Download HIV/AIDS INTRODUCTION-COURSE

INTRODUCTORY COURSE FOR
COMMUNITY HEALTH CARE VOLUNTEERS
Third Edition
This booklet was produced by COPAAP (Community
Partnerships Against AIDS Programme).
Mezam Polyclinic, Treatment Centre,
P.O. Box 450, BAMENDA,
Republic of Cameroon.
November, 2005
1
TABLE OF CONTENTS
Introduction
Chapter 1 National Structural Organisation
for AIDS Control
3
Chapter 2 HIV-AIDS
The Virus
Transmission
HIV Test
The CD4 cell count
Chapter 3
Chapter 4 Counselling Skills
Chapter 5
Chapter 7 Treatment file
Contents of the treatment file
Chapter 8 Anti-retroviral Therapy
Adherence
Chapter 9 Prevention of Parent To Child Transmission
Chapter 10 Holistic Care andHome-based Care
Supporting Patients and Families at Home
Palliative Care
Managing Difficult Symptoms
Teamwork and Support
Chapter 11 Care of Dying Patients at Home
Bereavement
Care of Orphans
2
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INTRODUCTION
'In the face of the grave threat posed by HIV and AIDS, we have
to rise above our differences and combine our efforts to save our
people. History will judge us harshly if we fail to do so now, and
right now.' Nelson Mandela
Community Health Volunteers occupy an important position in
COPAAP’s strategy to ensure rural communities take charge of the
fight against the HIV-AIDS pandemic in their communities. Where the
area of jurisdiction of a Local AIDS Control committee (LACC)
coincides with that of an organised village, the Community Health
Volunteers would naturally emanate from, or be responsible to the
LACC. Where an organised village/rural community area covers that
of more than one LACC, such a community will need to have a
Community AIDS control committee (CACC) to integrate the efforts of
the more than one LACC. In such a situation Community Health
Volunteers may be responsible directly to LACC’s, or to both LACC’s
and CACC's, depending on the existing support infrastructures in the
area.
The important objectives in COPAAP’s strategy are that organised
communities be made to feel directly responsible for the fight against
HIV-AIDS in their communities, to organise themselves to carry on the
fight, and to seek help and guidance from others; (the Government,
and NGO’s) as partners only.
COPAAP has been very encouraged by the enthusiasm with which
organised communities, represented by their Development and
Cultural Associations have embraced our ideas. A COPAAP seminar
intended for Cultural and Development Associations (CUDA's) of
organised communities on the theme:
“The war against the HIV-AIDS; the First priority development project”
was held in November 2002. The seminar was very heavily attended.
Pilot projects based on the COPAAP strategy are going on in three
different villages at the moment. These projects begin first with
sensitisation of a CUDA of a particular village to the potential role it
can play in assuming the responsibility for fighting HIV-AIDS in its
community in the same way it traditionally does for all the other
problems of the village, followed by guiding it to draw up a
3
comprehensive, self-reliant anti HIV-AIDS programme, and helping
co-ordination of its implementation with other partners involved in the
war on HIV-AIDS. In one of such projects implementation has gone
from the establishment of the village/community HIV-AIDS control
committee (CACC), the establishment of a village anti HIV-AIDS
solidarity fund, mass village education on preventive measures, mass
pre-test counselling, mass free voluntary screening for HIV, post-test
counselling, and is presently in the process of organising village
subsidised ART for the needy.
The village community HIV-AIDS volunteer will help sustain education
on prevention in the village, provide continuous counselling and
support for those infected or affected by the HIV problem and help in
ART distribution and compliance. The Community Health Worker shall
be the HIV-AIDS resource person for the village residents, as well as
the link between the village and specialised centres for the
management of HIV-AIDS matters. The substance of this introductory
course is summarised in this booklet. It aims to give the Community
Health Volunteers the knowledge and skills base necessary for them
to begin their work. It is expected that their training will continue on the
job, influenced by feedback and results of close monitoring of their
performance by COPAAP (see Appendix 3; Oath for Community
Health Volunteers).
