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.

Physiotherapists perceived developing positive rapport facilitates participation in exercise among people with Prader-Willi Syndrome: a qualitative study.

Purpose: To explore the experiences of physiotherapists delivering community-based progressive resistance training for people with Prader-Willi syndrome (PWS).Method: Participants in this qualitative study were fifteen physiotherapists (13 female) who had supervised 14 young adults with PWS to complete a progressive resistance training program, twice per week for 10 weeks. Semi-structured interviews with the physiotherapists were audio-recorded and transcribed verbatim. Interview transcripts were checked for accuracy by the physiotherapists. Data were analysed using thematic analysis with an inductive approach and data were managed using NVivo software.Results: Development of positive rapport between physiotherapists and people with PWS emerged as the critical factor. Components of developing positive rapport with a person with PWS included clear communication, adaptability in approach, fostering independence in the person with PWS, and motivating the person by developing confidence. Creating a routine, empowering the people with PWS to take ownership of their progress and developing confidence made continued participation in exercise by the people with PWS more likely.Conclusions: Our findings highlight the importance of developing rapport with people with PWS to facilitate their participation in exercise. Physiotherapist attributes and skills such as adaptability and communication positively influence participation in community-based exercise for people with PWS. Implications for rehabilitationThe critical factor for maximising the participation of people with PWS in high-intensity exercise is the development of positive rapport by the physiotherapistDevelopment of positive rapport was facilitated by therapist adaptability and clear communication.People with PWS might be motivated to exercise by developing their confidence and fostering their independence.

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.