A working definition of HIV-related stigma, formed from the distinct categories of HIV-related stigma emerging from the data from the integrative literature review, is: HIV-related stigma is the collection of adverse attitudes, beliefs and actions of others against people living with or affected by HIV, which may result in deleterious internalized beliefs or actions taken by persons living with or affected by HIV infection that may result in negative health outcomes.
A regrouping of these themes into a more inclusive definition of HIV-related stigma consists of two categories (). External HIV-related stigma, conceived as the attitudes or actions expressed toward people living with HIV, includes rejection, avoidance, intolerance, stereotyping, judgmental attitudes, discrimination, disrespect, physical violence or verbal derision, and a lack of HIV transmission knowledge leading to unfounded fears of infection. Internal HIV-related stigma includes the feelings, beliefs or actions within or instigated by the person living with HIV/AIDS, such as shame, self-blame, secrecy related to fear of disclosure, self-isolation, despair, and great concern over the thoughts and attitudes of others.
External, Internal, and Consequences of HIV-Related Stigma
HIV-related stigma may result in a number of negative health outcomes for people living with HIV infection. These negative health outcomes include mental health issues, medication adherence issues, accession of healthcare services, employment issues, housing issues, and physical violence and verbal abuse.
In terms of mental health, HIV-related stigma results in decreased social support (Dowshen et al., 2009
), rejection (Block, 2009
), despair (Buseh & Stevens, 2006
), loneliness (Ware et al., 2006
), decreased self-esteem (Dowshen et al., 2009
), and isolation (Sengupta et al., 2010
). These mental health consequences of HIV-related stigma further impact available support and serve as a source of additional psychosocial stress for people living with HIV infection.
HIV-related stigma impacts adherence to antiretroviral therapy. When stigma is experienced, people with HIV infection often fail to adhere to prescribed medication regimens. This lack of adherence with antiretroviral medications is often related to the need to conceal the diagnosis of HIV infection from others (Brion & Menke, 2008
; Courtenay-Quirk et al., 2006
; Ware et al., 2006
). Without medical care and antiretroviral therapy, people with HIV infection are at risk for morbidity, mortality, and decreased quality of life (Simoni et al., 2005
An additional component that is influenced by HIV-related stigma is adherence to appointments for HIV-related medical care. Medical care for HIV infection requires regularly scheduled appointments not only with HIV providers, but other specialists as needed to manage this chronic illness. People with HIV infection who are experiencing stigma often neglect to adhere to medical appointments that because of the need to conceal their diagnosis from others living in their households (Kempf et al., 2010
; Wingood et al., 2007
; Yannessa et al., 2008
). Failure to adhere to medical appointments has the potential to further impact the physical health of those living with HIV infection (Wingood et al., 2007
HIV-related stigma may impact employment. This includes, but is not limited to the fear of losing employment if employers become aware of the person’s HIV status (Wingood et al., 2007
). Losing employment could impact not only the person’s socioeconomic status, but may have an impact on insurance or funding issues related to HIV-related medical care.
Housing issues may result from HIV-related stigma. People with HIV infection often perceive that they may be forced to relocate if landlords or housing communities become aware of their serostatus (Wingood et al., 2007
). In addition, people with HIV infection with clinical AIDS may be eligible for government-assisted housing, but often forego this benefit in an attempt to conceal their diagnosis (Ware et al., 2006
The last consequence of HIV-related stigma is the risk of violence and/or verbal abuse. People with HIV infection may be at risk for or may have experienced physical violence (Sengupta et al., 2010
). Verbal insults and verbal abuse directed toward people with HIV infection or their caregivers may also occur (Bogart et al., 2008
; Poindexter, 2005
). Both forms of abuse have the potential to further impact available psychosocial support and the mental health of people with HIV infection and their caregivers.
People living with HIV infection are likely to experience HIV-related stigma at some point in the disease process (Berger, 1995
; Herek, 2002
). HIV-related stigma has been studied with various groups of HIV-infected individuals. A synthesis of all studies included in this integrative review of the literature revealed that because HIV-related stigma is a universal phenomenon for people infected with HIV, further research with HIV-related stigma should focus on this concept with the entire population of HIV-infected individuals rather than stratifying the study of HIV-related stigma by primarily studying the concept with various subpopulations with HIV infection. In order for this concept to be further developed, more research is needed that examines the commonalities across subgroups of people with HIV, versus comparing the concept of HIV-related stigma among the subgroups.
Another salient finding from the integrative review of the literature on HIV-related stigma involves the available instruments to measure HIV-related stigma. A number of instruments have been developed to measure this concept. Despite the fact that these instruments have been developed and tested, few instruments have been extensively utilized. It appears that HIV-related stigma has been studied more with qualitative methods than quantitative methods. A few of the studies reviewed used mixed methods to study this concept. Because a number of instruments are available to measure HIV-related stigma, little research has been attempted to compare or to correlate these instruments. This would strengthen each individual instrument and would lead to the development of a more comprehensive measurement of HIV-related stigma. The most important piece of information that was noted in the integrative review of the literature involves the health outcomes of people with HIV infection that experience HIV-related stigma. A few studies have noted the influence of HIV-related stigma on adherence to ART (Brion & Menke, 2008
; Konkle-Parker et al., 2008
; Wolitski et al., 2009
). No research is available that examines the influence of HIV-related stigma on other health outcomes, including mental health indicators such as self-esteem, depression, and anxiety. With the likelihood that people with HIV infection will experience HIV-related stigma during their lifetimes (Berger, 1995
; Herek, 2002
), HIV-related stigma probably has an impact on mental health, although this cannot be known for certain as research to document this relationship has not been conducted.