Dr. Achu Paul Ngang
4
Chapter
1
NATIONAL STRUCTURAL
ORGANISATION
FOR AIDS CONTROL
In Cameroon the following national structural organisations for the
fight against HIV/AIDS have been put in place:
NACC
(National AIDS Control Committee)
NTC (National Technical Group)
PACC
(Provincial AIDS Control Committee)
PTG (Provincial Technical Group)
DACC
(Divisional AIDS Control Committee)
SDACC
(Sub Divisional AIDS Control Committee)
LACC - VACC - CACC
(Local AIDS Control Committee)
(Village AIDS Control Centre)
(Community AIDS Control Committee)
Community Health Volunteers (COPAAP addition)
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Chapter
2
HIV-AIDS: THE VIRUS
TRANSMISSION
HIV TESTING
THE VIRUS
HIV stands for Human Immune Deficiency Virus. It was discovered
to be the cause of AIDS (Acquired Immune Deficiency Syndrome) in
1983. It is unclear where the virus came from and why it appeared.
A virus is a very small infectious particle. Viruses can cause many
kinds of infection in the human body. Normally, the body’s ‘immune
defence system’ produces antibodies to destroy the virus. The HIV
virus is so dangerous because it attacks the important cells in that
defence system called T4 lymphocytes.
When a virus infects a human being it searches for host cells where it
can live and make more virus cells. A virus enters the human body
through the mucous membranes. The virus then tracks down a
suitable host cell in the body’s immune system to which it attaches
and invades (infects) it. The purpose of the virus is to make more
virus cells.
Living cells contain special information (called genetic material) that
enables them to divide and make more cells in the body when they
are needed. Viruses are not able to produce more cells by
themselves, but they can use the genetic material of the host cell to
copy or replicate themselves. The HIV virus belongs to a group of
viruses called RETROVIRUSES (because they reverse the normal
reproductive activity of the cell). This process is called reverse
transcription.
In the human body that has been infected with the HIV virus this
process continues until so many of the cells of the immune system
have been destroyed by the virus that the body can no longer fight off
infections. The HIV virus also has the ability to adapt and change if
the environment in which it lives changes. This is called MUTATION.
It is an important asset to the virus because it means that if it is
attacked, for instance, by antiretroviral drugs, the virus may get even
stronger.
6
This is why it is so important for people to continue to take their
antiretroviral drugs every day, even if they are feeling better. When
they do not, the HIV virus gets a chance to recover, change its shape
and attack more cells.
HIV exists in the body as a mixture of active and inactive viruses.
This is why the course of the illness can be so variable and
unpredictable. This means that people can have the HIV virus and be
well, and then become very sick with AIDS when the virus
overwhelms the immune system.
Even if the person with HIV is well, the virus still has the capacity to
reproduce and weaken the immune system. Over time, and this can
be very variable - several months to many years - the cells of the
immune system called T4 lymphocytes (or helper cells) are reduced
until the body cannot withstand attack from infections. This is what is
happening when the
CD 4 count falls.
HIV-AIDS – FACTS AND FIGURES FOR CAMEROON
The UNAIDS global update (2002) states that 42 million people are
infected with the HIV virus worldwide. Of these 29 million are living in
Africa. The overall prevalence in the North West Province is 8.5%.,
about double the national average. In women, the incidence is 12%.
One third of HIV positive people are aged between 15 and 34 years
(PTG). This is an illness affecting all age groups, but especially the
young: students, parents, breadwinners, professionals. In other
words, an illness that eats into the fabric of everyday life for many
families and, if it is not controlled effectively now, will cast a long
shadow over the future.
TRANSMISSION
The virus can be found in all body fluids, but it has been found that it
will be enough to transmit to somebody else only in:
Blood, semen, vaginal fluids and breast milk.
7
Saliva, tears, sweat, urine and faeces contain only very small amounts
of the virus; not enough to transmit the virus from one person to
another.
