Researchers at McGill and the Ottawa Hospital invite you to contribute to this study:
Factors Associated with Willingness to Participate in End-of-Life HIV Cure Research: Perspectives from People Living with HIV in Canada
HIV cure research is a type of research seeking a way to cure individuals from HIV. HIV cure research raises a number of issues because it necessitates access to tissues and organs where HIV remains ‘asleep’ or dormant, like the brain, lymph node and bone marrow. These tissues cannot be easily sampled for research reasons. A possibility is to collect these tissues by conducting a research autopsy on people living with HIV (PLWH) at the end of their life. The perspective of PLWH is therefore extremely important on end-of-life HIV cure research due to such sensitive issues. In this study, we will use surveys and in-depth interviews with PLWH to better understand their perspectives on end-of-life HIV cure research and the factors that could improve their associated experience. A better understanding of these factors could then be taken into consideration when designing patient- centred interventions to approach, include, and interact with patients wanting to participate in end-of- life HIV cure-related studies.
The purpose of this study is:
· To better understand the point of view of people living with HIV, and what they think about end of life research.
· To identify factors associated with willingness to participate in end-of-life HIV cure research
To identify ways to improve the participant experience in end-of-life HIV cure research and make the process more meaningful
To explore how much people with HIV already know about end-of-life research for HIV cure and inform potential participants about this field of research
Participation is confidential and entirely voluntary.
To participate, you must:
- Be living with HIV
- Be 65 years old or older OR have a terminal condition
- To fill out a survey (30-60 minutes; on the phone or internet)
- Optional: participate in an in-depth interview (60 minutes)
- Financial compensation is offered for your time
To participate, please contact us: firstname.lastname@example.org