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Module 4. Stigma and Discrimination Related to MTCT. Exercise 4.1 Labels Group Game. Module Objectives. Identify HIV-related stigma and discrimination. Discuss the impact of stigma and discrimination on people living with HIV (PLHIV).

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Module 4

Stigma and Discrimination Related to MTCT


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PMTCT Generic Training Package Module 4, Slide 2


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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


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Session 1

  • Concepts of Stigma and Discrimination

PMTCT Generic Training Package Module 4, Slide 4


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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


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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


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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


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Stigma: Definition

  • What is stigma?

PMTCT Generic Training Package Module 4, Slide 8


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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


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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


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Examples of Stigma

  • What are some examples of stigma?

PMTCT Generic Training Package Module 4, Slide 11


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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


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Discrimination: Definition

  • What is discrimination?

PMTCT Generic Training Package Module 4, Slide 13


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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


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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


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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


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Examples of Discrimination

  • What are some examples of discrimination?

PMTCT Generic Training Package Module 4, Slide 17


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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


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HIV: 3 Epidemics

Epidemic of HIV

Epidemic of AIDS

Epidemic of stigma, discrimination and denial around HIV and AIDS


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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


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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


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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


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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


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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


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Human Rights in Relationto 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


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Human Rights in Relationto 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


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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


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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


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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


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Shame & Blame Associatedwith 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


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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


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  • Exercise 4.2 Examples of Stigma and Discrimination: large group discussion

PMTCT Generic Training Package Module 4, Slide 32


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Stigma and Discrimination: Examples

  • What are some examples of stigma and/or discrimination in the media?

PMTCT Generic Training Package Module 4, Slide 33


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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


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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


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Stigma and Discrimination: Examples (Continued)

  • In healthcare settings:

  • Refusing to provide treatment, care, support to PLHIV

  • Providing poor quality of carefor 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


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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


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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


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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


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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


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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


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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


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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


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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


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Effects of Stigma

  • What are the effects of stigma?

PMTCT Generic Training Package Module 4, Slide 45


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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


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Effects of Stigma (Continued)

  • 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

2. Stigma fuels new HIV infections

PMTCT Generic Training Package Module 4, Slide 47


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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


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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


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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


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Effects of Stigma (Continued)

  • 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

4. Stigma can occur by association (secondary stigma)

PMTCT Generic Training Package Module 4, Slide 51


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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


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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


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Session 2

  • Dealing with Stigma and Discrimination in Healthcare Settings and Communities

PMTCT Generic Training Package Module 4, Slide 54


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Session 2 Objective

  • Discuss strategies to address stigma and discrimination in the delivery of PMTCT services.

PMTCT Generic Training Package Module 4, Slide 55


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Individual HCW

PMTCT Programme

Community

National

Addressing Stigma in PMTCT Programmes

  • Implement interventions that address HIV-related stigma at all levels:

PMTCT Generic Training Package Module 4, Slide 56


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National Level

  • National policies:

    • Addressing human rights of PLHIV

    • Prioritizing HIV-related prevention, treatment, care support services

PMTCT Generic Training Package Module 4, Slide 57


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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


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Community Level

What can we do to address stigma and/or discrimination within our communities?

PMTCT Generic Training Package Module 4, Slide 59


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Community Level

  • HIV education:

    • Target media, community members, journalists and HCWs in referring organizations

PMTCT Generic Training Package Module 4, Slide 60


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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


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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


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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


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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


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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


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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


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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


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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


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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


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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


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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 offersanother opportunity to:

      • Emphasize couple's sharedresponsibility for HIV prevention and PMTCT

      • Reduce the blame that can be directed at women

PMTCT Generic Training Package Module 4, Slide 71


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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


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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


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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


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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


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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


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Individual HCWs

What can we, as individuals, do to address stigma and/or discrimination?

PMTCT Generic Training Package Module 4, Slide 77


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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


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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


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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


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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


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PMTCT Generic Training Package Module 4, Slide 82


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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


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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


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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


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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


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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


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