The Canadian study on chronic pain in people living with HIV

Almost two years ago, a national study was launched to better understand chronic pain among people living with HIV in Canada. Co-led by five peer-researchers, academics and clinicians, the study recruited 248 PARTICIPANTS from all over the world through community networks and the Canadian Hemophilia Society. The majority of them have been living with HIV for more than 15 years; approximately 13% identify as Indigenous and 45% as racialized. Most are on treatment and have an undetectable viral load.

According to the World Health Organization (WHO), CHRONIC PAIN is pain that lasts or returns for more than three months and interferes with daily life. In this study, 7 out of 10 people reported joint or soft tissue pain, and 1 out of 3 reported nerve pain. Anxiety and depression are common — the body and the heart go together.

Using Q-sorting, a systematic approach to study the viewpoints of participants who hold different perspectives on a particular issue and asking them to rank and sort a series of statements related to that issue, the study team turned numbers into real-life statements and brought together 60+ people in Vancouver and Toronto. Prince Edward Island and online meetings for francophones and clinicians will be coming up.

Beyond medication, many participants mentioned using meditation, prayer, cannabis, exercise and music to manage pain. We hear stories of resilience, fatigue, and hope: being accepted and believed, ageing with dignity, caring for others despite pain, coping with limited means.

Come see the progress of the study here: bit.ly/ChronicPainHIV.

For more information about the study or if you wish to participate, please contact the national coordinator at sarmitha.sivakumaran@mail.utoronto.ca or at painhivcanada.dlsph@utoronto.ca.

Guy-Henri Godin
Severe hemophiliac
Member of the Research Committee on Chronic Pain in HIV-Positive People in Canada, along with a dozen others.