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Learning to Work with Orphans
and Vulnerable Children
A Project of the Social Work
HIV/AIDS Partnership for Orphans
and Vulnerable Children in Tanzania
Day 7
Helping HIV Infected and
Affected Children and Families
Social Work Process for Working
with Most Vulnerable Children and
their Families
1. Identifying Vulnerable Children and their
Families
2. Engaging Vulnerable Children and Families
3. Assessing the Strengths and Needs of
Vulnerable Children and their Families
4. Developing a Plan of Services for Vulnerable
Children and their Families
Social Work Process for Working with
Orphans and Vulnerable Children Affected by
HIV
5. Implementing the Plan of Services
• Identifying and Referral to Other Resources
• Providing direct services: problem solving,
support and coordination
• Empowering and supporting caregivers
• Addressing HIV related prevention and care
concerns
6. Evaluating Progress, Revising Service Plan and
Following Up Through Ongoing Case
Management, Family Support And Advocacy
Objectives
At the end of this day, Para Social Workers will be able to:
• Demonstrate knowledge of the basic facts of HIV
infection from acute infection to end of life
• Describe the context of HIV in Tanzania, Sub
Saharan Africa and the world
• Demonstrate basic knowledge of HIV Prevention,
Counseling and Testing from the perspective of the
Para Social Worker
Objectives, continued
•
•
Demonstrate basic knowledge of Prevention
of Mother to Child Transmission of HIV from
pregnancy through breast feeding from the
context of the Para Social Worker
Demonstrate a basic knowledge of HIV
treatment and the Para Social Work skills
required to support adherence and prevention
for people living with HIV/AIDS
The Basic Facts of HIV as it Affects
Tanzania and the World
The Definition of HIV
• H
Human - because this virus can only infect
human beings
• I
Immuno-deficiency - because the effect of the
virus is to create a deficiency, a failure to work
properly, within the body’s immune system.
• V Virus - because this organism is a virus, which
means one of its characteristics is that it is not
capable of reproducing by itself. It reproduces by
taking over the machinery of the human cell.
The Definition of AIDS
•
•
A
I
Acquired
Immune
•
D
Deficiency
•
S
Syndrome
is acquired or becomes infected with
destroys the body’s immune system,
which usually works to fight off
disease
makes the immune system not work
properly
a wide range of different diseases
and opportunistic infections
Acquired Immune Deficiency Syndrome
AIDS is part of the spectrum of HIV, defined as end
stage disease.
AIDS is symptomatic and, unless treated aggressively,
leads to death
HIV/AIDS – Test Your Knowledge
True
False
Condoms can prevent HIV transmission
True
False
Medication given to mother and child
during birth can reduce transmission
True
False
ART cures HIV
True
False
True
False
True
False
True
False
True
False
ART can be stopped when your CD4 count
improves
HIV can be spread from the mother to child
during birth
Breastfeeding protects a baby against HIV
An HIV positive man cannot have sex with
an HIV negative woman safely
It is safe to work with, eat with or go to
school with a person who is HIV positive
Exercise
• Talk with the person next to you
• Make a list of
• The ways HIV can be transmitted
• The ways people think HIV can be transmitted
that are not true (HIV CANNOT be
transmitted)
Common Modes Of HIV/AIDS
Transmission
•
•
•
•
The main mode of transmission is sexual.
Mother to Child
Blood transfusion
Sharing of sharp objects contaminated with
infected blood (tattooing, genital cutting)
HIV Stage with progressive deterioration of immune system –
symptoms can occur in HIV and depend on general health state of
the PLWHIV and other factors
HIV/AIDS Progression stages
Acute
Pre
SeroAsymptomatic
Infection Infection Conversion Period
ART stops
progression
Periodic
Health
Problems
Development
of more
severe Health
Problems
Stages of Progression: HIV/AIDS
HIV INFECTION
ART
AIDS
Deterioration of CD4 Cells (T Cells) over the Course of the Disease, 10-12 years
1500
350
CD4 Cells (T Cells)
200
0
Definition of Terms
• Viral Load= the amount of virus your body produces
every day
• CD4 cells or T Cell= the cells of the immune system
destroyed by HIV. Normal CD4 is 600 to 1500. As the
disease progresses, CD4 goes down to 0.
