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It’s not “all in your head”: critical knowledge gaps on internalized HIV stigma and a call for integrating social and structural conceptualizations
© The Author(s). 2019
- Received: 25 August 2017
- Accepted: 9 January 2019
- Published: 5 March 2019
Internalized HIV stigma is a public health concern as it can compromise HIV prevention, care and treatment. This paper has two aims. First, it highlights the urgent need for research evidence on internalized HIV stigma based on critical knowledge gaps. Here, critical knowledge gaps were identified based on most up-to-date systematic review-level evidence on internalized stigma related to HIV and mental health difficulties. Secondly, the paper calls for a shift in focus of internalized HIV stigma research, one that moves beyond psychological frameworks to integrate social, structural and intersectional conceptualizations of stigma. This part of the paper reviews the evolution of stigma theory since Goffman’s 1963 seminal work - which defined stigma - to present.
Despite studies consistently suggesting that internalized HIV stigma is more prevalent than enacted stigma, there is little evidence of well-established programs to address it. In addition to this, considerable gaps in basic knowledge about the drivers of internalized HIV stigma hamper the development of an evidence-based response to the problem. The limited intervention and epidemiological research on the topic treats internalized HIV stigma as a purely psychological phenomenon. The second part of the paper provides arguments for studying internalized HIV stigma as a function of social and structural forces: (1) Individual-level interventions for internalized HIV stigma are rooted in out-dated theoretical assumptions; (2) From an ethics point of view, it could be argued that individual-level interventions rely on a victim-centric approach to a public health problem; (3) Social and structural approaches to internalized HIV stigma must be explored due to the high opportunity cost associated with small-scale individual-level interventions.
Critical gaps in intervention and epidemiological research in internalized HIV stigma remain. There has been an absence of a shared, sound theoretical understanding of internalized HIV stigma as a manifestation of social and structural factors. This commentary sought to stimulate a dialogue to remedy this absence. Future research should take into account ethical considerations, the evolution of stigma theory over the past five decades, intersectionality and opportunity cost when framing hypotheses, developing theories of change and designing interventions.
- Internalized stigma
Internalized HIV stigma occurs when a person living with HIV endorses negative attitudes associated with HIV and accepts them as applicable to him or herself [32, 33]. It is characterized by feelings of shame, guilt and worthlessness [44, 77]. In addition to compromising the quality of life of people living with HIV, internalized HIV stigma can also have serious epidemiological consequences. Namely, internalized HIV stigma can contribute to the spread of sexually transmitted infections and HIV by instilling fear of rejection from sexual partners and low self-confidence , hampering condom use  and compromising adherence to anti-retroviral treatment .
Internalized HIV stigma may develop independently of discrimination [32, 33]. For example, when a person is diagnosed with HIV, she or he might decide not to disclose their status to others due to anticipated stigma . This situation would make one susceptible to internalized HIV stigma but less so to overt HIV-related discrimination [26, 41, 59].
However, a growing body of research suggests that irrespective of whether one directly experiences HIV-specific discrimination, internalized HIV stigma is driven by broader social and structural determinants of health [17, 62, 73–75]. Social and structural determinants of health refer to the complex and often overlapping social structures, norms and practices, as well as economic and political disparities that have the power to shape and, at times, limit the health and wellbeing of individuals . This theoretical perspective is rooted in the basic understanding that the psychology of individuals are influenced by their external environment, including their social networks, structures, and institutions .
For example, availability of antiretroviral treatment and economic structures can influence ‘instrumental and symbolic associations between HIV and premature morbidity, economic incapacity and death’ . Social and structural violence against people living with HIV fuel anticipation of stigma [1, 17, 62, 74, 75, 79] such that, in the example above, the newly diagnosed person living with HIV would have developed perceptions about HIV-related stigma prior to their own diagnosis [45, 46]. Therefore although internalized HIV stigma may occur without having personally (or individually) experienced HIV-related discrimination, evidence strongly suggests that it is intimately linked with and shaped by social and structural forces.
This paper has two aims. First, it highlights the urgent need for research evidence on internalized HIV stigma based on critical knowledge gaps. Here, critical knowledge gaps were identified based on most up-to-date systematic review-level evidence on internalized stigma related to HIV and mental health difficulties. Secondly, the paper calls for a shift in focus of internalized HIV stigma research, one that moves beyond psychological frameworks to integrate social and structural conceptualizations of stigma. This part of the paper reviews the evolution of stigma theory since Goffman’s 1963 seminal work - which defined stigma - to present.
Critical knowledge gaps in internalized HIV stigma research
Existing intervention studies heavily focus on reducing enacted stigma , which refers to negative public attitudes or discrimination towards people living with HIV . Despite studies from Argentina, Burkina Faso, Cambodia, Kenya, Russia, South Africa, consistently suggesting that internalized HIV stigma is more prevalent than enacted stigma [26, 58, 63, 66, 67, 84], there is limited evidence of well-established programs to address internalized HIV stigma [16, 72, 80, 81].
