physical health was excellent and an increase • The most common reason for not adhering to of 28.3% of those who reported that their ART was forgetting (51.2%) followed by not physical health was good. having enough food to take with medication • On ART there was a 72% reduction of (15.3%). participants reporting their mental health as • The most common reasons identified for bad to very bad. adhering to treatment included wanting to look • Approximately 90% of all participants who healthy (94.7%), not wanting to die (92.9%) reported that in the year before ART their quality and following doctors advice (92.9%). of life had been bad to very bad reported that in the last month on treatment their quality of life had improved. Food security and alcohol • On treatment the majority of the sample rated their satisfaction with health as happy to very • Some 72.8% of the sample reported an happy (74.9%) whereas before treatment this increase in their appetite on ART and of these proportion was only 18.2%. people 32.7% reported that they did not have • There was a 33.7% reduction in the number enough food to satisfy their hunger. of people spending every day in bed in the • Those who lived in the Southern Region were previous month on treatment compared to the most likely (52%) to report not having enough month before treatment began. food to satisfy their hunger. • Close to 80% of participants reported that they did not drink alcohol while 15% only drank once in a while. • Amongst those who reported not drinking alcohol, the main reasons for not drinking were never having drunk alcohol (37.8%), while another 40.7% ceased as a result of having HIV and/or starting ART (HIV-related = 27.6% and ART-related = 13.1%).

12 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Executive summary

Stigma and discrimination • Only two of the 11 people (18.8%) who had had anal sex reported that they had used a • Some 47.3% of the sample reported having condom the last time they had anal sex with experienced some form of verbal abuse as a their regular partner. result of their HIV status. • Nearly all of the participants (91.8%) had • A higher proportion of females (53.4%) reported disclosed their HIV status to their regular being verbally abused than males (37.9%) as a partner. result of their HIV status. • The majority of participants with regular • Of those who reported experiencing some form partners who had had sex in the previous six of verbal abuse as a result of their HIV status, months had a partner who was HIV-positive 40.4% reported that since going on ART this (64.7%), while 21% reported that their partner experience of verbal abuse as a result of HIV was HIV-negative. 14.3% reported that they had either stayed the same or had intensified. do not know the HIV status of their regular • The majority (85.4%) of people in the study had partner. not experienced physical abuse as a result of • Only 22 people reported having had vaginal their HIV status. sex with a casual partner in the previous • Close to double the proportion of females six months. Of these people, 63.6% (n=14) (17.7%) than males (9.7%) had experienced reported that they used a condom the last time being physically abused as a result of their HIV they had vaginal sex with their casual partner. status. • The majority of men had not paid for sex with a • Of these people who reported experiencing woman in the previous six months with only ten physical abuse, 63.5% said that it had improved men (7.7%) in the sample reporting that they since being on treatment while 36.5% said that had done so. their experience of abuse had either stayed the • Only five (3.8%) of the total number of men same or deteriorated on ART. reported having had male-to-male sex in the last six months.

Sexual practices This is the first extensive study into the social experience of ART for people with HIV in PNG and • In the sample, 39.4% reported that they had the primary recommendation from this study is that had sex since being diagnosed with HIV while more research is needed into living with HIV and, in 60.6% had not. particular, the effects of treatments. There are also • 37.9% had had sex in the previous 6 months. program-specific recommendations arising from this • Of those with a regular partner, 94.4% had had study: to address the issues of food security; stigma vaginal sex in the previous six months. and violence against people living with HIV, especially • Fewer than half (46.2%) of the participants who women, and the issues of religion and adherence, in had had vaginal sex with their regular partner particular the influence of the Revival Church. in the previous 6 months reported that they always used condoms. The research team and the stakeholders hope that • There was high condom use (62.2%) the last this report will provide all people working in the field of time participants had had vaginal sex with their HIV with more of the verification they need to create regular partner. and argue for evidence-based programs, policies and • The majority (91.2%) of participants with a practices which empower and support people living regular partner had not had anal sex in the with HIV on ART in Papua New Guinea. previous 6 months.

Papua New Guinea Institute of Medical Research and University of New South Wales 13 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Introduction

Papua New Guinea (PNG) is the focal country of the studies, writes Hirsch and colleagues, must study the human immunodeficiency virus (HIV) in the Pacific social impacts of the scale up as the process unfold. region with a reported generalised epidemic and an If they do not: estimated HIV prevalence in 2009 of 2.56% of adults over the age of 15 infected with HIV (Government of we will lose vital opportunities for the mid-course PNG, 2007). Like many developing countries, PNG is corrections that could mean the difference between in a phase of scaling up access to antiretroviral therapy success and failure at multiple levels. Only by (ART). ART has been shown to reduce morbidity and understanding the social aspects of scale-up can we mortality (Paella et al., 1998) and reduces the cost of maximize our opportunity to shape its outcome and care (Maisels et al., 2001). Furthermore, ART is one of lay the groundwork for ameliorating its unintended a number of pillars of effective HIV prevention efforts. consequences (2007:S2).

It has long been argued that HIV is more than Findings from other resource-poor countries are a biomedical issue. In fact, it is because HIV is instructive in understanding the social aspects transmitted by bodily fluids associated with sex and and impacts of treatment on people living with HIV injecting drugs that it is inherently a socio-cultural (PLHIV) in PNG: the barriers and facilitators of illness. HIV is interpreted and shaped within sexual treatment adherence; stigma; disclosure; how people and drug injecting practices and, in turn, shapes those conceptualise ART in their lives; the role of family practices in local milieu and along grids of power. It is and health care workers in the experience of ART; because of these aspects of HIV that taking ART is not and PLHIV’s beliefs and knowledge of treatment. akin to consuming other medications. That said, the While findings from other regions of the world may availability of these treatments has transformed the provide insights for PNG they do not speak for or of social and illness (and indeed disease) experience of PNG; therefore in this research we have sought to HIV in the developed world and, more recently, in the understand the lives of PLHIV on treatment in PNG. developing world (Mukherjee et al., 2003; Koeing et This report is based on data from the first multi-site al., 2004 and Biehl, 2007)1. study into the social impacts of ART for people on treatment in Papua New Guinea. Specifically, this The clinical picture does not tell us about the social report details the quantitative findings from a survey world in which people with HIV live. As Hirsch et al. conducted using a convenience sample of 374 PLHIV (2007:S1), like the authors of this study, argue that on treatment for more than two weeks between research must analyse the social impacts of the scale February and July 2008. Removing ART from the up of ART in resource-poor settings. However, and sole sphere of medicine, this research places ART more importantly, such research, they suggest, will in the context of people’s social lives and aims to also ‘increase our ability to achieve our clinical and provide the evidence necessary for best practices public health goals successfully.’ Like this study, which in the care and support on people on ART in Papua has been undertaken as PNG scales up ART, these New Guinea.

1 Disease refers to the objective measures of HIV and AIDS-related conditions whereas illness refers to the subjective experience of HIV and AIDS-related conditions.

14 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Background

The physician-anthropologist Paul Farmer once resource-poor settings (WHO 2006). The commitment wrote, ‘one can be impressed by the power of modern to universal access had become enshrined as a key medicine and yet dejected by our failure to deliver it component of all HIV care and access to ART was equitably’ (1991:264). Nowhere have we seen this no longer a privilege but a human right that had to more so than in the inequitable distribution of ART be met as part of the Millennium Development Goals. until very recently. Prior to 2002 the World Health Because of this there has been financial and political Organization did not list antiretroviral therapies as commitment to provide low- and middle-income ‘essential medicine’. However, the benefits of ART are countries with support to expand access to these life at least twofold: people living with HIV are expected saving treatments for people with HIV.2 to have a better quality of life with less morbidity and mortality and ART can restore individuals to active It has been suggested that it is no longer useful to participation in the social and economic activities of debate treatment and prevention priorities; instead, their families and communities. analysis and discussions should prioritise how we can simultaneously integrate and strengthen prevention Expanded access to ART is essential in mitigating and care (treatment) and use every opportunity increasing mortality rates, as ‘access to medical care provided by one to reinforce the other (Lamptey and is a more important predictor of survival than sex, Wilson, 2005:104). Papua New Guinea is one country race, and income level’ (Chaisson et al, 1995:755). that is doing this. It is trying to expand access to ART With increased pressure from non-government treatments for its citizens with HIV and simultaneously organisations, and with people with HIV throughout enforce and strengthen treatment and care in order the world demanding access to the treatments to prevent new and secondary infections. In 2009, reserved for the comparatively rich people in the Papua New Guinea had an estimated 98,757 people developed world, a new dialogue of ‘universal access’ infected with HIV (Government of PNG, 2007). to combination therapy emerged. Through its National Strategic Plan on HIV/AIDS (2006–2010), PNG has prioritised seven areas, of While AIDS treatment activism is not new the which treatment, counselling, care and support is development of more sophisticated ART and then one.3 Under this prioritised area the goal is to reduce the continuing denial of these essential drugs to morbidity and mortality from AIDS-related conditions, those from resource-poor settings triggered a new to improve the quality of life for those infected with era of treatment activism. After the International AIDS HIV and to encourage access to voluntary counselling Conference in Vancouver, with the theme ‘One World, and testing (VCT). One of the objectives to achieve One Hope’, the stark differences in living with HIV this goal is to scale up access to ART throughout the became starker. Without access to treatment, there country, including rural areas. This commitment by was not ‘one hope’. The anger because of continued the Government of PNG and its partner organisations denial of access to treatment to the world’s poorest, such as the faith-based organisations has successfully who are the majority of those with HIV, peaked led to an increasing number of PLHIV on ART. in 2000 at the International AIDS Conference in However, the number of those on treatment still falls Durban, South Africa. Treatment activists demanded short of those in need. As of January 2008, (when greater access. A new scale of treatment activisms this study commenced) 2,250 PLHIV were enrolled was born. In time programs such as the WHO and on treatment, which equated to 35% of those with UNAIDS strategy ‘3 by 5’, followed by the UNAIDS advanced disease. While 38 facilities offer ART, as of Universal Access initiatives, were launched. While January 2008 this represents only 14% of all health the WHO and UNAIDS ‘3 by 5’ program itself did facilities in the country, with the result that PLHIV not reach its goal, from 2003 to 2005 there was a often have to travel long distances, in some cases for threefold increase in the number of people on ART in days, for treatment.

2 For a discussion of the scale of ART as the first global public health intervention as the result of activism, a social movement and that was shaped by people with HIV, see Smith and Siplon (2006), Berkmand et al. (2005) and Friedmand and Mottiar (2004). 3 Gender has subsequently been added as the eighth priority area and has its own strategy paper

Papua New Guinea Institute of Medical Research and University of New South Wales 15 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Background

The clinical benefits of ART are well documented. 3. Determine the barriers and facilitators for Less so are the social impacts, especially in resource- PLHIV to adhere to ART; poor settings generally and in PNG specifically. In 4. Understand PLHIV’s beliefs and knowledge fact, there has been no published social research about ART; on people with HIV in Papua New Guinea to date.4 5. Explore the impacts of ART on PLHIV; Increasingly, however, the social impacts in these 6. Explore the gender differences in the impacts settings are attracting the attention of health care of ART on PLHIV; providers, national HIV program coordinators and 7. Understand the role of health care workers and social researchers. Much of the work in this area has families in the experience of ART. come from Haiti (see for example, Mukherjee, et al. 2005, 2006; Castro and Farmer 2005), and African nations such as Botswana, Uganda and South Africa The purpose of this report is to provide the community, (see for example, Hardon et al. 2006, 2007; Kaida PLHIV, the National Department of Health, faith- et al. 2008; Bateganya et al. 2005). This current based and non-government organisations and research on the lives of people with HIV in PNG is research institutions, with the findings from this essential for thinking about ‘positive prevention’. study in particular the quantitative data, which is complemented by exerts from the in-depth interviews with people on treatment to highlight key issues. The Aim of the study and the report use of narratives in this report does not represent a thematic analysis of all the qualitative data from the The aim of this study was to examine the social study. Where informants spoke in Tok Pisin both the impacts of ART on PLHIV in Papua New Guinea. original and translated exert is provided. Any mistake Seven objectives were outlined: in translation is unintended. While not all people in the in-depth interviews agreed to pictorially describe 1. Conceptualise and understand the way PLHIV their experience on ART, where people did, we have think about ART in their lives; included some of the images to provide an additional 2. Explore the relationship between stigma and vehicle for method of understanding the social impacts the uptake of ART; of ART on people’s lives.

4 In a recent publication by Butt and Eves (2008) on AIDS in Melanesia, which contributes a rich ethnographic understanding of how responses to HIV are shaped by culture in local milieu, there is not one chapter that specifically addresses research about people living with HIV.

16 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Methodology and methods

This study engaged a mixed-method research Two separate interview schedules were developed. approach. Good quantitative methods are useful in the PLHIV were drawn from the convenience sample of gathering of reliable, statistically robust information PLHIV in the survey. about the behaviours, practices and beliefs of a given population. However, quantitative methods alone do Key informants were chosen on the basis of their not tell us about the cultural context of such findings. involvement in the care and support of PLHIV on ART. Therefore a mixed-methods approach was used. Informants included nurses, doctors, counsellors and This provides reliable quantitative data about the pastoral care workers. The data from key informants population of interest while at the same time allowing is not included in this report. a better understanding of the individual and collective experiences of those interviewed. Interviews were conducted in Tok Pisin and English and lasted approximately one hour, with the longest taking two. All interviews were transcribed verbatim, The survey translated and subjected to a thematic analysis of codes derived from the qualitative data set. The A cross-sectional survey of people with HIV who qualitative analysis of this research is positioned had been taking ART for more than two weeks was within the interpretive tradition of the social sciences. undertaken between February and July 2008. A total As Geertz says, interpretation ‘is fundamentally about of 374 people with HIV on ART were interviewed using getting some idea of how people conceptualise, a non-probability, convenience sampling approach. A understand their world, what they are doing, how they convenience sample was chosen because the number are going about doing it, to get an idea of their world’ of PLHIV on treatment across the country was small, (in Panourgiá 2002:422). In-depth interviews were making it difficult to obtain a representative sample. selected because they allow for a mutual narrative People attend clinic for treatment infrequently, making it exploration of the issues. Participation for PLHIV and unlikely that an adequate sample size could be reached key informants was voluntary and informed consent across all six sites in the time available. was obtained. All identifying information has been altered and pseudonyms have been used for all The questionnaire gathered information about the informants in this report. following: demographics; knowledge and beliefs of HIV and ART; stigma and discrimination; health and well-being; disclosure; food security and alcohol Visual method—drawings use; adherence to treatment; sexual practices and; access to services. At the end of the questionnaire Until recently, the use of visual methodology and one qualitative question on the meaning of ART in methods has been scarce, a neglected dimension people’s lives was asked. in our understanding of social life. In the past decade things have begun to change and more researchers The questionnaire was written and interviewer- are using methodologies that engage with the visual. administered in Tok Pisin and English. No names were Amongst others things, the visual offers people different recorded on the questionnaire. All questionnaires modes of expressing and experiencing their lives. were coded by province and recruitment site. All Bruner (1986) says some of the experiences we live questionnaires were entered and analysed using ‘are inchoate, in that we simply do not understand what SPSS (v.15). we are experiencing, either because the experiences are not storyable, or because we lack the performative and narrative resources, or because the vocabulary is In-depth Interview lacking’ (p. 6–7). To dismiss the visual in the gathering of data is to unnecessarily limit and dismiss data sources. In order to explore the lived experiences of ART for For this reason, PLHIV in the qualitative component of PLHIV, in-depth (semi-structured) interviews were this study were asked to visually depict their experience/ conducted with 36 PLHIV and 15 key informants. s of ART using coloured marker pens and paper.

Papua New Guinea Institute of Medical Research and University of New South Wales 17 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Methodology and methods

Not all those who were involved in the in-depth interviews Informed consent agreed to draw their experiences. Informants who drew images also provided the analysis of their drawings. Signed informed consent was obtained from all informants (PLHIV and key informants) involved in the in-depth interviews. Consent forms were Recruitment of PLHIV on ART written in Tok Pisin and English and explained to the participants if they were illiterate. In the situation To be eligible to participate in the study all PLHIV had to where an informant could not read or write, have been on ART for a minimum of two weeks, be over a nominated witness, such as a health care worker, the age of 16 and able to provide informed consent. was asked to sign on their behalf after verbal consent was given. Two stages of verbal Participants were invited to participate in the study consent were obtained for the survey. Potential by healthcare workers or other PLHIV. It was made informants consented to the health care worker known to potential participants, both by the healthcare or PLHIV to being involved in the study and were workers and the researchers, that they were under directed to a nominated researcher. Once with the no obligation to participate, that their access to ART researcher, verbal consent was again given before would NOT be affected by their decision to decline the survey was undertaken. involvement in the study, and that they could withdraw from the study at any time. Except at Kainantu, where researchers stayed for less than a week, researchers Greater involvement of People with HIV stayed at the sites between two and three weeks. and AIDS (GIPA)

A person living with HIV was employed as a Recruitment of key informants member of the research team and trained in the methodologies of the study. They interviewed and The key informants were health care workers in the field surveyed PLHIV on ART, transcribed interviews, sites who were directly employed in the area of ART were involved in disseminating the preliminary administration, the roll-out of ART more generally or the results back to PLHIV at Igat Hope’s National care of PLHIV on ART. The research team decided on Conference and participated in the stakeholder who was a key informant at each of the sites. workshop to develop the recommendations and implications of the study for treatment and care of PLHIV on ART in PNG. Site locations

Participants were recruited through ART-prescribing Stakeholder group sexually transmitted infection (STI) clinics, hospital wards, day care centres, PLHIV organisations, non- The stakeholder group was engaged in three government organisations (NGOs), faith-based ways. Prior to commencing the study, the survey organisations and hospitals. Recruitment occurred was shared with two members of Igat Hope in six provinces: the National Capital District (Port familiar with social research and their feedback Moresby); Chimbu Province (Mingende); Southern was sought. At the National Conference for PLHIV Highlands Province (Mendi and Tari); Eastern organised by Igat Hope a closed session was held Highlands Province (Kainantu); Western Highlands for positive people to hear preliminary results from Province (Mt Hagen); and Morobe Province (Lae). the study and contribute ideas for how the results should be disseminated beyond the final study report. At the completion of the draft report a Ethical approvals stakeholder working group (expanded from Igat Hope, the National Department of Health and Ethics approval for this study was granted by the the Catholic AIDS Service to include the World Papua New Guinea Medical Research Advisory Health Organization and the GIPA Advocate from Committee, the Research Advisory Committee of AusAID) was held for two days to review the the National AIDS Council Secretariat of Papua New draft report of this study and together agree on Guinea, the Papua New Guinea Institute of Medical the key recommendations to be concluded from Research Internal Review Board and the University this study for the treatment and care of PLHIV on of New South Wales. ART in PNG.

18 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Sample demographics

Gender 50

40 Of the 374 study participants, 60.4% (n=226) were women and 39.6% (n=148) were men. At the time of 21.4 the study (January 2008), 2,250 PLHIV were recorded % 30 30.8

on the national ART registry as being on treatment and 10.3 of these 1,213 were women and 1,037 were men. The 20 6.7 study sample accounts for approximately 16.62% of 22.3 the population on treatment at that time. The women in 2.2 22.1 the sample accounted for 18.7% of the national total of 10 18.6 16.6 1.7 women on treatment and the men accounted for 14.17% 16.6 11.0 4.5 7.6 6.2 of the national total of men on treatment at that time. 1.4 0 16-19 20-24 25-29 30-34 35-39 40-44 45-49 50 & Over (n=12) (n=61) (n=93) (n=80) (n=50) (n=39) (n=21) (n=13) Age Male (n=147) Female (n=227)

Figure 2: Age distribution for men and women The majority of participants in this sample were aged 25–34 years, with the median age 30 years (Figure 1). The youngest participant was 16 and the eldest This finding where women are younger than men at was 69.5 diagnosis is consistent with what is known from the 30 national surveillance data of HIV diagnoses from 1987 to 2006 (see above comment). Where the data 25 differs slightly from the national surveillance data is

20 in the age categories. In this sample the peak age category for the women was 25–29 years while in the % 15 national surveillance data it is 20–24 years; for men 25.2 in the study the peak age category was 30–34 years 10 21.7 16.5 while in the national surveillance data it is 30–34 13.6 5 10.6 years. This slight difference could be explained by 5.7 3.3 3.5 the difference between being diagnosed with HIV and 0 16-9 20-24 25-29 30-34 35-39 40-44 45-49 50 & Over being on treatment, which for many happens later. (n=12) (n=61) (n=93) (n=80) (n=50) (n=39) (n=21) (n=13)

Figure 1: Age of participants Time diagnosed with HIV

The national surveillance data of age at HIV diagnosis While we did not collect data on how long people had between 1987 and 2006 did not record the age for been infected with HIV the majority of those in the slightly more than a third of all diagnoses. Of the study had only come to know their HIV status recently. remainder where age was recorded, most infections Close to half of the sample (43%) had been diagnosed were diagnosed in the 20–29 age group. with HIV in the previous 12 months (Figure 3).

