Dataset Information

Telling the story of intersectional stigma in HIV-associated Kaposi's sarcoma in western Kenya: a convergent mixed-methods approach.

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.

SUBMITTER: Collier S

PROVIDER: S-EPMC9274375 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:BackgroundHIV assisted partner services (aPS) is an intervention to improve HIV status awareness among sex and drug-injecting partners of people newly diagnosed with HIV (index clients). Implementation fidelity-the degree to which an intervention is conducted as intended - is critical to effectiveness, but there are limited data about aPS fidelity when delivered by HIV testing service (HTS) providers. We explored factors affecting implementation fidelity to aPS in two high-HIV prevalence counties in western Kenya.MethodsWe used convergent mixed methods adapting the conceptual framework for implementation fidelity within the aPS scale-up project. This was an implementation study examining scale-up of APS within HTS programs in Kisumu and Homa Bay counties that recruited male sex partners (MSPs) of female index clients. We defined implementation fidelity as the extent to which HTS providers followed the protocol for phone and in-person participant tracing at six expected tracing attempts. Quantitative data were collected from tracing reports in 31 facilities between November 2018 and December 2020, and in-depth interviews (IDIs) were conducted with HTS providers. Descriptive statistics were used to describe tracing attempts. IDIs were analyzed using thematic content analysis.ResultsOverall, 3017 MSPs were mentioned of whom 98% (2969/3017) were traced, with most tracing attempts being successful (2831/2969, 95%). Fourteen HTS providers participated in the IDIs-mostly females (10/14, 71%) with a median age of 35 years (range 25-52), who all had post-secondary education (14/14, 100%). The proportion of tracing attempts occurring by phone ranged from 47 to 66%, with the highest proportion occurring on the first attempt and lowest on the sixth attempt. Contextual factors either enhanced or impeded implementation fidelity to aPS. Positive provider attitudes towards aPS and conducive work environment factors promoted implementation fidelity, while negative MSP responses and challenging tracing conditions impeded it.ConclusionInteractions at the individual (provider), interpersonal (client-provider), and health systems (facility) levels affected implementation fidelity to aPS. As policymakers prioritize strategies to reduce new HIV infections, our findings highlight the importance of conducting fidelity assessments to better anticipate and mitigate the impact of contextual factors during the scale-up of interventions.

Project description:IntroductionFemale adolescents living with Human Immunodeficiency Virus are a unique population facing lifelong challenges in reproductive and sexual health ranging from relational, social and legal-ethical considerations. While HIV prevalence of young females is higher than the males (4.9% versus 1%), evidence show that these adolescents in Malawi initiate sex as early as 15 years mostly with adult partners. Yet, young people are frequently reported to be reluctant to discuss sexual matters and demonstrate avoidance of direct questions on sexual issues during interviews. It is critical therefore that researchers invoke youth-friendly approaches to address these complex issues and enable these vulnerable individuals to articulate and advocate for their preferred futures.MethodsThis study used an innovative visual qualitative approach known as 'my story' book which combined image selection and sentence completion exercises to enable adolescents living with HIV to share their stories through interviews. The study involved 14 cases comprising of 14 female adolescents aged 15 to 19, 14 caregivers and 14 health providers working at HIV multidisciplinary centres in Malawi.ResultsThe 'my story' book enabled in-depth exploration of the experiences and issues faced by this vulnerable population. The use of images and sentence completion exercise enabled the researcher to appreciate the type of interactions (or lack of) on sexual issues and status disclosure to significant others including sexual partners. Three themes were revealed, included creating meanings, revealing confirmatory and/or complementary evidence and enabling intergenerational research.ConclusionsThe 'my story' book captured the life experiences and needs of the female adolescents. The book assisted the participants in constructing, communicating, and controlling the articulation of their stories. It positioned female adolescents as a diverse group of social agents able to construct and reflect on their social worlds and real-life issues. This approach was highly effective in creating a youth-friendly context for reflection and revelation regarding sensitive cultural and social issues faced by this group. As such, the 'my story' book could be used in one-on-one counselling or provide data to inform intervention development.