• ARV or ART Anti-retroviral therapy= a triple
combination of drugs of 3 classes usually as one
combined pill
• Epidemic= outbreak of disease bigger than usual
• Pandemic= a worldwide epidemic of disease
• Opportunistic Infection= the diseases that occur once
the immune system of an HIV positive person is
destroyed by HIV. There are 29 diseases designated as
opportunistic for HIV/AIDS
The Progression of Disease
•
•
•
Initial infection may present as a flu-like
syndrome or may not have symptoms
HIV is usually symptomless, people with HIV
look and feel well. This stage may last for
many years
HIV can be transmitted from one person to
another AT ANY STAGE of the DISEASE unless
primary and (prevention for positive
(secondary prevention) is practiced
The Progression of Disease
•
•
•
If treated with ARVs, HIV transmission is
reduced significantly
If treated effectively, people with HIV can live a
normal life span and HIV becomes a chronic
disease like diabetes or asthma
If untreated, HIV progresses to AIDS, the life
threatening form of the disease and the
probability of transmission increases
HIV/AIDS Epidemic - 2009
Global
•
•
•
•
2.6 million new infections in 2009
33.3 million living with HIV worldwide
1.8 million died of AIDS in 2009
17 million orphans as a result of HIV/AIDS
Sub-Saharan Africa
•
•
•
•
22.5 million living with HIV
1.8 million new infections
1.3 million died of AIDS in 2009
90% of infected children and newly infected
children reside in Sub-Saharan Africa
HIV and Life Expectancy in
Tanzania
• In 1991, the life expectancy in Tanzania for
women was 54 years and 53 years for men
• In 2009 LIFE EXPECTANCY is 48 years and AIDS is
the leading cause of death
Sources: Countryfacts Information Courtesy: CIA Worldbook, 2011; USAID.
Sub-Sahara Africa. http://www.usaid.gov/locations/subsaharan_africa/countries/tanzania/index.html (downloaded July 20, 2011)
HIV/AIDS Situation in Tanzania
• 1.4 million people were estimated to be living
with HIV/AIDS in Tanzania by the end of 2009
• The overall HIV adult prevalence in Tanzania is
5.7% of adults - more than 1 in 20 persons is
HIV positive; prevalence for women 6.6%. 4.6%
men. Urban prevalence is 8.7% (2008 data –
GoT)
• 200,000 children between the ages of 0 - 14
years were estimated to be living with HIV/AIDS
(2009 GoT)
Social Factors Contributing to
HIV/AIDS Infection
• Economic
• Poverty
• Urbanization and lack of support network in urban
environments
• Social
• Multiple sex partners
• Alcohol intoxication
• Drug and substance abuse
• Sexual exploitation of women
• Stigma and disclosure
• Cultural
• Sexual violence, rape and exploitation
• Early sexual initiation
• Inheritance of widows
HIV Transmission in Tanzania
• Contributing factors
• Multiple sex partners
• Early sexual initiation
• Low levels of condom use
• Unknown HIV status
• Lack of information about sexual health
• High levels of other sexually transmitted
diseases
The Biggest Risk Factor for the
Transmission of HIV
• In 2008, women comprised over 60 percent of
people living with HIV. Among the 15-24 age
group, this figure rises to 75 percent.
• Women who are married having unprotected sex
with only their husband are still at risk
• In fact the most common transmission source for
women in Tanzania may be husbands who have
had sexual contact with others.
Source: TACAIDS (2008, November) ‘Tanzania HIV/AIDS and
Malaria Indicator Survey 2007-2008
Sexual Protection
Remember:
When you have unprotected sex, you are
ALSO having sex with all the partners of
your partner
HIV Prevention, Counseling and Testing
How to Prevent HIV
•
•
•
•
•
•
Abstinence
Be faithful
Condoms
Delay sex
Prevention of mother to child transmission
Treat all other sexually transmitted infections
Education about HIV is needed for all of these!
Primary Prevention Strategies
• Behaviour Change
Risk Assessment
•
•
•
•
•
Do you mind if I ask you some questions about your
health? This will include your sexual health.
Are you sexually active---do you have sexual or
intimate contact with another man or woman? If yes,
with men, women or both?
Do you take disease precautions? If yes, explain. If
not, why not?
Do you take any recreational drugs that involve
needle transmission? If yes do you share needles?
How do you clean them?
Do you have any questions you would like to ask me
about your sexual health, AIDS or sexually
transmitted diseases?
Source, Linsk, 2000
Strategies to Address HIV
Prevention
• REDUCE STIGMA. Stigma may get in the way or
reducing risk behaviours.
• Decrease use of alcohol and other drugs that
affect normal behavior
• Know your HIV status
How does VCT help people?
How does VCT help link to services
Brainstorm
Voluntary HIV Counseling and
Testing
• VCT is a vital point of entry to other HIV/AIDS
services including
• Prevention of mother-to-child transmission
• Prevention and clinical management of HIV
related illnesses and treatment of
tuberculosis
• Psychosocial and legal support
• Facilitates early referral for care and support
including access to anti-retroviral therapy
(ART)
Voluntary Counseling and Testing
(VCT)
• Good voluntary HIV counseling assists people to:
• Learn their HIV status and make informed
decisions
• Explore, assess and alter risky behaviours
• Cope better with their health condition(s)
• Lead more positive lives and plan for the future
• Help HIV infected people protect their sexual
partners and families
• Help learn best practices of disclosure in the
social and cultural context
Rapid Testing for HIV
• Current testing model:
• Blood from a finger stick (or saliva) is tested
in ten minutes.
• Results are obtained in about the same
amount of time as a pregnancy test. Results
are also confirmed rapidly.
• Safer sex techniques and linkage to care
must be discussed by the counselor.
The Role of the Para Social Worker in
VCT
• Encourage people of unknown status to test,
especially women of child bearing age
• Develop couple and family support (e.g. husband
for wife for testing) and encourage positive living
• Help with the access to testing (transportation,
peer support, etc)
• Encourage results disclosure and help to support
the communication process safely and positively
The Role of the PSW in VCT
• Support people during the process of testing and of
understanding the results
• Make sure that post test counseling is provided for
positive and negative
• Support the process of behaviour change for people
engaging in high risk practices
• Multiple sex partners
• Early sexual initiation
• Risky sexual behaviours
• Unsafe sex practices
• Men who have sex with men
• Intravenous drug usage and other illicit drug use
Family and Community Support of
Prevention of Transmission of HIV from
Mother-to-Child (PMTCT), Family and
Community
The Basic Facts of Prevention of
Mother-to-Child Transmission of HIV
• HIV is transmitted from mother to baby during the
process of pregnancy, child birth and
breastfeeding
• HIV transmission during can be decreased to
very low level (<2%) with treatment of mother and
baby as early as possible
Route of Transmission:
Mother to Child
5% to10% infants
infected during
pregnancy
Overall 20% to
45% infants will
be HIV- infected
if there is no
intervention
5% to
20%
infants
infected
during
breast
feeding
10% to 15% during
labour and delivery
The Role of Para Social Workers with
HIV Positive Mothers
• Know the facts of Prevention of Mother-to-Child
Transmission
• Para Social Workers can help mothers to protect
baby from the infection
• Encourage mothers to get treated
• Counsel women to plan pregnancy, childbirth and
breastfeeding
• Support women in HIV care, support their families
to encourage HIV care
• Provide information on safe baby feeding and baby
care
The Role of the Para Social
Worker: Pregnancy
• Work with families to support HIV positive women,
their babies and their families
• Help mothers to plan pregnancy and birth to prevent
transmission
• Link pregnant mothers to care providers as early in
pregnancy as possible
• Help pregnant mothers to know their HIV status and
to get prenatal care and HIV treatment according to
national guidelines
• Help pregnant mothers to get family support for
testing, prenatal care and HIV care during
Prevention of Mother to Child
Transmission: Child Birth
• ART treatment during birth can prevent
transmission to the baby This birth must occur in a
clinic or a hospital.
• Women should learn their HIV status as early as
possible
• Effective treatment can lessen transmission
significantly
PSW Roles: Child Birth
• PSWs should support medically appropriate care
for pregnant women, women giving birth and
women who are breastfeeding
• Support the family, when facing the double
stressors of child birth and HIV diagnosis
simultaneously. Many complex family situations
can erupt during this high stress period
• Help the medical staff communicate complicated
medical knowledge to the mother and family in a
form that both can understand quickly. Time is
very important. THINK EMERGENCY
PSW Roles: Child Birth
• Knowledge of the current PMTCT protocol is
required to help women understand what the
doctors are telling them.