When disaggregated by gender, the age distribution The mean time a person had been diagnosed with HIV of the sample was somewhat different, with men was 8.5 months with the median being 4.5 months. considerably older than the women. The mean age Three people had been diagnosed for over 10 years for men was 36 years while for women it was 28 with the longest having been diagnosed for 14 years years (Figure 2). and 9 months.

5 Study participants had to be at least 16 years old . A number of PLWH on ART who asked to participate were under this age.

Papua New Guinea Institute of Medical Research and University of New South Wales 19 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Sample Demographics

Time on treatment Marital status

The longest time that a person had been on treatment Almost half the participants were married or engaged was 9 years and the shortest, two weeks. This data (46.8%)6, with almost a quarter widowed (24.3%) is not surprising given nearly half of participants had (Figure 5). However, of those who identified as been diagnosed in the previous 12 months and that married only 32.1% said that their partner lived with PNG introduced ART in 2004 as a pilot and has only them in the same house. begun to scale up access in the last few years. 50

16.6 > 4 years (n=61) 40 2-4 years (n=80) 21.8

1-2 years (n=68) 18.5 30 7-12 months (n=64) 17.4

< 6 months (n=94) 25.6 46.8 20

0 5 10 15 20 25 30 % 24.3 Figure 3: Time diagnosed HIV-positive 10 17.9 Education 6.7 4.3 Most men (35.1%) and women (48.7%) reported 0 primary school education as their highest level of Never been Married or Seperated Divorce Widowed married engaged (n=16) (n=67) (n=91) education attained, with a greater proportion of (n=25) (n=175) women completing primary than men. There was a Figure 5: Marital status of participants significant relationship between gender and level of education (χ2 (4) = 19.924, p = 0.001) (Figure 4). More Forty two participants identified that they were part of a men had completed secondary education compared polygamous relationship where there were two wives, 16 to women. A higher proportion of women (23.5%) were in a marriage with three wives; two were in a marriage than men (17.6%) reported never attending school. with four wives; three were in a marriage with five wives;

100 one was in a marriage with six wives; and one was in a marriage with 12 wives. In total, 65 participants (17.4% of the total sample) reported being part of a polygamous marriage. However, nine of these reported that they were 80 now separated from their spouse; therefore 15% of the total sample were currently in polygamous marriages. Of all those who were married (excluding those who were

60 separated), 32% were in polygamous relationships with 48.5 two or more wives.

% The true extent of polygamous relations is likely 40 to be under reported in this sample because the 15.9 polygamous question was not asked of widows. 23.3 During the qualitative interviews a number of

20 informants who were widowed (namely women) spoke of their polygamous marriages. Even with 9.3 35.4 27.9 3.1 17.7 the death of their husbands, these widows still saw 10.9 8.2 themselves as connected to their co-wives and their 0 co-wives children. For example, Sendy (Southern Never been Elementary Primary Secondary Certificate of to school University Highlands Province) shared in her in-depth interview

Male (N=147) Female (N=227) that her husband and two co-wives had all died of AIDS-related illnesses and Dorethy, also from the Figure 4: Gender and level of education attained Southern Highlands,

6 Of those who were married or engaged, only three were engaged.

20 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Sample demographics

said that her husband had died twelve months ago Within all of these employment categories only two and while she was on treatment her co-wife continued women specifically identified themselves as sex to refuse to believe that she was infected even though workers and only 10 men identified themselves as the health care workers told her that ‘her body is full mobile workers such as truck drivers or seafarers. In of the virus’. Neither of these women were recorded risk discourses of HIV, these work professions are as living in polygamous marriages since their marital amongst those which are traditionally considered status was widowed. to place people ‘most at risk’ of HIV in PNG, yet in this study few people were ‘at risk’ according to this Of the 65 participants in polygamous marriages, the model. majority reported living in the Western Highlands Province (n=38) – the province where from January The highest proportion of both men and women to June 2008 35.2% of all HIV notifications originated earned their living by working in the garden. More (NDoH 2009).7 This was followed by those living in women than men identified housework as their main the National Capital District (n=12). The region of form of work while more men than women reported residence with proportionally the largest number informal employment as their main form of work of people in polygamous relationships was the (Figure 7). Eastern Highlands Province, where four of the eight participants in the study reported being in such a 50 marriage. Polygamous relationships were reported by people living in the Southern Highlands Province, 40 Western Highlands Province, Enga Province, Morobe Province, Chimbu Province, Eastern Highlands 30 Province and the National Capital District (in all but % the Central and Madang Provinces). 47.1 20 38.8 35.7

Employment 10 19.4 13.7 9.4 3.2 12.9 3.6 8.6 5.8 1.8 With 85% of PNG’s society residing in rural areas and 0 Gardening House Formal Informal Unpaid Others the recruitment sites used in the study being located (n=158) work employ- employ- work or (n=12) (n=92) ment ment Unempl- in rural areas it was not surprising that the majority (n=26) (n=46) oyed (43.9%) of those in this study reported their primary (n=26) form of work to be working in their garden; the next Male Female group (25% of the sample) reported their primary form Figure 7: Employment by gender of work as doing house work (Figure 6).

50

40 Number of people in household

30 The majority of participants (50.7%) reported that % they were living in average sized households where 20 43.9 between five and nine people lived with them. Nearly 30% (29.2%) said that one to four people lived in the 10 25.6 same house as they did while 13.4% of the sample 3.3 12.8 7.2 7.2 was living with between 10 and 14 people. 0 Other Formal Unpaid Informal House Garden (n=12) employ- work or employ- work work ment unempl- ment (n=92) (n=158) (n=26) oyed (n=46) (n=26)

Figure 6: Employment by participants

7 Although the Western Highlands Province was the province with the highest proportion of HIV diagnosis in the period of January to June 2008, this does not mean that it has the highest overall prevalence. Rather, this may be an artifact for example of public awareness for testing, a long history of testing that preceded other provinces and the availability of treatment at two clinics within close proximity to each other providing access and choice. This, however, also does not mean that it is not the province with the highest prevalence; the reality is that based on theavailable surveillance data, we do not know either way.

Papua New Guinea Institute of Medical Research and University of New South Wales 21 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Sample Demographics

Province of birth and residence Penticostal (general) 22.3 (n=83) The participants in the study reported living in the Revival (n=77) 20.7 three main regions of mainland PNG: the Highlands Catholic 18.5 Region (64.8%); the Southern Region (28.8%); and (n=69) Momase Region (6.3%). The highest proportion of SDA 16.9 participants lived in the Western Highlands Province (n=63) (42.6%) followed by the National Capital District Lutheran 11.3 (27.1%) (Figure 8). (n=42) United 6.2 (n=23)

Evangelical Alliance 2.4 (n=9) 50 Other 1.3 42.8 (n=5)

40 No religious belief 0.3 (n=1) 0 5 10 15 20 25 30 27.1 % % Figure 9: Religious denomination 20

10.2 This proportion of people identifying as either 10 5.9 4.3 5.9 Pentecostal or Revival is in stark contrast to the 2.1 1.6 0.3 National Census data in PNG which reports that the 0 majority of the nation identify as Catholic followed Central Morobe Madang South- West- Enga Chimbu Eastern National Province Prov- Province ern ern Prov- Prov- H’la- Capital by Lutheran (PNG National Statistical Office 2003). (n=6) ince (n=1) H’lands H’lands ince ince nds District (n=22) Prov- Prov- (n=16) (n=22) Prov- (n=101) This demographic data suggests and is supported by ince ince ince (n=38) (n=159) (n=8) the qualitative interviews that there is a phenomenon of conversion happening by PLHIV after diagnosis Figure 8: Province of residence in order to attain healing from baptism and the acceptance of the Holy Spirit into their lives8.

More than half of the participants reported attending The data were collected in three regional areas of church every week (‘always attends church’) (52.7%) PNG: the Highlands, Momase (Lae) and the Southern followed by attend sometimes (28%). Slightly more Regions (Port Moresby). More time was spent collecting people reported not attending church (10.8%) than data in the Highlands Region so it is not surprising that those who attended often (8.6%) (Figure 10). over three quarters of the sample (76.2%) were born Languages spoken, written and read. there; 17.5% were born in the Southern Region and 6% in the Momase Region. Only one person in the sample was born in the Islands Region.

Religious denomination and church attendance

The two main religious denominations that respondents identified with were Pentecostal (general) (22.3%) and Revival (20.7%). Slightly smaller proportions identified as Catholic (18.5%) and Seventh Day Adventist (SDA) (16.9%) (Figure 9). Figure 10: Church attendance

8 A similarly high rate of membership of PLWH in the Revival Church has been identified by Sr Mary McCarthy in her current doctoral work on hope and HIV in PNG (personal communication 2008). Amongst PLWH in Brazil a similar conversion to Pentecostal denominations has also been noted (Biehl 2007).

22 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Sample demographics

Slightly more than forty percent (41.4%) of the Close to forty percent (39.7%) of the sample reported participants reported speaking Tok Pisin, Tok Ples that they could write in both Tok Pisin and English (local dialect) with or without another language that with or without another language that was not Hiri was not English or Hiri Motu while a similar proportion Motu while close to thirty percent reported that they of the sample (40.6%) reported that they spoke Tok could not write in any language (29.7%) (Figure 13). Pisin and English with or without another language that was not Hiri Motu (Figure 11). Tok Pisin and English with or without another language 39.7 Tok Pisin and Tok Ples with or NOT Motu (n=147) without another language NOT 41.4 English or Motu (n=156) Cannot write (n=110) 29.7

Tok Pisin and English with or 11.9 without another language NOT 40.6 Tok Pisin only (n=44) Motu (n=152) Tok Pisin and Motu with or without another language 6.8 Tok Pisin, English and Motu with NOT English (n=25) or without another language 9.9 Tok Pisin and another (n=37) language NOT English 5.4 or Motu (n=20) Tok Pisin and Motu with or Tok Pisin, English and Motu without another language NOT 4.0 with or without another 3.5 English (n=15) language(n=13) English only (n=7) 1.9 Tok Pisin only (n=13) 3.5 Tok Ples with or without English (n=2) 0.5

Tok Ples only (n=2) 0.5 English and Motu only (n=2) 0.5 0 10 20 30 40 50 0 5 10 15 20 25 30 35 40 % %

Figure 11: Language spoken Figure 13: Languages written

Reading Tok Pisin and English with or without Recruitment sites and provinces another language that was not Hiri Motu was the most common category of languages read by the Nearly half (47.3%) of the participants were recruited participants (39.6%). Close to a quarter (24.3%) of from the Western Highlands Province. While only the participants reported that they could not read any 8.3% of the sample were recruited from the Southern language (Figure 12). Highlands Province this represented 50% of all people on ART enrolled on ART from this recruitment site. Tok Pisin and English with or without another language 39.6 NOT Motu (n=147) Table 1: Recruitment by province Cannot read (n=90) 24.3 Province of Frequency Percentage Tok Pisin only (n=48) 12.9 recruitment

Tok Pisin and another language 7.8 NOT English or Motu (n=29) Chimbu Province 23 6.15 Tok Pisin and Motu with or Morobe Province 23 6.15 without another language 7.3 National Capital NOT English (n=27) Tok Pisin, English and Motu with District 108 28.88 or without another language 5.9 Western Highlands (n=22) Province 178 47.59 English only (n=6) 1.6 Southern Highlands English and either Province 34 9.09 Tok Ples or Motu (n=2) 0.5 Eastern Highlands 0 5 10 15 20 25 30 35 40 Province 8 2.14 % Figure 12: Languages read TOTAL 374 100.00

Papua New Guinea Institute of Medical Research and University of New South Wales 23 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Keys findings

Knowledge and beliefs regarding to knowing whether mosquitoes could transmit HIV, HIV and ART with only 77.3% knowing that they could not and 13.4% believing they could. Close to 10% of the Medical knowledge about HIV amongst the participants participants did not know if HIV could be transmitted in the study was very high, with at least three quarters by mosquitoes. Wilde (2007) also found that people answering every question correctly (Figure 14). in PNG believed that mosquitoes transmit HIV.

1.9 Furthermore, 10% did not know if a person on ART 100 2.9 9.4 4.0 8.6 could still infect their sexual partner with HIV. 13.7 4.0 80 Close to 15% of the participants believed that condoms did not prevent a person from being infected with HIV. As Jack said: 60

77.3 I don’t trust condoms. Sometimes when it comes out of % 95.2 87.4 the factory I don’t know if it might have holes in it and the 40 82.0 virus might be transferred to the woman and if she dies then it’s my fault. That’s why I don’t want my wife getting the virus. That’s also why sometimes I don’t like to have 20 sex with my wife. (Jack, 35+, Chimbu Province)

13.4 Mi ino trustim kondom. Sampla taim ol wokim long 0 Can HIV be Can HIV be Can the correct If a person is on factory ya em kam long em mi ino save gut na igat hole transmitted transmitted by use of ART, can they between a man Mosquitoes? condoms infect their stap em nogut em bai transfere igo long meri kisim na and a woman? (N=374) protect you sexual partner (N=374) from HIV? with HIV? dai em wrong stap long hand bilong mi. Olsem na mi ino (N=372) (N=372) laikim meri bilong mi bai kisim. Olsem na sampla taim mi Yes No Don’t know les long silip wantaim meri bilong mi. (Jack, 35+, Chimbu Province) Figure 14: Knowledge and beliefs regarding HIV No relationship was found between gender and The highest level of knowledge (95.2%) was in relation medical knowledge and beliefs regarding HIV. There to knowing that HIV could be sexually transmitted was no relationship between time since diagnosed between a man and a woman. In the words of one with HIV, or time on ART, and knowledge and beliefs woman, HIV can be transmitted: regarding HIV. Furthermore, there was no relationship between religious denomination and knowledge and From promiscuity, sleep with a man, like you don’t use a beliefs of HIV. condom and you sleep without it, that’s how it’s passed. Having unprotected sex and you don’t use a condom Distinguishing medical knowledge (i.e. information) and you have sex flesh to flesh, man and woman don’t from lifeworld knowledge (local ways of understanding use a condom. (Lyn, 23, Eastern Highlands Province) and experiencing the world) of HIV is critical because it allows for the inclusion of views and beliefs that Lo passin pamuk, silip wantaim man olsem yu no usim are often marginalised and left out. In the qualitative condom na yu silip nating, em save kamap lo displa. Silip interviews it became evident that a tension existed nating na yu no usim kondom, na silip skin to skin man between medical knowledge and lifeworld knowledge. na meri ino usim kondom. (Lyn, 23, Eastern Highlands Many of the participants attributed the cause of HIV Province) to spiritual and moral discord and thus believed the cure was to be found in addressing the cause of this The lowest level of knowledge was found in relation discord and returning to ‘harmony’ with God:

24 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Knowledge and beliefs regarding HIV and ART

We call it virus but I want to say it’s the devil inside This [Revival] church witnessed to me so I went to this the human beings. It’s the devil. It’s a spirit of sexual church, I didn’t ignore the call. I just went got baptized immorality saying that I want to say it’s the spirit of and I got Holy Spirit and Holy Spirit worked inside… adulterous ways. God says ‘Okay, you destroy my I heard many testimonies of how God had healed temple, I will leave this spirit, this spirit of adulterous their sickness. Now I believe that God has healed my ways’. (Isaach, National Capital District) sickness too. (Mek, Western Highlands Province)

We call it virus but I want to say it’s the devil inside Displa [Revival] church em bin witnessim mi so mi bin go the human beings. It’s the devil. It’s a spirit of sexual long displa hap, mi no passim bel. Mi go tasol mi baptize immorality saying that mi laik tok olsem em spirit blong na mi kisim Holy Spirit na Holy Spirit em wok insait …Mi pasin pamuk. God i tok ‘Okay, yu bagarapim temple harim planit testimony long God ihealim sik blong ol. blong mi bai mi larim dispela spirit, dispela spirit blong Nau mi belief olsem God ihealim sik blong mi tu. (Mek, pasin pamuk’. (Isaach, National Capital District) Western Highlands Province)

It’s not a disease that was given from a man from this earth. God himself gave this sort of disease. We Scientific knowledge about ART was high with at least disobeyed his words. If a man from this earth gives three-quarters of participants responding correctly to medication, it will not finish…You come back to God, the two questions about it (Figure 15). God will complete all this and remove it. (Tatakal, Morobe Province) 3.2 100 7.8 Olsem ino man bilong dispela graun i givim dispela sik. 13.1 God yet givim dispela kain sik. Yumi no save harim 80 tok bilong em. Sapos man bilong dispela graun givim marasin, em bai nonap pinis…So yu kam bek long God, God bai completim ol dispela sik na rausim go. (Tatakal, 60 Morobe Province) 74.3 %

40 83.6 We call it virus but I want to say it’s the devil inside the human 20 beings ... It’s a spirit of sexual 17.9 0 immorality... ART can reduce the amount ART can cure HIV? of HIV in the body? (N=374) (N=373)

No Don’t know This belief in cure of illness by turning to God is Yes common throughout PNG and not restricted to HIV Figure 15: Knowledge and beliefs regarding ART (Eves 2003, 2008, nd). Prayer, as Eves (2009) notes, becomes a treatment strategy. However, The majority of the sample (83.6%) understood the acceptance of Christian causes of illness is not always role that ART played in reducing viral load by reporting straightforward and does not exclude other healing that they believed ART could reduce the amount of strategies. Despite the fact that involvement in this HIV in the body. However, 13.1% believed that ART study required that people be on ART, many still could not reduce viral load (Figure 15). There was not held a strong belief in the ‘medicalisation of morality’ a significant relationship between gender and belief (Eves nd) and believed that God would heal or even regarding whether or not HIV could reduce viral load. had healed them of HIV. Having already lost his first wife to HIV and then remarried, Mek was taking ART. Very few participants employed the medical discourse His new wife, who also had HIV, did not take ART of viral load and CD4 cells but one who did was ‘because she fears God and has put trust in him’. Nathaniel: Highlighting the extent of the tension in knowledges, Mek who has been ‘witnessed to’ by the Revival Maybe because of ART my viral load has gone down Church since being diagnosed with HIV he has put inside my body, that I wouldn’t know, but ART made his ultimate faith in spiritual healing, but not at the my CD4 go up and I’m still alive. (Nathaniel, National cost of taking ART: Capital District)

Papua New Guinea Institute of Medical Research and University of New South Wales 25 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Knowledge and beliefs regarding HIV and ART

Maybe ART em I mekim na ol viral load ol I go daun o Its sort of cripples the HIV virus na em save lokim ol. It olsem em I wokim insait long bodi mi noken save, bat takes them as prisoners and does not destroy them - em ART mekim na CD4 bilong mi em I go antap o olsem na save lokim ol long wanpela hap kona blong bodi.(Isaach, laip bilong mi sanap I stap. (Nathaniel, National Capital National Capital District) District) The metaphore of the fence is drawn from the ART While not in the language of treatment offered by preparedness training in PNG that PLHIV undergo science, the majority of people were able to describe with an ART prescriber. Before a PLHIV begins the ability of ART to reduce viral load without curing treatment, the prescriber uses a visual flip chart to them. Participants drew on metaphors of fences describe aspects of ART. To describe the impact of (banis), prison (kalabus) and sleep (slip) to describe ART on viral replication there is a culturally appropriate control of viral replication: image of a garden with a fence around it. The pig (HIV) destroys the fences and is able to destroy the When this medicine goes into my body, it makes the garden (the immune system). Therefore a fence must virus sleep, makes it weak so that it doesn’t control be built to prevent the pig from breaking down other me or my mind and body. I must control it inside me fences and destroying the garden. with the help of medication. (Chris, 33, National Capital District) The majority of people believed that ART could not Marasin em olsem taim em go insait long bodi bilong mi, cure a person of HIV (74.3%). However, like Joan, a em save kipim dispela binatang bilong mi long slip, slipim 16-year-old girl from the Southern Highlands Province em, wokim em weak so em noken kontrolim mi o kontrolim who simply said ‘it will cure’ (‘Em bai pinis’), close to maind bilong mi o bodi bilong mi. Mi mas kontrolim em one fifth of the sample believed that ART could cure insait long mi wantaim marasin mas kontrolim em. (Chris, the virus. A slightly higher proportion reported this 33, National Capital District) belief in a cure in an Indian study of people with HIV (26.6%) (Ramchandani et al. 2007). In this study less than a tenth (7.8%) were not sure if ART could cure I heard many testimonies of how someone of HIV whereas in the same Indian study nearly a quarter of the sample were unsure (23.1%). God had healed their sickness. This is in contrast to the VSO Tokout AIDS in PNG Now I believe that God has healed report (Levy 2008) which showed that no one believed there was a cure for HIV once a person was infected my sickness too. (Figure 15).