This means HIV can be transmitted through:
1. Sexual intercourse (even if there is no blood involved)
90% of the people are infected through sexual contact.
2.





By blood and blood products
Sharing of unsterilised needles, syringes or blades
Blood transfusion
Tattoo
Acupuncture
Sharing toothbrushes and razors (small risk)
3. Parent to child
 An infected mother has about a 30% chance of passing the
virus to her baby.
RISKS TO HEALTH WORKERS
Research has shown that the risks of HIV transmission to those
working with people with HIV are very low. The greatest risks are for
those who take blood or are involved with laboratory tests. Hollow
needles carry the highest risk of transmission. Risks are also greater
if the patient has a high viral load or the health care worker has
contact with infected blood through broken skin.
The risk of transmission of HIV after accidental exposure is reduced
by offering anti-retroviral drugs. This is called Post-Exposure
Prophylaxis (PEP). Treatment should be started as soon as possible
after the exposure has occurred, ideally within a few hours of the
incident. The exposed area should be cleaned immediately,
preferably with an antiseptic solution.
Post exposure prophylaxis should also be offered promptly (alongside
proper counselling) to anyone who is the victim of rape, or to victims
of sexual child abuse, where there is a suspicion that the attacker may
be HIV positive.
8
The HIV TEST
Most of the HIV tests do not detect the virus itself but are looking for
antibodies made by the body to fight the virus.
There are different HIV tests. Some are rapid tests and some take
longer. The names and order of the tests used in Mezam Polyclinic
are:
First test:
 Abbott Determine: this is a rapid blood test that can be done in 15
to 30 minutes.
Or
 Oral Quick, this test is done with saliva and is also used as a first
test producing a rapid result.
Second test:
 Immunocomb. 2: this is a blood test
Or
 Elisa, this is also a blood test and is used to confirm the
diagnosis.
These tests always have to be performed by a trained laboratory
technician.
The test results
The test result can be negative, indeterminate or positive.
A negative test result:
If the first test is negative we consider the person negative, if there
was no risk of infection during the three months before the test. The
interval between when infection takes place and the appearance of
enough antibodies to show a positive result is called the windowperiod; this can be up to three months. For this reason the test needs
to be repeated after three months to be sure the person is not
infected.
An indeterminate test result:
This means that the test result can not be read well or is not clear. If
the first test is indeterminate a second test has to be done. If this
second test shows positive, a third one can be done or the test should
be repeated after three months.
9
A positive test result:
If two different tests show positive we consider the person positive.
The most infectious phases for HIV infection are:
Soon after becoming infected - this is called sero-conversion illness.
When there is a high viral load.
During the later phase of the illness when more symptoms appear.
THE CD-4 COUNT
The CD-4 cell is one of the white blood cells. These white blood cells
protect your body from becoming sick. The CD-4 cell is the captain of
the white blood cells and tells other cells (CD-8 cells) what to do. If
these cells are absent the immune system is not working as it should
be and cannot protect you against infections. The HIV virus multiplies
inside these CD-4 cells and destroys them. This means that with time
the CD-4 count will become so low that the body is longer protected
against infections.
A CD-4 count is a blood test done after two positive HIV-tests. This
test is an important indicator in deciding when to start taking antiretroviral therapy (ART).
The CD-4 count is normally between 500 and 1600 cells/mm3. A CD4 count below 200 cells/mm3 means that your protection against
illnesses is weak and below this level most people need to start ART.
However, every person has to consult a doctor to advise on starting
medicine.
The CD-4 count also shows whether the medicine is working. If the
CD-4 count goes up it means that the medicines are working. If the
CD-4 count goes down the medicines are not working as they should
be and changes would normally be made.
Chapter
4
SYMPTOMS OF HIV-AIDS
10
We have already seen that HIV slowly damages the immune system
and that the viral load usually steadily increases over time. An
increasing viral load will be indicated by a falling CD4 count. Antiretroviral therapy is designed to control this progression and keep
patients well for as long as possible.