Moreover, considerable gaps in basic knowledge about the drivers of internalized HIV stigma hamper the development of an evidence-based response to the problem. A recent systematic review of internalized HIV stigma predictors in sub-Saharan Africa found few longitudinal studies and, within these, only individual-level predictors were assessed: poor HIV-related health and poor mental health were found to precede and drive increases in internalized HIV stigma over time . However it could also be argued that internalized HIV stigma increases psychological distress [32, 33] and compromises HIV-related health through reduced adherence to ART . The relationships between these risks are likely to be cyclical rather than linear but the vast majority of studies on this are cross-sectional, limiting inferences about order of effects [43, 64].
Despite the well-documented effects of social and structural risks on physical and mental health outcomes [20, 40, 55, 60, 61], internalized HIV stigma largely continues to be viewed as occurring in a cognitive and psychological vacuum. The majority of known interventions aiming to reduce internalized HIV stigma have focused on individual-level factors such as self-esteem and cognition among people living with HIV . They have used small sample sizes, limiting inferences about effectiveness . The literature on mental health-related internalized stigma also offers a number of personal empowerment, cognitive behavioural therapy and psycho-education interventions that aim to reduce internalized stigma . However, a recent systematic review and meta-analysis of such interventions was unable to demonstrate their effectiveness in the long term in reducing internalized stigma . In line with this, future intervention research must expand on existing psychological perspectives and take into account the social and structural forces that are likely to shape internalized HIV stigma [1, 15, 62, 65].
More research is also needed to better understand internalized stigma among caregivers of people living with HIV and its potential ripple effects on internalized stigma and health outcomes among people living with HIV. The broader mental health literature suggests that caregivers of people with mental health difficulties commonly experience internalized stigma, which may further affect their interactions with the patient [19, 37]. For example, caregivers experiencing internalized stigma may avoid being identified with the people that they are caring for , which may have serious implications for the quality of care and perceived and internalized stigma of the patient. Similarly, caregivers and family members of people living with HIV experience substantial amounts of stigma-by-association and the adverse effects of this on their mental health have been well documented [8–10, 22]. However, evidence is needed to better understand the effects of caregiver internalized stigma on people living with HIV; to disentangle internalized from other types of stigma-by-association; and to identify points for intervention.
Towards social and structural conceptualizations of internalized HIV stigma
The theoretical, ethical and opportunity cost arguments for studying internalized HIV stigma as a function of social and structural environments are outlined below.
Individual-level interventions for internalized HIV stigma are rooted in theoretical assumptions that arose after Goffman’s seminal work ‘Stigma: Notes on the Management of a Spoiled Identity’ . Goffman 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’. Such labels create the perception that the possessors have less desirable identities (or ‘spoiled identities’) than ‘normal’ people. Stigma, according to Goffman, reduces the possessor ‘from a whole and usual person to a tainted, discounted one’ . Importantly, Goffman posited that stigma is rooted in social interactions. He highlighted that stigmatization requires more than mere labels; rather, a ‘language of relationships’ is essential. Hence, stigma consists of at least two essential components: (1) recognition of difference based on a mark or label and (2) consequent devaluation of the possessor of the mark .
However, in the years following Goffman’s seminal work, stigma theory became highly stigmatizing. The concept of stigma was applied to psychology, most prominently through Scheff’s ‘labelling theory of mental illness’. According to labelling theory, stigma was a product of the behavioural characteristics of both the labellers and the labelled [69, 70]. Here, labelling and symptoms of mental health difficulties were hypothesized to have a cyclical relationship. Scheff thought that whilst symptoms of mental health difficulties contributed to labelling of a person as having a particular disorder, labelling also affected the mental health and behaviour of individuals because the labelled conformed to the negative expectations. ‘When […] persons around the deviant react to him uniformly in terms of the stereotypes of insanity, his amorphous and unstructured rule-breaking tends to crystalize in conformity to these expectations, thus becoming similar to behaviour of other deviants classified as mentally ill’, states Scheff .
Early critics of labelling theory thought that symptomatic behaviour alone – and not labelling – contributed to stigma [18, 39]. In the late 70s and early 80s, such critics dominated the field . They rejected the notion that labelling and poor mental health reinforce each other. For example, Gove believed that ‘the available evidence indicates that deviant labels are primarily a consequence of deviant behaviour and that deviant labels are not a prime cause of deviant careers’ (1975, emphasis added). Similar to labelling theory, its early critics placed a strong emphasis on the role of individual attributes in producing stigma. However, unlike proponents of labelling theory, they stressed that stigma was inconsequential. In other words, they denounced the potential outcomes of stigma, and considered stigma to be an outcome of personal traits and behavioural characteristics of people considered as ‘deviants’.
In response to these individualistic approaches to stigma, Link and colleagues constructed a modified labelling theory [45, 46, 48, 49]. They expanded on Goffman’s work and labelling theory, but rejected the notion that stigma was a direct product of the behavioural attributes of the stigmatized. According to modified labelling theory, stigma manifests itself ‘when elements of labelling, stereotyping, separation, status loss, and discrimination co-occur in a power situation that allows them to unfold’ . As such, stigma is ‘highly situationally specific, dynamic, complex and nonpathological’ . A key contribution of this post-individualistic approach is that it stresses that stigma occurs within social contexts characterized by power inequalities . In 2003, Parker and Aggleton applied modified labelling theory to the study of HIV-related stigma. They defined HIV stigma as a process inherently linked to the maintenance of social and structural power inequalities. Parker and Aggleton highlighted the need to conceptualize HIV stigmas ‘as social processes that can only be understood in relation to broader notions of power and domination.’
