Hiv aids related stigma & discrimination by Dr Munawar Khan SACP
HIV/AIDSRelated Stigma & Discrimination Dr. M. MUNAWAR KHAN BCC Coordinator Enhanced HIV/AIDS Control Program Sindh
OBJECTIVES:• Define and discuss stigma: its background and social mechanisms• Address the specific features of HIV that lead to stigma• Consider specific factors that should be addressed in education
Lesson Objectives1. Define and identify HIV/AIDS-related Stigma & Discrimination.2. Better understand international and national human right issues.3. Clarify personal values and attitudes with regard to HIV/AIDS prevention and care.4. Know how to address stigma and discrimination in the context of providing HIV services
‘Many peoplesuffering from AIDSand not killed by the disease itself arekilled by the stigma.’ Nelson Mandela, 14th International AIDS Conference, Barcelona July 2002
Stigma & Discrimination• Stigma: (Tohmat) refers to unfavourable attitudes and beliefs directed toward someone or something• Discrimination:(imtiazi salook) is the treatment of an individual or group with partiality or prejudice• Stigmatization reflects an attitude• Discrimination is an act or behaviour
Components of StigmaLabelingStereotypingDevaluingDiscriminatingIgnorancePrejudice/intolerance
How stigma and discrimination “work”?• Stigma works by producing and reproducing social structures of power, hierarchy, class and exclusion by transforming difference into inequality. The stigma attached to HIV/AIDS is layered upon pre-existing stigma.• Stigma is not unique to HIV/AIDS. It has also been seen associated with TB, syphilis and leprosy. It is seen in diseases associated with transgression of social norms.
How stigma and discrimination “work”? cont…..• Language is crucial to stigma. Powerful metaphors act to reinforce and legitimize stigmatization. These include HIV/AIDS as death, horror, shame, punishment, and otherness.• Stigma can be internal or external. Internal stigma (felt or imagined) is the shame associated with HIV/AIDS and the fear of being discriminated against. External stigma refers to the actual experiences of discrimination.
TYPES OF STIGMA Two main types :1-External stigma: [the experience of individual treated differently to other people]2-Internal stigma : [the way a person feels about themselves [e.g. shame, fear of rejection, discrimination]
1-Examples of EXTERNAL stigma• Avoidance• Rejection• Moral judgment• Stigma by association• Discrimination (the ACT associated with stigma)• Abuse• Victimization• Abuse of human rights
2-Examples of INTERNAL stigma • Self-exclusion from services or opportunities. • Perceptions of self: low self esteem. • Social withdrawal. • Overcompensation. • Fear of disclosure.
WHAT IS SELF ESTEEM?• Self esteem is the image of one’s own self.• Person’s view of his worth and value.• If this image is positive person sees himself valuable, worth while and comfortable.• If this image is negative he feels, worthless, incompetent and unlucky.
Factors that can influence self esteem:1. Previous performance.2. Event and circumstances of live.3. Physical appearance.4. Judgment of significant others.
1-HIGH SELF ESTEEMA person with high self esteem enjoys:• Good feelings about him self• Make others feel good• Good decision making• Healthy relationships• Full utilization of his strengths and potential.
2-LOW SELF ESTEEM A person with low self esteem suffers from feeling of worthlessness and inferiority he1. Looks at minor failures again and again.2. Is highly critical to him self.3. Is self centered.4. Is shy and insecure.5. Misinterprets others thoughts and actions and make himself and others miserable.
How to strengthen Self Esteem?1. Feel good about your self and nurture your self.2. Do not run your self down.3. Bring to light your minor achievements.4. Recognize the good in others and express your sincere appreciation.5. Accept compliment with grace.
How to strengthen Self Esteem? Conti……• Reject unconditional negative comments.• Avoid the company of critical people. They make you feel down.• Join those group who are supportive and friendly.• Believe that God created us with all love. We all have the qualities and positivities.
