UNDERSTANDING PEOPLE LIVING WITH HIV

A Preliminary Report from The Positive Perspectives Survey – Diagnosis & Disclosure: The Attitudes and Perspectives of People Living with HIV A Preliminary Report from The Positive Perspectives Survey – Diagnosis & Disclosure: The Attitudes and Perspectives of People Living with HIV
Dr Bruno Spire

About the Author

Dr Bruno Spire is a member of the Positive Perspectives Steering Committee. Dr Spire is a Senior Scientist at the French National Institute for Medical Research (INSERM) who describes himself as an activist involved in HIV research. He co-led a large study in France, the VESPA study, to find out more about how living with HIV impacts people day to day. He joined the Positive Perspectives Steering Committee because he believes that a global view of the same topic would identify key areas where additional support could help improve the well-being of people living with HIV.

Having specialised in the research of HIV for many years, I’m privileged to have witnessed the incredible medical progress that has contributed to the greater life expectancy and quality of life for people living with HIV, which we have witnessed over the past 20 years.

This progress was reinforced by the first set of Positive Perspectives survey data findings, shared at the 9th IAS Conference on HIV Science (IAS 2017) in Paris. The poster presented at the conference, Experience of living with HIV: diagnosis & disclosure - findings from the Positive Perspectives study, focused on perspectives around diagnosis, disclosure and stigma.1


Experience of living with HIV: Diagnosis and disclosure

The results suggest that people living with HIV tend to feel better about living with HIV today, with only 27% (292/1,085) allowing their diagnosis to stop them from planning for the future.1 However, these findings reinforce our understanding that the main issues facing people living with HIV today are psychosocial, with many perceiving that society still has a bad perception of them and the disease.

This is especially clear from the survey results around stigma.1 The fact that 82% (892/1,085) of people living with HIV surveyed have experienced some form of stigma in the last year is terrible. It illustrates that despite fantastic medical advances, people remain very ignorant about the disease.

LiVLife: Meet Paida and Mavis / The story of Paida and Mavis

Notably, self-stigma continues to have a large impact on the lives of people living with HIV, with nearly a third of those surveyed reporting feelings of self-blame, guilt and a need for secrecy.1

However, people living with HIV who took part in the Positive Perspectives survey felt that there were a number of ways in which the feeling of stigmatisation could be decreased – 64% (694/1,085) felt better education for the general public will help reduce stigma and 26% (283/1,085) felt that better training of non-HIV specialists, including physicians, nurses and other healthcare professionals, would reduce stigma in the broader healthcare setting.1

"It is important for the HIV community to work together to help people living with HIV understand the options they have"

As a member of the Positive Perspectives survey Steering Committee it’s important to me that we continue to monitor the attitudes and perceptions of people living with HIV to understand the evolving challenges they face, with a view to addressing their quality of life needs more effectively. I am particularly interested in how we can better understand patients’ desires to minimise the impact their treatment has on their everyday lives. It is important for the HIV community to work together to help people living with HIV understand the options they have and show them that the latest research allows them to safely live long and satisfying lives.

While this is just the beginning for Positive Perspectives, I am looking forward to future releases of data and the next Positive Perspectives survey.

For further information on the Positive Perspectives survey click here and for data highlights view this infographic.

The Positive Perspectives survey:

The Positive Perspectives survey is an international survey of people living with HIV and their partners, carried out to better understand their emerging needs and challenges, and to learn how HIV continues to affect their lives. The survey was conducted by ViiV Healthcare, in collaboration with an international, multi-disciplinary Steering Committee of experts, which includes HIV physicians, people living with HIV and patient group representatives. The first set of data, focusing on the attitudes and perspectives of people living with HIV at diagnosis and disclosure, was presented on 24 July 2017 at the 9th International AIDS Society meeting in Paris. The data highlighted key global trends about the emotional support that people living with HIV did and did not receive at diagnosis and the impact of stigma on their lives.

References:

  1. Murungi A, et al. Experience of living with HIV: Diagnosis & Disclosure – findings from the Positive Perspectives study. Presented at the IAS Conference on HIV Science (IAS 2017), 23 26 July 2017, Paris, France. Available at: https://www.natap.org/2017/IAS/IAS_69.htm. Last accessed January 2021.