Recognizing and disrupting stigma in implementation of HIV prevention and care: a call to research and action

Abstract

Introduction There is robust evidence that stigma negatively impacts both people living with HIV and those who might benefit from HIV prevention interventions. Within healthcare settings, research on HIV stigma has focused on intra‐personal processes (i.e. knowledge or internalization of community‐level stigma that might limit clients’ engagement in care) or inter‐personal processes (i.e. stigmatized interactions with service providers). Intersectional approaches to stigma call us to examine the ways that intersecting systems of power and oppression produce stigma not only at the individual and interpersonal levels, but also within healthcare service delivery systems. This commentary argues for the importance of analysing and disrupting the way in which stigma may be (intentionally or unintentionally) enacted and sustained within HIV service implementation, that is the policies, protocols and strategies used to deliver HIV prevention and care. We contend that as HIV researchers and practitioners, we have failed to fully specify or examine the mechanisms through which HIV service implementation itself may reinforce stigma and perpetuate inequity. Discussion We apply Link and Phelan's five stigma components (labelling, stereotyping, separation, status loss and discrimination) as a framework for analysing the way in which stigma manifests in existing service implementation and for evaluating new HIV implementation strategies. We present three examples of common HIV service implementation strategies and consider their potential to activate stigma components, with particular attention to how our understanding of these dynamics can be enhanced and expanded by the application of intersectional perspectives. We then provide a set of sample questions that can be used to develop and test novel implementation strategies designed to mitigate against HIV‐specific and intersectional stigma. Conclusions This commentary is a theory‐informed call to action for the assessment of existing HIV service implementation, for the development of new stigma‐reducing implementation strategies and for the explicit inclusion of stigma reduction as a core outcome in implementation research and evaluation. We argue that these strategies have the potential to make critical contributions to our ability to address many system‐level form stigmas that undermine health and wellbeing for people living with HIV and those in need of HIV prevention services.

Public health services and intersectional stigma: a social sciences perspective with implications for HIV service design and delivery

“…The study argues that greater focus should be accorded to examining space as a multilevel concept and driver of stigma and health, research methods that examine interlocking systems and structures within Implementation: PrEP, ART and vaccines spaces that require intervention, and investing in place-based and systems-focused approaches to addressing HIV inequalities. Another study adopted Link and Phelan's stigma concepts (labelling, stereotyping, separation, status loss and discrimination) [8] in examining how stigma may manifest in the context of HIV service delivery [31]. It describes how health services protocols, outreach efforts to 'at-risk' populations, segregation of clinic spaces and services, and the lack of policies that protect those affected by HIV from discrimination and harassment can inadvertently lead to stigma [31].…”

“…Another study adopted Link and Phelan's stigma concepts (labelling, stereotyping, separation, status loss and discrimination) [8] in examining how stigma may manifest in the context of HIV service delivery [31]. It describes how health services protocols, outreach efforts to 'at-risk' populations, segregation of clinic spaces and services, and the lack of policies that protect those affected by HIV from discrimination and harassment can inadvertently lead to stigma [31]. Aligned with these recent calls for greater nuance, several recent studies have sought to go beyond merely highlighting the presence of stigma in spaces but interrogate how spatial elements socially produce or mitigate stigma.…”

The local dynamics of sociostructural features and HIV stigma in the HPTN 071 (PopART) trial: An analysis of community-level data from Zambia and South Africa.

“…For example, Wringe et al (2010) raise their concern that women are more likely than men to be diagnosed with HIV through routine health care access and through HIV programs, resulting in women bearing the brunt of HIV stigma. A recent commentary (Golub & Fikslin, 2022) argues that HIV programs can unintentionally trigger one or more of Link and Phelan's (2001) four components of the process of stigmatization (labeling, stereotyping, separation, and status loss and discrimination) to activate stigma, overlooking the intersection of power and oppression. For example, PopART trial CHWs visiting households and conducting follow-up visits were said by some participants to have inadvertently labeled and stereotyped individuals and households, unintentionally triggering HIV stigma.…”

“…These features interacted alongside stigma in unique and dynamic ways, with shifts in local feature dynamics increasing or decreasing stigma, and often not directly either just impeding or enabling stigma. The implications of this analysis for HIV programs and addressing the societal enablers (Stangl et al, 2023) are to build on local community momentum and history of addressing HIV and stigma, recognize that each community has a unique combination of features that push stigma up and down, be wary that interventions that identify PLHIV can trigger stigma (Golub & Fikslin, 2022), and to contest “othering” of groups. This contextual and stigma tailoring of HIV services and programs could be achieved through rapid qualitative assessments of HIV history and options (Bond et al, 2021), community-led monitoring (Baptiste et al, 2020; Makoni et al, 2022), and the inclusion of stigma reduction as core outcomes of program implementation (Golub & Fikslin, 2022).…”

What will it take to get to the heart of stigma in the context of HIV?

“…[29] present findings from a global systematic review that highlight the gaps and diversity within existing measures and conceptual frameworks to address stigma. Finally, Golub and Fiskin's [30] commentary suggests that HIV researchers and practitioners have failed to fully specify or examine the mechanisms through which HIV service implementation itself may reinforce stigma and inequity.…”