Module 5

1. Module 5 Stigma and Discrimination Associated with HIV

2. Module Objectives • Define correctly HIV-related stigma. • Define correctly HIV-related discrimination. • Describe current international rights related to HIV. • Discuss stigma and discrimination against women in the context of HIV. • Discuss examples of how stigma is expressed in professional and social settings. • Discuss the consequences of stigma in PMTCT services. • Discuss strategies to address stigma and discrimination. Malawi PMTCT Training Package

3. Exercise 5.1 Labels Interactive Game Malawi PMTCT Training Package

4. Unit 1 Introduction to the Concepts of Stigma and Discrimination and International Human Rights Malawi PMTCT Training Package

5. Unit 1 Objectives • Define correctly HIV-related stigma. • Define correctly HIV-related discrimination. • Describe current international rights related to HIV. Malawi PMTCT Training Package

6. Introduction to Stigma & Discrimination • HIV poses human rights challenges • HIV-related stigma is the single greatest challenge to slowing spread of the disease at global, national, and community level. • HIV-related stigma can prevent a woman from seeking ANC services and HIV testing; discourage her from disclosing her test results and agreeing to antiretroviral treatment and prophylaxis; and keep her from adopting safer infant-feeding practices. • Women may feel compelled to keep their HIV status secret. Malawi PMTCT Training Package

7. What is stigma? Stigma refers to unfavourable attitudes and beliefs directed toward someone or something. • Socially marginalized people bear heaviest burden of HIV-related stigma and discrimination. Malawi PMTCT Training Package

8. What is stigma? (continued) HIV-related stigma • Unfavourable attitudes and beliefs toward people living with HIV, those perceived to be infected, and their families, friends, social groups, and communities • Stigma is greater when risk of contracting the disease is thought to be under the individual’s control (e.g., commercial sex workers) Malawi PMTCT Training Package

9. What is discrimination? Discrimination is the treatment of an individual or group with partiality or prejudice. Malawi PMTCT Training Package

10. Examples of Discrimination • HCW denies services to person with HIV • Wife and children of a man who died of AIDS ostracized by community • Individual loses his job when it is known he/she is HIV-infected • Individual has difficulty getting a job when revealed he/she is HIV-infected • Community ostracizes a woman who decides not to breastfeed because it is assumed she is HIV-infected Malawi PMTCT Training Package

11. Stigmatization versus Discrimination Stigmatization reflects an attitude. Discrimination is an act or behaviour. • Discrimination is a way of expressing stigmatizing thoughts, either on purpose or by accident. • Stigmatized individuals may suffer discrimination and other human rights violations. Malawi PMTCT Training Package

12. Stigma, HIV, and Women • HIV epidemic spreading more rapidly among women than men. • Women more vulnerable to HIV. • Woman often first in a couple to be tested for HIV • These reasons may compel a woman either not to be tested or to keep her HIV status a secret. • Stigma and discrimination handicaps successful prevention, care, and support activities. Malawi PMTCT Training Package

13. Human Rights & HIV-related Stigma and Discrimination • Freedom from discrimination is a fundamental human right founded on the principles of natural justice. • Discrimination against people living with HIV or people thought to be infected is a clear violation of human rights. Malawi PMTCT Training Package

14. Human Rights & HIV-related Stigma and Discrimination Against Women Research in India and Uganda showed that women with HIV face stigma on many levels: • As women • As people living with HIV • As the spouse of an HIV-infected person • As the widow of a person who died of AIDS • Or as a woman who is HIV-infected and pregnant. Malawi PMTCT Training Package

15. Protect, Respect, & Fulfill Human Rights in Relation to HIV • Women and men have a right to determine the course of their sexual and reproductive lives. • Children have a right to survival, development, and health. • Women and girls have a right to information about HIV and access to a means of protecting themselves. Malawi PMTCT Training Package

16. Protect, Respect, & Fulfill Human Rights in Relation to HIV (continued) • Women have the right to access HIV testing and counselling and to know their HIV status. • Women have a right to choose not to be tested or choose not to be told the result of an HIV test. • Women have a right to make decisions about infant feeding and to receive support for the infant feeding method they choose. Malawi PMTCT Training Package

17. Unit 2 Social Context and the Impact of Stigma and Discrimination Malawi PMTCT Training Package

18. Unit 2 Objectives • Discuss examples of how stigma is expressed in professional and social settings. • Discuss the consequences of stigma in PMTCT services. Malawi PMTCT Training Package

19. The Face of Stigma • People living with HIV, orphans and families affected by HIV, are highly stigmatized in many countries. • Fear of stigmatization often the main reason why a person does not get tested. Malawi PMTCT Training Package

20. How Stigma Can be Expressed • Attitudes and actions are stigmatizing • Choice of language may express stigma • Fear and lack of knowledge foster stigma • Shame and blame are associated with HIV • Stigma makes disclosure more difficult • Stigma can exist even in typically supportive or caring environments Malawi PMTCT Training Package

21. Exercise 5.2 Examples of Stigma & Discrimination: Large Group Discussion Malawi PMTCT Training Package

22. Examples of Stigmatization and Discrimination In the media • Suggestions that specific groups of people with HIV are at fault whereas others are innocent • Depicting HIV/AIDS as a death sentence rather than a chronic disease that can be managed. • Using stereotypical gender roles, which may perpetuate women's vulnerability to sexual coercion and HIV infection. Malawi PMTCT Training Package

23. Examples of Stigmatization and Discrimination (continued) In health services • Violating patient confidentiality • Providing HIV care in stand-alone settings (such as clinics for sexually transmitted infections) that further stigmatize and segregate PLHIV • Requiring HIV test before surgery • Using infection-control procedures (such as gloves) only with patients thought to be HIV-positive, rather than with all patients Malawi PMTCT Training Package

24. Examples of Stigmatization and Discrimination (continued) In the workplace • Refusing to hire HIV-infected persons • Violating confidentiality In the context of religion • Denying participation in rituals (such as funerals) for PLHIV • References to HIV as a punishment or test Malawi PMTCT Training Package

25. Examples of Stigmatization and Discrimination (continued) In the family and local community • Discriminating against partners and children of PLHIV • Using violence against an HIV-positive spouse or partner • Denying support for bereaved family members Malawi PMTCT Training Package

26. Effects of Stigma Stigma is disruptive and harmful at every stage of HIV care. • People who fear stigma and discrimination are less likely to seek HIV testing. • Persons testing HIV-positive may be afraid to seek necessary care and treatment. • PLHIV may receive suboptimal care from discriminatory HCWs. • Stigma may discourage those who are HIV-infected from discussing their HIV status with their sex partners. Malawi PMTCT Training Package

27. Secondary Stigma Secondary stigma (stigma by association) • Effects of stigma often extend beyond the infected individual to stigma by association. • Women whose husbands died of AIDS can be stigmatized by their community. Malawi PMTCT Training Package

28. Stigma & PMTCT Services Consequences of stigma in PMTCT services • Discourages women from accessing ANC • Prevents people from receiving HIV testing • Discourages women from discussing their HIV test results and disclosing results to partner(s) • Prevents women from accepting PMTCT interventions • Discourages women from accepting referrals to ARV Clinic • Discourages safer infant-feeding practices (replacement feeding or early cessation of breastfeeding) Malawi PMTCT Training Package

29. Unit 3 Dealing with Stigma & Discrimination in Healthcare Settings and Communities Malawi PMTCT Training Package

30. Unit 3 Objective • Discuss strategies to address stigma and discrimination. Malawi PMTCT Training Package

31. Addressing Stigma in PMTCT Services • To increase participation in PMTCT services, implement interventions that address HIV-related stigma. • These efforts should occur at all levels: • National • Community, social, and cultural • PMTCT service • Individual, HCW Malawi PMTCT Training Package

32. National Level Examples of national initiatives and policies that HCWs can advocate: • Legislation that protects rights of PLHIV • Legislation that protects legal rights of women in health care, education, and employment. • Anti-discrimination policies • Scale-up treatment of HIV with antiretroviral (ARV) medication. • Quality treatment programmes for people with addictions. • Involve consumers in national advocacy and programme and policy development. Malawi PMTCT Training Package

33. National Level (continued) • Advocate for sufficient funding for PMTCT services. • Educate national leaders about the importance of PMTCT services Malawi PMTCT Training Package

34. National Level (continued) • Encourage national leaders to serve as role models in their professional and personal lives • Encourage leaders to hire staff that are HIV-infected. • Encourage leaders to praise the good work of PMTCT HCWs. • Encourage leaders to speak out against emotional, verbal, and physical abuse directed at women infected with HIV. • Remind leaders to promote funding of HIV care and treatment services. • Suggest that leaders be tested for HIV. Malawi PMTCT Training Package

35. Community Level • Stigmatization is a social process that must be addressed on the community level. • PMTCT service managers should collaborate with the community to address HIV-related stigma and discrimination. Malawi PMTCT Training Package

36. HIV Education & Training HCWs should participate in educational programmes that: • Increase knowledge about HIV • Increase awareness of issues faced by PLHIV • Increase awareness of domestic violence faced by some newly diagnosed women • Include content that violence against women or men is not acceptable Malawi PMTCT Training Package