There was no significant relationship between gender Perhaps this ART is for stopping the virus by fencing and belief regarding whether or not ART could cure and blocking its movement (Stanley, 23, Western someone of HIV. There was no significant relationship Highlands Province) between gender or religious denomination and knowledge and beliefs regarding ART. Iting dispela ART emi bilong stopim dispela binatang long banisim na passim movement bilong em. (Stanley, 23, The majority of men and women believed that ART Western Highlands Province) worked or worked well (90.6%) (Figure 16).

It prevents or gathers the virus and makes a sort of fence or brick wall so that the virus can’t go back and attack the white blood cells. (Norman, Western Highlands Province)

Emi save banisim o bungim ol mekim sort of a fence o brick wall so that oli noken go bek na attackim ol white blood cells. (Norman, Western Highlands Province)

It sort of cripples the HIV virus and locks them. It takes them as prisoners and does not destroy them— it locks them in one corner of the body. (Isaach, National Capital District) Figure 16: Beliefs regarding the effectiveness of ART

26 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Knowledge and beliefs regarding HIV and ART

People described experiences and opinions that went Commonly referred to in the international HIV literature beyond talking about ART as simply a medicine. as the Lazarus Syndrome9 (cf. Trainor and Ezer, When reflecting on the effect that ART had on HIV 2000), the return to life after diagnosis and illness some people spoke of a changed relationship with was also expressed in the stories and drawings of their illness because they were able to forget they had participants: HIV and in this way a sense of hope was restored: But the people who are taking the medicine I see that I had no hope for my body…It has helped my body they’re coming back to normal, I mean not normal to work and forget about what is in my body. (Sasha, but extra normal, they are recovering. (Joe, Morobe Southern Highlands Province) Province)

ART really gave me life again. Treatment really helped But ol lain we ol kisim marasin mi lukim ol wok long kam me a lot. With that treatment I thought that there was bek ken long nomol na ino nomol tasol extra nomol kain hope in life in me. (Inok, Southern Highlands Province) olsem, ol wok long go bek ken. (Joe, Morobe Province)

I thought that HIV was a friend of mine; it was here [Before ART] I was a dead man living in this community to stay with me. [With ART] I’ve forgotten already, my (Mek, Western Highlands Province) friend is lost already. (Tina, Chimbu Province) [Bipo ART] mi dai man em mi stap insait long community Em I olsem mi ting olsem em I wanpela fren blong mi; Em (Mek, Western Highlands Province) I kam stap wantaim mi. Mi lus tingting pinis, fren bilong mi em I lus pinis. (Tina, Chimbu Province) Images of HIV as a death sentence were strong amongst the drawings by people with HIV when Along with her comment above, Tina drew the describing life before ART in the in-depth interviews. following pictures: Three images include the following:

Image 4: HIV before Treatment Image 1 and 2: Impact of ART on HIV

One man drew his satisfaction with ART in the following image:

Image 5: HIV before Treatment

Image 3: Positive physical impacts of ART 9 The Lazarus Syndrome refers to the biblical story where Lazarus was raised from the dead.

Papua New Guinea Institute of Medical Research and University of New South Wales 27 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Knowledge and beliefs regarding HIV and ART

Image 10: A return to life

This idea of having been given life because of treatment was also seen in the narrative of Valerie, but her story points to an important difference. Having two infants die from complications associated with Image 6: HIV before treatment HIV, Valerie, who was diagnosed HIV-positive during her third pregnancy, described the effectiveness of The return to life after treatment is evident in images ART in relation to giving life to her child—not herself: 7 - 10: My faith in the medicine was that the medicine had done a great work through the birth of my child and I myself am in good health again. I say thank you to God for giving man this knowledge to come up with this medicine so that my child is alive. So the medicine has done a great work. (Valerie, Morobe Province)

Bilip bilong me long marasin em olsem marasin em wokim bikpela wok through long pikinini bilong mi em kamap na Image 7: A return to life mi yet mi kamap gut gen. Mi tok thankyou long God long givim save long man na ol wokim marasin na pikinini bilong mi em kamap. So marasin em wokim bikpela wok tru. (Valerie, Morobe Province)

But the effectiveness of treatments, people realised, was fragile and dependent on not developing drug resistance which therefore meant treatment adherence was critical. Inok, also a Voluntary Counselling and Testing counsellor, spoke of this fragility of hope:10 Image 8: A return to life I have to take my medicines morning and afternoon. I cannot, they told me, miss the medicine. If I miss a medicine a day, the medicine will be resistant in my body. So it was that advice that they gave me so I have to take my medicine everyday morning afternoon, morning afternoon. So if I don’t take the medicine one day, then the medicine will be like resistant to my body so it won’t work again in my body. So to help myself with the medicine in my body I have to take it everyday. (Inok, Southern Highlands Province)

Image 9: A return to life

10 For international research on the fragility of hope and treatments see Kelly 2007 and Rhodes et al. 2009

28 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Knowledge and beliefs regarding HIV and ART

Access to services between gender and difficulty accessing treatment. No significant relationship was identified between The majority of participants did not experience occupation (and financial or logistical issues difficulties accessing treatment services and reported associated with employment) and difficulty accessing that they were satisfied with key areas of attending treatment. clinics providing ART. There was a significant relationship between where participants received their treatment and having Source of treatment experienced difficulty in accessing treatment (χ2 (1) = 8.174, p = 0.004) (Figure 18). Those who attended A majority of the sample (69%) reported accessing Catholic Health facilities reported greater difficulties their medication at government hospitals while the accessing their treatment service than those who remaining 31% reported accessing their medication attended a government-run facility. This is an artefact at Catholic Health facilities. There was a difference of the geographical location of the Catholic services, in the source of treatment based on where people which are in the Highlands Region, where people travel resided. In the Highlands Region 51.7% of the sample long distances for treatment. This is also borne out by received their ART from a government facility while the the analysis, which shows that although there was no remaining 48.3% attended a Catholic Health facility significant relationship between region of residence for their treatment. Since there are no Catholic ART and finding it difficult to access treatment, a higher services in the Momase Region it is not surprising proportion of those in the Highlands Region (39%) that no one in the study who lived that that region reported having had difficulties accessing treatment attended a Catholic Health facility for treatment. In compared to those who lived in the Southern (27.6%) the Southern Region almost all (98.1%) of the sample or Momase (21.7%) Regions. received their treatment from a government facility.

The majority of people first heard about ART from a 100 health service (66.5%), with less than 10% of people reporting family and friends (9.9%) and PLHIV 80 networks (7.3%) (Figure 17). 70.2 54.3 60 80

% 70 66.5 40

60 20 45.7 50 29.8

% 0 40 STI clinic or Government Catholic health facility Hospital (N=258) (N=116) 30 Yes No 20 Figure 18: Difficulty accessing treatment by source of ART 9.9 7.3 10 4.5 5.6 1.1 2.5 2.5 0 Barriers to accessing treatment Other Other Church Radio Other PLWHA Family Health (n=4) media (n=9) (n=16) service net- and service (n=9) pro- work friends (n=236) ART is provided free of charge in PNG. However, this vider (n=26) (n=35) does not mean there are not challenges in accessing (n=20) clinical sites where ART is prescribed and as this study Figure 17: Where people first heard about ART showed, finances are the major obstacle to treatment access with 60.5% of those who reporting difficulties Experiences in accessing treatment accessing treatment identifying this as the primary Overall, access to treatment services was good. cause. A multi country study in Africa (Botswana, The majority of the respondents (65.2%) did not Tanzania and Uganda) similarly identified transport report experiencing any difficulties when accessing costs as a major concern; however, they identified it treatment, while 34.8% reported that they did. as a particular concern for adherence (Hardon et al. There was no significant relationship identified 2007).

Papua New Guinea Institute of Medical Research and University of New South Wales 29 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Access to services

Access to services was reported as a barrier by almost long kam na kisim marasin. Long sait bilong finance a third (30.6%); this included living too far away, tribal tasol but long kam long klinic na kisim marasin em free. fights resulting in road blocks and the hospital running (Valerie, Morobe Province) out of medication (Figure 19). Experience of attending the clinic

Participants in the study were predominately satisfied with key aspects of attending the clinic for treatment such as staff friendliness, the availability of education and support on taking ART, respect of privacy and the appreciation shown by staff of the difficulties of living with HIV (Figure 20).

4.3 100 7.8 15.6

80 61.3 Figure 19: Barriers to accessing treatment 60 94.9 91.4 % 95.7 84.4 92.2 For one woman who had to travel two days each 40 way to access her ART clinic, combined issues of distance, the wet season and the financial cost posed 20 38.7 a great challenge: 5.1 8.6 0 Staff at the Staff at the Wait too It is good Staff at the Staff at the That day the river had flooded and I prayed to God, ART clinic ART clinic long to see talking art clinic ART clinic do not don’t the doctor with other gives are friendly ‘God, whatever need I have, you know, where I want repect under- or nurse PLWH at support (N=372) your stand the (N=372) the ART and to go, you know so please this river must go down and privacy difficulties clinic education you make the way for me and I must go..’ To travel (N=372) taking ART (N=372) on taking (N=372) ART from my village is very far. I have to pay K40 to come (N=372) here and get my medicine and another K40 to go back Yes No home. It’s K80 to come and return. (Dorethy, Southern Highlands Province) Figure 20: Experiences of attending the clinic

Dispela taim wara i bin taight na mi pray long God, ‘God The aspect that the participants were least satisfied mi gat wanem kain need yu yet yu save, mi laik i go long with was the amount of time that they had to wait to en yu save so please dispela wara mas i go daun na yu see a doctor or nurse at the clinic (38.5%). This is mekim rot bilong mi na mi mas i go’…Na long ples long not unique to PNG. In Botswana 57% of respondents kam long here em longwe. Mi mas baim K40.00 long kam reported that they spent four or more hours waiting at long hia na kisim marasin na K40 long go bek. Em K80 the clinic each time they visited (Hardon et al. 2007). long kam na go (Dorethy, Southern Highlands Province) Having to wait to see a health care worker meant sometimes waiting in very long queues outside the But it was not just those who had to travel several clinic where others could see them. For a few (‘Displa days each way like Dorethy who reported financial meri igo insait longdispla klinik em mas gat AIDS’) difficulties in accessing the clinic. Even those who (Lyn, 23, Eastern Highlands Province) being made. had to catch a PMV (public motor vehicle) in the major Therefore, attending clinics to access ART can in towns and cities had trouble: itself produce stigma. Some informants spoke of employing techniques to avoid shame, stigma and I’ve not had to struggle or had difficulty in this area, unwanted disclosure when accessing the clinic. but the only problem is regarding money to pay for the PMV to come to get my medicine. It’s the finance side I don’t want people to know that that woman [I] have that I find hard to come to the clinic but the medicine is this sickness and she is going to the clinic. This type of free. (Valerie, Morobe Province) thought comes to me. I feel ashamed. Now that I am married, it’s no good if my husband’s family says, ‘That Struggle, na hevi long dispela em mi nogat tasol, problem woman must have this sickness and has gone into the long sait long money long baim kar kam na dispela kain hospital for AIDS people’. This thought still comes.

30 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Access to services

When I want to go I go through the x- ray room and many of us but now there’s so many and the Clinic is then go to the back road and go inside. I go and spy, always full. So it seems that I see that we need more and if there is no one I know I go quickly inside the doctors, nurses and Clinics or similar sites where this door. When I want to come back I spy and if there is no sort of services facilities are provided so that people one I know then I quickly go outside to the back road. I can go inside and have access to all this treatments go by myself. My husband follows me sometimes. My or make this existing ones a bit bigger and provide a husband is usually afraid so he waits for me outside better service (Nathaniel, National Capital District) (Sophia, National Capital District) Long lukluk bilong mi, ol dispela helt wokas, ol ken Mi les long ol man save olsem meri gat sik na em go impruvim wok long givim ART long ol lain. I better em long klinik. Kain ting save kisim mi. Mi save sem. Taim mi olsem may be em efficiency system bilong ol long hausik marit nau nogut lain bilong man bai tok nogut ‘Meri mas ya na sampela taim ol lain we ol I referim ol kam long sik na em go insait long hausik bilong AIDS lain’. Nau hausik, ol save weit longpela taim. Save takim narapela save kisim mi yet. Mi laik go nau mi save katim long x ray taim gen long ol go putim ol long ART. Olsem kain olsem room na katim long bek rot na go insait. Mi save go spy mipela stap pinis long ART ya, taim mipela save kam ya, nogat save pes mi save sut go insait long door. So mi laik em mipela save weit longpela taim tu bikos bipo fes taim kam bek mi save spy nogat na bai mi sut go autsait long em mipela ol lain manmeri namba I liklik. Nau planti lain bek rot. Mi wan save go. Man bilong mi save bihainim mi save kam na klinik save pulap. So luk olsem mipela nidim sampela taim. Man bilong save poret so em save wait ol planti ol dokta na nurses na mipela nidim olsem dispela autsait long mi. (Sophia, National Capital District) klinik o ol sampela ol sites we ol operated ol dispela kain services facilities em can be bikpela liklik so that ol manmeri ken go insait gut na go accessim ol tritment The doctors and nurses are gutpela liklik. (Nathaniel, National Capital District) always smiling and saying hello The aspect of attending the clinic that the participants like we are just normal people like were most satisfied with was that the staff were friendly (95.7%) and, as one woman from the National Capital everybody else... District said of her relationship with the clinic staff:

However, not all participants felt the same shame: My doctor advises me not to worry. I mean she checks me and jokes with me and all that so when I come I tell I feel good to come and take medicine. When people her about what’s happening at home with my husband. stare at me I don’t mind. I’m happy collecting medicine All those little talks makes me feel happy…The doctors and go back… I don’t mind and feel ashamed of people and nurses are always smiling and saying hello like we seeing me coming to the hospital. (Rebecca, Chimbu are just normal people like everybody else. (Rita, 27, Province) National Capital District)

Mi save pilim orait long kam kisim marrasin. Ol lain lukluk The type of education and support that the staff mi no save bisi long ol tu. Mi save hamamas long kisim provided focused on taking treatments on time marasin na go bek… Mi no save bisi na sem long ol man but it also covered other aspects of living while on lukim mi kam long hausik. (Rebecca, Chimbu Province) treatment such as nutrition, sexual practices and hygiene. There did not appear to be consistency in Not everyone who participated in the qualitative the recommendations provided in regards to sexual interviews were happy with the clinics they attended. practices. While many were supported to sustain For Nathaniel it was over-crowded and he believed safer sex there appeared to be a number of health there was poor scaling up of ART to all newly care workers who provided a different sex message. diagnosed people: Under the guise of desirable outcomes such as improve nutritional intake on treatment and prevent From my point of view, I think these health workers can the future transmission of HIV, health care workers improve their performance on giving out ART to infected are subtly, yet directly, trying to control the conduct people. It will be better if the hospital system is efficient of PLHIV: because sometimes the referrals to the hospital, we wait a long time. It ususlly takes extra time again to Don’t eat greasy food, don’t have sex with like some put them on ART. For our case, like people who are other people and your hands and legs must not have already on ART, when we come again we wait a long cuts when you prepare food. (Monica, 32, Morobe time as well because when it first started there weren’t Province).

Papua New Guinea Institute of Medical Research and University of New South Wales 31 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Access to Services

Noken kaikai gris kaikai, noken silip wantaim olsem It’s been two years since I was here and they [my sampla lain na lek han bilong yu ino ken cut na kukim family] have been receiving counseling as well and kaikai. (Monica, 32, Morobe Province) so now I feel that they feel free to talk with me, sleep, eat together, use blanket, clothes or share bits of food This has particular consequences for sexual practices. and other thing so now I feel that things are back to Some people even became fearful of sex as a result normal. It’s like I went back and joined the family and of the health care worker’s advice and have abstained have become their child again. At first I was also afraid from sex since: of them but now I feel all right. And now, I am living like how we used to live before. They [the Sisters] It’s like when I go for trainings they say that the dirt also came and did some awareness and also gave is below and the clean water is on top and when you some education sessions to my village…Some they shake this water the dirt and the clean water will mix understood and got the education from them like like when you have sex with a man the virus of the the school children, the working people or like those man and the woman will work really hard and it will hospital staff and like those others coming and hugging make you feel weak and symtoms will quickly appear us. (Salome, Southern Highlands Province) and you will lose weight, feel very sick and die. I went to training and that’s what they told me. That’s why my ...I won’t sleep with a man and I thoughts on not sleeping with a man is strong this are strong and I won’t sleep with a man and I must stay by must stay by myself and this virus myself and this virus disease will just live in me without disease will just live in me without any strength. (Tina, Chimbu Province) any strength... Em olsem ol I taim mi go long training nambaut [na] ol I tok pipia em I stap tamblo na klinpla wara em I stap antap Nau mi stap ya em olsem mi sindaun igo go na olsem na taim yu sekim dispela wara em pipia na klinpla wara 2 years i kam igo na ol kisim counseling tu so nau mi bai mix, olsem taim yu sex wantaim man, em bai dispela pilim olsem ol pilim free long toktok wantaim, slip kaikai virus bilong man na meri em dispela binatang em bai wok wantaim mi usim blanket clothes o olsem pulim half kaikai strong na em bai wokim yu na yu bai filim wik na sik bai displa kain so nau mi feelim olsem bek to normal. Mi go sow aut hariap na skin blo yu bai lus na yu bai filim sik bek joinim family ken na displa kain na kamap pikinini nogut tru na yu bai dai. Dispela em mi skul na ol I tokim bilong ol gen na displa kain. Pastaim olsem mi tu fret gen mi olsem. Olsem na dispela tingting blo mi em I strong long ol na displa kain na mi bin stap nau em olsem mi feel olsem mi noken silip wantaim man mi mas stap lo mi yet orait. Na mi stap normal gen olsem before mipla stap long na dispela binatang em bai stap tasol na nogat strong em olsem mi stap gen. Olgeta kam na em bin kam wokim bilong em. (Tina, Chimbu Province) awareness long hap na wokim liklik toktok long hap long skulim ol. Sampla ol understand na kisim skul long em They told me not to eat greasy food and stopped me kain olsem ol skul pikinini na wok man meri o kain olsem ol from having sex with men. Don’t get married. They haus sik wok man meri o kain olsem nabaut ol kam holim stopped me from eating cold food. Eat a lot of good passim mipla. (Salome, Southern Highlands Province) food. You can go and get married but you will destroy yourself again so don’t get married. (Rebecca, Chimbu The most extreme form of control exhibited by a Province) health care worker regarding the sexual conduct of a PLHIV on ART was seen with Rondalis. Having Ol tokim mi noken kaikai ol gris kaikai na ol tambuim mi experienced a profound change in her sexual desire long noken silip wantaim ol man na dispela kain. Noken since commencing treatment, she fell in love with and marit. Sampela ol taimbuim mi long noken kaikai ol kol married an HIV-negative man. Rondalis explained kaikai na noken kaikia olsem, ol gutpela kaikai yu ken that she decided to participate in the study only to kaikai planti. Marit yu go marit tasol yu bai bagarap ken talk about her experience of discrimination by health so noken marit. (Rebecca, Chimbu Province) care workers, who threatened to withdraw her from the ART program based on her relationship with an Other support which was not about PLHIV conduct HIV-negative man and her decision not to comply with but helping to reduce stigma included counselling for their advice, which was abstinence.11 So, distressed the family and the village: and angered, she recalled the following:

11 Paxton et al. (2005) found that in Asia the majority of people with HIV had experienced some form of stigma and that the most common location of stigmatising attitudes and behaviours was the health care setting.

