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).

Shaping future care

Watch these short videos from members of the Advisory Committee talking about the importance of Positive Perspectives:

Read the Positive Perspectives report foreword by Garry Brough

 

  • Panel 1

    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.

    Garry Brough
    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

Study methodology

Positive Perspectives is an international, cross-sectional study. In total, 2,389 people living with HIV aged 18–84 from 25 countries participated:

Study details map

North America

USA (n=400), Canada (n=120)

Central and South America

Mexico (n=63), Brazil (n=58), Argentina (n=50), Chile (n=50)

Europe

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)

Africa

South Africa (n=179)

Eurasia

Russia (n=150) 

Asia Pacific

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.

  • Panel 1

    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:

    Over the age of 18
    Diagnosed with HIV
    Currently receiving ART

Expert panel

The study was run by ViiV Healthcare in collaboration with an international, multi-disciplinary Advisory Committee. This expert panel included people living with HIV, representatives from HIV support groups and HIV physicians.

The Advisory Committee was instrumental to the development of the study themes, as well as being involved in the analysis and communication of the Positive Perspectives results.

Brent Allan
Brent Allan

Brent Allan

Senior Advisor

Policy and Programs for ICASO based in Toronto Canada

 

Co-founder

Positive Leadership Development Institute Australia/New Zealand

Australia/New Zealand
Pholokgolo Ramothwala
Pholokgolo Ramothwala

Pholokgolo Ramothwala

Director and founder

Positive Convention

 

Journalist and Author

South Africa
Giulio Maria Corbelli
Giulio Maria Corbelli

Giulio Maria Corbelli

Community Engagement Project Manager

HVTN

 

Member

EATG, ECAB & Policy Working Group

 

Member Board of Directors

PLUS, Italian network for LGBT PLHIV

 

Freelance Journalist

Italy
Marvelous Muchenje
Marvelous Muchenje

Marvelous Muchenje

Manager Community

 

Relations & Communications

ViiV Healthcare, Canada

Canada
Erika Castellanos
Erika Castellanos

Erika Castellanos

Director of Programs

GATE, Member Communities, Rights and Gender Advisory Group

 

Member of the Board

Global Fund

 

Member

ViiV Positive Action Strategic Advisory Council

Belize
Bruce Richman
Bruce Richman

Bruce Richman

Founding Executive Director

Prevention Access Campaign

 

Founder

U=U

America
Siegfried Schwarze
Siegfried Schwarze

Siegfried Schwarze

Member

EATG & ECAB

 

Member

DAGNÄ & DAIG

Germany
Anton Eremin
Anton Eremin

Anton Eremin

Infectious Diseases Clinician & Researcher

Moscow Regional AIDS Center

 

HIV Consultant

AIDS.CENTER Foundation

Russia
Keita Kambara
Keita Kambara

Keita Kambara

Member

Japanese Network of People living with HIV/AIDS (JANP)

 

HIV Consultant

AIDS.CENTER Foundation

Japan
Marta McBritton
Marta McBritton

Marta McBritton

President and Co-Founder

NGO Barong Cultural Institute

 

Educator in behavioural intervention activities

Brazil
Gary Brough
Gary Brough

Gary Brough

Lead for Peer Learning, Partnerships & Policy

Positively UK

 

Co-founder

Bloomsbury Patients Network

 

Community Representative

NHIVNA

London HIV Clinical Forum

London Fast Track City Leadership Group

UK
Diego Garcia Morcillo
Diego Garcia Morcillo

Diego Garcia Morcillo

Director

Sevilla Checkpoint

 

Member

EATG Fast Track City Leadership Group

Spain
David Hardy
David Hardy

David Hardy

Adjunct Professor of Medicine

Division of Infectious Diseases at John Hopkins University School of Medicine

 

Chair of the Board

HIVMA

AAHIVM

America
Pascal Pugliese
Pascal Pugliese

Pascal Pugliese

President of COREVIH Paca Est (Coordination of the Fight Against HIV and STIs)

Division of Infectious Diseases at John Hopkins University School of Medicine

 

Hospital Practitioner

Clinical Virology Unit, CHU de Nice

France

Download the results report

If you would like to find out more about Positive Perspectives study, you can download the full results report here.

Download