1. Stigma and Discrimination Related to MTCT
Module 4
Stigma and Discrimination Related to MTCT

2. Exercise 4.1 Labels Group Game
PMTCT Generic Training Package Module 4, Slide 2

3. Module Objectives Identify HIV-related stigma and discrimination.
Discuss the impact of stigma and discrimination on people living with HIV (PLHIV).
Discuss strategies to address stigma and discrimination in the delivery of PMTCT services.
PMTCT Generic Training Package Module 4, Slide 3

4. Concepts of Stigma and Discrimination
Session 1
Concepts of Stigma and Discrimination
PMTCT Generic Training Package Module 4, Slide 4

5. Session 1 Objectives Identify HIV-related stigma and discrimination.
Discuss the impact of stigma and discrimination on people living with HIV (PLHIV).
PMTCT Generic Training Package Module 4, Slide 5

6. Introduction to Stigma and Discrimination
HIV is one of the greatest human rights challenges of our time
Those aware that they are HIV-infected are burdened not only with the disease but also stigma and discrimination.
Stigma and discrimination are major barriers to preventing HIV transmission and providing treatment, care and support
PMTCT Generic Training Package Module 4, Slide 6

7. Introduction to Stigma and Discrimination (Continued)
The most effective responses to the HIV epidemic work to prevent stigma and discrimination and protect the human rights of people living with HIV and those at risk
PMTCT Generic Training Package Module 4, Slide 7

8. Stigma: Definition What is stigma?
PMTCT Generic Training Package Module 4, Slide 8

9. Stigma: Definition
Stigma: unfavourable attitudes and beliefs directed toward someone or something
HIV-related stigma: unfavourable attitudes and beliefs directed toward people living with HIV, their family and friends, social groups, and communities
PMTCT Generic Training Package Module 4, Slide 9

10. HIV-related Stigma
Stigma particularly pronounced when behaviour causing disease is perceived to be under individual’s control, e.g., sex work or injection drug use
Certain groups, e.g., poor people, men who have sex with men, sex workers and injection drug users, often bear heaviest burden of HIV-related stigma.
People who are HIV-infected are often assumed to be members of these groups, whether they are or not
PMTCT Generic Training Package Module 4, Slide 10

11. What are some examples of stigma?
PMTCT Generic Training Package Module 4, Slide 11

12. Examples of Stigma
Believing HIV is divine punishment for moral misconduct
Thinking women are responsible for transmitting HIV and other STIs in our community
A daughter refusing to visit her father once she finds out he has HIV because she felt "dirtied" by contact with him
A woman with HIV refusing to join a support group or tell people outside the family about her HIV because she fears being stigmatized
PMTCT Generic Training Package Module 4, Slide 12

13. Discrimination: Definition
What is discrimination?
PMTCT Generic Training Package Module 4, Slide 13

14. Discrimination: Definition
Discrimination: the treatment of an individual or group with prejudice
Discrimination includes the denial of basic human rights such as health care, employment, legal services and social welfare benefits
PMTCT Generic Training Package Module 4, Slide 14

15. Stigma and Discrimination Linked
Stigmatizing thoughts can lead a person to discriminate against another
Discrimination is a way of expressing stigmatizing thoughts; a distinction made about a person based on stigma that results in unfair or unjust treatment of that person
PMTCT Generic Training Package Module 4, Slide 15

16. Stigma: Other Diseases and HIV
Stigma and discrimination also occur with other diseases: TB, syphilis, leprosy
HIV-related stigma appears to be more severe than the stigma associated with other infectious diseases

17. Examples of Discrimination
What are some examples of discrimination?
PMTCT Generic Training Package Module 4, Slide 17

18. Discrimination: Examples
HCW denies services to person who is HIV-infected
Family or village rejects wife and children of man who died from AIDS
Man loses job because people learn he is HIV-infected
Community rejects woman who decides not to breastfeed because they assume she is HIV-infected
HIV-infected clients receive poor care at a clinic because of HCWs’ fears about caring for people infected with HIV

