Stigma and Cancer Prevention and Treatment
Extensive research has been carried out on the impact of HIV stigma on the ability of PLWH to access essential services, including cancer prevention in the form of tobacco use cessation services. This research indicates that HIV stigma hinders the use of HIV-related medical infrastructure, including that for cancer prevention and screening services, such as tobacco use cessation interventions. During the formative stage of the parent project, PLWH and health care providers identified HIV stigma in decreasing the motivation of PLWH to engage in tobacco use cessation programming offered through HIV health clinics due to concern that it would lead to community awareness of their HIV status. They also noted tobacco use stigma, especially for women, as a cause for failing to notify their physician of risky behaviors that increase cancer risk.
Key Methods
Study Locations: The study was carried out at the 16 Quit4Life+ sites in Uganda and Zambia
This qualitative study examined cancer-related stigma as a barrier to cancer prevention and treatment among people living with HIV (PLWH) in Uganda and Zambia, drawing on an in-depth qualitative dataset designed to understand how stigma impacts engagement in and access to cancer prevention, treatment, and care services.
Data collection comprised eight focus group discussions with PLWH and 14 key informant interviews with HIV healthcare providers, collected in January 2024, across two districts each in Uganda (Arua in the West Nile region and Moroto in Karamoja) and Zambia (Mongu in Western Province and Chipata in Eastern Province), with each district holding separate male and female PLWH focus groups (5–7 participants each) plus 3–4 key informant interviews, totaling 55 participants.
Eligible participants were HIV-positive adults (18+) receiving antiretroviral therapy or health workers at the participating clinics, and the coded transcripts explore themes of stigma associated with cancer, stereotypes, and anticipated discrimination, including drivers like misconceptions about disease origins and outcomes and associations with other stigmatizing conditions and behaviors.
Notably, this dataset is valuable for researchers studying intersectional stigma, since it extends beyond HIV stigma alone to highlight impacts of intersectional stigmas, including those related to gender, cancer, and substance use. Researchers should be aware that the qualitative design, limited sample size, and purposive sampling may limit generalisability beyond the study setting, though the results are likely relevant to similar sub-Saharan African healthcare settings and will be complemented by forthcoming quantitative findings, suggesting linked quantitative data may become available for mixed-methods or triangulation work.
Participants and Recruitment: Individuals were eligible for the study if they are HIV + , use tobacco according to the definition below, are aged 18 years or older, and are receiving continuous HIV care from a treatment facility. Individuals were ineligible for study participation if they: are currently pregnant or breastfeeding (or planning to do so in the next 6 months); have a physical or cognitive condition that would prevent them from study participation; or are illiterate in both English and the local language.
Data Management and Analysis: Transcripts of the PLWH FGDs and HCP KIIs were reviewed by study personnel. Participants’ anonymity was maintained throughout the research process using numbers and confidential data treatment. One research team member developed the first draft of the codebook based on the FGD and KII moderator guides. This draft was expanded during the early stages of coding as additional relevant topics emerged. Specifically, themes focused on each discussion topic area including the presence of stigma, drivers and impacts of stigma across interpersonal, intrapersonal, and structural levels, and potential stigma-reduction strategies. Subthemes were also identified from each key theme. Data were coded after interpretation and analysed using Dedoose Software V.9.0.54.18 Qualitative data were initially analysed manually and separately by two study team investigators. Team members then met to discuss and compare emerging themes, where a third study investigator served as an arbitrator to resolve any coding discrepancies. Through this process, the codebook was finalised (eg, refining definitions and inclusion/exclusion criteria for coding excerpts into specific themes), and transcripts were brought into 100% agreement. From the analysis, details of each theme and related quotations from the FGD and KIIs are presented to support key findings.
Qualitative Measures: To assure standardisation across study countries/sites, discussion guides were used for both FGDs and KIIs. Guides contained thematic discussion questions focused on types, magnitude and drivers of stigma individually and in the community, impacts on care-seeking behaviours, and structural factors that potentially exacerbate experiences of stigma within the community, including access to care among PLWH. Cancer prevention services were defined as available screenings, testing, vaccination, and counselling, while care included available surgeries, chemotherapy, radiotherapy, and immunotherapy treatments to those diagnosed and referred. Before beginning discussions and KIIs, participants completed a short, anonymous questionnaire that recorded demographic information including age, gender, marital status, and, when applicable, position within the clinic.
