Intersectional Stigma Matters! Exploring Perspectives on Care-Seeking and Health Decisions Among Vulnerable Women in Uganda

Background: Stigma is among the more insidious barriers driving sustained gaps in positive health outcomes. Emerging qualitative stigma research highlights how women who hold stigmatizing social statuses experience more unmet health needs, resource-driven quality of care, and fear of disclosure of occupation or health status. As such, it remains unclear the extent to which experiences of stigma across multiple social statuses (i.e., HIV status, sex work) may affect care-seeking attitudes and health decisions particularly in low-resourced contexts. This study explores the individual and social context of stigma experiences among marginalized women pursuing healthcare in Masaka region, Uganda. More so, it examines if and how these same experiences influence women’s care-seeking attitudes and behaviors and shape the overall care experience.

Methods: A purposive sample of 52 women engaged in in-depth interviews about their healthcare experiences and related care-seeking attitudes and behaviors. Interview protocols and transcripts were translated into Luganda by a certified translator, then reviewed by research staff proficient in Luganda, and subsequently back translated by the translator in English before implementation. Reflexive thematic analysis was utilized to explore the influence of intersectional stigma on women’s health decisions. Intersectional stigma refers to the convergence of multiple stigmatized social statuses due to intersecting prejudices related to affiliations to marginalized groups or particular behaviors. Reflexive thematic analysis strategies centered on building understanding around the complexity of stigmatized women’s realities in seeking care and how this may manifest in health decisions in low-resourced environments..

Results: Women’s perspectives underscored the ways in which intersectional community stigma influenced care experiences in an already insecure, low-resourced environment more so than any other type of stigma. Quality of care was perceived as conditional and often contingent on availability of resources, standard of care given during health visits, and community-driven attitudes and behaviors. Themes underscored the salience of intersectional community stigma on care-seeking attitudes and behaviors. Four overarching themes emerged: 1) Disclosure is a risk: Intersectional stigma impedes disclosure of marginalized social statuses limiting the care experience; 2) Intersectional community stigma permeates health decisions: Care-seeking attitudes and behaviors are shaped by intersectional community stigma; 3) Adaptive strategies are essential to maximize care experiences: Adaptive strategies are used to improve experiences and to get health needs met in highly stigmatizing environments; and 4) The Care Seeking Cost-Benefit Tradeoff: Health decisions are negotiated in terms of costs and benefits where need for care is weighed against availability of resources and expectation of negative experiences.

Conclusions and Implications: Women’s care-seeking attitudes and behaviors reveal the intrinsic adaptive skills, strength, and resilience they possess to address individual health needs despite known barriers, including stigma. This provides insights into future stigma reduction interventions. Low-resourced environments may have limited capacity to mitigate the effects of intersectional community stigma and may benefit from more targeted stigma reduction interventions. Findings suggest areas for further development within the Uganda Health System, including building the capacity of staff to engage in relational care and to increase understanding of the detrimental influence on patients of HIV-related intersectional stigma.