19. HIV: 3 Epidemics Epidemic of HIV Epidemic of AIDS
Epidemic of stigma, discrimination and denial around HIV and AIDS

20. Women and HIV Infection
Numbers of infected women worldwide growing more rapidly than men
Women more vulnerable to HIV than men due to:
Poor access to MCH
Poor access to prevention information and methods
Economic, social inequalities (e.g. unable to negotiate safer sex)
Biological factors
PMTCT Generic Training Package Module 4, Slide 20

21. Women and HIV Infection (Continued)
The woman is often the first person in a couple to be tested for HIV
If found to be positive, may be blamed by her partner for introducing HIV into the family
Implicated in mother-to-child transmission
May experience violence, loss of shelter and economic support
May even lose the support of family, community
All of these reasons may compel a woman to keep her HIV status secret
PMTCT Generic Training Package Module 4, Slide 21

22. Women and HIV Infection (Continued)
Women with HIV may be doubly or triply stigmatized:
As women
As a person living with HIV
As a partner of a person who is HIV-infected or the widow of person who died of AIDS
PMTCT Generic Training Package Module 4, Slide 22

23. Women and HIV Infection (Continued)
The stigma and discrimination associated with women with HIV can limit access to effective prevention, care, treatment and support services
PMTCT Generic Training Package Module 4, Slide 23

24. International Human Rights and HIV Stigma and Discrimination
According to United Nations Commission on Human Rights, discrimination against people living with HIV or thought to be infected is a clear violation of human rights
Freedom from discrimination is a basic human right
PMTCT Generic Training Package Module 4, Slide 24

25. Human Rights in Relation to HIV
All people have a right to make decisions about their sexual and reproductive health
Children have a right to survival, development and health
Women and girls have a right to information about HIV and a way to protect themselves against HIV infection
PMTCT Generic Training Package Module 4, Slide 25

26. Human Rights in Relation to HIV (Continued)
Women have the right to HIV testing and counselling and to know their HIV status
Women have a right to choose not to be tested or to choose not to be told their test result
Women have a right to make decisions about infant feeding, on the basis of full information, and to receive support for the course of action they choose
PMTCT Generic Training Package Module 4, Slide 26

27. Stigma: Actions and Attitudes
A person’s word, action, or belief may be unintentionally stigmatizing toward an individual who is HIV-infected, e.g.:
A person who is against stigmatization may believe people with HIV behave immorally, “deserve what they got,” or are being punished by God
A person who knows HIV cannot be transmitted with casual contact may refuse to buy food from a vendor who is HIV-infected
A person’s behaviours may conflict with their beliefs
PMTCT Generic Training Package Module 4, Slide 27

28. Stigma: Choice of Language
Language is central to stigma
People may not realize they are stigmatizing those with HIV by choosing certain words, for example:
Referring to HIV indirectly: "that disease we learned about"
Calling people with HIV “walking corpses” or “those expected to die”
PMTCT Generic Training Package Module 4, Slide 28

29. Lack of Knowledge → Stigma
Many people lack complete or accurate knowledge about HIV
Many believe an HIV-positive test result = certain death
The fear of death is so powerful that many avoid people suspected to have HIV—even when they know HIV is not transmitted casually
Incomplete knowledge and fear act together to allow stigma to grow
PMTCT Generic Training Package Module 4, Slide 29

30. Shame & Blame Associated with HIV
Stigmatization often focuses on the sexual transmission of HIV
Many assume that people who are HIV-infected:
Must have been infected through sexual activities that are socially or religiously unacceptable
Are unable to control themselves, and are therefore responsible for their infection
PMTCT Generic Training Package Module 4, Slide 30

31. Stigma in Caring Environments
Loving, supportive caregivers may stigmatize and discriminate against people with HIV (e.g., blaming, scolding, saying “those people”)
May not recognize behaviour as stigmatizing
Stigmatizing happens even among individuals opposed to HIV-related stigma (including HCWs)
People can have correct and incorrect information about HIV
PMTCT Generic Training Package Module 4, Slide 31