• Support can include a variety of factors such as:
• Mobilizing timely transportation
• Testing and ARV treatment protocol
acceptance
• Overcoming barriers to hospital birth
Deciding Whether to Breast or Bottle
Feed for Positive Mothers
• During the first two months, a bottle-fed baby is
nearly six times more likely to die from diarrhea,
respiratory or other infections, compared to a
breastfed child
• This is mostly because contaminated water is
used in mixing the formula, bottles are unclean or
formula is not sufficient for infant growth
• Switching between breast and bottle feeding
increases the possibility of illness and HIV
transmission
Deciding Whether to Breast or Bottle
Feed for Positive Mothers
• Cultural practices support breast feeding
• If babies are NOT breast fed, people may question
your HIV status and expose both women and baby
to danger, to exclusion or other stigmatization
• Exclusive breastfeeding for the first 6 months
unless replacement feeding is AFASS
•
•
•
•
•
Acceptable
Feasible
Affordable
Sustainable
Safe
Breast Feeding Guidelines for
Positive Women
Where breastfeeding is judged to be the best option:
•
•
Exclusively breastfeed for the first 6 months, then
introduce appropriate additional food and continue
breastfeeding for 12 months. Wean gradually and
continue to treat for at least 1 week after contact
with breast milk.
At 6 months, continue breastfeeding with additional
complementary food if AFASS is not met. Wean
within a period ranging from about 2−3 days to 2−3
weeks
The Role of the Para Social Worker
in Feeding Decision Making
• Help the Mother and the Family to understand
the facts of breastfeeding for positive mothers
• Make sure that the Mother understands the
procedures required for safe breast feeding,
including ARV treatment for herself and her
infant
• Help mothers to get medical care for breast
problems, along with sores or thrush in an
infant’s mouth
• Help the family to understand the importance of
safe feeding practices for HIV positive mothers
HIV/AIDS Medications
Access to Health Services
Other Illnesses Related to HIV
HIV Treatment: The Basic Facts for
Para Social Workers
• HIV is treatable but cannot be cured
• HIV treatment requires at least three drugs
usually taken in combination
• Side effects are manageable by working with the
health provider
• If HIV medicine is not adhered to at a 90-95%
level, HIV treatment will become progressively
less effective
• Once people start HIV medicine, they cannot stop
without risking their health and survival and that of
others
Goals of Antiretroviral Therapy
1. Reduce
2.
3.
4.
5.
6.
number of viruses in the body to
undetectable level (<50 per mm3)
Restore and/or preserve immune function
Improve quality of life
Reduce HIV-related illnesses
Minimize drug resistance– when the virus mutates
so the drug class is no longer effective
Prevent opportunistic infections with a variety of
medicines which can create better health and
improve survival
Issues of Anti-Retroviral Treatment
1. Most side effects go away after a few weeks. If
not need to contact health provider
2. Medicine is for the lifetime, unless in cases of
serious side effects, e.g damage of nervous
system
3. HIV medication requires balanced diet that
basically can not be afforded by majority of
Tanzanians
4. This can involve a lot of pills and complicated
dosing schedules
HIV Resistance
• Resistance means the virus no longer responds to
the medicine
• Resistance is generally associated with not adhering
to the medicine.
• If the person not adhere to HIV treatment
• If the person loses access to HIV treatment
because of institutional or other structural barriers
• Resistant virus may be transmitted to others through
unsafe sex or other risky behaviors or from mother
to child
• Resistant virus is much harder and more expensive
to treat
Adherence Definition
Adherence means taking the ARV doses at the
right time, in the right amount at least 90-95% of
the time
Non-adherence may include Missing Doses,
Under dosing consistently, Overdosing, Taking
the drug only occasionally like when you feel
bad, etc.
The use of Anti-Retroviral Medicine
• Assessing readiness to adhere (follow through
on medications)
• Access to medications and ongoing medical
care
• Providing support to take medication
• Developing plan to ensure follow-through
• Issues of disclosure
• Recognizing and sustaining success
• Troubleshooting problems
Assessing Readiness:
Adherence to regimens
• Is treatment medically appropriate?
• Is patient ready to take on drug regimen
• Will person be able to take medication correctly
(90-95% of the time)
• How can we support successful ARV adherence
What About Missing Doses?
