Developing measurements to evaluate intersectional stigma related to cancer and HIV

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PROJECT SUMMARY This application is being submitted in response to the Notice of Special Interest (NOSI) identified as “NOT-CA-23-036.” Sub-Saharan Africa (SSA) bears a disproportional burden of HIV globally. Additionally, the risk for malignancy in this population far exceeds the general population with higher associated morbidity and mortality. As the dual burden of HIV and cancer in the global population increases, investigation of the impact of stigma on this population is crucial for improving health outcomes. Stigma is a well-studied construct that occurs when individuals are recognized and labeled as “other” due to various sociodemographic, behavioral, or health-related characteristics, and has been linked to poor quality of life and health-related outcomes. Stigma associated with HIV and cancer diagnoses in particular have been associated to poor mental health, low treatment adherence rates, and decreased healthcare engagement. When an individual has multiple, co-occurring stigmatizing characteristics, they have the potential for a more complex stigma experience, termed intersectional stigma. Individuals living with HIV and cancer may experience stigma more prominently due to one dominant stigmatizing condition or may experience a synergistic or multiplicative effect. Intersectional stigma has been measured via validated scales for constructs such as race, ethnicity, gender identity, and behavior, but no scale exists to measure the intersectionality of HIV and cancer stigma. The ability to measure the stigma experience in people living with HIV and cancer is crucial for assessing its influence on health-related behaviors and for designing more targeted interventions. As an administrative supplement to U54 CA254571, our overall goal is to initiate the development of a scale that effectively measures intersectional stigma in patients with concurrent HIV and cancer diagnoses. Our specific aims are: 1) To develop a preliminary pool of scale questions that capture key dimension of HIV and cancer intersectional stigma. We will use both pre-existing and de-novo qualitative interviews and quantitative data to develop this initial pool. 2) To involve community stakeholders and participants with HIV and cancer in further refinement of the pool of scale questions. We will use techniques including member checking and cognitive debriefing. 3) To complete preliminary item validation on a population subset of patients living with both HIV and cancer. To achieve these aims, we leverage a multidisciplinary team of leaders in stigma, scale development, HIV-associated cancers, and epidemiology. We will develop an intersectional stigma scale for HIV and cancer supported by our already existing laboratory for HIV and malignancies in the AMPATH network in western Kenya, funded by parent grant U54 CA254571. Findings from this work are expected to lead to the development of an intersectional stigma scale that will help to better characterize co-occuring, potentially synergistic HIV and cancer stigma and ultimately allow us to develop more informed health interventions.