The infections causing these conditions are known as
OPPORTUNISTIC INFECTIONS because they take advantage of the
weakened immune system. They would not normally present a major
problem for the body in a healthy individual.
PROGRESSION OF SYMPTOMS
When the HIV virus enters the body PRIMARY INFECTION
may cause a ‘flu like illness for 1- 2 weeks, but many people notice no
symptoms at all.
This is followed by a SILENT PHASE when the infected person can
pass on the HIV virus but is normally completely well. This phase can
continue for many years.
As time passes, increasingly serious symptoms will appear as the
immune system becomes more damaged. However, the course of the
illness is never predictable and each person will have a different
experience. A few people (about 5%) carry the virus but never
become ill at all.
MAJOR SYMPTOMS
Rapid loss of body weight (10% or more)
Diarrhoea lasting more than one month
May be accompanied by fever and night sweats
Chronic fever lasting more than one month
11
Other Symptoms
Persistent cough for more than one month. - this may be caused
by pneumonia or associated with tuberculosis.
Tuberculosis (T.B.) is another disease that takes advantage of a
weakened immune system and causes cough (sometimes with blood)
and weight loss. Many adults in developing countries have latent
tuberculosis infection (the infection without any symptoms). Immune
deficiency caused by HIV infection is the strongest risk factor for
reactivation of latent T.B.
Pneumocystis Carinii
A form of pneumonia with a dry cough. Most commonly found in
America and Europe.
Itchy skin lesions
Peripheral Neuropathy
This is a numbness or tingling in the fingers and toes can be caused
by the HIV virus itself or by some ART drugs e.g Triomune.
Herpes Zoster (shingles, or ‘God Fire’)
A rash, usually on the trunk or face caused by a virus. Used to occur
mainly in older people. It can be an opportunistic infection in
someone of any age infected with HIV. The lesions can be very
painful as the nerve endings are affected.
Chronic Herpes Simplex
A virus producing sores (often called cold sores) in and around the
mouth or in genital or rectal areas. In people with a healthy immune
system these sores last only a few days: in someone with HIV-AIDS
these sores are more severe and come back more often.
Oral Candidiasis (thrush)
A white, furry coating on the tongue and inside the lining of the mouth.
It is caused by a yeast called Candida Albicans. This can occur in
12
babies and very elderly people or in people with a damaged immune
system, such as AIDS patients. It can spread from the mouth to the
gullet and lungs. It can interfere with the patient’s ability to eat and
swallow food and can be easily treated with anti-fungal medication.
Candida (thrush) can also occur in the vagina.
Enlarged lymph nodes
The lymph glands are part of the immune system and can be found in
the jaw, armpit, neck, and groin. This condition appears as painless
bumps or swellings in those areas. Enlarged lymph glands can be a
sign of other illnesses, but can also be an early sign of AIDS.
Poor appetite and general weakness or fatigue can result from any of
the above or just as a result of the virus itself.
Kaposi’s sarcoma - a cancer of the blood vessels
Dark raised areas on the skin that can appear on the trunk or upper
body, the legs, arms or face. These lesions are not usually painful or
itchy, but can cause swelling in the lower limbs and lesions on the feet
make walking difficult. This cancer can spread to the lymph nodes and
internal organs, particularly the lungs and gut and eventually cause
death.
Cryptococcal Meningitis
This is caused by a yeast-like fungus. Early symptoms are a fever
and mild headache, progressing to nausea, vomiting, a more severe
headache and blurred vision. If untreated, this disease is fatal.
Aids Dementia Complex
The HIV virus can pass into the brain and damage the spinal cord and
nerves. The effects will depend on the part of the brain which has
been invaded by the virus. Symptoms include confusion and strange
behaviour, paralysis or difficulties with movement and walking.
