Despite remarkable advances in HIV prevention and treatment, men who have sex with men (MSM) continue to face infection rates 26 times higher than the general population. In China, HIV prevalence among MSM has reached 8% nationally, driven by persistent barriers including stigma, fragmented service delivery, and limited community engagement. HIV testing services, the critical entry point to the care continuum, often fail to address the emotional, social, and systemic dimensions that shape prevention behaviors among this population. This dissertation applies service design methodologies to strengthen HIV testing pathways for MSM in Shanghai. Through a collaborative partnership with Shanghai Xinsheng (SCMC), a leading community-based organization, this design research integrates ethnographic observations, in-depth interviews, and co-design workshops to understand testing experiences and co-create contextually grounded solutions. The research is informed by the author's positionality as both a service design researcher and a member of the MSM community with lived experience of navigating HIV testing services across multiple countries. The primary contribution is SENSE (Supportive and Empathetic Navigation for Safer Engagement), a user-centered service system that operates across the entire testing pathway through four integrated dimensions: supportive and empathetic guidance throughout the testing journey, personalized result interpretation, digital tools for community insight synthesis, and system-level coordination among individuals, community organizations, public health institutions, and the Shanghai CDC. SENSE addresses not only functional service delivery but also the relational, emotional, and systemic factors determining prevention engagement. This research extends service design theory into HIV prevention for marginalized populations, demonstrates collaborative design practice in stigmatized contexts while maintaining insider-researcher reflexivity, generates empirical insights into MSM testing experiences in Shanghai, and produces a tangible service innovation embedded within the broader HIV prevention service ecosystem. Beyond academic contributions, this work represents an act of community advocacy, channeling lived experience and design expertise toward health equity. The dissertation argues that closing implementation gaps in HIV prevention requires reimagining services through human-centered, participatory, and systems-oriented design approaches that honor the complexity of those they serve. By demonstrating transformation design in practice, this research contributes to more dignified, accessible, and effective prevention services for sexual minority populations.
Nonostante i notevoli progressi nella prevenzione e nel trattamento dell'HIV, gli uomini che hanno rapporti sessuali con uomini (MSM) continuano ad affrontare tassi di infezione 26 volte superiori rispetto alla popolazione generale. In Cina, la prevalenza dell'HIV tra gli MSM ha raggiunto l'8% a livello nazionale, alimentata da barriere persistenti tra cui stigma, frammentazione dei servizi e limitato coinvolgimento della comunità. I servizi di test HIV, punto di accesso critico al continuum di cura, spesso non riescono ad affrontare le dimensioni emotive, sociali e sistemiche che caratterizzano i comportamenti di prevenzione in questa popolazione. Questa tesi applica metodologie di service design per rafforzare i percorsi di test HIV per gli MSM a Shanghai. Attraverso una partnership collaborativa con Shanghai Xinsheng (SCMC), un'organizzazione comunitaria leader, questa ricerca di design integra osservazioni etnografiche, interviste approfondite e workshop di co-design per comprendere le esperienze di testing e co-creare soluzioni contestualizzate. La ricerca è informata dalla posizionalità dell'autore come ricercatore di service design e membro della comunità MSM, con esperienza vissuta nell'accesso ai servizi di test HIV in diversi paesi. Il contributo principale è SENSE (Supportive and Empathetic Navigation for Safer Engagement), un sistema di servizi centrato sull'utente che opera lungo l'intero percorso di testing attraverso quattro dimensioni integrate: orientamento supportivo ed empatico durante tutto il percorso di testing, interpretazione personalizzata dei risultati, strumenti digitali per la sintesi delle esperienze comunitarie e coordinamento a livello di sistema tra individui, organizzazioni comunitarie, istituzioni di sanità pubblica e il CDC di Shanghai. SENSE affronta non solo l'erogazione funzionale dei servizi, ma anche i fattori relazionali, emotivi e sistemici che determinano l'engagement nella prevenzione. Questa ricerca estende la teoria del service design alla prevenzione dell'HIV per le popolazioni marginalizzate, dimostra la pratica del design collaborativo in contesti stigmatizzati mantenendo la riflessività sulla posizione di insider-researcher, genera insight empirici sulle esperienze di testing degli MSM a Shanghai e produce un'innovazione di servizio concreta inserita nel più ampio ecosistema dei servizi di prevenzione dell'HIV. Oltre ai contributi accademici, questo lavoro rappresenta un atto di advocacy comunitaria, canalizzando esperienza vissuta e competenze di design verso l'equità nella salute. La tesi sostiene che colmare i gap implementativi nella prevenzione dell'HIV richiede di ripensare i servizi attraverso approcci di design human-centered, partecipativi e orientati ai sistemi che onorano la complessità delle persone che servono. Dimostrando il transformation design nella pratica, questa ricerca contribuisce a servizi di prevenzione più dignitosi, accessibili ed efficaci per le popolazioni di minoranze sessuali.
SENSE: a service system for strengthening HIV testing pathways, care navigation, and prevention engagement among MSM
Deng, Jun
2024/2025
Abstract
Despite remarkable advances in HIV prevention and treatment, men who have sex with men (MSM) continue to face infection rates 26 times higher than the general population. In China, HIV prevalence among MSM has reached 8% nationally, driven by persistent barriers including stigma, fragmented service delivery, and limited community engagement. HIV testing services, the critical entry point to the care continuum, often fail to address the emotional, social, and systemic dimensions that shape prevention behaviors among this population. This dissertation applies service design methodologies to strengthen HIV testing pathways for MSM in Shanghai. Through a collaborative partnership with Shanghai Xinsheng (SCMC), a leading community-based organization, this design research integrates ethnographic observations, in-depth interviews, and co-design workshops to understand testing experiences and co-create contextually grounded solutions. The research is informed by the author's positionality as both a service design researcher and a member of the MSM community with lived experience of navigating HIV testing services across multiple countries. The primary contribution is SENSE (Supportive and Empathetic Navigation for Safer Engagement), a user-centered service system that operates across the entire testing pathway through four integrated dimensions: supportive and empathetic guidance throughout the testing journey, personalized result interpretation, digital tools for community insight synthesis, and system-level coordination among individuals, community organizations, public health institutions, and the Shanghai CDC. SENSE addresses not only functional service delivery but also the relational, emotional, and systemic factors determining prevention engagement. This research extends service design theory into HIV prevention for marginalized populations, demonstrates collaborative design practice in stigmatized contexts while maintaining insider-researcher reflexivity, generates empirical insights into MSM testing experiences in Shanghai, and produces a tangible service innovation embedded within the broader HIV prevention service ecosystem. Beyond academic contributions, this work represents an act of community advocacy, channeling lived experience and design expertise toward health equity. The dissertation argues that closing implementation gaps in HIV prevention requires reimagining services through human-centered, participatory, and systems-oriented design approaches that honor the complexity of those they serve. By demonstrating transformation design in practice, this research contributes to more dignified, accessible, and effective prevention services for sexual minority populations.| File | Dimensione | Formato | |
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https://hdl.handle.net/10589/247659