Paper: Stigma in the HIV/AIDS Epidemic: A Review of the literature and recommendation for the way forward

Stigma in the HIV/AIDS Epidemic: A Review of the literature and recommendation for the way forward

23 November 2017

My summary:

HIV testing is believed as a door to do further prevention and treatment for HIV positive persons. Then followed by ARV treatment to increase their quality life-known as a virtuous social cycle. Opening their HIV status to their close family would gain further social support. Unfortunately, in fact, accessing HIV status is labelled as ‘high risk group of HIV persons’, like female sex workers, MSM, IDUs and etc, furthermore, after knowing their HIV status, not to disclosure their HIV status at least to their partner is very challenging, particularly for women, to engage domestic violence. In addition, to be consistent in accessing ARV treatment need more efforts to open their HIV status at least to their partners or close family. However, opening their HIV status is another challenge to HIV persons themselves. ‘self-imposed discrimination, individual discrimination and structural/institutional discrimination exacerbate the condition of PLHA.

PLHA dealt with some dilemma in their life to access any prevention and treatment programs related to HIV. Unfortunately, most of the programs have limited programs related to stigma reduction, particularly at institutional/structural level. Therefore, addressing the importance of stigma reduction is necessary, not only at individual level, but also at social and cultural level, such as engaging religious leaders, key persons in community to ‘care’ with PLHA and to support them, because they have rights to be a healthy person and to deliver healthy baby. Individual stigma reduction only focus on “information dissemination, empathy induction, counseling, and cognitive behavioral therapy, while further efforts are needed to address wider population who create stigmatizing and discriminatory conditions, therefore, religious leaders, the judiciary, and the legislative arenas.

Note:

Self-imposed Discrimination "mendiskriminasi diri sendiri-->mengakibatkan ODHA mungkin tidak datang ke pengobatan terdekat karena "merasa" pelayanan akan menolaknya...

Individual Discrimination--> ODHA didiskriminasi oleh orang lain...

Structural/Institutional Discrimination--> ODHA dimutasi atau dipecat karena membutuhkan pengobatan secara teratur...

Suatu program berkaitan dengan HIV diharapkan mempertimbangkan rumitnya kehidupan mereka, terutama yang belum mandiri dan 'perempuan'

Reference

Mahajan, A. P., Sayles, J. N., Patel, V. A., Remien, R. H., Ortiz, D., Szekeres, G., & Coates, T. J. (2008). Stigma in the HIV/AIDS epidemic: a review of the literature and recommendations for the way forward. AIDS (London, England), 22(Suppl 2), S67.

Abstract

Although stigma is considered a major barrier to effective response to the HIV/AIDS epidemic, stigma reduction efforts are relegated to the bottom of AIDS program priorities. The complexity of HIV/AIDS related to stigma is often cited as a primary reason for the limited response to this pervasive phenomenon. In this paper, we systematically review the scientific literature on HIV/AIDS related stigma to document the current state of research, identify gaps in the available evidence, and highlight promising strategies to address stigma. We focus on the following key challenges: defining, measuring and reducing HIV/AIDS related to stigma as well as assessing the impact of stigma on the effectiveness of HIV prevention and treatment programs. Based on the literature, we conclude by offering a set of recommendations that may represent important next steps in a multifaceted response to stigma in the HIV/AIDS epidemic.

Important direct quotation:

H/A stigma considered a barrier to effective HIV prevention and treatment programs. H/A stigma is blamed for low uptake of and poor adherence to prevention and treatment services. P.7

Discrimination is a consequence of stigma and defined as “when, in the absence of objective justification, a distinction is made against a person that results in that person being treated unfairly and unjustly on the basis of belonging or being perceived to belong, to a particular group. P. 5

Stigmatized groups, including PLHAs, are in this way systematically disadvantaged in a variety of ways including in income, education, housing status, medical treatment and health (8) p. 5

Conceptualizing stigma as a combination of individual and social phenomenon underscores the importance of addressing self-imposed, individual, as well as structural (or institutional) discrimination (8). P.5

Self-imposed discrimination occurs when an individual comes to expect the application of a stereotype to him/herself and out of fear the expectant rejection and resignation, a priori acts as if discrimination has already been imposed (8,18,19). P.5

Individual discrimination refers to more obvious and overt discrimination taking place between two people (8) p.5

Structural discrimination refers to accumulated institutional practices that work to disadvantage stigmatized groups, and can work in the absence of individual prejudice and discrimination (8) p.5

Like in other stigmatized medical conditions, most research and intervention for H/A stigma has targeted self-imposed and some aspects of individual discrimination, largely excluding the structural dimensions of discrimination. –p-5

Bruce link and Jo Phelan offer a broader conceptualization that elucidates both the socio-cognitive and the structural aspects of stigma and the relationship between them. In their conception, stigma exists when the following four interrelated components converge-p-5:

1)    Individuals distinguish and label human differences

2)    Dominant cultural beliefs link labeled persons to undesirable characteristics (or negative stereotypes)

3)    Labeled persons are placed in distinct categories to accomplish some degree of separation of “us” from “them”, and

4)    labeled persons’ experience status loss and discrimination that lead to unequal outcomes.