Severe HIV-related disease – AIDS
AIDS is almost always associated with a high HIV viral load and
severe immune deficiency. This usually corresponds to CD4 counts
13
below 200 cell /mm3. This may involve any of the above conditions
and will be accompanied increasing weakness and debility in the
patient. At this stage the patient will need to spend more time in bed,
will probably have some difficulty with eating well and will be losing
weight. Prompt treatment for opportunistic infections is vital and
anyone with symptoms should be referred for a medical opinion
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to be become more vulnerable, fearful and depressed as symptoms
progress. Families should be encouraged to be as closely involved as
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COUNSELLING
5
1. BASIC COMMUNICATION SKILLS
We all learn to communicate from infancy. It is essential to express
ourselves - our thoughts, our needs, our fears, our feelings, our
hopes.
Communication is important in understanding our environment and
culture, learning facts, exchanging ideas and getting things done.
14
Communication is about the exchange of information and about
relationships with other people – parents (when we are very young),
then teachers, family, friends, colleagues etc.
Effective communication is an essential part of being close to another
person, working with others in carrying out a task or achieving a goal
and in many simple everyday activities. Much of this communication
we take for granted.
When people have obvious problems with communication, they have
to develop ways of overcome
ng these problems. For instance:
A hearing loss means no music, no voices, no sounds of nature – a
silent world. In this situation, communication is a challenge and new
ways of exchanging information have to be found, such as sign
language.
Impaired sight closes off all kinds of obvious communication too –
images and print from the world around us constantly feed us
information and ideas. However, people with limited or no sight do
develop ways of understanding their environment and communicating
effectively with others, but they have to work harder than the rest of
us.
Communication is perhaps the currency of our humanity – it helps us
to express our thoughts, ideas, needs and feelings in all our
interactions.
2. WHAT ARE THE QUALITIES OF GOOD
COMMUNICATION AND HOW DO THEY HELP US TO
BECOME EFFECTIVE COUNSELLORS?
Health-related activities like counselling and caring for others depend
on our ability to develop communication skills in a particular way so
that the relationship becomes therapeutic, that is, will benefit the
patient or client in specific ways.
15
Some examples are:
Making the patient or client feel comfortable or at ease
Reducing anxiety and fear
Explaining the importance of a treatment, such as a good diet
or taking medication regularly.
Helping the patient or client to adjust psychologically to a
difficult situation, such as becoming HIV positive.
Working with conflict or prejudice, for instance in reducing the
stigma that may arise inside a family group or within a
community setting.
Helping to reduce confusion or ambiguity. This can enable
people to understand each other better, even when they don’t
agree.
3. COUNSELLING SKILLS AND CONTEXTS
Good communication skills are the basis of a successful counselling
relationship.
The counselling relationship is a professional relationship. It should
be based on respect for the other person and can be a warm, informal
relationship, but this is NOT the same as a friendship. In nonprofessional relationships, people support each other equally, and we
all need these kinds of relationships for happiness and well-being.
The counselling relationship is different. It is more like a contract
between two people or the counsellor and a family group to work
together as long as this is helpful or necessary. The relationship has
boundaries and the counsellor must remain objective in order to be
effective. Over involvement will prevent the counsellor working to help
16
the other person and may also burden them with you, the counsellor’s,
own problems.
Essential Qualities
The success of a counselling relationship depends on planning and
making enough time available to do the work properly. The right
setting is important, too. Ideally it should be somewhere quiet and
private where you won’t be interrupted. The patient or client needs to
feel safe and respected.
‘ACTIVE LISTENING’
This means being aware of non-verbal as well as verbal messages. If
your words suggest you are ready to listen, but your body language
indicates you are too busy or bored, the other person will receive a
confusing message and will probably not feel at ease to discuss
problems.
Examples of active listening include:
Giving someone your full attention
Making eye contact
Nodding and giving encouragement
Sitting still (not fidgeting)
Being comfortable with silence
Allowing enough time
Not rushing the other person to answer questions
At the end of a counselling session it is often useful to summarise
what has been said and set some goals for the future. This may
include arranging to see the patient or client again in the near future,
especially if he or she is very upset. It is also important to make sure
that you have really understood what you have been told.
Summarising what the patient or client has told you and repeating
back to them is called ‘reflecting back’ and is a useful way of checking
that you have really heard and understood what the person has told
you.
EMPATHY
17
Empathy means trying to put yourself in another person’s shoes. This
does not mean telling someone you know how they feel, but does
mean acknowledging how painful or difficult it may be to live with
those feelings. Empathy also involves helping the other person to
identify what is the exact cause of their anxiety, fear or other painful
feelings. We should never assume we know this however
experienced or perceptive we are.
ASKING OPEN QUESTIONS
One of the purposes of the counselling relationship is to allow
someone to explore painful or difficult emotions. In order to do this
the counsellor needs to ask open rather than closed questions. This
means asking questions like:
‘How do you feel?’, rather than ‘Are you feeling unwell or
anxious?’
ACCEPTANCE AND RESPECT
We should accept people as they are, not as we think they should be.
In the counselling relationship we should never be judgemental, even
if the person’s beliefs, ideas, or feelings are alien or very different from
our own.
CONFIDENTIALITY
Within any counselling relationship it is of great importance that we
respect confidentiality. This means never disclosing personal
information to another person without permission. The information we
receive is sensitive and privileged and we have a duty to protect that
information. The patient or client is vulnerable and any breach of
confidence will damage the relationship permanently and is
completely unethical.
GIVING ADVICE
Giving advice is not usually part of the counsellor’s role. Giving
advice presumes that the counsellor knows best or has all the
answers. This prevents the other person from working out their own
18
solutions, making decisions or coming to terms with a difficult or
permanent change in their life.
Chapter
6
THE APPLICATION OF COUNSELLING
SKILLS TO THE HIV-AIDS SETTING
The World Health Organisation (WHO) definition of counselling in the
context of HIV-AIDS states it is:
‘A confidential dialogue between a client and health care provider in
order to assist the client in overcoming stress and to take a personal
19
decision in relation to HIV-AIDS. Counselling consists of evaluation
the individual risks…’
The counselling relationship should be aimed at empowering the other
person, not making them dependent on you. In the HIV-AIDS setting
it is important to allow time for the patient or client to accept changes,
make important decisions now and perhaps make a plan of action for
the future.
Letting go of painful feelings can be very therapeutic but it is important
to remember that feelings can be powerful and when someone is very
upset they need on-going support and care. It is important when
giving someone bad news to ask who else that person has to talk with
freely and openly and what support they can depend on at home. You
will probably need to be available for families and others close to the
person with HIV.
‘A counsellor must believe people can change their behaviour if
helped. The further spread of AIDS can be prevented. Those with
HIV infection can live positively’
Lawlor,Uganda
The UNAIDS WHO Policy Statement on HIV Testing states very
clearly that the conditions under which people undergo HIV testing
must be clearly based in a human rights approach. This fundamental
ethical principle should inform everyone’s practice and should be
applied using the ‘3 Cs’ as follows:
20
CONFIDENTIAL
BE ACCOMPANIED BY COUNSELLING
ONLY BE CONDUCTED WHEN INFORMED
CONSENT – MEANING BOTH INFORMED AND
VOLUNTARY
Pre-test counselling
Doing an HIV-test is an important decision in somebody's life, and
should always be accompanied by pre-test and post-test counselling.
Doing the test should be encouraged during counselling and talking
about sexual behaviour and behaviour change should be part of it.
Why is pre-test counselling necessary?
 To help someone to freely make an informed choice whether or
not to have the HIV-test.
 To find out what someone knows about HIV-AIDS and provide the
correct information.
 To assess somebody’s risk on HIV-infection through past or
present behaviour.
 To encourage people to reduce their risk of contracting or
transmitting HIV to others.
To explain the process of testing.
 To help people to prepare themselves for the result, whether
negative or positive.