More recent theoretical work has emphasized the importance of intersectional approaches for understanding the production of stigma in the context of HIV [7, 11, 30, 32, 33, 50, 53]. Intersectionality theory is grounded in the reality that people exist at a juncture of race, gender, class, sexual orientation and other identities, with a multiplicity of potential social positionings that reflect different distances from social power and regard based on these identities [25, 31]. In other words, the experience of living with HIV never occurs in a vacuum; the extent to which stigma is internalized may be alternately heightened or ameliorated based on other identities and how those identities are valued or devalued in a given community or society. An intersectional approach opens analytical space for voices that would be consigned even further to the margins when a positive HIV-status or any other identity is assumed to be universally experienced. In line with this, evidence suggests that internalized HIV-related stigma operates within mutually reinforcing relationships with other marginalized social statuses based on sex, age, gender identity and expression, racialisation, sexual orientation and behaviors, illicit drug or alcohol use, sex work, criminalization and incarceration ; [52, 36, 68]. A recent trial found that a financial savings promotion and psychological support intervention for sex workers in India resulted in significant reductions in internalized stigma related to sex work, as well as improvements in self-worth, health seeking behaviours and long-term savings . However the adoption of the intersectionality framework for the study of internalised HIV-related stigma is still in nascent stages.
The questions an intersectional lens opens for exploration are rich: does belonging to a dominant group in any of these identities ameliorate or intensify the experience of internalized HIV stigma? Does lived experience responding to racism and sexism [51, 53], for example, provide translatable lessons for communities to maintain self worth and reject devaluing social messages associated with HIV? And if so, is this similar across sexual practices, drug use and other behaviours commonly associated with HIV? More empirical research is needed to better understand the most effective types of interventions to reduce the simultaneous effects of sexism, racism, ageism, ableism and other forms of ostracism on individuals’ wellbeing and internalized HIV stigma. Could, for example, social and structural interventions to increase social justice, such as for greater political voice or economic power, along one dimension of social hierarchies have positive spill over effects on internalized stigma across multiple dimensions? Gendered approaches that respond to specific needs of communities with intersecting vulnerabilities (e.g. women who inject drugs, transgender women sex workers, etc.) are also needed.
From an ethics point of view, it could be argued that individual-level interventions rely on a victim-centric approach to a public health problem . Individual-level interventions situate the onus of change on the stigmatized. Such interventions may be able to reduce internalized HIV stigma at the individual level [78, 83], but they are not equipped to affect its sources at the social level [1, 15, 62, 79]. Hence, ‘the burden of adjustment falls on stigmatized individuals – with their responses conceptualized in terms of their individual abilities to adapt to the stress of stigma’ .
Post-individualistic approaches to internalized HIV stigma must be explored due to the high opportunity cost associated with restricting programming and research to small-scale individual-level interventions. HIV epidemiology has already shifted from emergency HIV prevention that centred around individuals to more long-term, comprehensive, and strategic programming, also known as ‘combination prevention’ . Recent reductions in funding to combat the HIV epidemic provide additional impetus to implement interventions that simultaneously address multiple needs and can be rolled out on a large scale. Some structural interventions, such as those aiming to tackle poverty and food insecurity, have the potential to simultaneously reduce internalized HIV stigma, avert new HIV and sexually transmitted infections and uphold the human rights of populations disproportionately affected by HIV [21, 27, 54, 57, 62, 73–76]. But the implementation of socio-structural interventions is a lengthy, painstaking process, often involving struggle, consensus building, and conflict resolution. Such interventions should complement, rather than replace, the shorter-term small-scale interventions against internalized HIV stigma, which can provide important support for people living with HIV and produce more immediate positive outcomes [78, 83].
At the same time, adverse social and structural forces continue to impede both the delivery and the effectiveness of existing individual-level interventions. In this respect, we have a lot to learn from HIV prevention efforts over the past three decades. Efficacious HIV prevention tools such as condoms, lubricants, and provision of sterile injecting equipment have existed since the onset of the epidemic. Prevention of vertical transmision (PVT) through ART was shown to be possible in 1994. Yet, the scale up of these evidence-based strategies has often been hampered by social and structural determinants: inequality, discrimination and punitive policies have continued to compromise HIV prevention, treatment and care. As a result, while progress has been made globally at slowing the epidemic’s progression, HIV infections continue to rise particularly among the most marginalized populations in under-resourced settings, including young women, sex workers, transgender people, people who use drugs, men who have sex with men, and migrants . Despite medical advances, the end of AIDS will not be feasible without addressing the structural and social obstacles faced by communities most affected by HIV, who also bear the brunt of stigma and discrimination [3, 4, 71]. Similar stagnation in outcomes can be expected for internalized stigma interventions that disregard the broader socio-structural context.
