Telling the story of intersectional stigma in HIV‐associated Kaposi's sarcoma in western Kenya: a convergent mixed‐methods approach
Year: 2022
Type: article
Study design: Observational Study
Abstract: INTRODUCTION: The experience of stigma can be multifaceted for people with HIV and cancer. Kaposi's sarcoma (KS), one of the most common HIV-associated cancers in sub-Saharan Africa, often presents with visible skin lesions that may put people at risk for stigmatization. In this way, HIV-associated KS is unique, as people with KS can experience stigma associated with HIV, cancer, and skin disease simultaneously. The aim of this study is to characterize the intersectionality of HIV-related, cancer-related and skin disease-related stigma in people living with HIV and KS. METHODS: We used a convergent mixed-methods approach nested within a longitudinal study of people with HIV-associated KS in western Kenya. Between February 2019 and December 2020, we collected quantitative surveys among all participants and conducted semi-structured interviews among a purposive sample of participants. Quantitative surveys were adapted from the abridged Berger HIV Stigma Scale to assess overall stigma, HIV-related stigma, cancer-related stigma, and skin disease-related stigma. Qualitative data were coded using stigma constructs from the Health Stigma and Discrimination Framework. RESULTS: In 88 semi-structured interviews, stigma was a major barrier to KS diagnosis and treatment among people with HIV-associated KS. Participant's stories of stigma were dominated by HIV-related stigma, more than cancer-related or skin disease-related stigma. However, quantitative stigma scores among the 117 participants were similar for HIV-related (Median: 28.00; IQR: 28.0, 34.0), cancer-related (Median: 28.0; IQR: 28.0, 34.8), and skin disease-related stigma (Median: 28.0; IQR: 27.0, 34.0). In semi-structured interviews, cancer-related and skin disease-related stigma were more subtle contributors; cancer-related stigma was linked to fatalism and skin-related stigma was linked to visible disease. Participants reported resolution of skin lesions contributed to lessening stigma over time; there was a significant decline in quantitative scores of overall stigma in time since KS diagnosis (adjusted β = -0.15, p <0.001). CONCLUSIONS: This study highlights the role mixed-method approaches can play in better understanding stigma in people living with both HIV and cancer. While HIV-related stigma may dominate perceptions of stigma among people with KS in Kenya, intersectional experiences of stigma may be subtle, and quantitative evaluation alone may be insufficient to understand intersectional stigma in certain contexts.
DOI: 10.1002/jia2.25918
Institutions: University of Washington, Harvard University, Virginia Commonwealth University, Massachusetts General Hospital, Infectious Diseases Institute, Makerere University, AMPATH, University of KwaZulu-Natal, University of Connecticut, Institute for Collaboration on Health, Intervention, and Policy, RAND Corporation, Moi University, Indiana University Health, Indiana University Indianapolis, University of California, San Francisco
Language: English
Subfield: Infectious Diseases
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,600
Awards: G1905617539, G2216301341, G2421824305, G4250933420, Uganda-UCSF Consortium on Prevention and Early Detection of HIV-Associated Cancer, G4896261210, G5385170532, G6951835035, G9000065634, G9000241781, G9000257079, Center for HIV Identification, Prevention and Treatment Services, Mentoring in patient-oriented research on HIV prevention in the US and South Africa, Autophagy, Inflammation and Metabolism (AIM) in Disease Center - Phase 2.
OpenAlex ID: W4285025704