Creating Productive Tensions: Clinicians Working with Patients as Peer Researchers in a Community-Based Participatory Research Study of the Lived Experience of HIV-Associated Neurocognitive Disorder (HAND)

Abstract

About 50% of people living with HIV will develop HIV-associated neurocognitive disorder (HAND) during their lifetime, and we know that cognitive issues are a concern for people living with HIV. However, limited information exists regarding how HAND is managed and coped with, or how cognitive issues are discussed with others, including health care professionals. Following a community-based research approach, we conducted 25 interviews in 2016 aimed to (1) build the capacity of people living with HIV, (2) facilitate participant recruitment and data collection, (3) increase the validity and reliability of our data analysis results, and (4) facilitate knowledge transfer and exchange regarding HAND. After thorough training, we engaged a number of peer researchers living with HAND in the analysis and knowledge transfer and exchange (KTE) phases of the study. This engagement prompted a number of tensions between the clinicians and the peers that we learned to navigate and make productive. We conclude that it is possible to engage patients and providers only if careful attention, time and human resources are provided to navigating the emerging tensions. The outcomes of our study suggest that engaging an interdisciplinary team across multiple sites with PRAs is a valuable method for comprehensively exploring the lived experience of a complex chronic condition such as HAND.