The significance and expectations of HIV cure research among people living with HIV in Australia.

Most people living with HIV (PLHIV) with reliable access to antiretroviral treatment (ART) have a life expectancy similar to uninfected populations. Despite this, HIV can negatively affect their social and psychological wellbeing. This study aimed to enhance understanding of the expectations PLHIV hold for HIV cure research and the implications this has for HIV cure research trials. We interviewed 20 Australian PLHIV about their expectations for HIV cure research outcomes and the impact a potential cure for HIV may have on their everyday lives. Data were analysed thematically, using both inductive and deductive approaches. The significance of a cure for HIV was expressed by participants as something that would offer relief from their sense of vigilance or uncertainty about their health into the future. A cure was also defined in social terms, as alleviation from worry about potential for onward HIV transmission, concerns for friends and family, and the negative impact of HIV-related stigma. Participants did not consider sustained medication-free viral suppression (or remission) as a cure for HIV because this did not offer certainty in remaining virus free in a way that would alleviate these fears and concerns. A cure was seen as complete elimination of HIV from the body. There is an ethical need to consider the expectations of PLHIV in design of, and recruitment for, HIV cure-related research. The language used to describe HIV cure research should differentiate the long-term aspiration of achieving complete elimination of HIV from the body and possible shorter-term therapeutic advances, such as achieving medication free viral suppression

Perceptions of HIV cure research among people living with HIV in Australia

Participation in HIV cure-related clinical trials that involve antiretroviral treatment (ART) interruption may pose substantial individual risks for people living with HIV (PLHIV) without any therapeutic benefit. As such, it is important that the views of PLHIV are considered in the design of HIV cure research trials. Examining the lived experience of PLHIV provides unique and valuable perspectives on the risks and benefits of HIV cure research. In this study, we interviewed 20 PLHIV in Australia about their knowledge and attitudes toward clinical HIV cure research and explored their views regarding participation in HIV cure clinical trials, including those that involve ART interruption. Data were analysed thematically, using both inductive and deductive coding techniques, to identity themes related to perceptions of HIV cure research and PLHIV’s assessment of the possible risks and benefits of trial participation. Study findings revealed interviewees were willing to consider participation in HIV cure research for social reasons, most notably the opportunity to help others. Concerns raised about ART interruption related to the social and emotional impact of viral rebound, including fear of onward HIV transmission and anxiety about losing control. These findings reveal the ways in which PLHIV perspectives deepen our understanding of HIV cure research, moving beyond a purely clinical assessment of risks and benefits in order to consider the social context

Community engagement, partnerships and research into policy and practice: a literature review

This literature review looks at community engagement and academic research with a particular emphasis on public health issues. Community engagement is a term that has come to be associated with a broad range of activities involving the interaction of universities and researchers with communities. In the health field, there has been a particular recognition of the role of community engagement in research (establishing research objectives, jointly undertaking research, and sharing the roles in the reporting and dissemination of research findings). More broadly, universities and researchers have been engaged in building local, national and international partnerships with communities, community-based organisations, NGOs, social services and practitioners, other researchers/institutions and government to conduct research or community-based projects. The purposes of community engagement and partnerships in research are generally to improve the quality of the research itself and, through this, to promote positive changes in people’s lives. The latter involves dissemination of results in a variety of formats to a range of stakeholders, and engagement/advocacy to effect changes in policy and practice. The process, outcomes and impact of these sorts of research and activities are understood and described in a range of ways. The following paper presents a literature review with the aims of: defining the range of terms and concepts that describe the engagement of researchers with society, communities, social services and government, focusing on both the process and impact of these sorts of research, and investigating ways of measuring and valuing research that involves community engagement, partnerships and influences changes in policy and practice. The review was based on a detailed literature search across several databases. This is not a systematic review but provides a broad overview of the international and local literature