"That courage to encourage": Participation and Aspirations in Chat-based Peer Support for Youth Living with HIV
Naveena Karusala, David Odhiambo Seeh, Cyrus Mugo, Brandon Guthrie, Megan A. Moreno, Grace John-Stewart, Irene Inwani, Richard Anderson, Keshet Ronen
Abstract
We present a qualitative study of a six-month pilot of WhatsApp-based facilitated peer support groups, serving youth living with human immunodeficiency virus (HIV) in an informal settlement in Nairobi, Kenya. Popular chat apps are increasingly being leveraged to make a combination of patient-provider communication and peer support more accessible beyond formal healthcare settings. However, how these interventions are experienced in Global South contexts with phone sharing and intermittent data access is understudied. The context of stigmatized illnesses like HIV further complicates privacy concerns. We draw on chat records and interviews with youth and the facilitator to describe their experience of the intervention. We find that despite tensions in group dynamics, intermittent participation, and contingencies around privacy, youth were motivated by newfound aspirations and community to manage their health. We use our findings to discuss implications for the design of chat-based peer interventions, negotiation of privacy in mobile health applications, and the role of aspirations in health interventions.
Ask about this paper
Ask your agent about it.
Lune has read the top-tier papers around this one, so every answer names the papers it rests on.
Cited by top-tier papers15
- Using Thematic Analysis in Healthcare HCI at CHI: A Scoping ReviewRobert Bowman, Camille Nadal, Kellie Morrissey, Anja Thieme et al.CHI 2023 · 106 citations
- "Help Me: " Examining Youth's Private Pleas for Support and the Responses Received from Peers via Instagram Direct MessagesJina Huh-Yoo, Afsaneh Razi, Diep N. Nguyen, Sampada Regmi et al.CHI 2023 · 35 citations
- Supporters First: Understanding Online Social Support on Mental Health from a Supporter PerspectiveMeeyun Kim, Koustuv Saha, Munmun De Choudhury, Daejin ChoiCSCW 2023 · 24 citations
- Searching for the Non-Consequential: Dialectical Activities in HCI and the Limits of ComputersHaoqi ZhangCHI 2024 · 12 citations
- Designing for Peer-Led Critical Pedagogies in Computer-Mediated Support Groups for Home Care WorkersAnthony Poon, Lourdes Guerrero, Julia Loughman, Matthew Luebke et al.CHI 2023 · 11 citations
Related papers
- "Should I visit the clinic": Analyzing WhatsApp-mediated Online Health Support for Expectant and New Mothers in Rural IndiaDeepika Yadav, Kirti Dabas, Prerna Malik, Anushka Bhandari et al.CHI 2022 · 38 citations
- Exploring the Potential of Peer Support Group for Family Planning Needs of Women in Resource-constrained Settings in IndiaJasmeet Kaur, Pushpendra SinghCSCW 2025 · 3 citations
- The Challenge of (Non-)Disclosure: Exploring the Lived Experience of Ethiopian Adolescents with HIV and Their Attitudes Toward TechnologyAlemitu Mequanint Bezabih, Kathrin Gerling, Workeabeba Abebe, Vero Vanden AbeeleCHI 2022 · 7 citations
- Trust, Identity, Privacy, and Security Considerations for Designing a Peer Data Sharing Platform Between People Living With HIVAdrian Bussone, Bakita Kasadha, Simone Stumpf, Abigail C. Durrant et al.CSCW 2020 · 43 citations
- Limitations of Using Mobile Phones for Managing Type 1 Diabetes (T1D) Among Youth in Low and Middle-Income Countries: Implications for mHealthSusan Wyche, Jennifer Olson, Mary Karanu, Eric Omondi et al.CSCW 2024 · 4 citations
