Developing the narrative of HIV-related stigma and discrimination in Papua New Guinea

HIV Australia | Vol. 12 No. 2 | July 2014

By Dr John Rule and Annie McPherson

This article reports on the experience of Igat Hope, the organisation representing people living with HIV (PLHIV) in Papua New Guinea (PNG), in furthering the understanding of HIVrelated stigma and discrimination in PNG.

We describe this process as ‘developing a narrative’ because some of this work has already been completed, some work is currently being done (the research on which we report) and more work is required into the future.

Some of this narrative has been discussed many times before, and some is still being written. Other people are also contributing to the ongoing development this narrative, of course; here we report only on the work that we have been part of.

Phase one of the PNG Stigma Index project, supported by funding from the National AIDS Council (NAC) and the Joint United Nations Programme on HIV/AIDS (UNAIDS) in PNG, has been conducted in the Western Highlands and Simbu provinces.

The PNG NAC provided funding support to the Igat Hope secretariat and for other associated research costs; UNAIDS supported the project through funding the training programs of the group of people living with HIV who conducted the interviews.

This article provides some background to the project, and reports briefly on its findings. In the context of uncertain funding support in PNG, we also note some hopes for the future with regard to this project.

The PNG Stigma Index is significant because it is a project owned by Igat Hope and its membership.

In PNG the project has been largely managed by HIV-positive people within the organisation. The project is building community knowledge and engagement of people living with HIV as it proceeds, and is directing attention to the ways in which stigma is being experienced by HIV-positive people in a range of contexts.

Sadly, two Igat Hope staff members, who were openly HIV-positive and took carriage of work within the organisation, have died.

Ms Helen Samilo, who attended trainings on the implementation of the People Living With HIV Stigma Index died in August 2013; Don Liriope who was the Co-Principal Investigator on the project died in March this year. Their deaths are very sad losses.

Project aims

To provide additional data to that which is currently available in PNG and provide evidence-based information for program planning and interventions in response to HIV-related stigma in PNG.
To provide additional data about the ways that stigma and discrimination creates barriers to accessing services and impedes the scaling up of delivery of antiretroviral therapy in PNG.
To describe the levels of stigma and discrimination faced by people living with HIV in different provinces.
To describe the differing experiences of people living with HIV according to gender, sexuality, sexual expression or gender identity.
To determine the situations creating heightened risks for people living with HIV and to identify policy and program responses to reduce this risk.
To determine the ways in which the persistence of stigma and discrimination inhibits and undermines effective prevention strategies.

HIV-related stigma and discrimination in PNG

It is widely acknowledged that HIV-related stigma and discrimination remain barriers to effective prevention, treatment, care and support programs in PNG.

There is ample anecdotal evidence that the experience of stigma and discrimination discourages people from presenting for testing, or upon diagnosis not returning for followup; stigma and discrimination creates barriers to accessing health services.

The Systematic Literature Review of HIV and AIDS Research in PNG (2007–2008) noted that there is which people living with HIV have been violently mistreated and shamed, but there were few studies that focused on this experience from the point of view of people living with HIV.

The Systematic Literature Review identified studies that reported on stigma and discrimination – where the perspective was that of the health care workers or study respondents, looking at attitudes towards people living with HIV.

Few studies sought to examine mistreatment and shaming from the perspective of people living with HIV themselves.¹

One large-scale study on the experiences of people living with HIV showed that there is limited support for those experiencing stigma and discrimination to pursue their legal rights and that, although there have been some changes in community attitudes, there are still unacceptable percentages of people living with HIV – especially women – reporting verbal and physical abuse.

This study identified that there is research in other countries in the region in relation to stigma and challenges for people living with HIV, but the data that is available in PNG needs to be further developed.²

Various PNG UNGASS (United Nations General and Special Assembly) Country Progress Reports, successive National HIV Strategies and the Report of the Commission on AIDS in the Pacific 2009 have all noted that stigma and discrimination impact negatively on controlling the spread of HIV.³

The PNG Independent Review Group on HIV/AIDS heard stories of stigma against HIV-positive people, indicating that stigma continues to be a real barrier to HIV prevention.⁴

The report prepared by the review group said that the implementation of the International People Living With HIV Stigma Index⁵ needed to be finalised and implemented with speed so that findings could be incorporated into program responses.

Using the International Stigma Index tool

The potential use of the Stigma Index tool was discussed at the first national conference for people living with HIV in PNG in 2009.

