The voices of people living with HIV: Positive Perspectives 1 and 2
Understanding the experiences of people living with HIV is essential to create policy and services to meet their needs. In 2017, the Positive Perspectives 1 Survey was carried out in nine countries and included 1,111 people living with HIV. It highlighted the challenges people living with HIV face and the impacts of HIV and treatment on their daily lives.
Positive Perspectives 2 builds on the work of the first study. It includes the opinions of 2,389 people living with HIV from across 25 countries.
It explores how people living with HIV rate their own health, how living with HIV impacts their lives and affects their outlook for the future, as well as their interactions and relationships with healthcare providers and their experiences with antiretroviral treatment (ART).
Read the Positive Perspectives report foreword by Garry Brough
The way people living with HIV are cared for is evolving. Thanks to innovations in ART, HIV is now a long-term, treatable health condition and most people living with HIV are living longer, healthier lives.
While there is still more work to be done to ensure universal access to ART, significant progress has been made in reaching the UNAIDS 90–90–90 targets set for 2020:
As HIV care has evolved, the focus has moved away from surviving HIV to living and ageing well with HIV, with improved quality of life (QoL) being the desired goal. Long-term QoL is becoming a critical priority in the care of people living with HIV, a target that has become known as the ‘fourth 90.’
However, few international HIV studies capture the experiences of people living with HIV beyond viral suppression. The Positives Perspectives study, Wave 2 is one of the largest, global, HIV patient-reported outcomes studies to date. Staying true to the goal of meaningful involvement of people living with HIV in HIV care from the Denver Principles, the Positive Perspectives research provides perspectives and opinions from a diverse group of people living with HIV across the world.
Patient reported data from the Positive Perspectives study provide first-hand information about how care and treatment affect the health and wellbeing of people living with HIV beyond viral suppression and offer in-depth insights into the challenges that impact the quality of life of people living with HIV.
As most people living with HIV now live longer, a collaborative and holistic approach to HIV care that facilitates ongoing communication between people living with HIV and healthcare professionals can help improve health outcomes and quality of life.
Lead for Peer Learning, Partnerships & Policy, Positively UK; Co-Founder Bloomsbury Patients Network; Community Representative for NHIVNA, London HIV Clinical Forum and London Fast Track City Leadership Group
Positive Perspectives is an international, cross-sectional study. In total, 2,389 people living with HIV aged 18–84 from 25 countries participated:
USA (n=400), Canada (n=120)
Central and South America
Mexico (n=63), Brazil (n=58), Argentina (n=50), Chile (n=50)
UK (n=123), France (n=120), Germany (n=120), Italy (n=120), Spain (n=120), Portugal (n=60), Switzerland (n=55), The Netherlands (n=51), Republic of Ireland (n=50), Austria (n=50), Belgium (n=50), Poland (n=50)
South Africa (n=179)
Australia (n=120), Japan (n=75), Taiwan (n=55), China (n=50), South Korea (n=50)
Who took part in the study?
The study was conducted between April 2019 and January 2020. Some data included in this report are based on an interim analysis carried out in September 2019 including 2,112 participants; most of this report is based on the full sample size of 2,389 participants.
The study aimed to include a random cross-section of people living with HIV within each country sample and participants were recruited through:
Existing panels of people living with HIV
Referrals by respondents
Working with national charities
People living with HIV support groups and non-governmental organisations (NGOs)
HIV online communities
Promoting the research via social media networks
People living with HIV were eligible to join the study if they were: