TreatYoSelf: Empathy-driven behavioral intervention for marginalized youth living with HIV

Abstract

Behavioral intervention technologies are well suited to addressing health behavior such as medication adherence, but only if successfully integrated into a user's daily life. Little is known about how to design such technologies to be adoptable, adaptable, useful, and feasible in everyday life. We report on the design process for TreatYoSelf, a smartphone application designed to improve medication adherence among youth living with HIV through reminders and positive reinforcement. Using participatory design, our aim was to understand factors related to adoption and acceptance of behavioral intervention technology as part of daily life. Two challenges of living with HIV led to an empathy-driven approach in our design process: (1) HIV is a stigmatized condition, which (2) disproportionately affects the marginalized populations of young African American men who have sex with men and transgender women. We discuss five empathy-driven design strategies: positive and nonjudgmental tone; minimal, avatar-based gamification; motivational and corny messages; nondisclosure through neutral signifiers; and social support through camaraderie. Our approach enabled us to identify and work through factors, often related to stigma and marginalization, which would lead to rejection of TreatYoSelf use in daily life. CCS Concepts • Human-centered computing➝HCI design and evaluation methods • Applied computing➝Consumer health.

Expanding Human Computer Interaction Methods to Understand User Needs in the Design Process of Personal Health Systems

“…The participatory design process to create TreatYoSelf, a mobile app that can help young people with HIV adhere to their medication regime, is notable because the design team included a patient, a clinician, and a designer who facilitated three design workshops with a total of 13 young people with HIV to ultimately design a minimal gamified system that engendered community through motivational, nonjudgmental, and "corny" messaging [38]. This research provides insights into how participatory design could make intervention messaging and the resulting application more relatable depending on the specific population a research group is working with.…”

Are HIV Smartphone Apps and Online Interventions Fit for Purpose?

“…HCI research investigating the design of technologies for chronic conditions suggests that user needs for technologies supporting chronic disease differ based on the level of stigma [20]. HIV is underresearched in HCI [21]; while recent research has emerged on managing HIV [12,22], medication adherence, and support for tracking personal health information [23], barriers affecting adoption of such technologies such as privacy, security, and trust have been ignored [20,24]. As an interdisciplinary field, HCI is in a good position to develop for, evaluate and create real impact on sexual health and HIV.…”

“…We are entering an era where major m-Health interventions are being proposed to increase the proportion of people with HIV who are diagnosed and engage with care [15,33,34]. HIV remains stigmatized and people living with HIV may be reluctant to disclose their diagnosis [12,23], which can result in other issues such as not accessing health services, or not taking medication regularly. One of the reasons for accessing home testing and online interventions is privacy and poor design interferes with that goal.…”

Tailored, theory-based strategies for engaging lowincome populations with a personal health record

“…We believe this value may be instrumental in engaging patients with technology between clinic visits. The idea of providing health messaging that is empathetic has been explored in recent studies [48], including some aimed at low-income populations [1] [32].…”