Friday, October 25, 2013

Community-level #HIV stigma is a public health threat

Community-level HIV stigma is a public health threat 
Deborah Konkle-Parker, PhD, FNP
 Community-level HIV stigma can have profound effects at both the individual and community levels. Stigma has an important effect on HIV prevention, testing, linkage/retention in care, and medication adherence.1-3  The World Health Organization cites “fear of stigma and discrimination as the main reason why people are reluctant to be tested, to disclose their HIV status or to take antiretroviral drugs.”4-6 HIV carries with it a unique stigma which forces people with HIV to keep their diagnosis a secret in fear of ostracism and discrimination.5-7 In this article, we will look at the need for stigma reduction on the community level and discuss potential strategies to reduce community- level stigma.
Setting of HIV disease in the Deep South  HIV disease is a multi-faceted problem impacted by many social determinants. As we are well aware, HIV is a major health problem in the Deep South and in the Jackson, Baton Rouge and New Orleans metropolitan areas in particular. The Deep South is heavily affected by many chronic diseases including HIV/AIDS.8 It is also heavily impacted by other sexually transmitted infections that propagate the HIV epidemic.9 Demographic factors that contribute to the increased disease rates include higher poverty rates, higher unemployment, lower educational attainment, and lower health insurance coverage compared to other Southern states and to the U.S. in general.3,10-13  Mississippi and Louisiana in particular experience significant health challenges with respect to chronic conditions.  Mississippi ranks first in mortality rates due to cardiovascular disease, 30% higher than the national average, and has the highest prevalence of diabetes and obesity in the nation.14 People living with HIV (PLWH) face even greater challenges, with Mississippi ranking seventh highest in HIV diagnosis and in rate of HIV-related deaths. Mississippi has the highest rate of deaths in the country amongst those living with HIV disease, with Louisiana second in line.15 Moreover, Baton Rouge ranks as the metropolitan area with the highest rate of new AIDS diagnoses in the country, while Jackson ranks third, and both are in the top five metropolitan areas in prevalence of HIV.16 Among males aged 13–24 years, the highest HIV prevalence rate was in Jackson in 2010.17 
Impact of HIV stigma  Mississippi’s health disparities in HIV infection are noticeable, as African Americans are disproportionally affected by HIV when compared to other races. African Americans account for 38% of the state’s population but over 78% of new HIV diagnoses. Incidence rates for African Americans are eight times those of whites. African Americans with HIV disease have the highest number of deaths each year, accounting for nearly 80% of deaths annually.16   Stigma associated with HIV/AIDS appears to be more prevalent among African Americans than other races.6 Stigma also has hindered efforts to reduce rates of HIV infection among African Americans and has been associated with HIV risk behaviors and barriers to testing, especially among gay and bisexual men.18  Local Mississippi research has shown that stigma is an important factor in medication adherence and adherence to clinical care, as well as initial linkage to care after diagnosis.19-21
Addressing stigma on an individual level is not sufficient  The US National HIV/AIDS Strategy consists of several goals: 1) to reduce the number of people who become infected with HIV; 2) to increase access to care and optimize health outcomes for people living with HIV; 3) to reduce HIV-related health disparities; and 4) to achieve a more coordinated national response to the HIV epidemic.  A pervasive community-level barrier to achievement of these goals is HIV stigma. Simply working with individuals living with HIV disease to help them cope with the community-level stigma they experience is insufficient to reduce the barriers that stigma creates. Although there are intrapersonal and interpersonal approaches that can be effective in improving an individual’s coping with the stigma associated with being a person living with HIV12, the barriers that stigma creates impact individuals well before they are diagnosed HIV- positive: a) by making them less willing to negotiate safer sex because they may be accused of suggesting that their partner may have this stigmatized illness; b) by being less willing to get tested for fear of who might find out that they even requested the test much less who might find out about an HIV-positive result; and c) by making it more difficult for individuals to accept their HIV diagnosis, which leads to denial and lack of linkage to care.  HIV stigma can arise from fear of transmission, homophobia, blame, and judgment regarding drug use and/or sexual behaviors.22,23 Limited research has been conducted in the Deep South to identify the issues that are the most salient in maintaining the current extent of HIV stigma in the community. In a 2006 study of a group of churches in South Carolina,24 Lindley et al demonstrated that parishioners in general had a higher level of HIV stigma than pastors or care team members, and that HIV knowledge was inversely proportionate to HIV stigma. 
Strategies to address community-level stigma have been tested  but more are needed  Strategies to reduce community-level stigma have seldom been studied, but there are reviews and small trials that provide guidance.25-28 According to Heijinders & van der Meij (2003), community-level strategies aim to increase knowledge about HIV and stigma, increase community development skills and develop support networks. The approaches used to address community-level stigma generally include education and contact with individuals living with HIV. In addition, groups have used advocacy to influence governments to change policies and discriminatory laws and to improve access to treatment and care, but their role in decreasing stigma is unknown.   The two community-level stigma reduction interventions found in the literature were not studied in the United States. Apinundecha et al, (2007)25 tested a community participation process to decrease HIV stigma in a village in Thailand. This intervention involved engagement of community leaders and resources, HIV education provided in the temples, involvement in activities to understand stigma and suffering from the point of view of the individual living with HIV, creation of a community learning center, and efforts to provide sustainability of the intervention resources. In China, Wu et al, (2007)28 tested an intervention to reduce stigma among healthcare providers, which is an important aspect of community stigma. The intervention involved 1) interactive sessions where service providers could explore their own attitudes; 2) focus on the right of equal healthcare access for everyone regardless of social status, type of disease, or infection route; 3) role-playing of discrimination from the viewpoint of the person living with HIV, family members, and providers; 4) a physician sharing his/her own experience of overcoming difficult situations in their daily medical practice; and 5) sharing informative HIV/AIDS materials.  A community-level intervention for changing attitudes and behaviors about HIV prevention that has been endorsed by the CDC, the Community PROMISE intervention (Peers Reaching Out and Modeling Intervention Strategies), involves the sharing of role model stories of individuals in their process of changing their own attitudes and behavior. Although this intervention was developed and tested for HIV preventive behaviors,29 this intervention could be adapted for use as a stigma-reduction intervention. D-up, Mpowerment, Popular Opinion Leader, and RAPP are other CDC-endorsed community- level interventions ( that use opinion leaders and peers to influence and change attitudes and behaviors. While these are not interventions that were designed to decrease community-level stigma, the underlying theoretical frameworks are consistent for attitudinal and behavioral change, though evaluation of the measures of change in stigma would be required to establish their efficacy.
Summary  While community-level stigma reduction may feel out of reach for intervention, the need is great and there are scattered reports of interventions that have been tested and proven to be effective. Because of the great impact a community-level change could have on prevention, testing, and treatment, this is an important area for us to consider.❖
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