Stigmatization is entirely contingent on inequalities in social, economic, and political power that enable the four aforementioned components of stigma to unfold

(Link BG, Phelan JC. Conceptualizing stigma. Annu Rev Social 2001:27; 3enam3-85

Given to several stages of HIV disease from the period of infection onwards-first, a transient flu-like syndrome associated with seroconversion that can last a few weeks, followed by an asymptomatic period of at least a few years, followed by a symptomatic period involving opportunistic infections of varying severity-vulnerability to being stigmatized along the Link and Phelan’s continuum of components varies. For example, a PLHA in the asymptomatic period does not exhibit physical manifestations of HIV disease and is thus more difficult to identify as different by society. Even if he is known to be positive, he may still less vulnerable to stigmatization since he is stable capable of working and providing for his family, thereby limiting potential separation and status loss despite being labeled. On the other hand, a PLHA who is late in the course of infection and suffering from wasting syndrome is easily identifiable and increasingly vulnerable to discrimination along Link and Phelan’s continuum. In addition to considering the effect to HIV disease stage on H/A stigma, the individual and social context preceding infection should also be understood. Social forces such as poverty, sexism, racism and others create overlapping ad reinforcing stigmatized conditions that predispose individuals to HIV infection and limits their ability to access diagnostic and treatment services (1). Such force constitute structural violence and victims of such violence are at increased risk of H/A stigma (1)-p.5

Relationship of HIV/AIDS related to Stigma to Prevention & Treatment Programs

Stigma and HIV risk behavior: disclosure HIV status, unsafe sex, engaging high risk behavior, p. 7

Stigma, testing and treatment: delaying HIV test, accessing ARV trigger ‘a virtuous social cycle’-improve their quality of life, after testingàdisclosure, partner violence, and other gender based stigma, adverse effect of stigma and adherence of ARV

Stigma and Prevention of Mother to Child Transmission (PMTCT)..p.8

Pregnant women may avoid participating in PMTCT programs due to fear of stigma, discrimination, and violence, particularly from partners when disclosing their HIV status. Numerous studies have demonstrated that going against community norms of feeding leads to questions about mother’s HIV status, unwanted disclosure, and fear of stigma from partner, family and the community. Interventions aimed at engaging male partners in PMTCT services, such as sending an invitation home with the partner with a direct request that the man attend the clinic with his partner, have been tried with varying success. Community level education about specific PMTCT services, targeting pregnant women, community leaders and people of childbearing age, is critical to improving acceptability of services and diminishing the effects of stigma.

Stigma reduction strategies:

Level	Strategies
Intrapersonal	Counseling, cognitive-behavioral therapy, self-help and support groups, treatment, empowerment
Interpersonal Level	Care and support, home care teams, community-based rehabilitation
Community level	Education (social marketing, mass media), contact with PLHAs
Institutional Level	Training programs, policy development
Governmental/structural level	Legal interventions, right-based approaches

Source: Heijnders M, Van Der Meij S. The fight against stigma: an overview of stigma reduction strategies and interventions. Psychology, Health & Medicine 200:11:353-33

Assessing Impact of H/A Stigma on Programs-the following recommendations emerge from stigma related concerns associated with provider-initiated opt-out HIV testing: 1) promote a supportive social and legal framework to minimize unintended consequences of provider initiated opt-out HIV testing, 2) implement stigma reduction interventions among healthcare provider, and 3) support further research on the relationship between stigma and routine HIV testing. P.12

HIV testing is the primary gateway to both prevention and treatment services p.12

By treating visible signs of disease and enabling PLHA to return to socially and economically productive lives, antiretroviral therapy can trigger a ‘virtuous social cycle’.

Reducing H/A stigma- promote reform of laws and policies that enable stigma and discrimination of men who have sex with men (MSM), injecting drug users (IDUs), commercial sex workers (CSWs) and migrants