32. Exercise 4.2 Examples of Stigma and Discrimination: large group discussion
PMTCT Generic Training Package Module 4, Slide 32

33. Stigma and Discrimination: Examples
What are some examples of stigma and/or discrimination in the media?
PMTCT Generic Training Package Module 4, Slide 33

34. Stigma and Discrimination: Examples
In the media:
Suggesting specific groups of people with HIV are guilty (e.g., commercial sex workers or injection drug users) while others are innocent (for example, infants)
Portraying HIV as a death sentence, leading to:
Fear and anxiety
Believing HIV cannot be managed like other chronic diseases
Referring to HIV as, e.g., the “killer disease”
Showing stereotypical gender roles
PMTCT Generic Training Package Module 4, Slide 34

35. Stigma and Discrimination: Examples (Continued)
What are some examples of stigma and/or discrimination in healthcare settings?
PMTCT Generic Training Package Module 4, Slide 35

36. Stigma and Discrimination: Examples (Continued)
In healthcare settings:
Refusing to provide treatment, care, support to PLHIV
Providing poor quality of care for PLHIV
Breaking confidentiality
Providing care in specialized settings (e.g., clinics for people with sexually transmitted infections) can further stigmatize, segregate PLHIV
PMTCT Generic Training Package Module 4, Slide 36

37. Stigma and Discrimination: Examples (Continued)
In healthcare settings, cont’d:
Using infection control procedures (e.g., gloves) only with clients thought to be HIV-infected, rather than with all clients
Advising or insisting PLHIV undergo procedures, (e.g., abortion or sterilization) not routinely suggested for women who are not HIV-infected
PMTCT Generic Training Package Module 4, Slide 37

38. Stigma and Discrimination: Examples (Continued)
What are some examples of stigma and/or discrimination in the workplace?
PMTCT Generic Training Package Module 4, Slide 38

39. Stigma and Discrimination: Examples (Continued)
In the workplace:
Requiring testing before hiring
Refusing to hire people who are HIV-infected and HIV-affected
Requiring periodic HIV testing
Firing someone because of HIV status
Breaking confidentiality
Refusing to work with colleagues who are HIV-infected
PMTCT Generic Training Package Module 4, Slide 39

40. Stigma and Discrimination: Examples (Continued)
What are some examples of stigma and/or discrimination in the
context of religion?
PMTCT Generic Training Package Module 4, Slide 40

41. Stigma and Discrimination: Examples (Continued)
In the context of religion:
Not letting PLHIV participate in funerals and other religious traditions and rituals
Refusing to perform marriage ceremonies for PLHIV
PMTCT Generic Training Package Module 4, Slide 41

42. Stigma and Discrimination: Examples (Continued)
What are some examples of stigma and/or discrimination in the
family and local community?
PMTCT Generic Training Package Module 4, Slide 42

43. Stigma and Discrimination: Examples (Continued)
In the family and local community:
Isolating people who are HIV-infected
Restricting participation of PLHIV in local events
Refusing to allow children who are HIV-infected or HIV-affected to go to local schools
Not including partners and children of PLHIV in activities or gatherings
PMTCT Generic Training Package Module 4, Slide 43

44. Stigma and Discrimination: Examples (Continued)
In the family and local community, cont’d:
Using violence against a partner who has tested HIV-positive
Denying support for grieving family members, including orphans
PMTCT Generic Training Package Module 4, Slide 44

45. What are the effects of stigma?
PMTCT Generic Training Package Module 4, Slide 45

46. 1. Stigma deters disclosure and limits access to services
Effects of Stigma
1. Stigma deters disclosure and limits access to services
Non-disclosure due to fear of response from others  reduced access to support from family, friends, community
Avoidance of health and social services due to fear of unfair treatment/ fear that action would be admission of HIV-status
 increased risk of transmission to partners or children
 limited choice in health care
PMTCT Generic Training Package Module 4, Slide 46