 To help people prepare themselves for changes in their life after
they have done the test.
The information should be easy to understand and up-to -date.
This means the person needs to know things about: the testprocedure, the window-period, the difference between HIV and
AIDS, risk-reduction, treatment and adherence and partner
notification.
Post-test counselling
21
Counselling after an HIV-test will depend on the result; the result can
be negative, positive or not clear.
Why is post-test counselling necessary?
 Because it is often difficult for somebody to accept and believe a
test-result. Counselling is often needed to convince somebody
about the reality of the situation. This may take some time.
 To make sure the person understands the meaning of the result.
 To help the person to cope with the result, especially in the days
or weeks that follow immediately after the test.
 To make a plan for ongoing care if somebody is positive.
 To explain the need to do another test when somebody might be
in the ‘window period’ or if the result is not clear.
 To make sure that the person knows about the dangers of
spreading HIV to others if the result is positive (and the risk that
HIV may be passed on if they plan to have children).
 To make sure that the person knows how to prevent infection in
the future if the result is negative.
 To give information on safer sex (abstinence, fidelity, condoms).
Negative test result:
After a negative test-result the test has to be repeated after three
months if the person has been exposed to risk in the three months
before they had the first test (the window-period).
At this point there should be a discussion about how to stay negative.
If the partner has not been tested, discussion with the partner about
having a test should be encouraged. For young people it can be an
important opportunity to discuss worries and concerns about sexual
behaviour – abstinence, coping with different pressures, using
condoms etc.
Unclear test result:
This person will be advised to repeat the test. If the result is still not
clear, the test has to be repeated after three months. In this situation
counselling is also important because the person might feel very
uncertain and have difficulties talking with his or her partner.
Positive test result:
22
If the test result is positive the person needs to have a second test to
confirm the result. If two tests show the same result the person is
considered to be HIV-positive.
This result should be given as soon as possible and the first
discussion should be private and confidential, so that the person has
time to absorb the news. This is not the moment to give too much
information unless the person asks for it.
At this time it is important to be aware of the person's emotions and
encourage him or her to talk about them. As a counsellor you are
there to provide support and encourage hope for realistic solutions to
practical and personal problems. In a difficult situation like this
everybody responds differently and needs individual support. Some
of the feelings that might occur are fear, loss, grief, guilt, depression,
denial, anxiety, anger and even suicidal thoughts.
These feelings are normal when someone has been given information
that may change their lives forever, particularly when there is the
possibility of a shortened life-expectancy. Also, if there are conflicts or
difficulties within personal relationships in someone’s life, very mixed
feelings are more likely to occur. Some people will need the
opportunity to come back and talk again at a later time and this should
always be offered, especially if you are worried about how someone is
reacting to bad news.
There are many things that somebody who is HIV positive can do to
stay healthy, for example:
Take plenty of rest, eat a variety of nutritious food, avoid alcohol, try to
avoid stress, do not have unprotected sex, talk with others about any
worries, take the correct medicine etc. Talking these things over with
a counsellor can help.
23
Chapter
7
TREATMENT FILE
Contents of the Treatment file
The treatment file contains information on every aspect of the
person’s health. The first page of the file is an information sheet for
the Therapeutic Committee that has to be completed by the treating
doctor. On the basis of this treatment file a Therapeutic Committee
decides if somebody should start ART and which drugs the person
should take. A Therapeutic Committee consists of doctors,
pharmacists, laboratory technicians and counsellors and normally
meets on a weekly basis.
The information sheet contains information on the following subjects:
Socio-economic data:
This is information about the marital status of the person
(monogamous or polygamous), divorced, widowed or single. The
person’s age, sex, and numbers and ages of any children should be
included. There should also be a record of whether the partner and
children have been tested.
Clinical data:
This contains information about any previous health, problems, their
present health, weight, clinical stage (clinical condition and the CD-4
count).
Therapeutic data:
This contains information on anti-retroviral treatment and any
treatment for opportunistic infections.
