Understanding the experience of side effects: 50 people living with HIV share their stories

Event Date: 
April 12 2017, 1:00 pm EDT

Despite the availability of new ARVs and the simplification of treatment options, side effects continue to affect people living with HIV. Side effects negatively impact health, well-being, and quality of life. They also contribute to poor treatment adherence and treatment discontinuation. Qualitative studies published to date are almost exclusively focused on adherence. While they help us understand that side effects make it harder for people to take their treatment and stay on treatment, they fail to capture the experience of side effects as a whole. This webinar will present the findings of a study during which 50 people living with HIV shared their experience with side effects. It will conclude with a brief overview of recommendations and next steps.


  1. Better understand the experience of side effects;
  2. Identify the needs of people living with HIV;
  3. Reflect on possible next steps and actions that could be taken to address such needs.


Dr. Marilou Gagnon is Associate Professor at the School of Nursing, Faculty of Health Sciences, University of Ottawa and Director of the Unit for Critical Research in Health. Her work is underpinned by critical and sociopolitical approaches. Her fields of study include questions related to the body and technology, power and discourse, and social justice. As a member of the University Chair in Forensic Nursing, she is working on a number of projects on HIV criminalization, HIV-related stigma and discrimination in health care settings, and human rights. She served on the board of directors of the Canadian Association of Nurses in AIDS Care (CANAC) (09–13) and was Expert Advisor Research, Policy and Advocacy for CANAC from 2013-16. She also served on the board of the Bureau Régional d’Action Sida (BRAS) in Gatineau (12-14) and joined the Canadian HIV/AIDS Legal Network’s board of directors in 2013 for a first mandate and a second mandate in 2015. She currently serves as Chair of the Legal Network’s Board. She is the Founder of the Coalition of Nurses and Nursing Students for Supervised Injection Services, creator of the Facebook campaign Harm Reduction = Nursing Care, and founder and editor of the blog Radical Nurse.

Let’s talk side effects - Research brief (PDF)

Powerpoint/PDF File: