Stigma research

NAPWHA works to ensure the meaningful involvement of people living with HIV in a range of HIV-related research activities throughout Australia, and also internationally when Australian researchers collaborate with international research.

Research

NAPWHA plays a key role through contributing to research advisory committees, reference groups and as representatives for people living with HIV on working groups of research studies, ensuring a voice for people with HIV in the study design and implementation.

NAPWHA’s input aims to include the interests of people with HIV when working with researchers who are designing and undertaking clinical research, behavioural research, social research and cure research. We also report and circulate important HIV research outcomes and findings to HIV positive people via social media, our newsletter, our website and through the network of NAPWHA member organisations.

Quality of life research

NAPWHA aims to ensure that there is a good understanding of what quality of life means for people living with HIV. In this section you will find various reports and research papers that give us information about quality of life for people living with HIV in Australia.

  • HIV FUTURES (from old website)
  • PozQoL Scale—measuring changes in quality of life among people living with HIV (from old website)
  • ViiV healthcare: Positive Perspectives 2 Survey (from old website)
  • Incorporating quality of life into PLHIV care: developing a consensus tool of health (from old website)
  • HIV seroconversion over time: 30 years exploring accounts of HIV infection and diagnosis (from old website)
  • Brown, G., Mikołajczak, G., Lyons, A., Power, J., Drummond, F., Cogle, A., & O’Connor, S. (2018). Development and validation of PozQoL: a scale to assess quality of life of PLHIV. BMC public health, 18(1), 527. (from old website)

Treatments Research

NAPWHA aims to keep people living with HIV on up-to-date information about HIV treatments.  Here are some examples of treatment related research that will be of interest.

Concomitant medication polypharmacy, interactions and imperfect adherence are common in Australian adults on suppressive antiretroviral therapy

This study quantified concomitant medication polypharmacy, pharmacokinetic and pharmacodynamic interactions, adverse effects and adherence in Australian adults on effective antiretroviral therapy. Siefried, K. J., Mao, L., Cysique, L. A., Rule, J., Giles, M. L., Smith, D. E., & Bloch, M. (2018). Concomitant medication polypharmacy, interactions and imperfect adherence are common in Australian adults on suppressive antiretroviral therapy. AIDS (London, England), 32(1), 35.

Understanding Treatment Preferences Among People Living with HIV in Australia: A Discrete Choice Experiment

The purpose of this article is to better understand what is most important to people living with human immunodeficiency virus (PLWH) when choosing their treatment. It assesses how PLWH trade off the potential risks and benefits of oral and long acting injectable (LAI) treatments.
Fifer S, Kularatne T, Tan M, Drummond F, Rule J. Understanding Treatment Preferences Among People Living with HIV in Australia: A Discrete Choice Experiment. Patient Prefer Adherence. 2023;17:1825-1843

Health

There are many aspects of health management for people living with HIV and NAPWHA aims to provide as much information as possible on the latest health research

  • Age-related Clonal Haematopoiesis in an HIV Evaluation Cohort (ARCHIVE) (from old website)
  • Trust in Digital Health study (pdf from old website)
Perceptions of COVID-19 Vaccines: Lessons from Selected Populations Who Experience Discrimination in the Australian Healthcare System

This paper investigates perspectives of COVID-19 vaccination among PWID, PLHIV, GBM, and Aboriginal Peoples and identifies how perspectives align and differ.
Daniel Storer, Lise Lafferty, Simon Graham, Dean Murphy, Jake Rance, Loren Brener, Holly Seale, Mohamed A. Hammoud, Garrett Prestage, Mitchell Beadman, Kristy Gardner, Megan Blaxland, Reuben Bolt, Theresa Caruana, Steven Philpot, John Rule, Joanne Bryant, “Perceptions of COVID-19 Vaccines: Lessons from Selected Populations Who Experience Discrimination in the Australian Healthcare System”, Health & Social Care in the Community, vol. 2023, Article ID 5901128, 10 pages, 2023. https://doi.org/10.1155/2023/5901128 (new article)

Models of Care

It is important that HIV positive people have the best possible care and there are different models of care that need to be understood, including the role that peer support plays in care practices.  Here are some articles that address this issue.

Belonging, social connection and non‐clinical care: Experiences of HIV peer support among recently diagnosed people with HIV

Wells, N., Philpot, S. P., Murphy, D., Ellard, J., Howard, C., Rule, J., Fairley, C., Prestage, G., & RISE Study Team (2022). Belonging, social connection and non-clinical care: Experiences of HIV peer support among recently diagnosed people living with HIV in Australia. Health & Social Care in the Community, 30, e4793–e4801. https://doi.org/10.1111/hsc.13886

Stigma

Stigma, criminalisation of HIV and understanding how people living with HIV experience discrimination is important, In the era of U=U people with HIV have a right to sexual lives that are free from discrimination.  Here are some examples of research that addresses these concerns.

  • Stigma Indicators Monitoring Project (from old website)
  • Trust in Digital Health pdf (from old website)
  • Anxiety about HIV criminalisation among people living with HIV in Australia (from old website)

This paper examines how ART use, viral detectability and attitudes towards the onward transmission of HIV have changed among PLHIV in Australia between 1997 and 2018.
Norman, T., Bourne, A., Lyons, A., & Rule, J., & Power, J. (2022). Antiretroviral therapy use, viral detectability and fear of onward transmission among people living with HIV in Australia: Changes between 1997 and 2018. AIDS and Behaviour. (new article)

HIV Surveillance

NAPWHA keeps up to date on recent date in relation to HIV surveilance in Australia and has contributed to the development of reports such as the National Surveillance Data produced by the Kirby Research Centre

HIV, viral hepatitis and sexually transmissible infections in Australia: Annual surveillance report 2022
Trends in Testing and Self-Reported Diagnoses of Sexually Transmitted Infections in Gay and Bisexual Men

Chan, Curtis BSc, BA∗; Holt, Martin PhD†; Broady, Timothy R. PhD†; Traeger, Michael W. PhD‡,§; Mao, Limin PhD†; Grulich, Andrew E. PhD∗; Prestage, Garrett PhD∗; MacGibbon, James PhD†; Rule, John PhD¶; Bavinton, Benjamin R. PhD∗. Trends in Testing and Self-Reported Diagnoses of Sexually Transmitted Infections in Gay and Bisexual Men in Australia, 2017 to 2021: Analysis of National Behavioral Surveillance Surveys. Sexually Transmitted Diseases 50(12):p 789-795, December 2023. | DOI: 10.1097/OLQ.0000000000001870 (new article)

NAPWHA is currently representing and involved in the following research: 

  • Australian Centre for HIV and Hepatitis Virology Research – Scientific Advisory Committee
  • Australian Research Centre for Sex Health and Society, La Trobe University – HIV Futures 10 study
  • Australian Collaboration for Coordinated Enhanced Sentinel Surveillance (ACCESS) – Kirby Institute
  • Centre for Social Research in Health, UNSW – Stigma Indicators Monitoring Project – Stigma Indicators Advisory Committee
  • Centre for Human Rights Education, Curtin University – Reducing health disparities for culturally and linguistically diverse peoples
  • Delaney AIDS Research Enterprise Community Advisory Board
  • The Kirby Institute, UNSW – SPANC (Study of the Prevention of Anal Cancer)
  • HIV Cure Community Partnership (HCCP)
  • HIV Cure Digital Think Tank
  • INSIGHT (International Network for Strategic Initiatives in HIV Trials) – Community Advisory Board
  • Monash University – Healthmap Study – Steering Committee
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