Health Consequences of AIDS-related Stigma

1. Maria L Ekstrand, PhD Center for AIDS Prevention Studies University of California, San Francisco Health Consequences of AIDS-related Stigma

2. What is Stigma? Historically, stigma has had two components: • It's a mark of an enduring condition or attribute • The condition is negatively valuedby society As a consequence, those with the condition become discredited and disadvantaged.

3. Stigma, prejudice & discrimination Related but not synonymous: • Prejudice: An attitude. An individual evaluation or judgment of a group • Discrimination: A behavior. Refers to treatment of individuals based on their membership in a group.

4. Types of stigma Felt Stigma - perception of societal normsre. the stigmatized condition Enacted Stigma - overt acts of stigma and discrimination Note: Even a few dramatic and public enactments of stigma can drastically increase the perception of felt stigma.

5. Why is AIDS so highly stigmatized? Stigma is more intense when the condition is: 1) Perceived as lethal and incurable 2) Perceived to be the responsibility of the bearer

6. What drives AIDS stigma? Research both in the US and abroad suggests that it's fueled by two sub-types: 1) Instrumental stigma - fear of casual transmission 2) Symbolic stigma pre-existing prejudice toward those groups who have been hardest hit by disease Different intervention implications!

7. AIDS stigma not limited to PWAs Courtesy stigma: Refers to shared stigma by anyone associated with the condition, even if uninfected. Has been reported by family members, care-givers, AIDS healthcare workers and anyone else associated with PWAs, even if not infected themselves.

8. Personal stories from India "I was in Tamil Nadu, was married off there. My husband died two years ago and when I went back to my village, there were huge protests. They threw me out. I took refuge here along with my daughter," "If a bride tests HIV positive, she will be dubbed an AIDS patient and she will never get married. Secondly, her virginity will always be suspected and she will become a social outcast"

9. Personal stories from India "Media has made HIV look so frightening that we are scared. I understand that it's not contagious, but neighbors had put a lot of pressure. So I asked her to leave." (Landlord who evicted PWA) An entire village became the target of stigma after one of its bus drivers tested positive for HIV, resulting in villagers being unable to find employment, being dismissed from nearby colleges, and having difficulty arranging marriages. (ndtv.com) A pt was taken to the ER with a severe breathing problem. While in the midst of emergency treatment, the doctors discovered that he was HIV positive. They screamed and jumped away from him, discontinuing treatment. The patient died within an hour. (Delhi)

10. Consequences of AIDS-related stigma and discrimination It causes human suffering due to: • Loss of employment • Loss of housing • Rejection by family • Ostracized by community • Denied schooling • Denied marriage • Restrictions on movement -> Quarantine • Physical and verbal abuse and threats and • Interferes with AIDS prevention and treatment services

11. Health Consequences of AIDS Stigma • Prevention - afraid to access prevention services and be identified as member of "at risk" group. - afraid to disclose positive serostatus to sex partner • Treatment - afraid to disclose status to health care staff and not wanting to be seen at "AIDS clinic" • Research - not wanting to identify as member of stigmatized group. Concerns of loss of confidentiality • Care - unwilling to provide care for sick family member. Unwilling to go into AIDS treatment field • Mental health consequences for PWAs: High rates of depression and suicide.

12. Prerana study Examining adherence to HIV medications in Bangalore, India: • Patients reported that perceptions of stigma and fear of discrimination prevented them both from purchasing and taking their medication. • Many complained of lack of privacy and did not want to take their medication in front of others. • Patients did not want to fill their prescriptions at the local pharmacy, because of lack of confidentiality and the risk of stigma and discrimination.

13. Prerana Participants were typically unwilling to disclose their HIV infection. “My wife knows that I had gone to the hospital and taken treatment. I told her not to tell anyone as it [is] a humiliation for us”. Stigma avoidance strategies included: 1) stating or implying that they had a different disease, such as TB; 2) adopting a “don’t ask, don’t tell” stance; 3) lying outright about their HIV status; 4) seeking treatment at a hospital far away from home; and 5) refusing to explain written medical documents to illiterate family members.

14. Prerana Method: 299 HIV infected patients on ART recruited from hospital clinic. 2/3 men and 1/3 women Interviewed at baseline, six-month follow-up, and twelve-month follow-up visits about their experiences with medication and living with HIV

15. Prerana study 5 culturally specific measures developed: • heard stigma (stories about discrimination), • felt stigma (perceptions of the prevalence of HIV stigma in one’s community), • internalized stigma (personal endorsement of HIV stigmatizing beliefs), • enacted stigma (personal stigma experiences), and • avoidant coping (strategies to avoid disclosing one’s HIV serostatus to cope with stigma).

16. Prerana results • Our stigma measures are moderately to strongly correlated with one another. • Stigma is related to suboptimal adherence • In addition, being depressed was associated with higher scores on: • Felt stigma • Internalized stigma • Enacted stigma • Avoidant coping

17. The data from our qualitative and quantitative work on AIDS stigma in South India show that: • fear of stigma is associated with lack of HIV status disclosure, • the manifestation of AIDS stigma varies by gender, • internalization of stigma attitudes is associated with depression, • the use of avoidant coping strategies is related to depression and lowered quality of life. • Internalized stigma and avoidant coping are associated with lower ART adherence rates

18. So what can we do to reduce AIDS-related stigma?

19. Stigma interventions • Few interventions to date • No rigorous evaluations conducted • Research suggests possible directions, but setting-specific formative work needed to ensure that local issues are addressed.

20. Reducing AIDS stigmaTargeting at multiple levels • Policy: Law and policy reforms needed globally to prohibit discrimination of PWAs and to protect those who are most vulnerable (e.g. sex workers, MSM, women, substance users, ethnic and racial minorities). • Social: Community-based programs, including media (as appropriate in each setting). Work through local NGOs • Institutional: Military, schools, prisons, hospitals, and religious institutions and leaders.

21. Reducing AIDS stigma • Families - provide support and education in whatever venue that is possible • Mobilize and support positive people and encourage their involvement in activities and advocacy • Couples - in whatever setting that couples can be reached, including testing and counseling • Individuals - during healthcare visits, testing and counseling and other appropriate venues • Recruit Opinion Leaders - educate and involve them

22. Reducing stigmaContent of messages • Content needs to be tailored, based on: • Cultural context and norms • Prevalent health beliefs • Local laws • Setting-specific stigma dynamics • Specific infection fears • Pre-existing prejudices toward marginalized groups • Multiple stigmas? • Look for strengths as well as for challenges in each cultural setting