Emerging evidence suggests that socio-structural interventions that successfully challenge HIV transmission risk and AIDS progression also hold promise for combatting internalized HIV stigma. For example, a prospective cohort study in Uganda found that access to anti-retroviral treatment reduced internalized HIV stigma over time [74, 75]. Another prospective impact evaluation of a 12-month food assistance intervention among 904 patients living with HIV in Uganda found that the program substantially reduced internalized stigma . Qualitative data from Kenya also suggest that access to a livelihood intervention increased people’s confidence, self-esteem and productivity, and reduced feelings of HIV-related shame .
Including measures of internalised stigma as an additional outcome measure in other relevant socio-structural intervention studies could empirically test whether acting on social and structural determinants is associated with reductions in internalised stigma.
But without a precedent, it is unclear how interventions that are administered at the national or community level for people who are both HIV-positive and negative would measure their effects on internalised HIV stigma. Careful consideration of people’s privacy and confidentiality is warranted in the design and implementation of such evaluations. An HIV stigma measurement recently developed with and for adolescents living with HIV in South Africa offers two options – one with HIV-specific wording used for adolescents who self-disclose their HIV-positive status to the interviewer, and another with general mentions of health issues rather than HIV for status-unknown adolescents . Tools such as this one may help researchers study HIV stigma in non-clinical settings whilst avoiding inadvertent disclosure of people’s HIV status.
There has been an absence of a shared, sound theoretical understanding of internalized HIV stigma as a manifestation of social and structural factors. This commentary sought to stimulate a dialogue to remedy this absence. More than a decade ago, Parker and Aggleton  noted that a major limitation of studies on HIV-related stigma is that they fail to embed hypotheses or analyses within theoretical frameworks. Our analysis suggests that theoretically grounded intervention and epidemiological research on internalized HIV stigma is urgently needed. The reasons for why theoretical frameworks have largely gone missing from much research on HIV stigma are not known. However this situation might have arisen from the urgency researchers may feel to rapidly respond with interventions to address a social justice issue that effectively denies HIV care for marginalized groups of people. Unfortunately, as a result, critical gaps in basic knowledge around internalized HIV stigma and its manifestations and effects across groups of people living with HIV remain. The high prevalence of internalized HIV stigma and its epidemiological consequences warrant that these gaps be addressed. Future research should take into account ethical considerations, the evolution of stigma theory over the past five decades, intersectionality and opportunity cost when framing hypotheses, developing theories of change, and designing and evaluating interventions.
Social and structural interventions may help reduce internalised HIV stigma, but caution is warranted in such endeavours, as social and structural determinants are not static. Like stigma itself, they evolve over time and are culturally embedded. Therefore the relationship between broader social and structural determinants of HIV risk and internalized stigma may not be linear. Further, social and structural interventions arise from and exist within current interlocking systems of subordination and are subject to pressures to maintain existing power hierarchies. As a result, rigorous attention should be paid to ways in which interventions to reduce HIV vulnerability and improve HIV-related quality of life might simultaneously increase subordination of other identities. Longitudinal research is needed to unpack these complex relationships, evaluate long-term (and potentially harmful) outcomes of structural interventions and further advance theory.
It is essential to note that this article does not discount the role of psychological factors in the production and maintenance of internalized HIV stigma. Rather, it highlights the need to expand on current psychological frameworks, and integrate knowledge on the broader, contextual underpinnings of stigma. Even if internalized HIV stigma is an ‘internal’ psychological phenomenon, there is an urgent need to study how environmental factors affect it and how they may impede the delivery of individual-level interventions. Mental health is public health. Together, the extensive literature on the social and structural predictors of mental health and emerging evidence on internalized HIV stigma [35, 62, 79] clearly indicate that it’s not ‘all in your head’.
Anne Stangl received support for writing from the STRIVE research program consortium funded by UKaid from the Department for International Development.
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MP conceptualized the paper and led manuscript write up. LS and AS contributed to the conceptualization of the paper, write up and interpretation of findings. All authors read and approved the final manuscript.