Helen Samilo, a staff member of Igat Hope, attended a meeting in Bangkok about the international efforts to implement the Stigma Index.

The Igat Hope Board supported the creation of a special position within the National Secretariat specifically to implement the Stigma Index in PNG; Don Liriope was employed in this position.

In 2010, the second national conference for people living with HIV in PNG endorsed efforts to implement the index in PNG.

John Rule was invited by Igat Hope to be the Principal Investigator and to assist in developing the study proposal and ethics application for the National AIDS Council Research Advisory Committee.

The international People Living With HIV Stigma Index was seen as a useful instrument to try and apply in the PNG context, although it has always been the view of Igat Hope that the index would need to be adapted and amended for the PNG context.

This adaptation was not just to be a matter of translation into relevant language, but would also take into consideration the preparedness of the local communities of people living with HIV to work with the survey instrument.

The implementation of the Stigma Index in PNG is also a way of enabling people living with HIV to take a more active role in responding to the HIV epidemic by managing a significant national research project.

Outcomes from phase one data collection in the Western Highlands and Simbu

Eighty interviews were conducted. Seventy-five respondents indicated that they are sexually active although only twenty of the respondents said they are married or co-habiting with a partner.

Over 10% identified as belonging to the category of sex worker and a small percentage said that they belong to the group men who have sex with men, or identified as gay.

Over 70% said that they had been physically assaulted in the previous twelve months because of their HIV status.

Over 50% said they had not attended social gatherings because of their HIV status.

Being gossiped about was identified as the major problem and nearly 50% of the respondents said they had feelings of being ashamed, guilty or blamed themselves because of their HIV status.

From the interview data it can be said that stigma and discrimination are found in the following settings:

family and clan
community and peer networks
workplaces and health care settings.

Recommendations are tentative, being based on two provinces only, but areas identified where action can be taken include:

PLHIV networks and support group relationships with communities
PLHIV network building and peer interaction
capacity building in health care settings
further engagement with the legal and para-legal practitioners
improving stakeholder relationships with HIV-positive communities.

Igat Hope will continue to take the lead on this project, as outlined in the PNG National HIV Strategy. Problems using the Stigma Index tool were identified by the research team (e.g. the instrument only asked questions about events in the previous 12 months).

The application of the index as the correct tool to use, in the PNG context, may be reviewed.

Igat Hope aims to continue with the project and, through discussion with funders such as the National AIDS Council and UNAIDS in PNG, to determine the best approach to develop understanding of and response to HIV-related stigma and discrimination in PNG.

Dr John Rule is a Conjoint Associate Lecturer, School of Public Health and Community Medicine, Faculty of Medicine, UNSW and the Principal Investigator on the National AIDS Council approved study: HIV-related Stigma and Discrimination and Human Rights in PNG (ref: RES10- 014).

Ms Annie McPherson is the Executive Director of Igat Hope, the national organisation representing people living with HIV across PNG. Annie has been working with Igat Hope for over five years, and has provided management oversight for this project within her role as Executive Director.

References

1 King, E., Lupiwa, T. (2007). A Systematic Literature Review of HIV and AIDS Research in Papua New Guinea, 2007– 2008.National Aids Council of Papua New Guinea, Waigani.

2 Kelly, A., Frankland, A., Kupul, M., Kepa, K., Cangah, B., Nosi, S., et al. (2009). The art of living: the social experience of treatments for people living with HIV in Papua New Guinea. Papua New Guinea Institute of Medical Research, Goroka, the University of New South Wales, Sydney. Retrieved from: https://sphcm.med.unsw.edu.au

3 For example see: Port Moresby, National AIDS Council Secretariat and Partners. (2011). The UNGASS 2010 Country Report Papua New Guinea. Retrieved from: www.unaids.org

4 Aggleton, P., Bharat, S., Coutinho, A., Dobunaba, F., Drew, R., Saidel, T. (2011). Independent Review Group on HIV/AIDS. Report from an assessment visit, 28 April–13 May 2011. National AIDS Council Secretariat, Port Moresby. Retrieved from: www.aidsdatahub.org

5 The People Living with HIV Stigma Index is a joint initiative that has been developed, implemented by, and for people living with HIV. Those involved in the design and development of the survey tool included the Global Network of People Living with HIV/AIDS (GNP+); the International Community of Women Living with HIV/ AIDS(ICW); the International Planned Parenthood Federation (IPPF); and the Joint United National Programme on HIV/ AIDS (UNAIDS).