8/15/2013. The Impact of Stigma on HIV/AIDS Care for Women. What is Stigma? Types of Stigma. HIV Incidence Among Adolescent and Adult Females, 2011

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1 The Impact of Stigma on HIV/AIDS Care for Women What is Stigma? Stigma is a powerful negative social label, stemming from a discrediting attribute of the individual, which radically changes their social identity [The discrediting attribute] is conceptualized by society on the basis of what constitutes difference or deviance. - Sociologist Erving Goffman s Theory of Stigma, 1963 Richard Parker, Peter Aggleton, HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action, Social Science & Medicine, Volume 57, Issue 1, July 2003, Pages 13-24, ISSN , The findings and conclusions in this presentation are those of the author and do not necessarily represent the views of 9536(02) the U.S. Department of Health and Human Services Office on Women s Health. 2 Types of Stigma Internalized stigma - occurs as the individual internalizes cultural norms that label him/her as a member of a deviant group, and assumes a spoiled identity. 1 Enacted stigma - prejudicial attitudes and actual discriminatory behaviors such as interpersonal avoidance, verbal insults, and violence 2 Courtesy stigma - the least studied of the three types of stigma, refers to prejudice and discrimination against individuals who are associated with stigmatized others 2 12% 13% Racial Demographics of US Females, % White alone, not Hispanic or Latino Black or African American American Indian and Alaska Native alone Hispanic or Latino Asian Two or More Races 69% 1. Sayles, J., Wong, M., Kinsler, J., Martins, D., & Cunningham, W. (2009). The association of stigma with self-reported access to medical care and antiretroviral therapy adherence in persons living with hiv/aids. Journal General Internal Medicine, 24(10), doi: /s ) US Bureau of Census, 2010, Resident Population by Sex, Race, and Hispanic-Origin Status:2000 to 2009, 2) 2. Bogart, L., Cowgill, B., Kennedy, D., Ryan, G., Murphy, D., Elijah, J., & Schuster, M. (2008). Hiv-related stigma among people with 3 hiv and their families: A qualitative analysis. AIDS Behavior, 12, doi: /s x 4 HIV Incidence Among Adult and Adolescent Females by Race/Ethnicity, % 17% 15% White alone, not Hispanic or Latino Black or African American HIV Incidence Among Adolescent and Adult Females, 2011 Black/ African American Hispanic/Latino a White < < < 1 14% 25% American Indian and Alaska Native alone Hispanic or Latino 89% 86% 75% Asian 64% Two or More Races b Heterosexual Contact Injection Drug Use c Other CDC 2011, HIV Surveillance in Women 5 CDC, Diagnoses of HIV Infection among Adult and Adolescent Females, by Race/Ethnicity and Transmission Category 2011 United States and 6 Dependent Areas a) Hispanics can be of any race b) Heterosexual contact with a person known to have or be at high risk for, HIV infection c) Includes blood transfusions, perinatal exposure, and risk factor not reported or identified 6 1

2 Transmission Category 7 Diagnoses of HIV Infection Among Adult and Adolescent Females, 2011 Age at Diagnosis (in years) N=523 N=1,142 N=2649 N=2681 N=3618 % % % % % Injection Drug Use Heterosexual Contact a Other b CDC,2012 a) Heterosexual contact with a person known to have or be at high risk for, HIV infection b) Includes blood transfusions, perinatal exposure, and risk factor not reported or identified Social Factors Facilitating the Spread of HIV A disease is no absolute physical entity but a complex intellectual construct, an amalgam of biological state and social definition - historian Charles Rosenberg (1987) Poverty 1 Gender Concentration of the virus in specific geographic areas and smaller sexual networks 1 Sexually transmitted co-infections 1 Stigma 1 Injection and noninjection drug use and associated behaviors 2 1 U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality. (2013). National Healthcare Disparities Report 2012 ( ). Retrieved from website: 2 CDC, Stigma Impacts Care IOM Report (2002) Unequal treatment: Confronting racial and ethnic disparities in healthcare The sources of these disparities are complex, are rooted in historic and contemporary inequities, and involve many participants at several levels, including health systems, their administrative and bureaucratic processes, utilization managers, health care professionals, and patients ( IOM Unequal Treatment report ) 9 10 Findings from IOM Unequal Treatment Report When faced with patients who are from different racial or ethnic backgrounds, doctors may find that their uncertainty about the patient s condition and best course of treatment is even greater. This uncertainty can open the door for physicians stereotypes and biases to affect their judgment of patients and interpretation of their presenting concerns. African Americans and Hispanics tend to receive a lower quality of healthcare across a range of disease areas (including cancer, cardiovascular disease, HIV/AIDS, diabetes, mental health, and other chronic and infectious diseases) and clinical services; African Americans are more likely than whites to receive less desirable services, such as amputation of all or part of a limb; Disparities are found even when clinical factors, such as stage of disease presentation, co-morbidities, age, and severity of disease are taken into account; Findings from IOM Unequal Treatment Report A study of cardiologists, for example, found that these physicians referred white male, black male, and white female hypothetical patients (actually videotaped actors who displayed the same symptoms of cardiac disease) for cardiac catheterization at the same rates (approximately 90 percent for each group), but were significantly less likely to recommend catheterization procedures for black female patients exhibiting the same symptoms