32 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Access to services

I said, ‘I went to the hospital and all that and they didn’t Later on who else will talk and they would fix this? give me the medicines because of you’. ‘If you didn’t Perherps you’re afraid they’ll take you off ART and come to the house and didn’t insist on marrying me, I you’re hiding and coming; now you must go and tell the wouldn’t have got a bad name’. Me, they will treat me well truth. Now, I am thinking of talking about this so I came like before. (Rondalis, Western Highlands Province) so as to save others coming after me. ART doesn’t affect the desire to have sex. The desire for sex is still Mi tok, ‘Mi go long hausik nabaut ya ol no givim mi marasin there. (Rondalis, Western Highlands Province) just bikos long yu ya’. ‘Yu no kam lukim mi long haus blong mi na yu no strong long maritim mi, em bai mi no nap kisim Bihain bai husait bai toktok na ol bai stretim displa? Ating, bad nem’. Mi ol bai tritim mi gut olsem pastaim. (Rondalis, yu prêt olsem nogut ol bai rausim yu long ART na yu Western Highlands Province) haitim haitim na kam ya; nau yu mas go tokautim stret. Nau mi tingting long tokautim displa na mi kam olsem Wanting the research team to hear her story so that long seivim ol narapla kam bihain long mi. Olsem displa other young girls who undergo a renewed desire for ART em mekim tu na ino mins olsem em stopim disaia sexual intimacy on ART do not get similarly treated blong pasin blong bungim bodi. Pasin blong bungim bodi she concluded by saying: em I stap. (Rondalis, Western Highlands Province)

Papua New Guinea Institute of Medical Research and University of New South Wales 33 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Adherence

Adherence

Adherence—not skipping a treatment dose and compared to those in the Eastern Highlands Province, taking treatment at the prescribed time—is the most where they reported the poorest lifetime adherence— important factor for suppression of HIV and for the less than 40% (37.5%) (Figure 22). However, the prevention of drug resistance. So too is the accurate number of survey participants from the Eastern assessment of adherence critical for the care of Highlands Province was extremely low. people with HIV. However, there are many different assessments of adherence, or rather a missed dose. 100 This makes any straight forward understanding of adherence problematical. For example, in this study 80 37.5 we did not compare rates of adherence made by 59.7 people on treatment with those set out by their health 62.2 62.5 68.2 care worker. 60 % Lifetime adherence 40 62.5 37.8 37.5 40.3 Slightly less than half of the participants (45.6%) 20 31.8 reported having ever missed a dose of their medication. 0 Southern Western Enga Province Chimbu Eastern There were some regional differences in the Highlands Highlands (N=16) Province Highlands Province Province (N=22) Province proportions of people who reported having ever (N=37) (N=159) (N=8) missed a dose (χ2 (2) = 11.631, p = 0.003). Those Yes No who lived in the Southern Region (59%) were most Figure 22: Ever missed a dose by province within the Highlands likely while those living in the Highlands Region (39.1%) were least likely to have ever missed a dose Those who had been diagnosed with HIV for a longer (Figure 21). period of time were significantly more likely to report having ever missed a dose (χ2 (4) = 25.533, p = 100 0.000). Those most likely to have missed a dose had been diagnosed with HIV between one and two years previously (63.2%), with those diagnosed less than 80 41.0 six months previously (26.6%) the least likely to have 56.5 60.9 missed a dose (Figure 23). 60

% 100

40 59.0 80 36.8 45.0 43.5 20 39.1 56.2 58.3 60 73.4

0 % Highlands Momase Southern (N=235) (N=23) (N=105) 40 63.2 Yes No 55.0 43.8 20 41.7 Figure 21: Ever missed a dose by region of residence 26.6

Although the relationship was statistically non- 0 < 6 months 7 -12 months 1-2 years 2- 4years Over 4 years significant it appears that there is not uniformity (N=94) (N=64) (N=68) (N=80) (N=60) throughout the Highlands Region regarding lifetime adherence. Those people who resided in Chimbu Yes No Province had the greatest lifetime adherence (68.2%) Figure 23: Ever missed a dose by time since diagnosed with HIV

34 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Adherence

Not surprisingly, there was a significant relationship 100 between the length of time participants had been on ART and having ever missed a dose (χ2 (4) = 80 66.7 36.4 17.273, p=0.002). Those least likely to have ever 47.8 55.9 55.6 56.6 missed a dose were those who reported having been 65.1 on ART for less than 6 months (32.4%). Those most 60 likely to have missed a dose reported having been % on treatment for one to one and a half years (58%) 40 (Figure 24). The proportion of people who reported 63.6 missing any dose of treatment did not vary significantly 52.2 44.1 44.4 43.4 based on gender, church attendance, alcohol use, the 20 34.9 33.3 source of treatment, occupation, education or having experienced any difficulty accessing treatment. 0 SDA Catholic Lutheran United Evangali- Penticos- Revival (N=63) (N=68) (N=42) (N=23) cal tal (N=77) Alliance (general) 100 (N=9) (N=83) Yes No

Figure 25: Ever missed a dose of treatment by religious 80 42.0 43.5 denomination 50.0 51.4

60 67.6

% Implying an almost religious devotion, many of the participants spoke of taking their treatments 40 ‘faithfully’. 58.0 56.5 50.0 20 48.6 I don’t miss my ART; I faithfully take it. (Nathaniel, 32.4 National Capital District)

0 < 6 months 7 -12 months 1year-1year 1year >2years ART bilong mi em mi no save lusim. Em mi save faithful (N=142) (N=80) 6months 7months- (N=37) long kisim. (Nathaniel, National Capital District) (N=88) 2years (N=23) Yes No And the reason for this is because of the life it has Figure 24: Ever missed a dose of treatment by time on ART given them:

If I don’t take my medication it’s like I’m trying to kill However, and very importantly, there was a significant myself so I must take this medication all of the time. relationship between religion and adherence. (Salome, Southern Highlands Province) Excluding those who identified as Evangelical Alliance (because the number is too small) there was Sapos mi ino drin marasin liklik em bai mi yet laik kilim mi a significant relationship between religious affiliation yet so mi mas kisim displa marasin olgeta taim. (Salome, and having ever missed a dose (χ2 (6) =16.161, p = Southern Highlands Province) 0.013) (Figure 25). Of all religious affiliations, those who identified as members of the Revival Church Medication – some people may forget but I find it hard were significantly more likely than any other to have to forget because it has given me life and that’s why I’m ever missed a dose of treatment (63.6%). still alive. (Sasha, Southern Highlands Province).

Papua New Guinea Institute of Medical Research and University of New South Wales 35 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Adherence

Adherence in the last week

Developing the notion of religious devotion to The majority of the participants (79%) had been treatment as implied by taking treatment faithfully, 100% adherent in the previous week. This high rate Inok of the Southern Highlands Province shared that of adherence was similar to results in other studies in each morning when he woke for daily devotions he the region. A study in China found that 80% of people prayed the Rosary over his ART and then, and only on ART had been adherent to their treatment in the then, when they were blessed, did he take them. previous week (Wang et al. 2008) and another study He repeated this same dosing practice at the end in Australia found that 75% of their sample had been of the day. Participants also spoke of maintaining 100% adherent in the previous month (Herrman et al. adherence to ART to ensure the long-term effects 2008), whereas in India a recent study found only 60% of treatment, cautioning against what Stanley calls of participants had been fully adherent (Cauldbeck et missing their medicine but what might be called a al. 2008). In this study, of those who had missed a treatment break: dose in the previous week, most reported missing only one (7.8%), with a slightly smaller percentage I take ART daily so it can fence the virus. I see some having missed more than seven doses (5.7%) or two people, many times when they see that they gain weight to three doses (5.4%) (Figure 26). back they miss their medicine for some months and later they face some problems. (Stanley, 23, Western Highlands Province)

ART Mi save kisim daily so em ken banisim binatang. Mi lukim sampela, planti taim oli kisim skin bek oli nabaut oli lusim ART sampela months bihain oli painim sampela kain problem nabaut. (Stanley, 23, Western Highlands Province)

The data reinforced the importance of religion in the lives of people living with HIV, both generally and

specifically in relation to treatment. While not all of Figure 26: Frequency of missing a dose in the last week the participants believed that they will be healed of HIV by God, some did. One woman from Western Highland Province, who had recently been on a A study by Murphy et al. (2000) found that one quarter Revival crusade and told that she was cured and that of their patients believed that they were still adhering she should now re-test for HIV, stated: to their treatment if they took their treatment within a 24-hour period. With studies like this in mind, Llabre One day I will quit this medicine, that’s what I think et al (2006) suggested that studies on adherence because God will heal me. (Marianne, 24, Western fix the time by which a treatment dose is late (for Highlands Province) example four hours) so that adherence assessments could have greater compatibility. For this reason, and Similarly, Monica from Morobe Province, who had because of the implications of taking a dose of ART just returned from a faith healing prayer group, was later than the prescribed time and not just missing the convinced she was healed and returned to the clinic dose altogether, in this study, participants were asked where she had been interviewed the day before and how frequently in the last week had they taken their shared with one of the researchers that she was treatment later than the time the health care provider returning to be re-tested. had advised they take it.

36 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Adherence

This was an appropriate wording for PNG since the HIV (13.5%) and other people being around at the ART prescribers give the person a specific time to time treatment is due (12.3%) (Figure 28). take their treatment such as ‘7 am and again at 7 pm’. The majority (65.4%) of the sample reported Forgot to take medication that they had taken their treatment at the correct (N=170) 51.2 48.8 Didn’t have enough food 84.7 time as told to them by their ART prescriber. The (N=170) 15.3 Busy looking after children most frequent number of doses taken at the wrong (N=170) 14.7 85.3 time in the previous week was two to three times Taking medication was a reminder of HIV status (N=170) 13.5 86.5 (12.4%); however, a similar proportion had taken Other people were 12.3 87.7 their treatments at the wrong time more than four around (risk disclosure) (N=170) Medication caused side-effects 8.8 91.2 times in the week before the study (11.6%) (Figure (N=170) Difficult to swallow medication 8.2 27). Compared to a similar study in China, people in (N=170) 91.8 Too sick to take medication PNG were far more adherent to taking their treatment (N=170) 8.2 91.8 on time. In China, Wang et al (2008) reported that Would vomit after taking 5.3 medication (N=170) 94.7 only 21.1% of their sample took their treatment on Too many pills to take at once 5.3 94.7 time. Yet compared to the results of studies in Africa (N=170) Was drunk 95.3 it appears that PNG is less adherent to the timing of (N=170) 4.7 Didn’t believe mediction was 4.7 95.3 treatment. In Tanzania, approximately 93% took their helping (N=170) treatment at the right time while in Botswana 98% did Other (N=170) 33.5 66.5 0 20 40 60 80 100 (Hardon et al., 2006). % Yes No Figure 28: Reasons provided for not adhering to ART

A study in Rwanda found that the fear of having too much of an appetite and not enough food was an obstacle to adherence identified by 76% of the sample—the largest obstacle identified (Au et al. 2006).

Figure 27: Frequency of taking ART at the wrong time in the There did not appear to be a significant relationship previous week between education and adherence (ever having Together, these high rates of adherence in the previous missed a dose, having missed a dose in the last week week suggest that any problems with adherence in or in the last week not having taken medication at the PNG are not currently of major concern. However, as time the doctor prescribed) or between gender and people live longer on treatment, long after the most adherence. dramatic improvements in health and well-being and before long-term side-effects emerge, adherence may When those participants who reported having ever become increasingly important in PNG. Therefore missed a dose of treatment were asked if there efforts to sustain adherence are important. A similar were additional reasons for why they had difficulties argument has be made about adherence studies in adhering to ART, almost a quarter cited issues to do Africa (see Mills et al. 2006). with time (24.6%) and being busy (24.6%). Issues to do with time included having woken up late and not Facilitators and barriers having a watch or clock to identify the time to take treatment, in other words not having reminders to take Of the sample who reported having ever missed a treatment. Reasons given for being busy included dose since being on ART, the most common reason doing house work, looking after grandchildren, for not adhering to ART was forgetting to (51.2%), talking with friends or shopping at the market. The which is a common reason for non-adherence cited by people who identified availability issues referred to other studies (Brigido et al. 2001; Lauret et al. 2002; the availability of treatment in the hospital or in one Michaels 2005; Wang et al. 2008). Other common case the failure of a health care worker to attend to reasons included not having enough food to take with the ward with the treatment (Figure 29). And as one medication (15.3%), being busy looking after children woman on treatment described her reason for not (14.7%), medication being a reminder that they have adhering everyday:

Papua New Guinea Institute of Medical Research and University of New South Wales 37 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Adherence

25 Those who cited family-related reasons spoke of wanting to stay alive with their family and wanting to look after them or to stay alive and have children. 20 ART effectiveness was a concern, with people saying that they wanted ART to work, to stop disease 15 progression and to avoid opportunistic infections. Others reported reasons for adhering to treatment % 24.6 24.6 included being involved in the church, wanting to stay 10 21.1 alive to receive healing from God (spiritual), wanting to extend their lives, to put

5 10.5 lives in order, and to earn more money (personal) 8.8 (figure 31). 3.5 1.8 1.8 3.5 0 Fear of Side- Family Treat- Avail- Beliefs Trans- Busy Time disclo- effects obliga- ment ability regard- port (n=14) (n=14) sure (n=1) tions fatigue of ing (n=12) (n=1) (n=2) (n=2) treat- treat- ment ment (n=5) (n=6)

Figure 29: Other reasons for not adhering to ART

Sometimes I get tired like taking tablets every day. (Rita, 27, National Capital District)

Among the entire sample, some of the most common reasons identified for adhering to treatment included wanting to look healthy (94.7%), not wanting to die (92.9%), following doctors advice (92.9%) and Figure 31: Other reasons for adhering wanting the medicine to work (91.2%) (Figure 30).

Wanting to look healthy Although living to look after family and to live long (N=170) 94.7 5.3 enough to see children go to school were the sixth Not wanting to die (N=170) 92.9 7.1 and seventh most common facilitators for adherence Following doctor’s identified by the sample, from the qualitative interviews advice (N=170) 92.9 7.1 the importance of children as a driver to live (and Wanting ART to work (concerned about drug resistance) (N=170) 91.2 8.8 thus by implication adhere to treatment) was evident, Support from health-care particularly for women, who made comments such workers (N=170) 90.0 10.0 as ‘I will look after my children’ (Salome, Southern Support from family (N=170) 82.9 17.1 Highlands Province). For example, Gina who was Wanting to see children infected after being gang raped and who conceived a 77.6 22.4 grow up (N=170) child during the ordeal, gave up her child to a guardian Wanting to be able to work and earn money (N=170) 66.5 33.5 soon after he was born. Months later her child was Support from returned to her and of this she said: community (N=170) 61.8 38.2

Other (N=170) 96.6 86.0 I had no choice, I had to take it [my son], that was the

0 20 40 60 80 100 very moment that …it was really like I couldn’t control % so… I said it was okay, the child was an innocent kid Yes No and I had to take responsibility even though I had no Figure 30: Facilitators for adhering strength; I didn’t have enough strength to take care of the child. I took the child and I did everything I could Of the participants who reported other reasons do… So I had to stand up as a mother of a child and I for adhering to their ART treatment, roughly equal said it was okay, I have to do something good and that proportions cited reasons to do with family (34.3%) was the decision that I made at that moment and good and ART effectiveness (31.4%). things came out of me. (Gina, National Capital District)

38 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Food security and alcohol

Food security and alcohol

Food

Food is important when taking ART because it is required to facilitate the adequate absorption of treatment and to help restore health to people with HIV. Poor food security, as Mukhrjee et al. (2006) writes, can threaten HIV and AIDS programs.

Since taking ART, 72.8% of the sample reported that Figure 33: Ability to satisfy hunger resulting from increased they had experienced an increase in their appetite appetite on ART with two women describing the effect of treatment on their appetite in the following way: Concerning food, both of us find it difficult. No food-we The medicine has expanded my stomach and I want to just drink cold water and we go to bed… No food, I take eat plenty of food. (Gina, National Capital District)12 treatment without it. I train myself in case there is no food; I take it without food even when it’s there. It’s not good if My sister in-law used to say, ‘Before you don’t eat like that, I take it everyday with food and sometime if there is no now what’s wrong and you are cooking during the day?’ She food then it will be hard to take medicine again. And it’s will come and ask me like that. I used to say that it’s because no good if I do this and then who knows what will happen of this medicine that it’s doing that. The snake that is inside is to me internally, that I wouldn’t know. So what I do, one dead and I’m always hungry. (Betty, Chimbu Province) day I take it with food and the other day I take it without. Sometimes I take it with food and other times I take it Meri tambu blong mi save tok olsem, ‘Bifo yu no save kaikai without food. (Rosa, 23, Western Highlands Province) olsem nau yu olsem wanem na kuk long sun istap?’ Em bai kam askim mi olsem…Mi save tok olsem em dispela Long sait blong kaikai mitupela save painim hat. Nogat em marasin mi drink na mekim. Sinek istap insait ya idai na mi mitupela save drink kol wara na mitupela save silip… Nogat hangre klostu, klostu’ (Betty, Chimbu Province) kaikai em mi yet save dring nating. Mi yet save lainim mi nogut nogat kaikai mi save kisim nating kaikai stap tu mi Some 21.8% said that their appetite had stayed the save kisim. Nogut mi kisim everyday wantem kaikai na same while 5.4% reported that their appetite had sampla taim nogat kaikai em bai hat long dring marasin decreased since commencing treatment (Figure 32). gen. Na nogut mi mekimi olsem na mi kisim bai insait blong mi bai wanem gen, em mi no save. So what mi save mekim wanpla dei mi kisim wantaim kaikai na sampla taim mi kisim nating. Sampla taim mi kisim wantaim kaikai na sampla taim mi kisim nating. (Rosa, 23, Western Highlands Province)

City life is hard, we don’t work. We don’t work. I live with his relatives and they don’t know what kind of woman I am, they don’t know. Normally they just sit and do nothing and get hungry at lunch, then they look for food. But when he goes to the village and he doesn’t stay in the house or goes to another place, I do not have any support. The centres are there. So I go to the centres to get a little food to go with Figure 32: Impacts of ART on appetite my medicine. When there is no food I say ‘Ah I will not die’ When those whose appetite had increased were so I drink a lot of water and take my medicine. Moresby asked if they had enough food to satisfy their hunger, food isn’t good. (Sophia, 25, National Capital District) 32.7% reported that they did not have enough food (Figure 33). A study in Africa found that in the initial Citi em hard laif mipela stap nating. Mipela stap nating. Mi stages of ART treatment when people experienced stap wantaim lain bilong em na ol no klia mi wanem kain an increase in appetite, they could not afford the food meri, ol no save. Kain bilong ol long stap nating nating na to satisfy their hunger (Hardon et al. 2007). hangere long belo, ol painim kaikai. But taim em go long ples In the words of those who could not afford food in na em no stap long haus o kain olsem em go long sampela PNG the following was shared: ap em nogat sapot bilong mi.

12 This was not a reference to lipodystrophy.

Papua New Guinea Institute of Medical Research and University of New South Wales 39 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Food Security and Alcohol

Ol centres em ol stap. So mi save go long ol centres long kisim liklik kaikai long go wantaim marasin bilong mi. Stap nogat kaikai taim mi save tok ‘Ah mi nonap dai’, mi save drink planti wara na drink marasin. Mosbi kaikai ino gutpela. (Sophia, 25, National Capital District)

There was a significant relationship between region of residence and whether people whose appetite had increased since taking ART had enough food to satisfy their hunger (χ2 (2) = 17.586, p = 0.000). Those who lived in the Southern Region were most likely (52%) to report not having enough food to satisfy their Figure 35: Frequency of alcohol consumption hunger (Figure 34). This won’t help me but we feel normal so we just take it (Eric, 35+, Southern Highlands Province) 100

Dispela em no nap [helpim] tasol mipela save filim nomol so 34.4 80 37.6 mipela sa kisim tasol. (Eric, 35+, Southern Highlands Province)

60 Amongst those who reported not drinking alcohol, the main reasons for not drinking were never having % drunk alcohol (37.8%) and not drinking because 40 they had ceased as a result of having HIV (27.6%) 62.4 65.6 and/or starting ART (13.1%) with reasons to do with 20 HIV making up 40.7% together. The high proportion that stopped drinking as a result of HIV- and ART- 0 related issues highlights the importance placed by Since being on ART have Since being on ART has it you disclosed to anyone been easier to disclose that participants on adopting positive living habits in the you have HIV? (N=369) you have HIV?(N=348) presence of illness (Figure 36). Yes No 40 Figure 34: Region of residence for those who report having enough food to satisfy hunger on ART 35

30

There was no significant difference between the 25 proportion of people who reported having enough % 20 food to satisfy their hunger and gender. However, a 37.8 higher proportion of males (74.2%) reported having 15 27.6 enough food compared to females (63.4%). 10 13.1 11.0 5 1.8 2.1 Alcohol 0.7 1.1 4.9 0 Per- General Other Finan- Other Chris- ART HIV Never Discussions of alcohol (and other drugs) are common sonal Health (n=5) cial health tian realted related drank (n=2) (n=3) (n=6) reasons Pri- (n=37) (n=78) alcohol in relation to HIV-prevention and in positive living. (n=14) ciples (n=107) In relation to prevention, alcohol is often thought (n=31) Figure 36: Reasons why people report not drinking alcohol to contribute to the spread of HIV and alcohol consumption has been feared to reduce adherence Having being diagnosed with HIV and then having and interfere with ART effectiveness. The majority of to take ART for the remainder of their lives, many participants in this sample did not drink alcohol. of the participants (both men and women) spoke of undergoing a profound change in their lives, often but Close to eighty percent of participants reported that not always coinciding with a religious conversion: they did not drink alcohol while 15% only drank once in a while (Figure 35). One of the men who continued Before I used to drink and misbehave and all this but to drink and smoke cigarettes on ART explained his when I got this result, I don’t drink anymore. (Rosa, behaviour as an attempt at normality: Western Highlands Province)

40 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Food Security and Alcohol

Drink tu em bipo em tru mi save dring na biket raun na long marasin em mipela changim ol samting. Olsem em dispela risalt mi painim taim em mi no save dring. (Rosa, remindim mipela ken olsem mipela sik lain nau so mipela Western Highlands Province) mas lukautim mipela yet. (Sophia, National Capital District)

I used to tell them that, ‘I am a dead man, I already went Sometimes this advice of abstaining from alcohol six feet under but I came back through God’s power. came directly from the health care professionals: He saved me and I have quit all earthly enjoyments, all bad behaviours of this earth and give your life to God’. The message I got that was helpful for me was to take the (Ken, Chimbu Province) drug on time, you be faithful, don’t have sex with multiple sex partners, and don’t have sex even you can go without Mi save tokim ol olsem, ‘Mi dai man ya, mi go pinis long sex for 2-3 months. And this is the other good information six feet ya mi kam bek tru pawa blong God, em savim mi that I practice and have seen that’s helpful in my life. Okay, na lusim kainkain pasin hamamas, kainkain pasin nogut another they told me is not to smoke, not to chew betelnut, blong dispela graun na givim life blong yu long Bikman’. don’t drink beer, wash hands, concerning hygiene side, (Ken, Chimbu Province) eat three balance meals per day. These are the things that normally assist me and helps my life and am living It’s like I used to go to parties, drink beer and have multiple like that. (Norman, Western Highlands Province) sexual partner but I have changed this type of behaviour a bit. Because I am now living with the sickness I now What message mi bin kisim na em bin helpful long mi can cause some kind of damage to my body while I’m em kisim drug on taim, yu mas faithful, noken havim on treatment and doing it. Or drink plenty beer or go sex wantaim multiple sex partners, na noken havim sex partying where there is no good rest, no good food or even you can go without sex for at 2-3 months. Na em like wise I know that I will destroy myself and will not live narapela gutpela information mi save practisim na mi a long time. Now that I am on drug this ART medicine save lukim emi helpful long laif bilong mi. Ok narapela has changed my thoughts like if I want to live longer on em ol save tokim mi long noken simuk, noken kaikai buai, earth I have to quit somethings. Like things that are good noken dring bia, washim han, hygiene sait, eat 3 balance I must take hold of and do like take medication and eat diet per day. Ol dispela samting nau em ol save assitim good food etcetera. I mentioned something earlier on, mi gut tru na em save helpim laif bilong mi na mi save on drinking and roaming around, this was when we were stap olsem. (Norman, Western Highlands Province) normal. And drinking when we were normal but now we are on medicine we have changed those things. Like it And like beer, [they said] don’t take alcohol. Alcohol reminds us that now we are sick people so we must look it won’t help the body with medicine. So we take the after ourselves. (Sophia, National Capital District) medicine, beer is completely out of our head so we don’t take beer while taking the medicine. (Inok, Southern I used to tell them that, ‘I am a Highlands Province) dead man, I already went six feet Of those who continued to drink while taking ART a greater proportion of the sample reported a decrease under but I came back through in alcohol consumption compared to those who reported that their alcohol consumption had increased God’s power. or remained the same (Figure 37).

Em olsem mi save go pati, drink beer, havim multiple sexual partner na ol dispela kain pasin mi change liklik. Becos nau mi stap wantaim sik nau em mi ken kosim sampla kain bagarap long bodi taim mi stap long marasin na mi wokim. O drink planti bia o raun long pati we nogat gutpela rest nogat gutpela kaikai dispela kain mi save bai mi bagarapim mi yet na bai mi nonap stap longpela taim. Nau mi stap long drug dispela ART marasin em senis tingting bilong mi olsem Sapos mi laik live long pela taim long dispela graun mi mas lusim sampela samting. Olsem samting igutpela long em mi mas kisim na wokim olsem kisim marasin long taim na kaikai gutpela kaikai o kain olsem. Pastaim mi stori liklik long drink na raun nabaut dispela mipela stap nomal. Na long Figure 37: Impacts on alcohol intake of going on ART for those drink nabaut em mipela stap nomal tasol nau mipela stap, who drink

Papua New Guinea Institute of Medical Research and University of New South Wales 41 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Disclosure of HIV status

Disclosure of HIV status

There was a high level of disclosure before treatment Oh that was a long time and I have already told so where almost all people (91.6%) had disclosed many men and women. Even before I started taking the their HIV status to at least one person before they medication I had already told so many men and women commenced ART. The majority of the participants that I am this kind of woman. I come out in public and had disclosed to a member of their family, whether it singsing places where I hold the loud hailer and talk be a parent (57.7%) or sibling (63.9%) The proportion and give counseling to young men and women or those of those who reported not having disclosed their men and women that go around too much. I feel happy status to anyone before ART is similar to that found to tell them because I don’t want them to follow this road in people on ART in Botswana and India (Wolfe et al. that I am on. (Sasha, Southern Highlands Province) 2006; Ramchandani et al. 2007) (Figure 38). The reason she felt comfortable to disclose was not 100 a matter of being innocent as seen with Audrey from Morobe Province but because of her belief that we all 80 42.3 36.1 have to die some time and HIV is just one way:

60.6 74.8 I think that we are all going to die in the end. We will all 60 79.2 81.4 die, this sickness just came recently but death has been % 91.6 around for a long time. When God created Adam and

40 Eve, death was around and HIV has just come so HIV 63.9 won’t kill us. Death is in any direction and PLHIVA, we 57.7 can still be alive and people without HIV can die before 20 39.4 us. It’s this thought that strengthens me to tell others that 25.2 18.6 20.8 I have HIV. (Sasha, Southern Highlands Province) 8.4 0 Haven’t Child/ren Friends Church Spouse Parent/s Sibling While a greater proportion of men (47.6%) than disclosed (N=371) (N=371) commu- (N=373) (N=371) (N=371) (N=344) nity women (34.1%) had disclosed their HIV status to (N=369) their spouses before ART, there was no significant Yes No relationship between disclosure and gender. Figure 38: Who people had disclosed too before taking ART

One woman who was infected by her husband When I told the children they explained that she did not feel ‘guilty’ disclosing to cried, the boys were really angry, her children that she had HIV because; they said they’ll go down to the I never went out looking for this; it came because of my partner…When I told the children they cried, the boys were cemetery now and break that really angry, they said they’ll go down to the cemetery now [their father’s] headstone... and break that [their father’s] headstone, really show their anger to this dead person. (Audrey, Morobe Province) There was a significant relationship between region However, not everyone felt ready to disclose their of residence and disclosure to parents before ART HIV status (or that of deceased family members) to (χ2 (2) = 20.179, p = 0.000) A greater proportion of their children: those residing in the Highlands Region had disclosed to their parent/s than those in the Momase or My children don’t know. We used to tell them that our father Southern Regions (Figure 39) and this may be due to [father and two mothers] got sick and they died of malaria more people living in their villages and being in closer and typhoid. (Sendy, Southern Highlands Province) proximity to their families than those who reside in other regions. Ol pikinini biong mi ol no save. Papa bilong mipela tu, mipela save tokim ol olsem [papa na tupela mama], em ol Of the 15 people who identified that they had disclosed isik na ol idai…ol kisim malaria, typoid na ol idai. (Sendy, to another person, four people reported that it was Southern Highlands Province) to their in-laws and another four reported that it was to other family members such as their aunt or uncle. Reflecting on her disclosure long before going onto The remaining reported disclosing to others such as treatment Sasha said that she has been completely members of the community, such as neighbours, open about having HIV: while another identified having disclosed to God.

42 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Disclosure of HIV status

100 It was not until he returned home that he understood

33.5 what had happened: 80 57.1 60.9 I was getting ready for bed and my wife told me ‘I would 60 like to talk to you’ and I said “What is it?”’ ‘I heard that you are HIV-positive’. I was really shock and I asked

% her, ‘Who told you that I was HIV-positive?’ and she 40 66.5 said ‘Your mum told me’. Then I asked her who told my mum and she said Peter my brother told my mum 42.9 20 39.1 that I was HIV-positive. I got very very frustrated. I got very very angry and I said ‘Why didn’t he tell me in the

0 first place that I was HIV-positive if he knew my HIV Highlands (N=233) Momase (N=23) Southern (N=105) status?’ (Inok, mid 40s, Southern Highlands Province)

Yes No

Figure 39: Disclosure to parents before treatment by region I disclosed my status so the family Among those who had not disclosed to anyone, is aware and they help me and we common reasons reported were being afraid of others live together.... talking about their status (78.6%), afraid of being verbally abused (71.4%) and not wanting to worry their families (67.9%) (Figure 40). Disclosure is an ongoing process rather than a one- off event. While 91.6% of the sample had disclosed to Afraid that people will tell someone that they had HIV before taking ART, only 78.6 others I have HIV (N=28) 21.4 65.6% of people had disclosed their HIV status to Afraid of being verbally someone since being on ART. Going onto ART saw 71.4 28.6 abused (N=28) a 26% reduction in disclosure. The reason for this is Afraid my family will worry unknown; however, rather than being an experience 67.9 32.1 too much (N=28) of increased stigma on ART, it may have been due to Afraid that the community will 57.1 42.9 an improvement in health which led people to feeling discriminate against my family(N=28) that they no longer had to tell people. With similarly Afraid that I will be left alone high rates of disclosure, one study in South Africa to die (N=28) 46.4 53.6 found that there was no correlation between being on Afraid of being called a 42.9 57.1 ART and disclosure (Skogmar et al. 2006). For 62.4% sinner (N=28) of all participants, being on ART made it easier to tell Afraid will be kicked out of my 42.9 57.1 house (N=28) others their HIV status while for more than a third, treatment did not facilitate disclosure (Figure 41). Afraid of being physically abused (N=28) 28.6 71.4

0 20 40 60 80 10 % 100 Yes No Figure 40: Reasons provided for not disclosing before going onto 34.4 ART by those who had not disclosed 80 37.6

Of the 15 people that gave other reasons for not 60 disclosing, nine said they did not disclose because of % stigma while another two said it was for reasons of self 40 care. The remaining reasons such as concern for impact 65.6 62.4 on others were reported only by one participant. 20 One of the participants who reported that he had not disclosed his HIV status to anyone before he went 0 Since being on ART have Since being on ART has it onto ART said it was because his family knew his HIV you disclosed to anyone been easier to disclose that status before he himself did. After he had requested you have HIV? (N=369) you have HIV?(N=348) an HIV antibody test while in hospital in another Yes No province, his brother kept telling him that the results were not available. Figure 41: Impact of ART on disclosure

Papua New Guinea Institute of Medical Research and University of New South Wales 43 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Disclosure of HIV status

For a person for whom ART had facilitated disclosure, But people who are not like that, who are not positive, treatment provided the opportunity to sit and think I don’t even disclose to them that I am taking this ART. about disclosure: Because sometimes they have this mentality that I am taking this medicine and I’m living long then they will At first, I did not disclose my status and I started ART. say that there’s medicine that I can take and live long Even when I was taking ART, the first time I was on and then they might go and have unsafe sex. So that’s ART, I did not disclosed my status until I came to a time what I had in mind so I don’t disclose to other negative when I was sitting and thinking and weighing out and I people that I’m taking ART but they know that I am a was thinking to myself and I said, ‘Perherps it’s better HIV - positive person but I am living positive. (Inok, to sit down and tell the family I am with…’. I’ve got this Southern Highlands Province) problem and it’s not good that I hide it so I should talk to them and suppose they get ride of me from the house There was a significant relationship between gender or whatever they want to do to me it’s alright but to be and whether being on ART made it easier to disclose on the safe side I think it’s good to disclose to them… one’s HIV status (χ2 (1) = 4.051, p = 0.044). More men I disclosed to them and they didn’t get rid of me or get (68.9%) than women (58.3%) reported that being on angry or didn’t do any other things, they said, ‘Oh it’s treatment made it easier to disclose their HIV status okay, you’re part of our family’. They all accepted me (Figure 42) and this is most likely related to issues of but they felt sorry for me. And we discussed about it stigma and blame. and now we live together. Now that I’ve disclosed to 100 the family from there on after I disclosed my status to

the family I’ve not found any stigma or discrimination 31.1 within the family because I disclosed my status so the 80 41.7 family is aware and they help me and we live together. I felt abit safe as I was on treatment so I told them. 60 (Nathaniel, National Capital District) % 40 68.9 58.3 Mi yet first taim mi no bin disklosim status bilong mi na mi bin kam long ART. Even mi stap long ART tu, nambawan 20 taim mi stap long ART tu mi no bin disklosim status inap i kam long taim we mi yet mi sindaun na mi tingting na mi 0 skelim na mi yet mi tingting na mi tok olsem, ‘Ating gutpela Male (N=132) Female (N=216) long mi yet bai sindaun na toktok wantaim ol femili mi bin Yes No stap wantaim ol…’ So mi gat dispela hevi na em nogut long mi haitim long ol so mi ken tokaut long ol na sapos ol laik Figure 42: Impact of ART on disclosure rausim mi long haus o ol laik mekim wanem long mi em orait but to be on the safe side, ating gutpela long mi ken tokaut long ol…Mi tokaut long ol nau olsem ol femili ino bin rausim Close to 90% of the participants reported being happy mi o krosim o mekim wanem bat ol tok, ‘ah em orait. Yu famili to very happy with the support they had received bilong mipela’. Na ol acceptim mi na mi stap but ol i sore following disclosure (Figure 43). long mi. ol famili ol i sore long mi. Na mipela stori go kam na em nau mipela stap. Em nau mi bin tokaut long famili nau em from there on afta mi disklosim status bilong mi long ol famili, em mi no bin painim wanpela stigma o discrimination insait long famili bikos mi bin disklosim status bilong mi so ol femili ol i aware na ol save helpim mi na mipela save stap wantaim. Nau mi pilim olsem mi stap safe liklik nau olsem mi toktok. (Nathaniel, National Capital District)

While some found it easier to disclose that they had HIV after going onto ART, there was a caveat to Inok’s disclosure where, although he was happy to disclose that he was HIV-positive, he would not disclose that he was on ART to people who were not HIV-positive: Figure 43: Satisfaction with support following disclosure

44 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Disclosure of HIV status

Amongst those who disclosed their HIV status, the Examples of support provided by people who had main types of support received were practical and been informed included, but were not limited to, the physical support (38.4%) and emotional support following: (33.3%). Spiritual support was the least common form My mother, my sister they usually help me with of support provided (Figure 44). firewood, gardening or some even find food. My [dead] husband’s relatives don’t help me that much. (Dorethy, Southern Highlands Province)

Mama bilong mi, sista bilong mi ol save helpim mi long sait bilong paiawod, gaden o sampela ol save panim kaikai. Ol lain bilong man, ol no save helpim mi tumas. (Dorethy, Southern Highlands Province)

Once they [my family] sent me K300.00 through the post office when my husband died. They said ‘You cook food for your husband and use it for his funeral’. (Sendy, Southern Highlands Province)

Wanpela taim ol [femili bilong mi] bin putim K300.00 long post office long taim masta bilong mi idai. Ol tok ‘Yu cookim kaikai bilong em na matmat bilong em’. (Sendy, Figure 44: Type of support following disclosure Southern Highlands Province)

Papua New Guinea Institute of Medical Research and University of New South Wales 45 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Health and well-being

Health and well-being

Besides reducing viral load, one of the primary goals The extent to which people felt that HIV had affected of ART is to improve the health and well-being of their physical health was related not only to what they people with HIV and this improvement in health- could no longer do, such as work in the garden, but related quality of life has been well documented also to how they looked: (Eriksson et al. 2000; Carrieri et al. 2003; Burgoyne and Renwick 2004; Hughes et al. 2004; Teixeira et When I came down nobody recognised me; I went so al. 2004; Tramarin et al. 2004). For people living with dark like a saucepan. (Monica, 32, Morobe Province)13 HIV in Papua New Guinea, going onto ART meant an improvement in key areas of health and well-being, Mi kam daun em ol man ino luksave long mi; mi go including physical and mental health, quality of life, dark nogut stret, olsem sauspen. (Monica, 32, Morobe satisfaction with health and importantly a reduction in Province) the number of days in bed per month. Sometimes when strong winds blow from the mountains I used to feel that it would blow me away because I Physical health didn’t have any strength. (Jason, Southern Highlands Province) Nearly 90% of all respondents reported that before going onto treatment their physical health had been Sampla taim strongpla wind i kam olsem long mountain bad to extremely bad (Figure 45). mi pilim olsem em bai kam blowim na karim bikos mi ino gat strong stret. (Jason, Southern Highlands Province)

Identifying the physical impacts of HIV on the body, two informants drew the following images:

Figure 45: Rating of physical health before ART

In comparison, on treatment only 10.4% of the participants reported that their physical health was Image 11: Impact of HIV on the body bad or extremely bad (Figure 46).

Image 12: Impact of HIV on the body

The effects of treatment saw people not just regain strength so they could ‘climb mountains and make gardens’ (Eric, 35+, Southern Highlands), but also, Figure 46: Rating of physical health on ART as Chris shared, look ‘normal’:

The greatest improvements on ART were seen This best friend of mine said… ‘The medication has amongst those who reported their physical health as changed you, you’re a healthy man and you look just either ‘excellent’ (28.4% increase in this category) or like us, a normal man’. (Chris, 33, National Capital ‘good’ (28.3% increase). District)

13 This reference to as dark as a saucepan refers to the saucepan darkened on an open fire.

46 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Health and well-being

Dispela best pren bilong mi tok, …‘Marasin senisim yu. Yu …thinking made me deteriorate quickly. I ran away to kamap gutpela man. Yu kamap olsem wankain man olsem Moresby, I wanted to commit suicide. I thought that was mipela ol nomol man’. (Chris, 33, National Capital District) the end of me. (Jason, Southern Highlands Province)

And visually this impact looked like the following: …em tingting tasol mekim nau mi bagarap hariap. Mi ronawe go Mosbi, mi bin laik comitim suicide.. That’s the end of me, mi kisim displa kain tingting. (Jason, Southern Highlands Province)

I thought I should get a rope and hang myself and I will die. That was the main thought that came to me that time. I was depressed, I will hang myself and die or I will go to the road and get hit by car and die. This was

Image 13: The body after ART the first thought I thought about then I thought forget it, I must try to go to the hospital and get medication. Despite the clearly positive impact of treatment, this does (Betty, Chimbu Province) not negate the side-effects that people also spoke of: Mi kisim rop na hangamapim mi yet na bai mi dai, mi tingim. They had itchiness because I saw it on some of my Em bikepela tingting blong mi kamap long dispela taim. Mi friends that had started ART. Itchiness and nausea, felt tarangu mi bai hangamapim mi yet na dai nogat mi go long like vomiting and we had to encourage that it will go rot na kar bai bumpim mi na mi dai. Mi tingim dispela ya away slowly. Eventually your body will get used to it em namba wan stret ya tasol maski ya mi traim igo long and it will become normal. (Audrey, Morobe Province) haus sik na kisim marasin. (Betty, Chimbu Province)

No significant relationship was identified between Before I took medicine my mind was not really clear, physical health either before or after ART and gender, it was locked. It went on until I drank medicine. Now region of residence, time diagnosed with HIV, time on that I’m taking medicine at this time I feel good and my ART or occupation. thoughts are slowly coming back and now I am living. (Rebecca, Chimbu Province) Mental health ...thinking made me deteriorate Prior to treatment the majority of respondents (80.3%) quickly. I ran away to Moresby, I reported that their mental health was bad to very bad. Only 9.2% felt that their mental health was good to wanted to commit suicide.... extremely good before commencing ART (Figure 47). Bifo mi kisim marasin taim tingting bilong mi ino clear tumas em save lock. Igo mi dring marasin igo. Nau dispela taim mi drink marasin nau mi pilim orait liklik na tingting bilong mi kam bek liklik nau mi stap. (Rebecca, Chimbu Province)

…if I’m thinking of washing the dishes and holding soap in my hand, I will forget..., I will also forget where I left the sponge, I will not remember. Because I would not find the soap and sponge, I will not wash the dishes. Then I would end up doing other things and then I will find it. I had short term memory. Sometimes I will go to the store and forget what food I went to buy, and I won’t Figure 47: Mental health rating before ART buy, I end up buying other things and come back and remember at home. Sometimes it happens like this. Or even my wallet, I hold onto it but will leave it when I get There seemed to be at least two categories of up and leave where I was siting. This kind of memory causes for poor mental health prior to treatment. One loss happened to me but through the medication and was a response to being diagnosed with HIV (i.e. the help from God the biggest thing now is that my depression and suicidal thoughts) and the second memory and strength has returned. …When I was not was a consequence of viral activity (i.e. cognitive taking medication I had this short term memory but now impairment or dementia): I am alright. (Sendy, Southern Highlands Province)

Papua New Guinea Institute of Medical Research and University of New South Wales 47 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Health and well-being

…sapos mi tingting long wasim dishes na mi holim sop long han bilong mi ya, bai mi lus tingting …sponge yah, mi putim long wanem ha mi nonap tingim. Because mi no nap panim sop na sponge, mi no nap wasim. Na behain mi bai mekim narapela wok igo na mi bai panim. Mi gat sort pela tingting. Sampela taim, mi tingting long kisim wanem kaikai na go long stoa long en, ya, mi no nap kisim, mi mas kisim narapela samting gen, na kam bek na tingim long haus. Sampela taim em sa olsem. Or even wallet bilong mi, mi holim long en, mi sindaun long en, bai mi lusim na kirap. Dispela kian tingting bin stap tasol tru long marasin and helpim bilong papa God em bikpela samting nau em, olgeta tingting bilong me na strong bilong me, em kam bek gen. …Mi no bin kisim marasin taim mi bin gat dispela sort pela tingting tasol nau mi Figure 48: Rating on mental health on ART orait. (Sendy, Southern Highlands Province)

Treatment had a positive impact on the mental health of the participants.There was a significant relationship between mental health prior to treatment and mental Sampela taim olsem nite mires na driman nogut bai yu kisim. health after ART (χ2 (4) = 15.858, p = 0.003). Nearly Sampela taim bai yu kisim olsem lose of concentration. 70% of those who reported that their mental health Olsem wanpela man itoktok na yu ting yu paim attention but was bad to extremely bad before treatment rated their man husait itoktok long yu bai ting but mind bilong yu bai aut, mental health on ART as good to extremely good. bai yu lus long concentration. (Apa, National Capital District) (Table 2)

Table 2: Mental health rating before and on ART There was a significant relationship between ratings of physical health and mental health since being on ART (χ2 (4) = 79.580, p=0.000). Of those who reported that since commencing ART their physical health had been good to extremely good, 81.3% reported the same of their mental health. A third of those who reported that their physical health had been bad to extremely bad on treatment reported the same of their mental health on ART (Table 3).

