Browsing by Author "Butler, Lisa"

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    Telling the story of intersectional stigma in HIV-associated Kaposi's sarcoma in western Kenya: a convergent mixed-methods approach
    (Wiley, 2022) Collier, Sigrid; Singh, Rhea; Semeere, Aggrey; Byakwaga, Helen; Laker-Oketta, Miriam; McMahon, Devon E.; Chemtai, Linda; Grant, Merridy; Butler, Lisa; Bogart, Laura; Bassett, Ingrid V.; Kiprono, Samson; Maurer, Toby; Martin, Jeffrey; Busakhala, Naftali; Freeman, Esther E.; Dermatology, School of Medicine
    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.
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    Understanding Diagnostic Delays for Kaposi Sarcoma in Kenya: A Qualitative Study
    (Wolters Kluwer, 2022-08-15) McMahon, Devon E.; Chemtai, Linda; Grant, Merridy; Singh, Rhea; Semeere, Aggrey; Byakwaga, Helen; Laker-Oketta, Miriam; Maurer, Toby; Busakhala, Naftali; Martin, Jeffrey; Bassett, Ingrid V.; Butler, Lisa; Freeman, Esther E.; Dermatology, School of Medicine
    Background: Although HIV-associated Kaposi sarcoma (KS) is frequently diagnosed at an advanced stage in sub-Saharan Africa, reasons for diagnostic delays have not been well described. Methods: We enrolled patients >18 years with newly diagnosed KS between 2016–2019 into the parent study, based in Western Kenya. We then purposively selected 30 participants with diversity of disease severity and geographic locations to participate in semi-structured interviews. We employed two behavioral models in developing the codebook for this analysis: situated Information, Motivation and Behavior (sIMB) framework and Andersen model of total patient delay. We then analyzed the interviews using framework analysis. Results: The most common patient factors that delayed diagnosis were lack of KS awareness, seeking traditional treatments, lack of personal efficacy, lack of social support, and fear of cancer, skin biopsy, amputation, and HIV diagnosis. Health system factors that delayed diagnosis included prior negative healthcare interactions, incorrect diagnoses, lack of physical exam, delayed referral, and lack of tissue biopsy availability. Financial constraints were prominent barriers for patients to access and receive care. Facilitators for diagnosis included being part of an HIV care network, living near health facilities, trust in the healthcare system, desire to treat painful or disfiguring lesions, and social support. Conclusion: Lack of KS awareness among patients and providers, stigma surrounding diagnoses, and health system referral delays were barriers in reaching KS diagnosis. Improved public health campaigns, increased availability of biopsy and pathology facilities, and health provider training about KS are needed to improve early diagnosis of KS.