•
•
•
•
Does this occur with your clients?
Does this happen when you take medicine?
Are people willing to admit to missing doses?
What are the consequences of missing doses?
• Actual
• Feared
Missing Doses (continued)
• How does it feel to miss a dose?
• Is this a
• Mistake or error?
• A common occurrence that happens to
everyone
• Something to be embarrassed or ashamed of
• Other?
• What does missing something, losing something,
or forgetting something mean in Tanzanian
culture or a specific culture?
• What does making an error or mistake mean in
specific cultures?
64
Reframing Missing Doses?
• Missing a medication dose happens to everyone
(normalize)
• Missing a dose should help us learn how to avoid
this in the future
• Missing a single dose will not usually lead to
problems.
• Telling the caregiver or provider about missed
doses is a way to help yourself and others.
What is the Role of the Para-social
Worker in Supporting Taking HIV
Medications?
Brainstorm
What is the Role of the Para Social Worker
in Supporting Taking HIV Medications
• Helping the person with HIV decide if they are
ready to take the medications
• Helping to develop routines to take the medication
regularly
• Helping with access to care and treatment and
refills of medications
• Assisting the person or their family to solve
personal, familial or social problems relating to
medication adherence
What is the Role of the Para Social Worker
in Supporting Taking HIV Medications,
continued
• Advocate for access to care and treatment
• Communicate between the health workers and
the Person Living with HIV, (PLWHIV) the family
and the community
• Help the PLWHIV to understand that his/her
general health is very important as is regular
medical care
What is the Role of the Para Social Worker
in Supporting Taking HIV Medications,
continued
• Help the PLWHIV to understand the importance of
nutrition and to solve issues of food insecurity
• Help the person understand that smoking, alcohol,
other drugs and high level sexual activity work
against HIV treatment
• Help the PLWHIV to solve logistical issues such as
how to maintain a constant and consistent supply
of ARVs according to the current treatment
protocol
What is the Role of the Para Social Worker
in Supporting Taking HIV Medications,
continued
• Help the client understand HIV adherence and to
how to adhere through
• Family support
• Medical system support
• Supporting the treatment and management of
side effects to prevent non adherence
• Ongoing treatment education and support
What is the Role of the Para Social Worker
in Supporting Adherence with Health
Providers?
• Helping the provider to understand the psychosocial
state of the patient
• Helping the provider to understand the knowledge of
HIV care and treatment from the patient perspective
• Helping the provider to understand the family,
community and local structural support for treatment
adherence
• language, distance, access to care, culture of care
• Helping the provider to problem solve other issues:
side effects, treatment fatigue
How Para Social Workers Help Families
with HIV Infected Children
• Help children to understand that they have a good and
long term future if they adhere to treatment as
appropriate
• Help to acquire needed resources
• Financial support
• Housing and nutrition
• Education
• Transportation
• Access to health care
• Provide HIV education to increase understanding of how
to provide support and reduce stigma
• Coordinate needed services and referrals
Addressing Other Illnesses
Accompanying HIV (Co-morbidities)
• Co-morbid infection including TB and malaria and
hepatitis need to be treated
• Sexually Transmitted Infections need to be treated
• Opportunistic infections are illnesses that HIV positive
people contract due to their weakened immune
system.
• Opportunistic infections can be prevented and
sickness and death SIGNIFICANTLY reduced using
medication with simple, easily available, cheap drugs
• However HIV positive people need ongoing care to
access these treatments.
Role of Para Social Worker with
Other Illnesses
• Help obtain access to, understanding of and
linkage to ongoing medical care for HIV care.
• Ensure that PLWHIV obtain regular and
systematic checkups.
• Support needed changes in culture to ensure
ongoing medical care for PLWHIV
What a Para Social Needs to Know
about Prevention for Positives
Basic Facts: Prevention for HIV Positive
Patients
Prevention for Positives means the positive
person reduces risky behaviors to ensure they
do not infect others.
