Transcript Stigma - NCASC

Module 4
Stigma and Discrimination
Related to MTCT
Exercise 4.1
Labels Group Game
PMTCT Generic Training Package
Module 4, Slide 2
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
Session 1
Concepts of Stigma and
Discrimination
PMTCT Generic Training Package
Module 4, Slide 4
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
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
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
Stigma: Definition
What is stigma?
PMTCT Generic Training Package
Module 4, Slide 8
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
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
Examples of Stigma
What are some examples of stigma?
PMTCT Generic Training Package
Module 4, Slide 11
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
Discrimination: Definition
What is discrimination?
PMTCT Generic Training Package
Module 4, Slide 13
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
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
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
Examples of Discrimination
What are some examples of
discrimination?
PMTCT Generic Training Package
Module 4, Slide 17
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
HIV: 3 Epidemics
1.
Epidemic of HIV
2.
Epidemic of AIDS
3.
Epidemic of stigma, discrimination and denial
around HIV and AIDS
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
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
Women and HIV Infection (Continued)

Women with HIV may be doubly or triply stigmatized:
1. As women
2. As a person living with HIV
3. 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
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
International Human Rights and
HIV Stigma and Discrimination
Freedom from discrimination is a
basic human right
 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
PMTCT Generic Training Package
Module 4, Slide 24
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
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
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 HIVinfected
A person’s behaviours may conflict with their beliefs
PMTCT Generic Training Package
Module 4, Slide 27
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
Lack of Knowledge → Stigma
Incomplete knowledge and fear act
together to allow stigma to grow
 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
PMTCT Generic Training Package
Module 4, Slide 29
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
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
Exercise 4.2
Examples of Stigma and
Discrimination: large group
discussion
PMTCT Generic Training Package
Module 4, Slide 32
Stigma and Discrimination:
Examples
What are some examples of stigma and/or
discrimination in the media?
PMTCT Generic Training Package
Module 4, Slide 33
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
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
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
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
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
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
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
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
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
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
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
Effects of Stigma
What are the effects of stigma?
PMTCT Generic Training Package
Module 4, Slide 45
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
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
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
Effects of Stigma
(Continued)
3. Stigma can lead to social
isolation
 Face rumours and gossip
 Be told to leave home
 Be rejected by partners and community
 Be abused physically and/or verbally
PMTCT Generic Training Package
Module 4, Slide 49
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
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
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
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
Session 2
Dealing with Stigma and
Discrimination in Healthcare Settings
and Communities
PMTCT Generic Training Package
Module 4, Slide 54
Session 2 Objective
 Discuss strategies to address stigma and discrimination
in the delivery of PMTCT services.
PMTCT Generic Training Package
Module 4, Slide 55
Addressing Stigma in PMTCT
Programmes
 Implement interventions that address HIV-related
stigma at all levels:
Individual
HCW
PMTCT
Programme
Community
National
PMTCT Generic Training Package
Module 4, Slide 56
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
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
Community Level
What can we do to address stigma
and/or discrimination within our
communities?
PMTCT Generic Training Package
Module 4, Slide 59
Community Level
HIV education:
 Target media, community members,
journalists and
HCWs in referring organizations
PMTCT Generic Training Package
Module 4, Slide 60
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
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
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
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
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
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
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
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
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
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
PMTCT Service Level
(Continued)
 Provide educational sessions
 Group or individual education sessions (on-site and offsite) 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
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
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
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
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
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
Individual HCWs
What can we, as individuals, do to
address stigma and/or discrimination?
PMTCT Generic Training Package
Module 4, Slide 77
Individual HCWs
1. Serve as role models
 Treat PLHIV same as clients assumed to be HIVnegative
 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
Individual HCWs
(Continued)
2. 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
Individual HCWs
(Continued)
3. 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
Individual HCWs
(Continued)
4. 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
Exercise 4.3
PLHIV Panel
PMTCT Generic Training Package
Module 4, Slide 82
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
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
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
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
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