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Project

Interactive Technology to Support HIV Management among Adolescents in Ethiopia

HIV continues to be one of the global health challenges, particularly in highly burdened regions such as sub-Saharan Africa, including Ethiopia which is the most populous country among the hotspot regions. A significant number of people living with HIV concerns children who acquired HIV mainly perinatally. Nowadays, treatment success for children with HIV has changed the face of the epidemic. Before, children with HIV encountered life-threatening experiences, now they are handling a chronic condition that remains largely manageable. The new challenge of this success is therefore life-long HIV management, especially as children survive into adolescence. Unfortunately, adolescents are outliers in HIV management. While HIV progression has generally slowed down, adolescents represent a growing share on various indicators, showing an increase in new infections, lower treatment compliance and consequently a rise in HIV-related deaths. The impact of HIV is particularly high in low -income countries such as those in sub-Saharan Africa, including Ethiopia, where HIV is one of the leading causes of death among young people. This is not only because HIV disproportionally affects adolescents, but in turn, it is caused by issues such as HIV stigma, lack of adequate support, and treatment burden.

Interactive technologies provide new opportunities for managing chronic illnesses in children and adolescents such as asthma, diabetes, and ADHD – particularly in developed regions of the world. Reflecting on this potential, one may wonder whether and how interactive technologies can play a role in HIV management among adolescents in low-income regions of the world, where there is limited access to and experience of technology. While technology to support HIV management is acknowledged in general, design for HIV overwhelmingly focuses on adult medication adherence, neglecting adolescents, particularly those in low-income regions and their complex lived experiences.

This doctoral research explored interactive technology as a means of supporting HIV management among adolescents in a low-income and high HIV burden context. To lay the foundations, this research started exploring prior information and communication systems that support HIV management through two systematic literature reviews. The first systematic review focused on existing eHealth interventions for adolescent antiretroviral adherence, and the extent to which they were informed by behavioral theories and motivational design. The second systematic review comprised a study of the actual design of interactive systems to support the management of HIV, with a focus on design strategies through the lens of stigma theory. Next, a qualitative study was conducted that combined interviews and focus groups with adolescents living with HIV, parents, and healthcare workers, leveraging the Integrated Behavioral Model, to gain insights into the lived experiences of adolescents, and to understand the role of technology to support them. Building upon findings from the systematic reviews and the qualitative study, a story-based interactive system was built that guides parents in disclosing to their children that they have HIV, through an incremental disclosure process. As a last research endeavor, this experience prototype was evaluated through interviews with six parents, leveraging Interpretative Phenomenological Analysis.

The results of this work revealed that adolescents living with HIV have complex lived experiences impacted by several factors, most of which emerged from missed intervention opportunities during childhood. Of these factors, the dominant one is non-disclosure – the fact that adolescents remain unaware of their HIV status as HIV stigma causes parents to be reluctant to disclose. This leaves adolescents without building proper attitudes, knowledge, and competences for HIV and its management. Reflecting on the findings of this work, there are a wide range of

opportunities for interactive technologies to support HIV management among adolescents. For an optimal impact, designs should not only target adolescents, but also engage a wide range of stakeholders – parents and young children; individually as personal users, as well as through family-centered design, as group users. Findings from the evaluation study of the experience prototype indicated the potential of interactive systems to transform parental attitudes about when, what, and how to disclose HIV status to children. The results also confirmed the potential of interactive storytelling to support parental communication of sensitive information to children. Acknowledging that HIV is a highly sensitive context, especially in the given setting, the findings from this work underscore the need to follow an intersectional approach with a deep empathizing with young children, adolescents, parents, or even entire family.

Date:5 Feb 2019 →  6 Mar 2023
Keywords:persuasive technology, mHealth, pediatrics ART adherence, behavioral theory, behavioral change techniques
Disciplines:Human-computer interaction, Computer science
Project type:PhD project