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- Abadía-Barrero CE, Castro A. Experiences of stigma and access to HAART in children and adolescents living with HIV/AIDS in Brazil. Soc Sci Med (1982). 2006;62(5):1219–28. https://doi.org/10.1016/j.socscimed.2005.07.006.Google Scholar
- Adams Tufts K. An intersectional perspective on stigma as a barrier to effective HIV self-management and treatment for HIVinfected African American women. HSOA J AIDS Clin Res STDs. 2015;(2):139–50.Google Scholar
- Anderson S, Shannon K, Li J, Lee Y, Chettiar J, Goldenberg S, Krüsi A. Condoms and sexual health education as evidence : impact of criminalization of in-call venues and managers on migrant sex workers access to HIV / STI prevention in a Canadian setting. BMC Int Health Hum Rights. 2016;16(30):1–10. https://doi.org/10.1186/s12914-016-0104-0.Google Scholar
- Ankomah A, Ganle JK, Lartey MY, Kwara A, Nortey PA, Perry M, et al. ART access-related barriers faced by HIV-positive persons linked to care in southern Ghana : a mixed method study. BMC Infect Dis. 2016;16(738):1–12. https://doi.org/10.1186/s12879-016-2075-0.Google Scholar
- Auerbach JD, Parkhurst JO, Cáceres CF, Auerbach JD, Parkhurst JO, Cáceres CF. Addressing social drivers of HIV/ AIDS for the long-term response: conceptual and methodological considerations. Glob Public Health. 2011;6(3):293–309. https://doi.org/10.1080/17441692.2011.594451.Google Scholar
- Bourne A, Hickson F, Keogh P, Reid D, Weatherburn P. Problems with sex among gay and bisexual men with diagnosed HIV in the United Kingdom. BMC Public Health. 2012;12(1):1. https://doi.org/10.1186/1471-2458-12-916.Google Scholar
- Bowleg L, Teti M, Malebranche DJ, Tschann JM. It’s an uphill battle everyday: intersectionality, low-income black heterosexual men, and implications for HIV prevention research and interventions. Psychol Men Masculinity. 2013;14(1):25–34.Google Scholar
- Boyes M, Cluver L. Relationships among HIV/AIDS orphanhood, stigma, and symptoms of anxiety and depression in South African youth: a longitudinal investigation using a path analysis framework. Clin Psychol Sci. 2013;1(3):323–30.Google Scholar
- Boyes ME, Bowes L, Cluver LD, Ward CL, Badcock NA. Bullying victimisation, internalising symptoms , and conduct problems in south African children and adolescents: a longitudinal investigation. J Abnorm Child Psychol. 2014;42:1313–24. https://doi.org/10.1007/s10802-014-9888-3.PubMedGoogle Scholar
- Boyes ME, Mason SJ, Cluver LD. Validation of a brief stigma-by-association scale for use with HIV/AIDS-affected youth in South Africa. AIDS Care. 2013;25(2):215–22 Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/22774842.PubMedGoogle Scholar
- Bredström A. Intersectionality: a challenge for feminist HIV/AIDS research? Eur J Women’s Stud. 2006;13(3):229–43.Google Scholar
- Bronfenbrenner U. The ecology of human development: experiments by nature and design. Cambridge: Harvard University Press; 1979.Google Scholar
- Buchter RB, Messer M. Interventions for reducing self-stigma in people with mental illnesses: a systematic review of randomized controlled trials. Psycho Soc Med. 2017;15(1612–3174).Google Scholar
- Campbell C, Deacon H. Unravelling the contexts of stigma: from internalisation to resistance to change. J Community Appl Soc Psychol. 2007;16(6):411–7.Google Scholar
- Castro A, Farmer P. Understanding and addressing AIDS-related stigma: from anthropological theory to clinical practice in Haiti. Am J Public Health. 2005;95(1):53–9. https://doi.org/10.2105/AJPH.2003.028563.PubMedGoogle Scholar
- Chambers LA, Rueda S, Baker DN, Wilson MG, Deutsch R, Raeifar E. Stigma , HIV and health : a qualitative synthesis. BMC Public Health. 2015;15(848). https://doi.org/10.1186/s12889-015-2197-0.
- Chan BT, Tsai AC, Siedner MJ. HIV treatment scale-up and HIV-related stigma in Sub-Saharan Africa: a longitudinal cross-country analysis. Am J Public Health. 2015;105(8):1581–7. https://doi.org/10.2105/AJPH.2015.302716.PubMedGoogle Scholar
- Chauncey RL. Comment on “the labelling theory of mental illness”. Am Sociol Rev. 1975;40(2):248–52.Google Scholar
- Chen ESM, Chang WC, Hui CLM, Chan SKW, Lee EHM, Chen EYH. Self-stigma and affiliate stigma in first-episode psychosis patients and their caregivers. Soc Psychiatry Psychiatr Epidemiol. 2016;51(9):1225–31.PubMedGoogle Scholar
- Chen LP, Murad MH, Paras ML, Colbenson KM, Sattler AL, Goranson EN, et al. Sexual abuse and lifetime diagnosis of psychiatric disorders: systematic review and meta-analysis. Mayo Clin Proc. 2010;85(7):618–29. https://doi.org/10.4065/mcp.2009.0583.PubMedGoogle Scholar
- Cluver L, Boyes M, Orkin M, Pantelic M, Molwena T, Sherr L. Child-focused state cash transfers and adolescent risk of HIV infection in South Africa: a propensity-score-matched case-control study. Lancet Glob Health. 2013;1(6):e362–70. https://doi.org/10.1016/S2214-109X(13)70115-3.PubMedGoogle Scholar
- Cluver LD, Gardner F, Operario D. Effects of stigma on the mental health of adolescents orphaned by AIDS. J Adolesc Health. 2008;42(4):410–7 Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/18346667.PubMedGoogle Scholar
- Commission on Social Determinants of Health (CSDH). Closing the gap in a generation: health equity through action on the social determinants of health. Final report of the commission on social determinants of health. Geneva: World Health Organisation; 2008.Google Scholar
- Corrigan PW, Rao D. On the self-stigma of mental illness: stages, disclosure and strategies for change. Can J Psychiatr. 2012;57(8):464–9.Google Scholar
- Crenshaw K. Demarginalizing the intersection of race and sex: a black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics, University of Chicago Legal Forum. 1989:(1). Article 8. https://chicagounbound.uchicago.edu/cgi/viewcontent.cgi?article=1052&context=uclf.