3 Treatment Cascade by Race, 2012 Treatment Cascade by Gender, Behavioral Evidence of HIV Testing Stigma UCLA researchers examined 165,828 outpatient visits in to explore whether people receiving an HIV diagnostic test, compared to people receiving non-stigmatized, diagnostics tests (mammography and blood pressure testing), listed their interest in testing: more frequently as a non-primary reason for visit listed a greater number of reasons for visiting the clinic and listed more reasons for visit unrelated to the testing performed To conceal their interest in testing for HIV, people may be requesting and receiving additional, often unnecessary, services. Among people who reported HIV testing as a reason for visit, 42.39% requested HIV testing as a nonprimary reason for visit (mammography: 13.77%; blood pressure: 18.0), and on average listed more reasons for visiting the clinic. The odds of requesting additional unrelated services for HIV testing patients was almost 5 times that of patients requesting blood pressure tests and over 20 times the odds of mammography patients International Federation of Red Cross and Red Crescent Societies. (2002). Orphans and other children made vulnerable by hiv/aids - principles and operational guidelines for programming. Retrieved from 15 Young, S., & Zhu, Y. (2012). Behavioral evidence of hiv testing stigma. AIDS Behavior, 16(3), doi: /s Impact of HIV-Related Stigma on Health Behaviors and Psychological Adjustment Among HIV-Positive Men and Women This study examined the role of stigma in relation to (a) current health status, (b) mental health, (c) medication adherence, and (d) sexual risk behavior, among 221 HIV-positive men and women receiving care at an infectious disease clinic Self-reported HAART adherence for the previous week emerged as a robust predictor of stigma-related experiences. Participants reporting frequent stigma-related experiences were more likely to experience depression Stigma constitutes a chronic stressor that may contribute to coping difficulties, inadequate self-care, and difficulties with safer sex negotiation and condom use Vanable, P., Carey, M., Blair, D., & Littlewood, R. (2006). Impact of hiv-related stigma on health behaviors and psychological adjustment among hiv-positive men and women. AIDS and Behavior, 10(5), doi: /s Reproductive Rights and Stigma When I had my third one, I had my tubes tied because I couldn t risk getting pregnant again because I would have pulled my hair out. I had one of the doctors shake my hand like, Ah, I commend you. What a wonderful thing to do! When you are positive, you learn undertones... I understood his undertone was, thank God you tied your tubes. You ve done a responsible thing not bringing another positive baby into the world. Deborah Ingram (1999): HIV-POSITIVE MOTHERS AND STIGMA, Health Care for Women International, 20:1,

4 Size Matters: Community Size, HIV Stigma, & Gender Differences This study (2009) examined perceptions of HIV stigma among males and females with HIV/AIDS in metropolitan (a county with 1 or more city with population 50k), micropolitan( a county with 1 or more city with population 10k 50k), and rural areas by surveying 200 PLWHA. Retaining anonymity and privacy is a struggle in non-urban areas women reported a greater concern with public attitudes about people with HIV/ AIDS than men did, making them more vulnerable to the effects of stigmatization Rural women living with HIV/AIDS reported more disclosure concerns compared to their rural male counterparts or micropolitan and metropolitan women HIV Discrimination Settlements Fayettevile Pain Center January HIV positive woman referred to her the pain center by her PCP and the treating physician refused her care after looking at her prescription list. Castlewood Treatment Center February A young woman was denied care for her eating disorder after the Vice President of Finance learned of positive status. The Executive Director instructed employees to delay the patient s enrollment process to discourage her from seeking treatment at the facility Gonzalez, A., Miller, C., Solomon, S., Yanushka Bunn, J., & Cassidy, D. (2009). Size matters: Community size, hiv stigma, & gender differences. AIDS Behavior, 13(6), doi: /s ) 2) 20 Recognition that Disease is not an Isolated Phenomenon Strategies to Reduce Stigma Comprehend the societal issues (poverty, welfare, violence, crime) which affect community health Address racial/ethnic variations associated with the incidence, prevalence, morbidity and mortality of health condition/disease Identify and target behaviors that contribute to increased incidence and prevalence of health conditions Identification of Disparities in Health Care Access What gaps in services exist? What services are needed? Do different groups need different prevention efforts? Are resources reaching all in the community? Internalization of Cultural Sensitivity Integrate cultural influences & language preferences of target community Consider the minority group s locality Address issues of stigma Hold events in accessible facilities

5 Staff Who Relate to the Target Community This includes staff who have grown up in the community, look like members of the target community, or speak the same language as the target community Staff must be knowledgeable about health condition of the program s focus Staff must have ability to communicate in culturally and individually sensitive manner Build Partnerships Partner with community organizations, local government agencies, faith-based organizations, social organizations, educational institutions, non-profits, sororities, etc. Try to partner with groups that can attract as many women as possible from the target population Honest and Frequent Evaluations Conduct both impact and process evaluations Outline clear and timely objectives to show achievement and improvement over time Produce detailed work plans, quarterly reports, and final reports Obtain input from program participants to determine participant benefit OWH Programs National Women and Girls HIV/AIDS Awareness Day, March 10 Leading Ladies Promoting Healthy Lifestyles and Healthy Families: An HIV/AIDS Awareness Project Project HOPE: Helping Organizations Provide Effective HIV/AIDS Prevention for Women and Girls HIV/AIDS Related Services for Survivors of Domestic Violence HIV/AIDS Prevention for Women Living with HIV/AIDS in Puerto Rico Contact HIV Prevention for Women Living in the US Virgin Islands Girls at Greater Risk HIV Prevention for Female Adolescents/Youth at Greater Risk for Juvenile Delinquency Project In Community Spirit - HIV Prevention for Native Women Living in Rural and Frontier Indian Country White House Working Group on the Intersection of HIV/AIDS, Violence Against Women and Girls, and Gender-related Health Disparities Frances E. Ashe-Goins RN, MPH Associate Director for Partnerships and Programs U.S. DHHS - Office on Women s Health 200 Independence Avenue, SW Washington, DC Phone: ; Fax: Frances.Ashe-Goins@hhs.gov Website: