Introduction
A strong evidence base suggests that stigma—and the resultant fear of being judged or treated poorly—keeps people from accessing HIV and other health services.1–7 As such, stigma is a global public health threat that can have consequences on the epidemiology of HIV and other health conditions. The most commonly used definition of stigma is the one articulated by Goffman in his seminal work ‘Stigma: Notes on the Management of Spoiled Identity’.8 He defined stigma as a process through which individuals are ‘disqualified from full social acceptance’ due to an undesirable ‘mark’ or ‘label’. This label can be a physical, health or behavioural attribute that is deemed ‘deeply discrediting’. Half a century after Goffman’s seminal work was first published, interest in stigma has grown exponentially.9 The study of stigma has extended beyond sociology (where it originated) to public health and, most notably, HIV epidemiology.2 9–18
The vast majority of stigma intervention research focuses on averting discrimination (also known as enacted stigma).12 14 But people may also internalise stigma,19 leading to what Goffman called ‘spoiled identities’ or self-stigma. Self-stigma occurs when people who belong to a socially discredited group (eg, people living with HIV, people who use illicit drugs) internalise feelings of shame and worthlessness due to their socially devalued identity, or ‘spoiled identity’.16 20 Although self-stigma is experienced by individuals, it is also influenced by structural and relational forces that dominate their lives, such as discrimination, social exclusion and poverty.16 21 22 In line with this, Livingston and Boyd16 define self-stigma as ‘a subjective process, embedded within a socio-cultural context, which may be characterized by negative feelings (about self), maladaptive behaviour, identity transformation, or stereotype endorsement resulting from an individual’s experiences, perceptions, or anticipation of negative social reactions on the basis of their [socially devalued identity or] illness’. Self-stigma is particularly dangerous because it impacts anticipated and perceived stigma, and influences affective, cognitive and mental health outcomes, as well as healthcare behaviours, which ultimately affect physical health outcomes.19 21 23 In short, self-stigma contributes to AIDS-related morbidity and mortality by hampering adherence to life-saving antiretroviral treatment (ART),2 7 constraining people’s quality of life and spurring suicidal ideation.24 25
Unlike HIV-related discrimination, self-stigma remains strikingly understudied with no evidence of well-established, large-scale programmes to address it.12 13 26 In particular, there are two major gaps in our understanding of how to address self-stigma among people living with or affected by HIV. First, there is no synthesis of evidence on what works to address self-stigma in resource-limited settings. A recent systematic review and meta-analysis examined antistigma interventions in healthcare settings but only found eight studies reporting on self-stigma as a stand-alone outcome. Of these eight studies, three studies reported significant reductions in self-stigma, another three reported reductions in self-stigma that were not statistically significant, and two provided insufficient data for inferences about stigma reduction.14 While this previous review focused on interventions in healthcare settings, specialised mental health resources are scarce in low-income and middle-income countries (LMICs),27 and interventions are often delivered by community-based organisations or peers outside of the healthcare system.28 In such settings, it is essential to advance our understanding on what works to address self-stigma through scalable, community-based responses.
Second, no systematic review has explored what works to address other sources of self-stigma experienced by people living with or affected by HIV. For example, gay, bisexual and other men who have sex with men, sex workers, transgender people, people who inject drugs and incarcerated people are identified as ‘key populations’ who are particularly vulnerable to HIV.29 But a number of sociostructural risks including stigma and discrimination, poverty, punitive laws and policies, and violence also make these populations vulnerable to self-stigma related to their marginalised identities.30–35 Key populations may experience additional self-stigma due to viral hepatitis, which is highly prevalent in these groups.36 Similarly, people living with HIV in LMICs are also highly vulnerable to tuberculosis (TB) coinfection, and it is important to understand what works to address the resultant self-stigma.37 38 It is essential to review this body of evidence to inform culturally sensitive, scalable and sustainable service delivery models that reach the most marginalised populations disproportionately affected by HIV-related and other types of self-stigma.
In this review, we aim to address these gaps by identifying, synthesising and critically appraising existing evidence of interventions aiming to reduce self-stigma experienced by people living with HIV and key populations affected by HIV in LMICs. It is hoped that this review will inform much-needed programmes to address self-stigma among communities that are disproportionately marginalised.