A Dynamic Model of the Four Manifestations of Stigma Institutional Stigma Public Stigma Stigma-by- Self- Association Stigma
Expressions and forms of stigma• Stigma divide into four loosely defined groups: physical, social, verbal and institutional. 1-Physical stigma: – Isolated, shunned, neglected – Separate living space, eating utensils – Violence 2-Social stigma: – Isolated from community – Voyeurism: any interest may be morbid curiosity or respect rather than genuine concern – Loss of social role/identity: social `death`, loss of standing and respect
Forms of stigma (contd.)3-Verbal stigma:– Gossip, taunting, Labeling:– in Africa: "moving skeleton," "walking dead body," and "keys to the mortuary"– In Vietnam: "social evils," and "crust of society."4-Institutionalised stigma:– Barred from jobs, scholarships, visas– Denial of health services– Police harassment (eg of sex workers, HIV-positive activists in China, outreach workers in India)
The impact of stigma• It creates ‘excluding behaviors• It isolates and divides communities• Causes people to withdraw, putting them beyond the reach of support services• It generates a strong ‘us and them’ phenomenon US THEM
‘HIV-related stigma isincomparable in:its scale,its context/background,and its causes.’ Mary Robinson, 16th International AIDS Conference, Toronto, 2006
HIV stigma and culture… Stigma is ‘written’ by powerful cultural forces: and as a social product, exists at the intersection between power, difference and culture…Power Stigma Difference Culture
Self Stigma and the person• Self stigma: “More deadly than the HIV living within our bodies:• it infects your mental state resulting in behaviors beyond your ability to understand” [Thailand] Source: ‘Living on the outside’ (HDN, 2005)
Self stigma –derived from enacted (actual) or perceived (anticipated) social experiences Related to knowledge of public reactions to stigma reflected appraisals of others • Label avoidance – Avoiding HIV testing – Avoiding disclosure of HIV status – Avoiding treatment – Avoiding safer sex • Withdrawal from situations where ill treatment might occur • Internalization of the negative label – Reduction of self-esteem & self-efficacy – Hopelessness and depression – Reduced Immune functioning
Stigma & IDU’s• IDUs: experience additional barriers to care, and exclusion from ARVs –• stigma is amplified/increased because of the double diagnosis• Disclosure: “Everyone seems to care and is very sorry about what has happened, but no one comes within touching distance and no one is willing to touch or be touched. Your whole world disintegrates within one day” [Sri Lanka]
HIV stigma & Workplace PLHIV• PLHIV experience significant stigma in the workplace, healthcare setting, and in the religious sector - stigma exists even in institutions purporting to offer a ‘safe haven’• “Fear of infection seems to be a powerful factor in explaining…stigma among health workers, especially in countries with weak health care infrastructure” [India]Source: ‘Living on the outside’ (HDN, 2005)
HIV stigma & Media• “The Media wants to sensationalize/exaggerate issues…and this becomes even more dangerous when media personnel are not knowledgeable to start with” [Ethiopia]• “The media is a direct reflection of the development and consciousness/awareness of a society” [Ethiopia] Source: ‘Living on the outside’ (HDN, 2005)
Stigma & Health service• Discourages access to ANC services• Prevents access to counselling , HIV testing and MTCT services• Discourages disclosure of HIV test results to partner(s)• Discourages acceptance of MTCT interventions• Inhibits use of safer infant-feeding practices• Confers secondary stigmatisation on the child
1- Root Causes of stigmaThe role of knowledge about HIV and AIDS and fear surrounding it: Peoples believe that the fear of transmission from casual transmission, and the various "what if scenarios" are the result of: 1) The lack of specific, in-depth information about HIV transmission, 2) Fear-based public messaging, and 3) The evolving nature of knowledge about HIV and AIDS.
2-Root Causes of stigma2. The role of values, norms, and moral judgment: This stigma is exacerbated by the seriousness of the illness, its mysterious nature, and its association with behaviors that are either illegal or socially sensitive (e.g., sex, prostitution, and drug use). Also relevant is the perception that HIV infection is the product of personal choice: That one chooses to engage in "bad" behaviors that put one at risk and so it is "ones own fault" if HIV infection ensues."