37. HIV Education & Training (continued) HCWs should participate in educational programmes that: • Encourage leaders to make workplaces HIV-friendly. • Promote PMTCT activities as routine part of healthcare and HIV prevention/treatment • Educate community about PMTCT interventions • Increase referrals to/from PMTCT services Malawi PMTCT Training Package

38. Community Awareness of PMTCT Interventions • Community education and mobilization activities increase community awareness of PMTCT interventions • Greater community awareness should strengthen social support for the partner, extended family, and community. • People with social and family support cope with their HIV infection better. Malawi PMTCT Training Package

39. Community Partnerships • PMTCT HCWs and managers should build partnerships with churches, schools, and social or civic organizations when developing PMTCT services. • Promoting PMTCT services among community organizations enhances sustainability • Faith-based organizations (FBOs) and religious communities are important partners in efforts to eliminate stigma. Malawi PMTCT Training Package

40. Ways to Facilitate Building of Community Partnerships • Maintain awareness of community health and development activities that benefit PMTCT clients. • Understand the HCW’s role as a liaison between community and the PMTCT service. • Work to incorporate PMTCT messages and activities into existing MCH and BCI initiatives. • Participate in community meetings with influential leaders to discuss HIV and PMTCT Malawi PMTCT Training Package

41. Involve People Living with HIV (PLHIV) Invite PLHIV to become involved in national and local initiatives, as this will help them: • Gain and practise life skills to challenge HIV-related stigma and discrimination. • Become actively involved in national and local activities to foster positive perceptions of PLHIV. • Support establishment of organizations and networks for PLHIV. Malawi PMTCT Training Package

42. Training Programmes for PLHIV • Develop and implement training programmes for PLHIV to: • Advocate for their rights and take an active role in their own health care. • Participate in interventions (such as PMTCT services or HIV prevention and care education) as volunteers, advisors, board members, or paid employees to demonstrate their ability to remain productive members of the community. Malawi PMTCT Training Package

43. PMTCT Service Level • Ensure that PMTCT services are integrated into existing health and social services • Suggestions on how to do this follow in the next few slides Malawi PMTCT Training Package

44. Integrate PMTCT Interventions into (ANC) services • Offer routine HIV testing and education to all clinic attendees, regardless of HIV risk. • Mainstream HIV services with routine ANC services helps normalize HIV. Malawi PMTCT Training Package

45. Increase Participation of Partners • Educate partners about PMTCT interventions and stress importance of partner testing and support for PMTCT. • Examples where men were invited to visit reproductive clinics for testing, counselling and PMTCT education designed for a male audience have shown: • Improved spousal communication about PMTCT • Increased HIV testing among male partners of PMTCT patients • Increased rates of disclosure of HIV test results for both partners Malawi PMTCT Training Package

46. Implement Educational Sessions • Group or individual education sessions can draw attention to role of partners in HIV transmission and reduce stigmatization of women. • Reach out to men in male-friendly settings, such as sports stadiums, taxi stands, and markets to increase awareness of PMTCT and encourage them to attend ANC with their pregnant partners. • Couples counselling offers opportunity to reduce blame directed at women and emphasize couple's shared responsibility for PMTCT Malawi PMTCT Training Package

47. Educate & Train HCWs • Success or failure of PMTCT service depends on attitudes, skills, and experience of its employees. • Train HCWs and clinic staff at all levels • Employee training should include: • Complete and accurate information about transmission of HIV and risk factors for infection • Ongoing activities that address HIV-related stigma Malawi PMTCT Training Package

48. Understand the Perspectives of PLHIV • Training HCWs to reduce stigmatizing behaviour will address assumptions about the educational, social, economic, and class status of people living with HIV. • During training activities, strive toincrease awareness of language used to describe HIV and PLHIV. • The training should include: • Exercises to encourage participants to explore personal attitudes and prejudices • Summaries of confidentiality, anti-discrimination, and infection control policies as well as consequences of policy breaches Malawi PMTCT Training Package

49. Adhere to Infection Control & Patient Confidentiality Infection control • Provide all HCWs with the equipment and supplies needed to adhere to infection control policies Patient confidentiality Safeguard patient confidentiality by developing policies and procedures on: • Recording and storing patient information • Ensuring patient interactions are private • Disclosure of medical information and informed consent • Disciplining workers who breach confidentiality • Requirements for staff confidentiality training Malawi PMTCT Training Package

50. Encourage PMTCT Staff to Serve as Role Models • Encourage PMTCT staff to treat PLHIV the same as patients assumed to be HIV-negative. • HCWs are role models, and their attitudes toward PLHIV are often imitated in the community. Malawi PMTCT Training Package