Table 3: Relationship between ratings of physical and mental health on ART

Over 90% reported that their mental health had been good to extremely good since being on ART (Figure 48). Mental health on ART saw a reduction of 72% of participants reporting their mental health as bad to very bad. However, there were still people like Apa who felt that their mental health was poor as a result of both the virus and ART:

Sometimes you’ll get nightmares and bad dreams. Sometimes you’ll loose concentration. Like if a man is talking, and you think you’re paying attention and the man who is talking to you will think you’re paying There was no significant relationship between rating attention but your mind is wandering and you’ll loose of mental health before or after ART and gender, time concentration. (Apa, National Capital District) on ART, time since diagnosed with HIV or occupation.

48 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Health and well-being

Quality of life

The majority of participants (72.2%) reported that in the Table 4: Comparison of quality of life in the previous month year before taking ART their quality of life had been very compared to quality of life in the year before taking ART bad, bad or neutral. Only 5.4% reported that their quality of life prior to ART had been very good (Figure 49).

This improvement in quality of life has seen people return to working in their gardens, being more self- reliant and, as Sophia shows, enjoying life:

Figure 49: Quality of life before ART I was sick and about to die; ART brought me back and now I am living. It has changed me to be like the person I was before. Now I’m starting to look after myself in The majority (65.8%) of participants reported that terms of food, in terms of staying with man and in terms with ART their quality of life had improved while fewer of all these things I am fixing myself. Thinking clearly than 10% reported that compared to the year before first not like before, not caring and roaming around treatment, their quality of life had deteriorated in the aimlessly. Before I was weak which I mentioned; now I previous month on ART (Figure 50). can roam everywhere. You talk about dancing put the music and I will dance. You talk about break dance, I will dance and the beer will go warm while I’m dancing on the dance floor. (Sophia, National Capital District) Mi sik na mak bilong dai olsem; ART bringim mi kam bek nau mi stap long em. Em olsem em wokim mi senis olsem the person dat mi stap bipo. Nau mi stat lukautim mi yet long kaikai sait, long sait bilong stap wantaim man ol dispela kain samting mi wok long stretim mi yet. Tingting gut pastaim ino olsem bipo ya wokim nabaut nabaut na raun nating nating nabaut. Bifo maski mi weak weak na mi stori long em; nau mi ken raun long olgeta ap. Yu tok long dance maski putim music bai mi givim. Yu tok long break dance beer nabaut bai mi dance igo igo beer nabaut bai hot mi bai dans long dancing floor. (Sophia, National Capital District)

Figure 50: Quality of life in the previous month on ART compared to the year before ART Satisfaction with health

A third of participants who reported their quality of Before treatment the majority of participants reported life in the year before treatment had been very good that they had been unhappy or very unhappy (67.6%) said that in the month before the survey their quality with their health. By comparison, only 11% of the of life had deteriorated. Approximately 90% of all participants reported that they had been unhappy to participants who reported that in the year before ART very unhappy with their health in the previous month their quality of life had been bad to very bad reported on treatment. On treatment the majority of the sample that in the previous month on treatment their quality rated their satisfaction with health as happy to very of life had improved (Table 4). happy (74.9%) (Figure 51).

Papua New Guinea Institute of Medical Research and University of New South Wales 49 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Health and well-being

80 Table 6: Relationship between satisfaction with health in the previous month on treatment and rating of physical health on 70 ART

60

50

% 40 74.9

30 67.6 20

10 18.2 11.0 14.2 14.2 0 Unhappy or very Neutral Happy or very happpy Number of days in bed unhappy

Satisfaction with health in the year before going into ART (N=374) In the year before going on ART, more than a third Satisfaction with health in the last month on ART (N=374) (39.6%) of the respondents reported that they never Figure 51: Satisfaction with health before and on ART spent time in bed. However, a similar proportion (37.5%) reported that they had spent almost every day of the There was no significant relationship between gender month in bed before they had started ART (Figure 52). and satisfaction with health before or on treatment. 100 Not surprisingly, there was a significant relationship

between satisfaction with health in the previous month 80 on treatment and satisfaction with health in the year before treatment (χ2 (4) = 15.858, p=0.003). Of the people who reported that they had been happy or very 60 happy with their health in the previous month on ART, % 80.7 71.8% reported that they had been unhappy or very 40 unhappy with it in the year before going onto treatment. 39.6 This shows a very clear impact of treatment (Table 5). 20 37.5 7.5 9.2 6.2 5.2 4.9 5.4 3.8 Table 5: Satisfaction with health on treatment compared to 0 satisfaction with health in the year before taking ART No. of days in 1-2 days 3-5 days 6-5 days Almost Bed every day

Number of days in bed per month before ART (N=371) Number of days in bed per month after ART (N=367)

Figure 52: Number of days in bed per month before and after ART

Putting into narrative what ‘number of days in bed per month’ actually feels like, two women shared the following: There was a significant relationship between satisfaction with health in the previous month on treatment and I was dying and I only wanted to sleep in bed. I kept on rating of physical health on ART (χ2 (4) = 24.330, doing that and I slept and slept. (Marianne, 24, Western p=0.000). The majority (80.4%) of those who reported Highlands Province) that their physical health on ART was good to extremely good rated their satisfaction with their health in the Before my body was dead; I slept on my bed and didn’t previous month on treatment as happy or very happy. get up and move. (Rebecca, Chimbu Province) Surprisingly 43.6% of the sample who reported that their physical health on ART was bad to very bad reported Pastaim mi stap bodi bilong mi em dai pinis; mi silip long their satisfaction with their health in the previous month bed stap mi no kirap na move nabaut. (Rebecca, Chimbu on treatment as happy or very happy (Table 6). Province)

50 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Health and well-being

Showing this experience of being bed ridden, one In the previous month on treatment, 80.7% of person drew the following (Image 14) to describe life the participants reported that they had ‘never before treatment: spent a day in bed each month. This in turn meant that they could participate in family and community life. The previous month on treatment compared to the month before treatment saw a 33.7% reduction in the proportion of people spending everyday in bed. There was also a 41.1% increase in the proportion of those who reported that they had ‘never spent a day in bed’ in the previous month on treatment compared to the month before treatment. Again, this shows the positive impact of ART on the health and well-being of people Image 14: Living with HIV before treatment with HIV (Figure 52).

Papua New Guinea Institute of Medical Research and University of New South Wales 51 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Stigma and discrimination

Stigma and discrimination My wife’s family usually treats us the best. They don’t swear at us, everything they do they treat us the Experiences of stigma create addition challenges same, they don’t divide us and say we’re sick people and for people with HIV (Busza 2001; Lau et al. 2003; go and sleep somewhere else, these things they don’t Kalichman and Simbayi, 2004; Paxton et al. 2005). do. We will use the same things like plate, cup, betelnut, Research has shown that HIV-related stigma can smoke, sleep in one bedroom, wash and use the same affect quality of life negatively and can result in verbal towel, this is all normal. (Eric, 35+, Southern Highlands and physical abuse (Klein et al., 2002; Ogden and Province) Nyblade 2005). In this study, verbal abuse as a result of HIV was more common than physical abuse and Ol lain bilong meri bilong mi em ol save tritim mipela women were more likely than men to experience both da best. Ol no save tok nogutim mipela, olgeta samting forms of HIV-related discrimination. em ol tritim mipela da same, ol no nap dividim mipela na tok yupela sik lain yah go silip long hap nogat, ol dispela Close to half (47.3%) of the sample reported having kain em nogat. Mipela bai usim sem samting, plate, cup, experienced some form of verbal abuse as a result buai, smoke, na silip long wanpela bedroom, waswas na of their HIV status. A higher proportion of females usim same towel, em dispela kain em nomol. (Eric, 35+, (53.4%) reported being verbally abused than males Southern Highlands Province) (37.9%) (Figure 53). Reflecting on how the village had first responded with 100 gossip and discrimination Eric’s wife Salome shared the following: 80 46.6 I first told my mother about it and the both of us went 62.1 and then she told my father, my sister and my other 60 immediate family members later. People saw that % my baby was breast feeding but when I stopped 40 breast feeding the baby, the people in the village 53.4 became suspicious, like how can the woman leave the child. The baby wanted breast milk and was 20 37.9 really crying. And I carried him around and the villagers were asking a lot of questions as to why I 0 Male (N=145) Female (N=221) was not attending to the child and the rumors started going around that I am infected with the virus so I can’t breast feed the baby. They were saying that Yes No my husband infected me with the virus and now Figure 53: Gender difference in experiences of verbal abuse due I am one of those infected people … A little girl was to HIV in my house when I cooked sweet potato and gave it to my eldest daughter. That little girl was hungry Experiences of verbal abuse were higher amongst so I gave her a piece and she ate it. She went to those who had disclosed their HIV status. Of those her house and told her mother that I gave her who experienced verbal abuse as a result of HIV, sweet potato. Then the mother asked her if I had 77.6% had disclosed to someone. While the act of had a bite from it before giving her or where disclosure is important in facilitating the provision of exactly I had taken the sweet potato from and care and support, it can also make a person more given it to her. The little girl told her mother that I had vulnerable to verbal abuse. This is not the first study cooked the sweet potato over the fire and it was on to show that disclosure and HIV-related discrimination the fire ashes when I gave it to her. And then the mother are enmeshed (cf. Busza 2001; Paxton 2002; Klitzman came shouting at me and asked why I had given the food et al. 2004; Ogden and Nyblade 2005; Siegel and to her daughter. She practically broke her daughter’s Schrimshaw 2005). mouth putting in her fingers removing whatever remained of the food and washed her mouth with Not everyone had experienced verbal abuse and the bucket of water that was behind the house. indeed some had experienced accepting and caring She was like, ‘I am going to take her to the hospital family and community environments. Eric, whose wife and they will test her blood’. . She said ‘Why did was also HIV-positive, was open about his and his you give food to my child?’ When she said that we wife’s status to his in-laws and the village. Although had an argument and I grabbed a pipe and difficult to start with, after the support of a health care wanted to crack her head but my sister came and worker, the response was of acceptance: stopped me. (Salome, Southern Highlands Province)

52 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Stigma and discrimination

60 They don’t swear at us, everything they do they treat us the same, 50 they don’t divide us and say we’re 40

% 30 sick people and go and sleep 59.6

somewhere else..... 20 27.7 10 12.7 Olsem mi tok ya, pastaim tru mi tokim mama bilong mi 0 na mama bilong mi taim mitupla wantaim go na mama Worse (n=21) The same (n=46) Improved (n=99) bilong mi gen tokim papa bilong mi, sista bilong mi na ol Figure 54: Experience of verbal abuse due ti HIV status for those family bilong mi tasol bihain. Nau ol lukim olsem bebi drin who reported verbal abuse since taking ART susu na displa kain taim mi lusim em nau em olsem ol man meri long village ol suspect olsem how na meri lusim pikinini na displa kain. Pikinini laik drink susu na After going onto treatment and marrying an HIV-negative krai. Na karim em raun taim, ol man meri stat man Rondalis found herself the victim of gossip: long askim askim narapla go go na displa kain na toktok spred out na ol harim olsem em kisim Because of you people are gossiping about me. I’m displa kain sik, man bilong em givim em displa kain an HIV- positive woman and has married a good man sik na go ol bin tok olsem.…Wanpla liklik gal ya em [HIV-negative] and because of this I wanted to quit kam na mipla stap wantaim long haus bilong mi na mi taking treatment and wanted to die. I wanted to suicide kukim kaukau na mi givim long displa liklik gal bilong but didn’t want to. I said that and he replied, ‘No. You’re mi ya, first born ya na em tu na mipla kaikai nau na alive, a human being. Don’t do that’ (Rondalis, Western liklik gal ya kam stap na em hangre na so mi givim Highlands Province) kaukau long em nau em kaikai go nau em go tokim mama bilong em. Em tok meri ya givim mi displa kaukau Yu mekim ya ol man toktok baksait long mi. Mi HIV meri na ya. Nau mama ya askim em na tok em putim long maus maritim gutpla man na displa kain so mi laik lusim marasin na givim yu o em putim long wanem hap na givim yu? na mi laik dai ya. Mi laik suasaid na mi les ya. Mi tok olsem Na em tok nogat em kukim na em stap long ashes long na em tok, ‘Nogat. Yu laip ya, human being ya. Noken en na em givim mi. Nau meri ya kirap na tok why na yu mekim olsem.’ (Rondalis, Western Highlands Province) givim kaukau long pikinini bilong mi? Em singaut singaut ikam. Em brukim maus bilong pikinini bilong em, fingerim The majority (85.4%) of people in the study had not em nabaut na karim em go arare long haus na wasim experienced physical abuse as a result of their HIV em wantaim bucket wara. Ayo, nau tasol mi karim em go status. However, 14.6% did report some form of long haus sik na em bai testim blut bilong em, em tok. physical abuse that was linked to being HIV-positive. ‘Why na em givim kaikai long pikinini bilong mi’ em tok Nau em mekim displa kain toktok na mitupla kros fight For one young girl who was infected after having gen na mi karim pipe go na mi laik brukim het bilong meri a sexual liaison with a school teacher the physical ya na mekim nau sista bilong mi kam na holim mi gen. abuse and discrimination came from her family: (Salome, Southern Highlands Province) They said, ‘Don’t sleep in our house’; they hit me and say ‘Go and stay there’. They said, ‘You go and stay Of those who reported experiencing some form of over there’. So I stayed at home. I sleep in a traditional verbal abuse as a result of their HIV status, 40.4% grass house while they sleep in the permanent house. reported that since going on ART this experience of I sleep on the ground...My brother and sister they verbal abuse as a result of HIV had either stayed the rejected me, only mama helps me. (Joan, 16, Southern same or had intensified (Figure 54). Highlands Province)

Papua New Guinea Institute of Medical Research and University of New South Wales 53 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Stigma and discrimination

Ol tok olsem, ‘Yu ino ken slip long haus bilong mipela’; paitim mi, No significant relationship was identified between ‘I go stap long hap’. ‘Igo raun raun long hap’ ol tok olsem. Olsem rating of physical health before or after ART and nau mi stap long haus. Mi save slip long haus kunai nambaut, long experiences of either physical or verbal abuse as a haus kappa ol save slip, mi slip long graun nambaut dispela kain result of ART. Brata, sister em ol save rausim mi, mama tasol save helpim mi. (Joan, 16, Southern Highlands Province) Other forms of discrimination which were not physical or verbal abuse also existed. This included the There was a significant relationship between physical experience of Apa when he went to visit a sister: abuse and gender (χ2 (1) = 3.971, p = 0.046). Close to double the proportion of females (17.7%) than males When I went to my cousin sister’s house and when (9.7%) had experienced being physically abused as a she saw me she didn’t talk to me and stayed at a result of their HIV status (Figure 55). distance from me. While I was there I was really hungry and I sat down and looked. When I went 100 there, they were still cooking by the time I arrived but while I was sitting down they finished cooking. While

80 I was looking she got a plate which they use to give food to the dog. She got the dog’s plate and washed 82.3 90.3 it. After it was washed I sat down and saw her serve 60 food and I thought it was the plate of food for the dog % that she would give, but she got up and gave me 40 the plate. At that moment I cried terribly and I didn’t eat this food (Apa, National Capital District)

20 Taim mi go long haus bilong kasin sista bilong mi, taim 17.7 9.7 em lukim mi emi no toktok long mi em stap long wei l 0 Male (N=145) Female (N=226) ong mi. Na taim mi stap mi hangere nogut tru na go but mi just go sindaun long wei na lukluk. Dispela taim Yes No mi go ya by the taim mi kamap ol kuk na mi go kamap Figure 55: Gender differences in experiences of physical abuse but mi go sindaun na kuk pinis. Mi lukim yet na em due to HIV bin kisim wanpela plate we dispela plate ol save givim kaikai long dog long em. Ol kisim na wasim dispela Of those people who reported having experienced plate bilong dog. Em wasim pinis mi sindaun na mi physical abuse, 65.4% said that it had improved lukluk yet na em skelim kaikai nau mi ting em plate since being on treatment while 34.6% said that their bilong dog na em bai givim em ken kirap na givim experience of abuse while on ART had either stayed mi dispela plate. Dispela taim mi karai nogut tru nau mi the same or gotten worse (Figure 56). no kaikai dispela kaikai. (Apa, National Capital District)

Others feared discrimination and so accommodated their practices to avoid the possibility of it:

I came here and used a different name…because I didn’t want my family and especially my husband, cause I myself was shocked to find out that I had HIV, so I came in and used a different name so when I got really sick they would never know. (Rita, 27, National Capital District)

When I see them coming, I get frightened and take another route. I hide myself with an umbrella because of the way they react towards me; why should I talk to them? It’s not good if I go to talk with them and they don’t want to and run away from me. (Salome, Southern Figure 56: Experience of physical abuse due to HIV since being on ART Highlands Province)

54 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Stigma and discrimination

Mi lukim ol kam taim mi save fret long ol na saitim gen long the majority of people with HIV experienced displa sait rot na go o displa kain. Mi save haitim mi yet some form of discrimination as a result of HIV long umberalla o displa kain becos ol save wokim olsem and that the majority of such practices were na why na bai mi toktok long ol na displa kain? Nogut mi experienced in the health care setting. Furthermore, go na toktok wantaim ol na ol bai les na runaway o kain unlike the positive relationship between ART olsem. (Salome, Southern Highlands Province) and a reduction in stigma expressed by some, an Indian study revealed that because of These rates and experiences of stigma and stigma only 3% of PLHIV on ART had managed discrimination have been found elsewhere in the to tell their family that they were HIV-positive (Panda region. A multi country study in Asia that solely et al. 2005). Research has also linked side-effects addressed these issues highlighted that that of treatments with stigma (Persson 2005).

Papua New Guinea Institute of Medical Research and University of New South Wales 55 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Sexual Pratices

Sexual practices

Improvements in health and well-being on ART and There was a significant relationship between beliefs of reduced infectivity have been expected to marital status and whether a person in the study increase sexual activity in the developing world (cf. reported having had had sex in the previous six months Kaida et al., 2006). Although as Gina, a woman in (χ2 (4) = 94.96396, p = 0.000). Those participants this study, said, ‘everybody has the right to have who identified as being married or engaged (63.8%) sex’ (Gina, 33, National Capital District), there was were proportionally most likely to have had sex a low rate of sexual activity amongst the sample in in the previous six months compared with people this study. Contrary to what may be expected with of any other marital status. Those who had never improved health on ART, these findings are not all been married (4.2%) or were widowed (10.2%) that dissimilar to those found in other developing were least likely to have had sex in the previous countries (cf. Kaida et al. 2008). A meta-analysis of six months. Sexual activity for women in Brazil, studies on sexual behaviour and ART in developing South Africa and Uganda was strongly associated countries shows that more than half of people on ART with marital status (Kaida et al. 2008) (Figure 58). are practicing abstinence (Kennedy et al. 2007).14 100 In the sample, 39.4% reported that they had had sex since being diagnosed with HIV while 60.6% had not. Since commencing ART even fewer had had sex: 80 36.2 36% reported having had sex since being on ART 56.2 while 37.9% had had sex in the previous six months. 60 79.4 95.8 89.8 There is a significant difference between the % proportions of men and women who reported having 40 had sex in the previous six months with men more 63.8 likely than women to have had sex in that time (χ2 (1) 43.8 20 = 4.03013, p = 0.045) This level of women reporting 20.6 sexual intercourse in the previous six months (33.8%) 10.2 4.2 is slightly less than the average found in women 0 Never been Married or Seperated Divorced Widowed across a three-country study of Brazil, South Africa married engaged (N=16) (N=63) (N=88) and Uganda, where 46% had had sex in the previous (N=24) (N=163)

month, but the same as that for women in Uganda Yes No (33%) alone (Kaida et al. 2008) (Figure 57). Figure 58: Relationship between marital status and sex in the last 100 6 months

80 There is no significant relationship between time since being diagnosed with HIV and whether or not a person 55.6 66.2 60 had had vaginal sex with a regular partner in the previous six months, but again we see a pattern which % indicates that over time more people began to have 40 vaginal sex with their regular partner (Figure 59).

20 44.4 33.8 What we should be preaching and 0 Male (N=135) Female (N=219) telling people is, don’t do it…I Yes No still think that condoms aren’t the Figure 57: Relationship between gender and having had sex in answer. the previous six months

14 Caution needs to be taken with the meta-analysis study by Kennedy et al. (2007), which they themselves acknowledge, because it is based on only three studies – the only published studies on sexual behaviour and ART in the developing world at the time that met the inclusion criteria. The paucity of research highlights not only the importance of this data to the growing area of research but also the need for more research that examines sexual behaviour and ART.

56 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Sexual practices

100 Surprisingly, there was no relationship between having sex in the previous six months and health and

80 57.4 well-being either before or after commencing ART.

62.1 59.0 63.9 65.2 There was a strongly held belief amongst a number 60 of the participants in the qualitative arm of the study % that they must abstain from sex for a number of

40 different reasons including, but not limited to, notions of social and individual responsibility to avoid 42.6 transmitting the virus and having been counselled 41.0 36.1 37.9 20 34.8 that to continue having certain sexual relations was a sin:

0 < 6 months 7-12 months 1-2 years 2-4 years >4 years What we should be preaching and telling people is, (N=89) (N=61) (N=66) (N=78) (N=54) don’t do it…I still think that condoms aren’t the answer. Yes No The answer is no sex and that’s it. (Isaach, National

Figure 59: Relationship between time since being diagnosed with Capital District) HIV and whether a person had had sex in the previous six months I encourage other people not to dream about sex. You should abstain completely…It’s people living with the virus who decide whether this virus goes on or not. So There was no significant relationship between the if everyone is really honest and take responsibility and length of time on ART and having had vaginal sex abstain from sexual behaviours the virus will die with in the previous six months with a regular partner. them. (Audrey, Morobe Province) However, a pattern did emerge in relation to time on treatment and having vaginal sex. It appears that the I haven’t slept with another man. I was counselled that longer a person is on treatment, the more likely they if and when you sleep with a man you will commit a are to have vaginal sex with their regular partner. This sin and because of this I’ll stand before judgment in may be a result of improved health and well-being or heaven. This disease is just like murder or killing of it may be a result of increasing confidence in living someone so you don’t sleep with another man. If you with HIV and less fear in being infectious as people want to have sex, have sex only with your husband feel their viral load decrease (Figure 60). and always use condom. So since I got tested till now I have not slept with another man. I only stay with my husband or otherwise I am by myself. (Salome, 100 Southern Highlands Province)

80 This disease is just like murder or 55.3 62.1 61.8 65.0 64.9 killing of someone so you don’t 60 sleep with another man. %

40 Ol narapla man mi ino bin silip. Em ol counsellim mi olsem taim yu silip wantaim wanpla man em olsem yu 35.1 35.0 38.2 44.7 wokim sin na displa kain so long heven bai yu kisim kot. 20 37.9 Displa sik em wankain olsem murder o kilim man idai so yu noken silip wantaim narapla man. Yu laik slip, slip 0 wantaim man bilong yu yet na usim kondom. So since mi < 6 months 7 to12 1year to1year 1year >2 years (N=132) months 6 months 7months to (N=37) go blood test, mi ino stap wantaim narapla man. Mi save (N=76) (N=85) 2years (N=20) stap wantaim man bilong mi o mi stap long mi yet tasol. Yes No (Salome, Southern Highlands Province) Figure 60: Relationship between time on ART and having had vaginal sex with a regular partner in the previous six months

Papua New Guinea Institute of Medical Research and University of New South Wales 57 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Sexual practices

During that time I’ve not had sex with a woman, since However, for a few it was a matter of lacking the the doctor told me I had the bad virus, I haven’t had desire for sexual intimacy since commencing sex with a woman because I thought that I would kill treatment: this woman. And this will multiply so this country will be destroyed, so I’ve said no to sex with women because Before I felt like having sex with anyone at anytime that isn’t good. (Mek, Western Highlands Province) but now that I am on ART it had decreased my sexual drive. (Jack, 35+,Chimbu Province) Displa taim, mi no bin silip wantaim wanpla meri, taim dokta bin tokim mi olsem mi gat binatang nogut, mi no Bifo long displa, mi feelim laik long wokim raun tasol taim silip wantaim wanpla meri becos mi ting olsem mi bai kisim taim nau na mi start long ART, em daunim displa kilim displa meri. Na displa em bai multiplim so bagarapim ol sexual pasin long laif bilong mi. (Jack, 35+,Chimbu displa country, so mi tok maski long silip wantaim meri Province) becos dispela ino gutpela (Mek, Western Highlands Province)

I think I made up my mind and in my prayers I always Sex with a regular heterosexual partner tell the good Lord to uphold me and help me not to have the desire to have sex. So from 2004 till now I’m Of those who had had sex in the previous six saying no to sex. (Joanne, Chimbu Province) months, 90.6% of participants reported having had a regular partner of the opposite sex. Of Yet for others, abstinence was a more personal issue: those with a regular partner 94.4% identified that they had had vaginal sex in the previous six months. Why? I don’t want it. This came about because of this so I don’t want it. (Monica, 32, Morobe Province) Only a few participants in the qualitative study spoke of an improved desire for sexual intercourse Why? Mi ino laikim. Em kamap long displa kain samting since commencing ART. One such woman was so mi ino laik. (Monica, 32, Morobe Province) Sophia:

There was also a fear that sex would lead to re-infection: When I take drug it makes me want to have sex all the time. When I was normal [didn’t take ART] I didn’t Before when I was not sick, I use to think that I want like having sex. I saw sex as something, when to sleep with men. Okay, now that I’m on medication I my husband and I sleep on the bed I tell him not just don’t want to sleep with men. I said, ‘What if I give to touch me. I put the pillow and say, ‘That is your them my disease and they give me their disease [HIV] border on this side and my border is this side. too like I will get double sickness or something’ (Betty, (Sophia, National Capital District) Chimbu Province) Taim mi drug em save mekim laik sex olgeta taim. Taim Bifo mi no sik long em mi save ting olsem mi laik silip mi stap nomal mi save les long sex. Mi save lukim sex wantaim ol man. Okay, nau mi kisim dispela marasin taim, olsem wanpela samting. Taim mitupela man bilong mi mi les tru long silip wantaim ol man. Mi tok ya, ‘Nogut mi silip long bed taim, mi save tok noken touchim mi. Mi gat sik em bai givim ol na ol gat bai ol givim mi [HIV bilong save putim pillow na tok boda bilong yu dispela sait na em] ya, olsem mi bai kisim daouble sik o samting em mi boda bilong mi dispela sait. (Sophia, National Capital save less’. (Betty, Chimbu Province) District)

58 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Sexual practices

Fewer than half (46.2%) of the participants who In fact, from this study, the longer the participants had had vaginal sex with their regular partner in the knew that they had HIV the higher the proportion of previous six months reported that they had always those reporting always using condoms (Figure 62). used condoms. Lower proportions indicated that 100 they had never (22.7%) or sometimes (23.5%) used condoms. There was high condom use (62.2%) the last time participants had vaginal sex with their 80 36.0 40.9 42.9 regular partner. This was slightly less that that found 57.1 59.1 by Bateganya et al. (2005), where condom use by 60 8.0 a person with HIV on ART was 71% at last sexual 4.5 3.6 intercourse with spouse. % 21.4 40 32.0 27.3 14.3 9.1 There were no significant relationship between gender and frequency of condom use or condom use 13.6 20 19.0 at the occasion of vaginal sex with a regular partner. 32.1 24.0 27.3 Interesting to note, however, was that a greater 18.2 9.5 proportion of women than men reported never using 0 <6 months 7 to 12 1 to 2 years 2- 4 years >4 years a condom while a greater proportion of men than (N=25) months (N=22) (N=28) (N=22) women reported always using a condom (Figure 61). (N=21) Never use condoms Sometimes use condoms

Often use condoms Always use condoms

100 Figure 62: Frequency of condom use for vaginal sex with a regular partner by time since diagnosed with HIV

80 38.7 Knowledge of whether or not the use of condoms during sex could prevent the transmission of HIV from 60 one partner to another did not influence participants’ % levels of condom use. Rather than time or knowledge being a factor for significance of frequency of condom 40 25.8 use during vaginal sex it may be that use of condoms 27.4 was an artifact of the counselling that was received. 20 54.4 21.1 8.1 17.5 There was no significant relationship between the 7.0 length of time participants had been diagnosed with 0 Never used Sometimes Often use Always use HIV and condom use with a regular partner at the last condoms use condoms condoms condoms vaginal sex act (see Figure 63). However, after those

Male (N=57) Female (N=62) who had been diagnosed between 7 and 12 months, those who reported using condoms the most were Figure 61: Frequency of condom use for vaginal sex with a those who had been diagnosed for over 4 years. In regular partner by gender terms of using a condom the last time they had vaginal sex with a regular partner, there was a 30 percent decrease in condom use among those diagnosed with There is no significant relationship between HIV for between one and two years compared with frequency of condom use and time since being those diagnosed for between seven and 12 months. diagnosed with HIV. However, when we look at From two years onwards there was an incremental how long people had been diagnosed and the increase. This suggests that there may be something frequency of their condom use it is important to happening in the lives of those diagnosed note that the self reporting of ‘always using’ did not between one and two years which is influencing drop off the longer a person knew they had HIV. their sexual practices.

Papua New Guinea Institute of Medical Research and University of New South Wales 59 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Sexual practices

100 Displaying a sophisticated knowledge of reduced viral 19.0 load and the risk of HIV transmission, Sasha from 27.3 80 39.3 the Southern Highlands Province and her husband, 48.0 50.0 who is HIV-positive, speaks of having stopped using condoms since being on ART: 60 % The sister told me that the virus in the man might be passed on to me so I should use a condom, so she 40 81.0 72.7 said for us to use a condom but the man used to say 60.7 52.0 50.0 no. So when we are taking ART we sleep without using 20 condom… Before when both of us were on Bacterium we used safety and sleep together but now that we are on ART he himself tells me that ART makes it difficult 0 < 6 months 7 to12 1year to 2 to 4years >4 years for the virus to pass through. It locks the virus in one (N=25) months 2years (N=28) (N=22) (N=21) (N=22) area so the virus cannot really pass through. He tells Yes No me this and I think that he is telling the truth. (Sasha, Figure 63: Condom use during last act of vaginal sex with a Southern Highlands Province) regular partner by time since diagnosed with HIV The majority (91.2%) of participants with a regular Excluding the two participants who identified as partner had not had anal sex in the previous six months. belonging to the Evangelical Alliance Church and had However, 11 people (8.8%) had had anal sex with a both used condoms the last time they had vaginal regular partner. Condom use for anal sex was very sex with a regular partner, the church denomination low with only two people (18.2%) reporting that they that showed the highest proportion of condom use used a condom the last time they had anal sex with at the last act of vaginal sex with a regular partner their regular partner. That is, nine people (81.8%) had was the Lutheran Church (72.2%) followed by those unprotected anal intercourse. in comparison, a much who identified as Pentecostal (63.6%) and Catholic smaller proportion of people reported any unprotected (61.9%). Those with the lowest condom use on vaginal sex with a regular partner (37.8%). last vaginal sex act were those who identified as United (50%) followed closely by Revival (57.1%) One women who spoke of having anal sex with her and Seventh Day Adventist (57.1%) congregational husband said that her husband would put her in all members (Figure 64). manner of ‘positions’ and perform all kind of ‘acts to my skin’ which caused her pain which she treated 100 with pain killers and bed rest:

27.3 36.4 I feel very bad and I normally cry. I used to tell him, 80 42.9 38.1 42.9 50.0 ‘You are wrong’. Because he comes through the front [vagina] it’s not enough for him, he comes through 60 my back [anus]. And I usually tell him, ‘Through the % 100.0 front I feel alright…’ (Marianne, 24, Western Highlands Province) 40 72.7 61.9 63.6 57.1 50.0 57.1 Nearly all of the participants had disclosed their HIV 20 status to their regular partner (91.8%). This rate of disclosure is much higher than that found in other studies, which report disclosure rates to partners at 0 SDA Catholic Lu- United Evangali- Penticos- Revival between 62% and 79% (Olley et al. 2004; Nachega et (N=21) (N=21) theran (N=8) cal tal (N=21) (N=11) Alliance (N=33) al. 2005; Skogmar et al. 2006). The majority (85.7%) (N=2) of participants in regular heterosexual relations who Yes No had had sex in the previous six months knew the HIV Figure 64: Relationship between religious denomination and status of their sexual partner. Of those who reported condom use during last vaginal sex act with a regular partner knowing their partner’s HIV status,

15 It is often assumed in PNG that serodiscordant relationships are rare but this figure shows that this is not the case or that if there are such relationships it will be men who are infected and not women. In a recent article in The Weekend Australian on HIV in PNG a story of a serodiscordant couple was highlighted and it was the woman who was positive (Toohey 2009). 16 Seroconcordant relationships are those where both partners are HIV-positive, serodiscordant relationships are those where one partners is HIV-positive and the other is HIV-negative while serononconcordant relationships are where the HIV-positive person is unaware of the status of their partner.

60 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Sexual practices

74% said their partners were HIV-positive while While condoms are necessary for the prevention of 26% were HIV-negative.15 Taking into account those HIV transmission, it is not always the choice of the who did not know the HIV status of their regular person with HIV not to use them, as the experience partner, a greater proportion of participants in regular of heterosexual relationships reported these as being seroconcordant (64.7%) rather than serodiscordant Rita, whose husband is HIV-negative, highlights: (21%). A further 14.3% were in serononconcordant relationships (Figure 65).16 We don’t use condoms when we have sex. My husband doesn’t want to use them. I tell him but he insists on not using them. Maybe he has accepted what I have… (Rita, 27, National Capital District)

However, condoms were not absent in all serodiscordant relationships. As one man from the Southern Highlands Province shared of trying to guarantee the ongoing care of his children:

In my marriage, well I know that I’m HIV-positive and that if I have unsafe sex, then in love my wife and she loves me and we have children. Who will look Figure 65: Serostatus mixture of regular partners after them? That’s the problem, the big problem that I have in my mind. So I have to stay positive and she has to stay negative. (Inok, mid 40s, Southern Highlands Equal proportions of men and women were in Province) seroconcordant, serodiscordant and serononconcordant relationships, with slightly more women in serodiscordant There was a significant relationship between relationships (Table 7). whether the regular partner of a participant in this study had HIV and the region of the participants Table 7: Serostatus of regular relationships for men and women residence (excluding the Momase Region) (χ2 (1) = 4.046148, p = 0.044). Of those who knew their partner’s HIV status, those from the Highlands Region were significantly more likely to have a regular sexual partner who was HIV-positive (78.8%) than those who were living in the Southern Region (55.6%) (Figure 66).

There were no gender differences recorded in the proportion of women and men who had disclosed 100 their HIV status to their regular partner or who knew the HIV status of their regular partner. Although 27.2 not significantly different, people in serodiscordant 80 44.4 relationships are more likely to report always using a condom than those in concordant on nonconcordant relationships (60% vs 43.1% and 41.2%). Of concern 60 is that those who do not know the status of their %

regular partner are more likely than those in any other 40 78.8 relationship to report never using a condom (41.2%) (Table 8). 55.6 20 Table 8: Serostatus of regular relationship by frequency of condom use 0 Highlands Southern (N=66) (N=27)

Yes No

Figure 66: Regional difference in whether regular partner has HIV (Not including the Momase)

Papua New Guinea Institute of Medical Research and University of New South Wales 61 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Sexual practices

Of those who knew their partner’s HIV status, there Em tokim mi, ‘Mi lovim yu na mitupela stap. So long was a general pattern of decline in the proportion of bilip bilong mi yet sik bilong yu bai nonap kisim mi’ em those in a seroconcordant relationship the longer a tok… Olsem mi hamamas man bilong mi negative na mi person had been diagnosed with HIV. The longer positive. Mi bai lukautim em na bai mi tried best bilong mi that people had been diagnosed with HIV the greater long em bai stap negative na em bai lukautim mi…Em the proportion who identified that their regular gutpela man. Em save lukautim mi gut stret. Em save sexual partner was HIV-negative. This was not a remindim mi long kisim marasin bilong mi. em save haitim significant relationship but an interesting pattern for status bilong mi long famili membas bilong em… consideration, especially in relation to support for Taim em kam stap wantaim mi em save make sure positive sex (Figure 67). moning mi kaikai bifo mi drink marasin bilong mi. (Sophia, National Capital District)

100 Casual heterosexual sex 15.0 22.2 25.0 25.0 The numbers who reported having casual sex are 80 42.9 low so some caution needs to be taken not to over interpret these figures. Only 22 people reported 60 having had vaginal sex with a casual partner in the

% previous six months. Of these people, 63.6% (n=14) reported that they had used a condom the last time 40 75.0 75.0 57.1 they had vaginal sex with their casual partner. Slightly 85.0 77.8 more than half of the participants who had had casual

20 vaginal sex in the previous six months reported that they used condoms all of the time with their casual partner/s, while close to a third reported that they 0 <6 months 7 to 12 1 to 2years 2 to 4years >4years never used condoms with their casual partner/s. Of (N=20) months (N=18) (N=24) (N=21) the 20 from the 22 who answered whether or not they (N=20) had disclosed their HIV status to their casual sexual HIV positive HIV negetive partner, 15 identified that they had not while five Figure 67: Serostatus of regular partner by time since diagnosed with HIV had. Three participants (two men and one woman) reported having had anal sex with a casual partner in the previous six months. Neither of the men had used a condom the last time that they had had anal More generally, reflecting on the importance of her sex with a woman. partner loving her, protecting her from unwanted disclosure and caring for her nutritional needs, Sophia highlights the significance of serodiscordant He told me, ‘I love you and we live relationships in Papua New Guinea which are together. So according to my own frequently denied recognition: faith, your sickness will not infect He told me, ‘I love you and we live together. So me’ he said.... according to my own faith, your sickness will not infect me’ he said…I am happy my husband is negative and I’m positive. I will look after him and try my best so that The majority (70.4%) of participants reporting casual he will remain negative and he will look after me…He sexual partners had not disclosed their HIV status to is a good man. He looks after me very well. He reminds their casual partner with a similar proportion (66.7%) me to take my medicine. He hides my status from his not knowing the HIV status of their casual sexual family members… When he come and stays with me partner. Some 33.3% knew the HIV status of their he makes sure I eat food in the morning before I take casual partner, the majority of whom (66.7%) were my medicine (Sophia, National Capital District) HIV-negative.

62 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Key fi ndings - Sexual practices

Sex work

The majority of men had not paid for sex with a This three times I had sex, once was woman in the previous six months with only ten with a woman and the other two men (7.7%) in the sample reporting that they had done so. Of these ten men, six had bought sex times I had sex was with gays... five or less times within the previous six months with three men buying sex once or twice a month. While none of the men in the quantitative study Only one man reported that he had purchased reported having had sex with both men and women sex six to ten times a month for the previous six in the previous six months, in the in-depth interviews months. Of the nine men who had paid for sex Nathaniel spoke candidly of having sexual intercourse in the previous six months and answered the with both ‘gays’ and women: question on condom use with female sex workers, six said that they had used a condom the last time In-regards to my sex life, after I found out my HIV that they had vaginal sex with a female sex worker status, I have had sex. I had cut down on my sex life with two saying they sometimes did and one but on the way I think I had sex three times only. It’s reporting that he never used them. Only one man like when I haven’t had sex for a long time I feel like I who reported buying sex from a woman reported must have it. It’s been a part of me already so I have that he had engaged in anal sex with the female to do it; at least I had sex three times. This three times sex worker. He also reported that he sometimes I had sex, once was with a woman and the other two. used a condom. But this other woman that I fucked, I was a bit scared because woman do go around and I don’t know so I was a little scared and I used a condom and fucked her Male-to-male sex (Nathaniel, National Capital District)

Very few men reported having had male-to-male Long sex laip bilong mi after mi save long HIV status bilong mi, sex. Only five (3.8%) of the total number of men mi yet em mi havim sex. Em mi kat daun long sex laip bilong mi reported having had male-to-male sex. All men who bat on the way em mi havim sex em ating tripela taim tasol. Em had had male-to-male sex had casual and no regular olsem taim olsem mi stap longpela taim na mi feel olsem oh em mi partners. In relation to sexual positioning, two of mas. Em stap pinis long blut so mas mekim so at least tripela taim the men were receptive while two were insertive. mi havim sex. Bat dispela tripela taim mi bin havim sex ya olsem One man was both insertive and receptive. Of these wanpela taim em mi kuap wantaim wanpela meri na tupela taim men, four used condoms all of the time with their em mi kuap wantaim ol gay. Mi save kisim ol long as. Em olsem mi casual partners while one man never used them. stat pinis long ART taim em mi kuapim ol. Dispela tupela gay, mi The one man who never used condoms was the no usim kondom. Mi kuapim ol nating. Bat dispela narapela meri only man not to use a condom the last time he had mi bin kuapim em ya, em olsem mi poret liklik ya olsem ol meri engaged in anal sex with another man and his ol save raun raun tu mi no save nogut olsem mi poret liklik na em preferred sexual position was penetrative. Of olsem na mi usim kondom na mi kuapim em. (Nathaniel, National these five men, two said that their casual Capital District) partner/s knew that they had HIV while three said that they had not disclosed. One of the five men Nathaniel’s sexual practices point clearly in the was aware that his casual partner had HIV while the direction of needing to address sexual practices remaining men were unaware of the HIV status of rather than sexual identity in the prevention of Papua their casual partners. New Guinea’s HIV epidemic.