- Cuca YP, Onono M, Bukusi E, Turan JM. Factors associated with pregnant women’s anticipations and experiences of HIV-related stigma in rural Kenya. AIDS Care. 2012;24(9):1173–80. https://doi.org/10.1080/09540121.2012.699669.PubMedGoogle Scholar
- DeBeck K, Cheng T, Montaner JS, Beyrer C, Elliott R, Sherman S, et al. HIV and the criminalisation of drug use among people who inject drugs: a systematic review. Lancet. 2017;4(8):e357–74.PubMedGoogle Scholar
- Derlega V, Winstead B, Greene K, Serovich J, Elwood W. Reasons for HIV disclosure/nondisclosure in close relationships: testing a model of HIV-disclosure decision making. J Soc Clin Psychol. 2004;23(6):747–67.Google Scholar
- Dovidio JF, Major B, Crocker J. Stigma: introduction and overview. In: Heatherton TF, Robert E, Kleck MRH, Hull JG, editors. The social psychology of stigma. New York: The Guilford Press; 2000.Google Scholar
- Doyal L. Challenges in researching life with HIV/AIDS: an intersectional analysis of black African migrants in London. Cult Health Sex. 2009;11(2):173–88.Google Scholar
- Dworkin SL. Who is epidemiologically fathomable in the HIV/AIDS epidemic? Gender, sexuality, and intersectionality in public health. Cult Health Sex. 2005;7(6):615–23.Google Scholar
- Earnshaw VA, Smith LR, Chaudoir SR, Amico KR, Copenhaver MM. HIV stigma mechanisms and well-being among PLWH: a test of the HIV stigma framework. AIDS Behav. 2013b;17(5):1785–95. https://doi.org/10.1007/s10461-013-0437-9.PubMedGoogle Scholar
- Earnshaw VA, Smith LR, Cunningham CO, Copenhaver MM. Intersectionality of internalized HIV stigma and internalized substance use stigma: implications for depressive symptoms. J Health Psychol. 2013a;20(8):1083–9. https://doi.org/10.1177/1359105313507964.Intersectionality.PubMedGoogle Scholar
- Earnshaw VA, Smith LR, Shuper PA, Fisher WA, Cornman DH, Fisher JD, et al. HIV stigma and unprotected sex among PLWH in KwaZulu-Natal , South Africa : a longitudinal exploration of mediating mechanisms. AIDS Care. 2014;26(12):1506–13. https://doi.org/10.1080/09540121.2014.938015.PubMedGoogle Scholar
- Fazeli P, Turan J, Budhwani H, Smith W, Raper J, Mugavero M, Turan B. Moment-to-moment within-person associations between acts of discrimination and internalized stigma in people living with HIV: an experience sampling study. Stigma Health. 2017;2(3):216–28. https://doi.org/10.1037/sah0000051.PubMedGoogle Scholar
- Ghosal S, Jana S, Mani A, Mitra S, Roy S, Ghosal S, Roy S. Sex Workers, Self-Image and Stigma: Evidence from Kolkata Brothels (No. 302); 2016.Google Scholar
- Girma E, Möller-leimkühler AM, Dehning S, Mueller N, Tesfaye M, Froeschl G. Self-stigma among caregivers of people with mental illness: Toward caregivers’ empowerment. J Multidiscip Healthc. 2014. https://doi.org/10.2147/JMDH.S57259.
- Goffman E. Stigma: Notes on the Management of Spoiled Identity. New Jersey: Prentice-Hall Inc.; 1963.Google Scholar
- Gove WR. The labelling theory of mental illness: a reply to Scheff. Am Sociol Rev. 1975;40(2):242–8.Google Scholar
- Hillberg T, Hamilton-Giachritsis C, Dixon L. Review of meta-analyses on the association between child sexual abuse and adult mental health difficulties: a systematic approach. Trauma Violence Abuse. 2011;12(1):38–49. https://doi.org/10.1177/1524838010386812.PubMedGoogle Scholar
- Holzemer WL, Uys LR, Chirwa ML, Greeff M, Makoae LN, Kohi TW, et al. Validation of the HIV/AIDS stigma instrument - PLWA (HASI-P). AIDS Care. 2007;19(8):1002–12. https://doi.org/10.1080/09540120701245999.PubMedGoogle Scholar
- Horwitz RH, Tsai AC, Maling S, Bajunirwe F, Haberer JE, Emenyonu N, et al. No association found between traditional healer use and delayed antiretroviral initiation in rural Uganda. AIDS Behav. 2013;17(1):260–5.PubMedGoogle Scholar
- Katz IT, Ryu AE, Onuegbu AG, Psaros C, Weiser SD, Bangsberg DR, Tsai AC. Impact of HIV-related stigma on treatment adherence: systematic review and meta-synthesis. J Int AIDS Soc. 2013;16(3 Suppl 2):18640 Retrieved from http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=3833107&tool=pmcentrez&rendertype=abstract.PubMedGoogle Scholar
- Lee RS, Kochman A, Sikkema KJ. Internalized stigma among people living with HIV-AIDS. AIDS Behav. 2002;6(4):309–19.Google Scholar
- Link BG, Cullen FT, Struening E, Shrout PE, Bruce P. A modified labeling theory approach to mental disorders: an empirical assessment. Am Sociol Rev. 1989b;54(3):400–23.Google Scholar
- Link BG, Cullen FT, Struening E, Shrout PE, Dohrenwend P. A modified labeling theory approach to mental disorders: an empirical assessment. Am Sociol Rev. 1989a;54(3):400–23.Google Scholar
- Link BG, Mirotznik J, Cullen FT. The effectiveness of stigma coping orientations: can negative consequences of mental illness labeling be Avoided ? J Health Soc Behav. 1991;32(3):302–20.PubMedGoogle Scholar
- Link BG, Phelan JC. Labeling and stigma. In: Aneshensel CS, Phelan JC, Bierman A, editors. Handbook of the sociology of mental health. Boston: Springer US; 1999. https://doi.org/10.1007/0-387-36223-1.Google Scholar
- Link BG, Phelan JC. Stigma and its public health implications. Lancet. 2006;367(9509):528–9. https://doi.org/10.1016/S0140-6736(06)68184-1.PubMedGoogle Scholar
- Logie CH, James L, Tharao W, Loutfy MR. HIV, gender, race, sexual orientation, and sex work: a qualitative study of intersectional stigma experienced by HIV-positive women in Ontario, Canada. PLoS Med. 2011;8(11). https://doi.org/10.1371/journal.pmed.1001124.
- Logie C, James L, Tharao W, Loutfy M. Associations between HIV-related stigma, racial discrimination, gender discrimination, and depression among HIV-positive African, Caribbean, and black women in Ontario, Canada. AIDS Patient Care STDs. 2013;27(2):114–22. https://doi.org/10.1089/apc.2012.0296.PubMedGoogle Scholar
- Logie CH, Jenkinson JIR, Earnshaw V, Tharao W, Loutfy MR. A Structural Equation Model of HIV-Related Stigma, Racial Discrimination, Housing Insecurity and Wellbeing among African and Caribbean Black Women Living with HIV in Ontario, Canada. Faragher EB, editor. PLoS One [Internet]. 2016;11(9):e0162826. [cited 2019] Available from: https://dx.plos.org/10.1371/journal.pone.0162826
- Loutfy MR, Logie CH, Zhang Y, Blitz SL, Margolese SL, Tharao WE, et al. Gender and ethnicity differences in HIV-related stigma experienced by people living with HIV in Ontario, Canada. PLoS One. 2012;7(12):38–40. https://doi.org/10.1371/journal.pone.0048168.Google Scholar
- Maluccio JA, Wu F, Rokon RB, Rawat R, Wu F. Assessing the impact of food assistance on stigma among people living with HIV in Uganda using the HIV / AIDS stigma. AIDS Behav. 2016;21(3):766–82. https://doi.org/10.1007/s10461-016-1476-9.Google Scholar
- Maniglio R. The impact of child sexual abuse on health: a systematic review of reviews. Clin Psychol Rev. 2009;29(7):647–57. https://doi.org/10.1016/j.cpr.2009.08.003.PubMedGoogle Scholar
- Mcleroy KR, Bibeau D, Steckler A, Glanz K. An ecological perspective on health promotion programs. Health Educ Q. 1988;15(4):351–77.Google Scholar
- Millett GA, Jeffries WL, Peterson JL, Malebranche DJ, Lane T, Flores SA, et al. Common roots: a contextual review of HIV epidemics in black men who have sex with men across the African diaspora. Lancet. 2012;380(9839):411–23. https://doi.org/10.1016/S0140-6736(12)60722-3.PubMedGoogle Scholar
- NAPWA. The People Living with HIV Stigma Index. Germiston: NAPWA-SA, The National Association of People living with HIV and AIDS in South Africa; 2012.Google Scholar
- Neuman M, Obermeyer CM. Experiences of stigma, discrimination, care and support among people living with HIV: a four country study. AIDS Behav. 2013;17(5):1796–808. https://doi.org/10.1007/s10461-013-0432-1.PubMedGoogle Scholar
- Norman RE, Byambaa M, De R, Butchart A, Scott J, Vos T. The long-term health consequences of child physical abuse, emotional abuse, and neglect: a systematic review and meta-analysis. PLoS Med. 2012;9(11):e1001349. https://doi.org/10.1371/journal.pmed.1001349.PubMedGoogle Scholar
- Pacheco JTB, Irigaray TQ, Memoriam BW. Childhood maltreatment and psychological adjustment: a systematic review. Psicologia: Reflexão E Crítica. 2014;27(4):815–24. (In, Nunes, M. L. T., & Argimon, I. I. D. L.). https://doi.org/10.1590/1678-7153.201427422.Google Scholar
- Pantelic M, Boyes M, Cluver L, Meinck F. HIV, violence, blame and shame : pathways of risk to internalized HIV stigma among south African adolescents living with HIV. J Int AIDS Soc. 2017;20(1):1–9. https://doi.org/10.7448/IAS.20.1.21771.Google Scholar
- Pantelic M, Boyes M, Cluver L, Thabeng M. “They say HIV is a punishment from god or from ancestors”: cross-cultural adaptation and psychometric assessment of an HIV stigma scale for south African adolescents living with HIV (ALHIV-SS). Child Indic Res. 2016. https://doi.org/10.1007/s12187-016-9428-5.