47. Effects of Stigma (Continued)
2. Stigma fuels new HIV infections
May deter people from getting tested
May make people less likely to recognize their risk of infection
May discourage those who are HIV-infected from discussing their HIV status with partners
PMTCT Generic Training Package Module 4, Slide 47

48. Effects of Stigma (Continued)
Fuels new infections, cont’d
May prevent PLHIV from adopting risk-reduction practices that may label them as HIV-infected (e.g., replacement feeding)
May obstruct prevention, treatment, and care programs
PMTCT Generic Training Package Module 4, Slide 48

49. Effects of Stigma (Continued)
Face rumours and gossip
Be told to leave home
Be rejected by partners and community
Be abused physically and/or verbally
3. Stigma can lead to social isolation
PMTCT Generic Training Package Module 4, Slide 49

50. Effects of Stigma (Continued)
Social isolation, cont’d:
People’s emotional response to HIV may influence them more strongly than their knowledge
Someone may shake hands with several people in room but fail to shake hands with person they think “looks like they have AIDS”
Fear of catching HIV may lead someone to require that person with HIV drinks from glass no one else uses
PMTCT Generic Training Package Module 4, Slide 50

51. Effects of Stigma (Continued)
4. Stigma can occur by association (secondary stigma)
For example:
“If I sit near someone with AIDS, others will think that I have AIDS too”
Stigma may extend to family members and family or workers intimately involved in caring for someone with HIV
PMTCT Generic Training Package Module 4, Slide 51

52. Effects of Stigma on Use of PMTCT Services
Women may avoid:
Accessing antenatal care services
Receiving HIV testing  miss opportunity for PMTCT interventions
Discussing HIV test results with partners, families
PMTCT Generic Training Package Module 4, Slide 52

53. Effects of Stigma on Use of PMTCT Services (Continued)
Women may avoid:
Accepting PMTCT interventions e.g., ARV therapy and prophylaxis
Accepting referrals for treatment, care and support
Taking their children for HIV testing
Ensuring their children receive ARV prophylaxis and/or therapy
Using recommended PMTCT safer infant feeding practices (e.g., replacement feeding, exclusive breastfeeding, or early cessation of breastfeeding)
PMTCT Generic Training Package Module 4, Slide 53

54. Session 2
Dealing with Stigma and Discrimination in Healthcare Settings and Communities
PMTCT Generic Training Package Module 4, Slide 54

55. Session 2 Objective
Discuss strategies to address stigma and discrimination in the delivery of PMTCT services.
PMTCT Generic Training Package Module 4, Slide 55

56. Addressing Stigma in PMTCT Programmes
Implement interventions that address HIV-related stigma at all levels:
National
Community
PMTCT Programme
Individual HCW
PMTCT Generic Training Package Module 4, Slide 56

57. National Level Addressing human rights of PLHIV
National policies:
Addressing human rights of PLHIV
Prioritizing HIV-related prevention, treatment, care support services
PMTCT Generic Training Package Module 4, Slide 57

58. National Level (Continued)
High-ranking politicians, other well-known individuals:
May serve as leaders and role models
Advocate for legislation
May engage the media to increase publicity
Promote implementation and enforcement of legislation
Educate and engage the national media
PMTCT Generic Training Package Module 4, Slide 58

59. Community Level
What can we do to address stigma and/or discrimination within our communities?
PMTCT Generic Training Package Module 4, Slide 59

60. Community Level HIV education:
Target media, community members, journalists and HCWs in referring organizations
PMTCT Generic Training Package Module 4, Slide 60

61. Community Level (Continued)
HIV education:
Educational, informational and media campaigns can:
Increase knowledge about HIV
Raise awareness of issues faced by PLHIV
Increase awareness of domestic violence faced by newly-diagnosed women
Communicate that violence against women is inappropriate, immoral, illegal
PMTCT Generic Training Package Module 4, Slide 61

62. Community Level (Continued)
HIV education:
Encourage leaders to make workplaces “HIV-friendly”
Promote PMTCT activities as a central part of HIV prevention, care, treatment
Educate communities about PMTCT interventions, stressing importance of community, family support
Increase referrals to and from PMTCT services
Secure involvement of community members and PLHIV in HIV prevention, education and support programmes
PMTCT Generic Training Package Module 4, Slide 62

63. Community Level (Continued)
Community awareness of PMTCT interventions:
Helps men and women recognize their roles and responsibilities in protecting themselves and their families against HIV
Greater community awareness may strengthen support from the partner and other family members
PMTCT Generic Training Package Module 4, Slide 63

64. Community Level (Continued)
Community partnerships:
Build partnerships with religious, educational, social, civic organizations when developing PMTCT services
Promoting PMTCT services helps develop broad base of support
PMTCT Generic Training Package Module 4, Slide 64

65. Community Level (Continued)
Other community level interventions:
Facilitate exchange of information, ideas among healthcare professionals and other caregivers of PLHIV during roundtable case discussions and social activities
Provide input into curricula for students in healthcare professions (for example, nurses, midwives, physicians)
PMTCT Generic Training Package Module 4, Slide 65

66. PMTCT Service Level
What can we do to address stigma and/or discrimination within our work settings?
PMTCT Generic Training Package Module 4, Slide 66

67. PMTCT Service Level
HCWs and managers of the facilities in which the PMTCT interventions are based can take the lead in challenging long-held community beliefs and practices, including stigmatization of and discrimination against PLHIV and PMTCT clients.
PMTCT Generic Training Package Module 4, Slide 67

68. PMTCT Service Level (Continued)
Role of the PMTCT manager:
Implement, enforce policies & procedures, including on discrimination and confidentiality. Discipline staff in violation.
Ensure staff follow Standard Precautions
Support HIV-infected workers to continue to work
Implement policies guaranteeing clients equal treatment
Give clients a confidential means of reporting discrimination
PMTCT Generic Training Package Module 4, Slide 68

69. PMTCT Service Level (Continued)
Integrate PMTCT into MCH
Integrate all PMTCT interventions into maternal child health (MCH) care services for all women
Offer HIV screening to all pregnant or clinic attendees who have recently delivered
Include HIV services as part of routine MCH services to help normalize HIV care and treatment
PMTCT Generic Training Package Module 4, Slide 69

70. PMTCT Service Level (Continued)
Encourage participation of male partners
Educate partners about PMTCT interventions
Stress importance of partner testing, partner and family support for PMTCT
When male partners do not normally attend ANC clinics, PMTCT service should reach out to them in male-friendly settings, e.g., workplaces, barbershops, taxi stands, stadiums
PMTCT Generic Training Package Module 4, Slide 70

71. PMTCT Service Level (Continued)
Provide educational sessions
Group or individual education sessions (on-site and off-site) can help draw attention to the role partners play in HIV transmission
Couple counselling offers another opportunity to:
Emphasize couple's shared responsibility for HIV prevention and PMTCT
Reduce the blame that can be directed at women
PMTCT Generic Training Package Module 4, Slide 71

72. PMTCT Service Level (Continued)
Train healthcare workers
PMTCT programme success or failure depends on attitudes, skills, experience of HCWs
Training should include:
Complete and accurate information about transmission of and risks factors for HIV
Activities addressing HIV-related stigma
Educational initiatives should address employee attitudes, correct misinformation, teach clinical skills
PMTCT Generic Training Package Module 4, Slide 72

73. PMTCT Service Level (Continued)
Involve PLHIV in PMTCT services
Ensures PMTCT services better meet needs of clients
Involve PLHIV as:
Volunteers or paid staff
Peer counsellors
Support group facilitators
Peer buddies
Citizens’ advisory bureau representatives
Reviewers for training curricula, care guidelines
PMTCT Generic Training Package Module 4, Slide 73

74. PMTCT Service Level (Continued)
Engage peer and community support
Mentoring programmes for HIV-infected pregnant women
Lead to better understanding and acceptance of PMTCT interventions
Mothers who are HIV-infected and have recently given birth return to ANC facility to educate, counsel, support peers
Share personal experiences to encourage adherence; help with infant feeding decisions, negotiating care
Peer support for PLHIV
PLHIV provide friendship, companionship and advice to client
PMTCT Generic Training Package Module 4, Slide 74

75. PMTCT Service Level (Continued)
Ensure infection control
Provide all HCWs with necessary equipment and supplies to adhere to infection control policies, prevent transmission of HIV
Teach HCWs to use Standard Precautions with all clients, regardless of assumed or established HIV status
PMTCT Generic Training Package Module 4, Slide 75

76. PMTCT Service Level (Continued)
Protect client confidentiality
Develop & implement confidentiality policies, procedures
Include directions on how to record and securely store client information
Ensure medical files (paper or electronic) are not labelled to reveal HIV status
Ensure all client consultations, from initial contact with receptionist to the healthcare provider, respect personal information
PMTCT Generic Training Package Module 4, Slide 76

77. Individual HCWs
What can we, as individuals, do to address stigma and/or discrimination?
PMTCT Generic Training Package Module 4, Slide 77

78. Individual HCWs Serve as role models
Treat PLHIV same as clients assumed to be HIV-negative
Be aware of own feelings, thoughts, attitudes about HIV
Ensure feelings, thoughts, attitudes do not have negative effect on care provided
PMTCT Generic Training Package Module 4, Slide 78

79. Individual HCWs (Continued)
Know the local community
Identify local HIV-related stereotypes and discrimination
Address misconceptions at appropriate times during service delivery
PMTCT Generic Training Package Module 4, Slide 79

80. Individual HCWs (Continued)
Advocate for women’s rights
Ensure HIV-infected women know their rights and where to get help to challenge discrimination
PMTCT Generic Training Package Module 4, Slide 80

81. Individual HCWs (Continued)
Provide counselling and education for PLHIV
Encourage, empower and support PLHIV to live positively with HIV
Help PLHIV disclose HIV status to family and friends
Goal: PLHIV to be viewed as ordinary community members encouraging community acceptance of PLHIV
PMTCT Generic Training Package Module 4, Slide 81

82. Exercise 4.3 PLHIV Panel
PMTCT Generic Training Package Module 4, Slide 82

83. Key Points
While stigma reflects an attitude, discrimination is an act or behaviour.
Stigma and discrimination are related. Stigmatizing thoughts can lead to discrimination and human rights violations.
International and national human rights declarations affirm that all people have the right to be free from discrimination based on HIV status.
PMTCT Generic Training Package Module 4, Slide 83

84. Key Points (Continued)
Healthcare workers have a responsibility to respect the rights of all women and men, regardless of their HIV status.
PMTCT Generic Training Package Module 4, Slide 84

85. Key Points (Continued)
As a result of HIV-related stigma and discrimination, women may avoid:
Accessing antenatal care services
Receiving HIV testing
Disclosing their HIV test results
Accepting PMTCT interventions
Accepting referrals to care, treatment and support services
Using recommended PMTCT safer infant feeding practices
PMTCT Generic Training Package Module 4, Slide 85

86. Key Points (Continued)
Stigma must be addressed at all levels including global, national, community, programme and individual. It is essential that PMTCT programmes collaborate with community leaders to address HIV-related stigma and discrimination that affects uptake of PMTCT services.
HCWs are role models. PMTCT staff should treat PLHIV as they would clients assumed to be HIV-negative.
PMTCT Generic Training Package Module 4, Slide 86

87. Key Points (Continued)
PLHIV can become involved in PMTCT services in any number of ways, as volunteers or paid staff, depending on their skill level and interests.
PMTCT staff should promote partner participation in PMTCT interventions and community support of PLHIV and their families.
PMTCT Generic Training Package Module 4, Slide 87