Addressing stigma• Educate and train healthcare providers in: • HIV transmission • Activities to address stigma • Awareness of language that describes PLWHA • MTCT-related policies • Counselling and safer infant feeding practices
Addressing stigma Enlist manager’s help to ensure policies and procedures are in place and implemented for:• Non-discrimination policies• Confidentiality• Universal precautions• Post-exposure prophylaxis (PEP)
Effects of stigma• Social isolation• Limited rights and reduced access to services• HIV/AIDS related stigma fuels new HIV infections• Secondary stigma (stigma by association)
INTERVENTIONSInterventions addressing HIV-relatedstigma can take place at all levels:1. National2. Community and social/cultural3. MTCT site/facility4. Individual
1-National Level Interventions to Address Stigma Support• Human rights legislation• National efforts to scale up ARV treatment• Funding for PPTCT services, and training Share• MTCT success stories
2-Community Level Interventions In the community, promote • HIV awareness and knowledge • MTCT activities as integral to health care and HIV/AIDS prevention and treatment • Referrals to and from MTCT services • Awareness of MTCT interventions
Community level interventions (contd……) Support• Partnership with schools, social and community organizations• PLWHA ( people living with HIV/AIDS) in implementing initiatives• Networking with needed linkages• Ongoing training
3-Program level interventions • Integrate MTCT into antenatal services • Encourage partner involvement • Enlist partner and family support to decrease HIV transmission
The woman in the picture, Marie, is on her way to the market. Her husband was recentlydiagnosed as HIV-positive and has been quite ill. People in the community suspect that he isHIV-positive. Ask participants:»»What do you think the community members sitting on the chairs are thinking?
Negative attitudes about different groups of people can lead to discrimination. For example,Anna is in Class 4 and is the best in her class. Her father recently died of AIDS and her motherand baby brother are HIV-positive.Ask participants:»»What is happening in this picture?
Who does stigma and discrimination affect? Anyone infected, affected, or potentially at risk for HIV (illustrative list): Injecting drug users Commercial sex workers HIV orphans Family and friends of HIV+ people of high-risk groups Caregivers
Stigma and discrimination impacts on HIV/AIDS programs• They can make life unbearable for those who live with the disease.• Stigma may make people who may have been exposed unwilling to be tested,• To change their behavior,• To reject prevention methods,• And can perpetuate poor quality of care and discrimination.• Example, a woman may be unwilling to bottle feed if she believes that it will brand her as HIV infected.
Illustrative barriers• PLWA denied basic rights, access to care, treatment and services.• IDU’s and sex workers are forced to register their status and are discriminated against.• Sex workers face imprisonment due to the criminalization of their trade.• Children in institutions cannot access services and are increasingly vulnerable to trafficking after ‘graduation’
How to address stigma and discrimination• Care and support also mean emotional and social needs for those who are affected by HIV. This includes• visitation programs,• support groups,• and methods aimed at overcoming fears of the affected and society.• IEC can include counseling,• conflict resolution,• and educational messages tailored to target audiences (for example, knowledgeable health care workers).• Sindh AIDS Control Program – Giving voice to those affected by HIV/AIDS – Promoting a supportive environment through communication strategies – Protecting the rights of those affected by HIV/AIDS
Summary• Stigmatisation reflects an attitude• Discrimination is an act or behaviour• Stigma and discrimination are often linked to violations of human rights• Human rights declarations affirm all peoples’ rights to be free from discrimination, including discrimination based on HIV/AIDS status.• Stigma discourages: -Disclosure of HIV status -Acceptance of safer infant-feeding practices -Access to education, counselling, and treatment even when such services are available and affordable
Summary contd The MTCT programs and staff can help reduce stigma and discrimination in the healthcare setting, in the community, and at the national level Encourage MTCT staff to serve as role models Involve PLWHA Promote partner participation and community support HIV/AIDS-related stigmatisation and discrimination can discourage access to key HIV services, including: Testing MTCT services Antenatal care ARV prophylaxis
Our experience ofstigmatized and stigmatizer• PART ONE: think about a time in your life when you felt isolated or rejected for being seen to be different from others, or when you saw other people treated this way. What happened? What impact did it have on you?• PART TWO: Think about a time in your life when you isolated or rejected someone else because they were different. What happened?? How did you feel? What was your attitude? How did you behave? [individual, then share: 5 mins]
ChallengeHIV-related stigma is increasingly recognized asthe single greatest challenge to slowing thespread of HIV/AIDSHIV/AIDS – a threefold epidemic• HIV• AIDS• Stigma, discrimination, and denial
Human rights• Freedom from discrimination is a fundamental human right• Discrimination on the basis of HIV/AIDS status, actual or presumed, is prohibited by existing human rights standards• Discrimination against persons living with HIV/AIDS (PLWHA), or those thought to be infected, is a clear human rights violation