Digital activism in Kenya: moving from the digital center to the digital periphery of Long Covid experience

Digital activism around Long Covid has reverberated around the globe, as patients, researchers, and clinicians worked together to understand the chronic condition. However, Long Covid networks, much like other social networks, have hierarchies and barriers that can impede equitable access. In this article, we examine how the global digital center and periphery shape how people with Long Covid connect to networks to learn about their illness symptoms, diagnoses, treatments, and experiences. We introduce case narratives of two Kenyan women-one elite Nairobian who was connected to the digital center and another middle class woman who connected with her through a peripheral digital community-to describe how elite patients were engaged at the digital center, and non-elite patients were engaged in the periphery with digital and non-digital connections through which they cultivated other social networks to communicate, share, and experience their illness experiences. The Kenyan case study introduces a context where people have sophisticated digital lives and are engaged in global information networks. Yet, we argue that some Long Covid patients' experiences are impossible to divorce from the digital activism that has drawn together a remarkable global patient community, causing a ripple effect on how people define and experience the self and illness throughout the world. We conclude that many Kenyans may be engaging with digital networks differently and from different places of geographic, cultural, linguistic, and technological power, possibly cultivating divergent idioms, interpretations, and experiences of the post-viral condition. This demonstrates not only how social networks function at the digital periphery but also the complexities situated within the periphery itself, which is at important social nodes, connected to the digital center.

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Publication Details

Journal
Globalization and Health
Published
2025-05-30
DOI
https://doi.org/10.1186/s12992-025-01120-9
Citations
1
Primary Topic
COVID-19 epidemiological studies
Type
article
Field-Weighted Citation Impact
1.37

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article

Digital activism in Kenya: moving from the digital center to the digital periphery of Long Covid experience

Emily Mendenhall, Nora Kenworthy, Edna Bosire, Lucy W Kamau
1 citations
Globalization and Health
COVID-19 epidemiological studies
1.37
article

Digital activism in Kenya: moving from the digital center to the digital periphery of Long Covid experience

Emily Mendenhall, Nora Kenworthy, Edna Bosire, Lucy W Kamau
article en
1 citations

Abstract

Digital activism around Long Covid has reverberated around the globe, as patients, researchers, and clinicians worked together to understand the chronic condition. However, Long Covid networks, much like other social networks, have hierarchies and barriers that can impede equitable access. In this article, we examine how the global digital center and periphery shape how people with Long Covid connect to networks to learn about their illness symptoms, diagnoses, treatments, and experiences. We introduce case narratives of two Kenyan women-one elite Nairobian who was connected to the digital center and another middle class woman who connected with her through a peripheral digital community-to describe how elite patients were engaged at the digital center, and non-elite patients were engaged in the periphery with digital and non-digital connections through which they cultivated other social networks to communicate, share, and experience their illness experiences. The Kenyan case study introduces a context where people have sophisticated digital lives and are engaged in global information networks. Yet, we argue that some Long Covid patients' experiences are impossible to divorce from the digital activism that has drawn together a remarkable global patient community, causing a ripple effect on how people define and experience the self and illness throughout the world. We conclude that many Kenyans may be engaging with digital networks differently and from different places of geographic, cultural, linguistic, and technological power, possibly cultivating divergent idioms, interpretations, and experiences of the post-viral condition. This demonstrates not only how social networks function at the digital periphery but also the complexities situated within the periphery itself, which is at important social nodes, connected to the digital center.

Globalization and HealthVol. 21(1)
Georgetown University (US), Aga Khan University Nairobi (KE), University of Washington Bothell (US)
John Simon Guggenheim Memorial Foundation
Openalex Percentile: Top 21%
COVID-19 epidemiological studies
1.37
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