• Infected people can have sex, but it must always
be with effective protection
• Effective HIV treatment reduces the viral load of
a treated person, but even with excellent
treatment, condoms MUST be used to protect
yourself and your partner
Basic Facts: Prevention for HIV
Positive Patients
• Effective HIV Treatment is one of the best
possible means of secondary prevention because
a very low (undetectable) virus level means the
person is less likely to transmit the virus
• Infected person needs to be sure they do not use
needles or engage in harmful practices they may
lead to blood transmission
Basic Facts: Prevention for
Positives
• Prevents risk of HIV transmission
• Prevents new infections with another form of HIV
• Prevents exposure to sexually transmitted
infections
• Prevents exposure to blood-borne diseases, eg
hepatitis
• Increases bonds of trust and love between
discordant couples
• Eases stress, normalizing sexual relationships
and related behaviors
Summary: Key Issues for Para Social
Workers to Emphasize to PLWHIVs
• HIV treatment is a limited resource which must be
guarded and respected
• Once ART medicine is started, it must go on for a
lifetime
• ALL drugs must be taken as prescribed
• HIV treatment affects the person with HIV, his or her
family and others who are providing help
• PLHIV must know that they should discuss
EVERYTHING including home remedies taken by the
patient with the doctor to be sure that there are not
bad drug/drug interactions
Summary: Key Issues for Para Social
Workers to Emphasize to PLWHIVs
•
•
•
•
•
HIV treatment side effects must be managed in
advance to prevent interruption in taking medication
The long term adherence to HIV treatment requires
personal social support which will change over time
Prevention for PLWHIV will preserve the
effectiveness of current HIV treatment
Adherence requires community and national
advocacy for access to care
100% of people requiring HIV treatment should
receive it effectively, ESPECIALLY child-bearing
women, children and youth.
HIV’s Long Term Consequences:
Disclosure, Negotiation, End of Life
Planning
Basic Facts: HIV and Long Term
Effects
• If treated appropriately with effective medicine as
early as possible to preserve immune function
HIV positive people can live normal life spans.
• HIV treatment requires life long access to HIV
treatment, to medical care and assessment and
to the support required for a long term chronic
illness including permanent access to ART
medication and familial, psychosocial and
community support
Basic Facts: Long Term Effects of
HIV
• Taking medication for long-term is challenging to
people with HIV (treatment exhaustion)
• Even with good treatment, other diseases may
progress and affect health and survival
• Issues of who to tell about HIV become more
prominent over time
• Issues of life planning with partners and family
often occur with long term HIV infection
• Planning for life
• Planning for the end of life
Long Term Effects of HIV Infection
and Treatment in the Family
• Family support for positive members is required
to maintain treatment environment and to
prevent infection
• Families of HIV positive patients may experience
stigma as does the infected member.
Stigmatized families require psychosocial
support and HIV education
• Even if the family member is treated, treatment
may eventually become less effective,
increasing the care giving and emotional
burdens in the family.
HIV: The Way Forward
The Roadmap to an HIV Free Tanzania
The Roadmap to an AIDS Free Tanzania
Treatment
•Treat all
infected
children
•100%
access to
PMTCT+
•Treat 100%
of people
eligible for
treatment
•Maintain
good ARV
adherence
•Treat comorbidities
•TB
•STIs
Primary Prevention
• Abstinence
• Be faithful
• CONDOMS
• Circumcision
• Delay sexual initiation
• Treat sexually transmitted infections
• Test early and often
• Support vulnerable children, women and
families
• Educate men, women and youth
• Eliminate the exploitation of women
• Rape
PEP
• Sex trade
• Early marriage
Prevention
for Positives
• Safer sex
• Reduce
number of
sexual contacts
• Prevention of
Mother to Child
Transmission
•We are waiting
for
microbicides
•We are waiting
for PrEP
How Does a Para Social Worker
Contribute to an AIDS Free Future in
Tanzania?
•
•
•
•
•
Support vulnerable children and families
Support testing and treatment
STAMP OUT STIGMA
Help to educate communities and families
Create, maintain, support and expand
STAMP OUT STIGMA – SUPPORT COMMUNITIES
THE POWER OF TEN
Skill Building Workshop Day 7
Service Planning When HIV is an Issue
• Appointed a recorder to report at RECAP tomorrow
• Discuss concerns or questions from today’s session
• Include alternative breast feeding practices
• Discuss HIV related needs for the child and family in
your group case
• Work in mini-groups
• Interview client or family member regarding HIV
risks or needs
• Help them to develop a plan to get tested or get
care
• Discuss with whole group what did you learn?