Living with HIV

ARCSHS conducts a social research program that addresses the many experiences and challenges of living with HIV. While much of the Living with HIV program is conducted within Australia and New Zealand, increasingly staff are working with international partners to strengthen research efforts with people living with HIV (PLWH) in other constituencies. Specifically, this program seeks to capture the experience of PLWH in relation to both their health and social environment, to identify the challenges, and to broaden knowledge and understanding of the issues affecting PLWH. Five key components underpin the research strategy for this program:

  • developing partnerships at the local level, including academic, community, professional and clinical
  • involving PLWH in research design, conduct and dissemination
  • developing and sharing skills as key outcomes of the research process
  • maintaining a reflexive and responsive research focus and
  • promoting a collective and shared responsibility to enhance the wellbeing of PLWH.

In addition to dedicated research projects, the Living with HIV program undertakes an advocacy and advisory role within ARCSHS to encourage consideration of issues specific to HIV-positive populations across all relevant research. This may include the incorporation of HIV status in project demographic data and the analysis of findings by HIV status, or it may involve more detailed consideration of the dynamics and contextual complexities of HIV positivity within research populations. The program also encourages and advises on ways in which research can meaningfully address the principles of GIPA (the greater involvement of people living with HIV) within research processes.

HIV Futures 7

Jeffrey Grierson, Marian Pitts, Rachel Koelmeyer

This national project is a self-complete cross-sectional survey of Australian people living with HIV (PLWH). The Seventh National HIV Futures Survey entered the field in late 2011 after extensive review and revision in collaboration with NAPWA, AFAO, ASHM and their member organisations. Data collection will continue through the early part of 2012 with the main report released mid year. Extensive community and HIV sector briefing on the findings and implications of the study will follow.

HIV Futures 6 achieved a sample of 1106 respondents. The sustained commitment to this project from the HIV positive population in Australia demonstrates the power of information to enhance the lives of HIV-positive people. The first HIV Futures Survey was undertaken in 1997, with a sample size of 925, the second in 1999 with a sample of 924, the third in 2001 with a sample size of 894, the fourth in 2003 with a sample of 1059 and the fifth in 2005 with a sample of 970 respondents. The survey aims to: establish and maintain baseline data on social, economic, cultural and clinically related aspects of the experience of living with HIV; and examine changes in, and newly emerging aspects of, the experience of living with HIV. Information collected through the HIV Futures Survey is used in the development and provision of education and support services for PLWH. This survey has provided valuable insights into the use of new therapies among PLWH as well as the social and personal impact of HIV on their lives. This study has added significantly to the discourse on living with HIV both nationally and internationally at both academic and community levels.

LifeTimes

Marian Pitts, Jeffrey Grierson and Anthony Lyons

LifeTimes is a national joint project between ARCSHS and NAPWA. It was developed in response to the rapid ageing of Australia’s HIV population and seeks to identify and understand the many challenges and experiences of ageing with HIV, particularly among gay men. In November 2010, a national online longitudinal survey was launched. The survey specifically targets HIV-positive and HIV-negative gay men aged 40 years and over with a detailed look at their health and wellbeing, sex and relationships, living arrangements, and the many things that bring happiness or challenges to their lives. Wave 1 was completed in April 2011 after more than 1,200 men from all states and territories participated. During 2011, findings from Wave 1 were presented at the EUROGIN Congress in Portugal, the International Papillomavirus Conference in Berlin, and the European Health Psychology Society Conference in Greece. Findings are also reported in three journal articles expected to be in print in 2012. Wave 2 of LifeTimes began in November 2011 and will continue until April 2012. Further 12-month waves will make it possible to keep track of the health and wellbeing of HIV-positive and HIV-negative Australian gay men as they continue to grow older. In addition, it is planned that NAPWA will conduct in-depth face-to-face interviews with older HIV-positive gay men to examine the experience of ageing with HIV in further detail. Findings from LifeTimes are expected to inform treatment and support strategies for older HIV-positive gay men and is therefore of interest to clinicians, policymakers, support organisations, and health service providers, particularly those in the aged-care sector.

Tracking Changes

Jeffrey Grierson, Marian Pitts and Rachel Koelmeyer

This study examines treatment commencement and switching among HIV-positive individuals and employed an online cross-sectional survey with 254 HIV-positive Australians. The survey instrument covered demographics, health status measures, treatment history and experience, information sources, standardised symptom checklist, stages of change items on treatment commencement and switching and quality of life measures. In addition, 18 semi-structured interviews were conducted with S100 certified general practitioners focusing on decision making around treatment commencement and change. A report of the project presents a discussion of beliefs and understandings about ARV including treatment modalities, efficacy, treatment commencement and change algorithms, decision making around commencement and treatment switching.

MultiPoz: An Investigation of the Experiences of People from Culturally and Linguistically Diverse Backgrounds Living with HIV

Jeffrey Grierson, Karalyn McDonald, Tadgh McMahon (Multicultural HIV/AIDS and Hepatitis C Service) and Virginia Furner (Albion Street Centre)

MulitPoz is a modified version of the HIV Futures survey for culturally and linguistically diverse (CALD) people living with HIV in NSW. Due to cultural and linguistic circumstances they have not had the opportunity to previously participate in the national HIV Futures surveys. The survey contains questions on demographics, health, treatments, community and services, sex and relationships, recreational drug use, accommodation and finances. The survey was completed by a total of 42 culturally and linguistically diverse people living with HIV/AIDS via the Multicultural HIV/AIDS and Hepatitis C Service and Albion St Centre in NSW.

9 May 2012