- Pantelic M, Shenderovich Y, Cluver L, Boyes M. Predictors of internalised HIV-related stigma: a systematic review of studies in sub-Saharan Africa. Health Psychol Rev. 2015;9(4):469–90. https://doi.org/10.1080/17437199.2014.996243.PubMedGoogle Scholar
- Parker R, Aggleton P. HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Soc Sci Med. 2003;57(1):13–24 Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/12753813.PubMedGoogle Scholar
- Petracci M, Romeo M. Índice de estigma en personas que viven con VIH Argentina. Buenos Aires: Fundación Huésped; 2011.Google Scholar
- Pisareva A. Research Report: People Living with HIV Stigma Index. Moscow: ROO “Community of PLWHIV”; 2010.Google Scholar
- Sangaramoorthy T, Jamison A, Dyer T. Intersectional stigma among midlife and older black women living with HIV intersectional stigma among midlife and older black women. Cult Health Sex. 2017;1058(November):1–15. https://doi.org/10.1080/13691058.2017.1312530.Google Scholar
- Scheff TJ. Being mentally ill: a sociological theory. Chicago: Aldine; 1966.Google Scholar
- Scheff TJ. The labelling theory of mental illness. Am Sociol Rev. 1974;39(3):444–52.PubMedGoogle Scholar
- Schwartz S, Papworth E, Thiam-Niangoin M, Abo K, Drame F, Diouf D, et al. An urgent need for integration of family planning services into HIV care: the high burden of unplanned pregnancy, termination of pregnancy, and limited contraception use among female sex workers in cote d’Ivoire. J Acquir Immune Defic Syndr (1999). 2015;68(Suppl 2):S91–8 Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/25723996.Google Scholar
- Stangl AL, Lloyd JK, Brady LM, Holland CE, Baral S. A systematic review of interventions to reduce HIV-related stigma and discrimination from 2002 to 2013 : how far have we come ? J Int AIDS Soc. 2013;16.Google Scholar
- Tsai AC. Socioeconomic gradients in internalized stigma among 4, 314 persons with HIV in sub-Saharan Africa. AIDS Behav. 2015;19:270–82. https://doi.org/10.1007/s10461-014-0993-7.PubMedGoogle Scholar
- Tsai AC, Bangsberg DR, Bwana M, Haberer JE, Frongillo EA, Muzoora C, et al. How does antiretroviral treatment attenuate the stigma of HIV? Evidence from a cohort study in rural Uganda. AIDS Behav. 2013a;17(8):2725–31.PubMedGoogle Scholar
- Tsai AC, Bangsberg DR, Weiser SD. Harnessing poverty alleviation to reduce the stigma of HIV in sub-Saharan Africa. PLoS Med. 2013b;10(11):e1001557. https://doi.org/10.1371/journal.pmed.1001557.PubMedGoogle Scholar
- Tsai AC, Hatcher AM, Bukusi EA, Weke E, Lemus L, Shari H, Kodish S. A livelihood intervention to reduce the stigma of HIV in rural Kenya: longitudinal qualitative study. AIDS Behav. 2017;21:248–60. https://doi.org/10.1007/s10461-015-1285-6.PubMedGoogle Scholar
- Tsai AC, Weiser SD, Steward WT, Mukiibi NFB, Kawuma A, Kembabazi A, et al. Evidence for the reliability and validity of the internalized AIDS-related stigma scale in rural Uganda. AIDS Behav. 2012;17(1):427–33. https://doi.org/10.1007/s10461-012-0281-3.Google Scholar
- Tshabalala J, Visser M. Developing a cognitive Behavioural therapy model to assist women to Deal with HIV and stigma. S Afr J Psychol. 2011;41(1):17–28. https://doi.org/10.1177/008124631104100103.Google Scholar
- Turan B, Budhwani H, Fazeli PL, Browning WR, Raper JL, Mugavero MJ, et al. How does stigma affect people living with HIV? The mediating roles of internalized and anticipated HIV stigma in the effects of perceived community stigma on health and psychosocial outcomes. AIDS Behav. 2017;21(1):283–91. https://doi.org/10.1007/s10461-016-1451-5.How.PubMedGoogle Scholar
- UNAIDS. (2013). Global report: UNAIDS report on the global AIDS epidemic 2013.Google Scholar
- UNAIDS. Global AIDS update. Geneva: UNAIDS; 2016a.Google Scholar
- UNAIDS. Prevention gap report. Geneva: UNAIDS; 2016b.Google Scholar
- Uys L, Chirwa M, Kohi T, Greeff M, Naidoo J, Makoae L, et al. Evaluation of a health setting-based stigma intervention in five African countries. AIDS Patient Care STDs. 2009;23(12):1059–66.PubMedGoogle Scholar
- Yi S, Chhoun P, Suong S, Thin K, Brody C. AIDS-related stigma and mental disorders among people living with HIV: a cross- sectional study in Cambodia. PLoS One. 2015;10(3):1–16. https://doi.org/10.1371/journal.pone.0121461.Google Scholar