Papua New Guinea Institute of Medical Research and University of New South Wales 63 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea Recommendations

Ongoing research into the lives of people with HIV Within safe sex messages, the discussion by generally and people on treatment specifically is many health care workers needs to be broadened needed. to address other practices including masturbation, oral sex and other creative safe sex practices. Knowledge acquisition for people who test HIV-positive Abstinence should not be the primary safe sex should be seen as an ongoing process rather than a message given to people living with HIV. one off event to address knowledge and beliefs about HIV transmission such as mosquitoes. It may also be Care and support needs to be developed to important to look at how HIV knowledge is imparted in address an emerging group of people living in the clinical encounter. People with advanced disease, serodiscordant couples. in particular those suspected of having central nervous system involvement as evidenced by memory loss, We need to work closely with the Revival Church motor and behavioural changes, should be provided in order to bring about better adherence to ART with the antiretroviral therapy preparedness education treatment regimes of its members. again once they start ART treatment and their mental heath improves. A sustainable and long-term food program must be developed, particularly the Southern Region, While the ART is itself free, accessing treatment is to address issues of hunger for people on expensive with the most common barrier to access is treatment. It is important that issues of food security financial cost. Financial costs of travelling to treatment are not trivialised and that they are addressed sites need to be taken into account. It may be that immediately since food shortage is the second governments and faith-based organisations need to most common reason for non-adherence to ART. address structural issues such as location of ART sites so that people do not need to travel vast distances. For Although almost all people were satisfied with example, it may be worth considering training health their support following disclosure, being on ART care workers at the district level to prescribe ART, was less likely to support women to disclose especially in the Highlands Region where access is their HIV status. Therefore, programs need most difficult. to be developed that address issues that are specific to women around disclosure These programs Continue to use culturally appropriate language to may also need to include reminding women describe the effects of ART on the immune system (and men) that they have a right to disclose when and HIV replication. The success of this strategy was ready. evident from the way people in the study were talking about ART being a fence, which is the image used in Counsellors need to be well trained in handling the ART preparedness chart employed by ART clinics issues surrounding disclosure and experiences in PNG to describe the impacts of ART. of HIV-related discrimination including how to support people using the HIV/AIDS Management Strengthen the Expert Patient Trainers (EPT)17 program and Prevention Act 2003 (the HAMP Act). staff to understand the complexity of, and ability to The Law and Justice Sector needs to be aware of address issues of sex, sexuality and sexual intimacy and trained in the HAMP Act so that PLHIV with health care workers. Incorporate sex, sexuality and who experience HIV-related stigma and sexual intimacy training into all HIV training courses, discrimination which are discordant to the law including but not limited to ART prescriber and testing are supported in pursuing their legal rights. trainings. Programs to support women with HIV need to Safe sex messages need to be reinforced not only for address the women’s vulnerability to experiences vaginal sex but also for anal sex, irrespective of whether of HIV-related verbal and physical abuse. In this is between two men or a man and a woman. Anal addition, programs that facilitate PLHIV to have sex needs to be more widely discussed as a mode of HIV a greater awareness of and access to using the transmission amongst the heterosexual community. HAMP Act need to be supported.

17 EPT is training provided by HIV-positive people to health care workers in the care of PLHIV as part of their ART prescribing training, which is part of the Integrated Management of Adult Illnesses (IMAI) training.

64 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea References

Au, J.T., Kayitenkore, K., Shutes, E., Karita, E., Peters, P.J., Tichacek, A., and Allen, S.A. (2006). Access to adequate nutrition is a major potential obstacle to antiretroviral adherence among HIV-infected individuals in Rwanda, AIDS, 20, pp. 2116–2118.

Bateganya, M., Colfax, G., Shafer, L.A., Kityo, C., Mugyenyi, P., Serwadda, D., et al. (2005). Antiretroviral therapy and sexual behavior: A comparative study between antiretroviral-naive and -experienced patients at an urban HIV/AIDS care and research center in Kampala, Uganda. AIDS Patient Care and STDs, 19, pp. 760–768.

Berkman A, Garcia J, Mun˜oz-Laboy M, Paiva V and Parker, R. (2005). A critical analysis of the Brazilian response to HIV/AIDS: Lessons learned for controlling and mitigating the epidemic in developing countries. American Journal of Public Health, 95:1162–1172.

Biehl, J. (2007). Will to live: AIDS therapies and the politics of survival, Princeton University Press: Princeton.

Brigido LF, Rodrigues R, Casseb J, Oliveria, D., Rossetti, M., Menezes, P. and Duarte, AJS.(2001). Impact of adherence to antiretroviral therapy in HIV-1-infected patients at a university public service in Brazil. AIDS Patient Care STDS 2001, 15, pp. 587–593.

Bruner, E. (1986). Experience and its expressions. In V. Turner and E. Bruner (eds) The anthropology of experience, Urbana: University of Illinois Press, pp. 3–32.

Burgoyne, R. and Renwick, R. (2004). Social support and quality of life over time among adults living with HIV in the HAART era, Social Science & Medicine, 58, pp. 1353–1366.

Busza, J.R. (2001). Promoting the positive: Responses to stigma and discrimination in Southeast Asia, AIDS Care, 13, 4, pp. 441–456.

Butt, L. and Eves R. (eds) (2008). Making sense of AIDS: Culture, sexuality, and power in Melanesia. Honolulu, HI: University of Hawaii Press.

Carrieri, P., Spire B., Duran, S., Katlama, C., Peyramond, D., Francois¸ C., Chêne, G., Lang, J.M., Moatti, J.P. and Leport C., APROCO Study Group: 2003, Health-related quality of life after 1 year of highly active antiretroviral therapy, Journal of Acquired Immune Deficiency Syndromes, 32, 1, pp. 38–47.

Castro, A. and Farmer, P. (2005). Understanding and addressing AIDS-related stigma: From anthropological theory to clinical practice in Haiti, American Journal of Public Health, 95, 1, pp.53-59.

Cauldbeck, M.B., O’Connor, C., Saunders, J.A., O’connor, M.B., Rao, B., Mallesh, G.V., Praveenkumar, K.N., Mamtha, D., McGolderick, C., Laing, R.B.S., and Satish, K.S. (2008). Adherence to anti-retroviral therapy among patients in Bangalore, India. Paper presented at 20th Annual ASHM Conference, Perth, Western Australia, Australia, September 17–20.

Chaisson, R., Keruly J. and Moore, R. (1995). Race, sex, drug use, and progression of human immunodeficiency virus disease, New England Journal of Medicine, 333, 12, pp.751–756.

Eriksson, L.E., Nordstro, G., Berglund, T. and Sandstro, E. (2000). The health-related quality of life in a Swedish sample of HIV-infected persons, Journal of Advanced Nursing, 32, 5, pp. 1213–1223.

Eves, R. (2003). AIDS and Apocalypticism: Interpretations of the Epidemic in Papua New Guinea. Culture, Health and Sexuality, 5, pp.249-64.

Papua New Guinea Institute of Medical Research and University of New South Wales 65 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea References

Eves, R. (2008). Moral Reform and Miraculous Cures: Christian Healing and AIDS in New Ireland, Papua New Guinea. In L. Butt and R. Eves eds. Making Sense of AIDS: Culture, Sexuality and Power in Melanesia. Honolulu: University of Hawai’i Press, pp.206-223.

Eves, R. (nd) ‘In God’s Hands’: Pentecostal Christianity, morality and illness in a Melanesian Society. Unpublished paper.

Farmer, P. (1991). Infections and inequality: The modern plagues, University of California Press: Berkely.

Friedman, S. and Mottiar, S. (2004). A moral to the tale: The Treatment Action Campaign and the politics of HIV/AIDS. A case study for the UKZN project entitled: Globalisation, marginalisation and new social movements in post-apartheid South Africa. Centre for Policy Studies. University of KwaZulu-Natal. Available at: http://www. nu.ac.za/ccs/files/Friedman%20Mottier%20TAC%20Research%20Report%20Short.pdf. Accessed: August 2007.

Government of PNG (2007). The 2007 Estimation Report on the HIV epidemic in Papua New Guinea, Government of Papua New Guinea: Port Moresby.

Hardon, A., Davey, S., Gerrits, T., Hodgkin, C., Irunde, H., Kgatlwane, J., Kinsman, J., Nakiyemba, A. and Laing, R. (2006). From access to adherence: The challenges of antiretroviral treatment. Studies from Botwana, Tanzania and Uganda. Geneva, Switzerland: World Health Organization.

Hardon, A.P., Akurut, D., Comoro, C., Ekezie, C., Irunde, H.F., Gerrits, T., Kglatwane, J., Kinsman, J., Kwasa, R., Maridadi, J., Moroka, T.M., Moyo, S., Nakiyemba, A., Nsimba, S., Ogenyi, R., Oyabba, T., Temu, F. and Laing, R. (2007). Hunger, waiting time and transport costs: Time to confront challenges to ART adherence in Africa, AIDS Care, 19, 5, pp. 658-665.

Herrman, S., McKinnon, E., John, M., Nolan, D., Martinez, O.P., Phillips, E., and Mallal, S. (2008). Side effects, dosing schedules, pill burden and perceived stress: Interaction and influence on medication adherence. Paper presented at 20th Annual ASHM Conference, Perth, Western Australia, Australia, September 17–20.

Hirsch, J.S., Parker, R.G. and Aggleton, P. (2007). Social aspects of antiretroviral therapy scale-up: Introduction and overview, AIDS, 21 (suppl 5), pp.S1–S4.

Hughes, J., Jelsma, J., Maclean, E., Darder, M. and Tinise, X. (2004). The health-related quality of life of people living with HIV/AIDS, Disability and Rehabilitation, 26, 6, pp. 371–376.

Kaida, A., Andia, I., Maier, M., Strathdee, S.A., Bangsberg, D.R., Spiegel, J., Bastos, F.I., Gray, G., and Hogg, R. (2006). The potential impact of antiretroviral therapy on fertility in sub-Saharan Africa. Current HIV/AIDS Reports, 3, 4, pp. 187–194.

Kaida, A., Gray, G., Bastos, F.I., Andia, I., Maier, M., Mcintyre, J., Grinsztejn, B., Strathdee, S.A., Bangsberg, D.R., and Hogg, R. (2008). The relationship between HAART use and sexual activity among HIV-positive women of reproductive age in Brazil, South Africa, and Uganda, AIDS Care, 20, 1, pp. 21-25.

Kalichman, S.C. and Simbayi, L.( 2004). Traditional beliefs about the cause of AIDS and AIDS related stigma in South Africa, AIDS Care, 16, 5, pp. 572–580.

Kelly, A. (2007) Hope is forked: Hope, loss, treatments and AIDS dementia, Qualitative Health Research, 17, 7, pp.866-872.

Kennedy, C., O’Reilly, K., Medley, A., and Sweat, M. (2007). The impact of HIV treatment on risk behaviour in developing countries: A systematic review, AIDS Care, 19, 6, pp.707–720.

66 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea References

Klein, S.J., Karchner, W.D. and O’Connell, D.A. (2002). Interventions to prevent HIV-related stigma and discrimination: Findings and recommendations for public health practice, Journal of Public Health Management Practice, 8, 6, pp. 44–53.

Klitzman, R.L., S.B. Kirshenbaum, B. Dodge, R.H. Remien, A.A. Ehrhardt, M.O. Johnson, L.E. Kittel, S. Daya, S.F. Morin, J. Kelly, M. Lightfoot and M.J. Rotheram-Borus; The NIHM Health Living Trial Group (2004). Intricacies and inter-relationships between HIV disclosure and HAART: A qualitative study, AIDS Care, 16, 5, pp. 628–640.

Koeing, S., Léandre, F. and Farmer, P. (2004). Scaling-up HIV treatment programmes in resource-limited settings: the rural Haiti experience, AIDS, 18 (suppl 3), pp.S21–S25.

Lamptey, P. and Wilson, D. (2005). Scaling up AIDS treatment: What is the potential impact and what are the risks? 2, 2, e39, PLoS Medicine, pp.102–104.

Lau, J.T.F., Tsui, H.Y., Li, C.K., Chung, R.W.Y., Chan, M.W. and Molassiotis, A. (2003). Needs assessment and social environment of people living with HIV/AIDS in Hong Kong, AIDS Care, 15, 5, pp. 699–706

Laurent C, Diakhate N, Fatou Ngom Gueye N, et al. (2002). The Senegalese government’s highly active antiretroviral therapy initiative: An 18 month follow-up study, AIDS, 16, pp.1363–1370.

Levy, C. (2008). Research and evaluation on the impact of the Awareness Community Theatre Program in Raikos and Jimi Districts. VSO TokoutAIDS: Madang.

Llabre, M.W., Weaver, K.E., Durán, R.E., Antoni, M.H., McPherson-Baker S. and Schneiderman N. (2006). A measurement model of medication adherence to highly active antiretroviral therapy and its relation to viral load in HIV-positive adults AIDS Patient Care and STDS, 20, 10, pp.701–711.

Maisels, L., Steinberg, J., and Tobias, C. (2001). An investigation of why eligible patients do not receive HAART, AIDS Patient Care and STDs, 15, pp.185–191.

McCarthy, M. (2008) personal communication.

Mukherjee, J., Farmer, P., Niyizonkiza, D., McCorkle, L., Vanderwarker, C., Teixeira, P. and Michaels D. (2005) Adherence data from MSF, Khayelitsha. Paper presented at the Second South African AIDS Conference. Durban, Kwazulu-Natal; June 7–10.

Mukherjee, J.S., Ivers, L., Leandre, F., Farmer, P., and Behforouz, H. (2006). Antiretroviral therapy in resource-poor settings: Decreasing barriers to access and promoting adherence, Journal of Acquired Immune Deficiency Syndrome, 43, pp. S123–S126.

Mills, E.J., Nachega, J.B., Buchan, I., Orbinski, J., Attaran, A., Singh, S., Rachlis, B., Wu, P., Cooper, C., Thabane, L., Wilson, K., Guyatt, G.H., and Bangsberg, R. (2006). Adherence to antiretroviral therapy in Sub-Saharan Africa and North America A Meta-analysis, JAMA, 296, No. 6, pp.679–690.

Murphy, D.A., Roberts, K.J., Martin, D.J., Marelich, W. and Hoffman, D. (2000). Barriers to anti-retroviral adherence among HIV-infected addicts, AIDS Patient Care and STDs, 14, pp. 27-40

Nachega, J.B., and Lehman, D.A. (2005). HIV/AIDS and antiretroviral treatment knowledge, attitudes, beliefs, and practices in HIV-infected adults in Soweto, South Africa, Journal of Acquired Immune Deficiency Syndrome, 38, 2, pp.196-201.

National Department of Health (2009). The 2008 STI, HIV and AIDS six monthly surveillance report January – June 2008, National Department of Health: STI, HIV and AIDS Surveillance Unit: Port Moresby.

Ogden, J. and Nyblade, L. (2005). Common at its core: HIV-related stigma across contexts, International Centre for Research on Women: Washington, DC.

Papua New Guinea Institute of Medical Research and University of New South Wales 67 The art of living: The social experience of treatments for people living with HIV in Papua New Guinea References

Olley, B.O. and Seedat, S. (2004). Self-disclosure of HIV serostatus in recently diagnosed patients with HIV in South Africa African Journal of Reproductive Health, 8, 2, pp.71–76.

Paella, F., Delaney, K., Moorman, A., et al (1998). Declining morbidity among patients with advanced human immundodeficiency virus infection. HIV Outpatient Study Investigators. New England Journal of Medicine, 338, pp.853–860.

Panda, S., Kaul, S., Dhaliwal, M., Rohini, R. and Nembiaklum, G. (2005). Supporting safe and effective ARV treatment in India: Building treatment friendly communities. Rapid assessment study, Manipur and Pradesh, International HIV/AIDS Alliance, www.aidsaliance.org/india Downloaded 22/3/07.

Panourgiá, N. (2002). Interview with Clifford Geertz, Anthropological Theory, 2, 4, pp. 421–431.

Paxton, S. (2002). The paradox of public HIV disclosure, AIDS Care 14(4), pp. 559–567.

Paxton, S., Gonzales, G., Uppakaew, K., Abraham, K.K., Okta, S., Green, C., Nair, K.S., Parwati-Merati, T., Thephthien, B., Marin, M. and Quesada, A. (2005). AIDS-related discrimination in Asia, AIDS Care, 17, 4, pp. 413–424.

Persson, A. (2005). Facing HIV: Body shape change and the (in)visibility of illness. Medical Anthropology, 24, 237–264.

PNG National Statistical Office (2003) Papua New Guinea 2000 census. Port Moresby: National Statistical Office.

Ramchandani, S.R., Mehta, S.H., Saple, D.G., Vaidya, S.B., Pandey, V.P., Vadrevu, R., Rajasekaran, S., Bhatia, V., Chowdhary, A., Bollinger, R.C., and Gupta, A. (2007). Knowledge, attitudes, and practices of antiretroviral therapy among HIV-infected adults attending private and public clinics in India, AIDS Patient Care and STDs, 21, 2, pp. 129–142.

Rhodes, T., Bernays, S. and Terzic, K.J. (2009) Medical promise and the recalibration of expectation: Hope and HIV treatment engagement in a transitional setting, Social Science and Medicine, 68, 6, pp. 1050-1059.

Siegel, K. and Schrimshaw, E.W. (2005). _Stress, appraisal, and coping: A comparison of HIV infected women in the pre-HAART and HAART eras, Journal of Psychosomatic Research, 58, pp. 225–233.

Skogmar, S., Shakely, D., Lans, M., Danell, J., Andersson, R., Tshandu, N., Ode´N, A., Roberts, S., and Francois Venter, W.D. (2006). Effect of antiretroviral treatment and counselling on disclosure of HIV-serostatus in Johannesburg, South Africa, AIDS Care, 18, 6, pp.725–730.

Smith R, Siplon P. (2006) Drugs into bodies: AIDS treatment activism. Westport, CT: Praeger..

Teixeira, P.R., Vitoria, M.A. and Barcarolo, J. (2004). Antiretroviral treatment in resource-poor settings: the Brazilian experience, AIDS 18(3), pp. S5–S7.

Trainor, A. and Ezer, H. (2000). Rebuilding life: The experience of living with AIDS after facing imminent death, Qualitative Health Research, 10, pp. 646–660.

Tramarin, A., Campostrini, S., Postma, M.J., Calleri, G., Tolley, K., Parise, N. and Lalla, F. (2004). A multicentre study of patient survival, disability, quality of life and cost of care among patients with AIDS in Northern Italy, Pharmacoeconomics, 22(1), pp. 43–53.

Wang, H., He, G., Li, X., Yang, A., Chen, X., Fennie, K.P. and Williams, A.B. (2008). Self-reported adherence to antiretroviral treatment among HIV-infected people in central China, AIDS Patient Care and STDs, 22, 1, pp.71–80.

68 Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea WHO [World Health Organization](2006). Towards universal access by 2010: How WHO is working with countries to scale-up HIV prevention, treatment, care and support. WHO: Geneva, Switzerland.

Wilde, C. (2007). ‘Turning Sex into a Game’: Gogodala men’s response to the AIDS epidemic and condom promotion in rural Papua New Guinea. Oceania, 77, pp.58-71.

Wolfe, W.R., Weiser, S.D., Bangsberg, D.R. Thior, I., Makhema, J.M., Dickinson, D., Monpati, K.F. and Marlink, R.G. (2006). Effects of HIV-related stigma among an early sample of patients receiving antiretroviral therapies in Botswana, AIDS Care, 18, 8, pp.931–933.

Papua New Guinea Institute of Medical Research and University of New South Wales The art of living: The social experience of treatments for people living with HIV in Papua New Guinea