Laboratory data:
Recording of results of any laboratory tests. The first tests have been
mentioned before: two HIV-tests (Abbott determine and Immunocomb
2 / Elisa) and the CD-4 count.
If the CD-4 count and the health of the person indicate that the person
needs ART there are other laboratory tests that have to be done to
show the doctor whether or not there are any severe infections that
24
have to be treated before starting ART. Tests also show how well the
organs in the body are functioning (liver, kidneys and pancreas) and
help the doctor to decide which type of anti-retroviral treatment to
prescribe.
Some of the medicines can have effects on vital organs and
make the patient more unwell.
Financial situation:
The income of the person is registered and it is noted whether
the family are able to help pay for the ART.
Engagement form signed:
This form has to be signed by the person responsible for payment of
the ART to avoid disruption during treatment.
Proposition:
The ART proposed by the doctor
Decision:
Decision from the Therapeutic Committee to commence the patient on
ART. The rest of the file consists of a prescription form,
epidemiological information, social enquiry, outcomes of previous
counselling, medical enquiry, clinical follow-up, biological follow-up
and the engagement-form. For those people taking ART, the
laboratory tests have to be repeated at 3 months, 9 months, 18
months etc. to check whether the ART is working and to identify any
severe side-effects.
25
Chapter
8
TREATMENT
What is Anti-retroviral Therapy?
Treatment for somebody with HIV-AIDS consists of:
Treatment and prophylaxis (prevention) of opportunistic
infections
 Psychosocial support
 Antiretroviral therapy to reduce the viral load
Somebody who is HIV positive is not necessarily sick and may be
living a normal life. It may take up to 10 years or even longer before
this happens. Because the HIV virus develops differently in each
person, careful follow-up is very important.
Anti-retroviral Therapy
It is important to know that ART is not a cure but a treatment. The
drugs reduce the viral load so that the person stays healthy for as long
as possible.
The timing of starting ART is important as if somebody’s immune
system is still very strong, the medicine will do more harm than good.
This is because the drugs are powerful and can have toxic side
effects. Treatment decisions will be made after discussion between
the doctor and patient and will
usually mean taking medicine daily for an indefinite time.
Treatment usually consists of a combination of drugs. This is because
there are different groups of drugs that attack the HIV virus in different
ways. This approach to treatment is called HIGHLY ACTIVE ANTIRETROVIRAL THERAPY – HAART.
Reverse Transcriptase Inhibitors
These block the action of the HIV virus in the host cell. There are two
kinds: Nucleoside and Non-Nucleoside Reverse Transcriptase
Inhibitors.
26
Protease Inhibitors
These interfere with the ability of the HIV virus to make new cells.
The ART’s available in Cameroon are the following:
 Triomune (= Lamivudine, Stavudine & Nevirapine)
 Duovir (=Zidovudine & Lamivudine)
 Stocrin (=Evafirenz)
 Crixivan (=Indinavir)
 Videx (=Didanosine)
The most common ART used in Cameroon is Triomune, a tablet that
consists of three different antiretroviral drugs - Lamivudine, Stavudine
and Nevirapine. Triomune is taken in the morning (one tablet) and in
the evening (one tablet). It is available in two different strengths
Triomune is always started with a lead-in dose for 14 days because
the Nevirapine can cause severe skin-rash in some people.
The lead -in dose is taken as follows:
Lamivir-S (=Lamivudine & Stavudine)
one tablet morning
one tablet evening
+
Nevirapine
one tablet evening
both for 14 days
If there is no skin-reaction Triomune is continued (one tablet in the
morning, one tablet in the evening).
These medicines are prescribed by a doctor and the dosage and
combinations may vary, so always follow the prescription carefully
and, if there is any doubt, always check with the prescribing doctor or
another health care professional.
As a Community Health Volunteer
1.
2.
Do not give out or advise on prescriptions unless you can
read the prescription with certainty.
Always ask the doctor whenever in doubt.
27
Problems that people might have when taking ART:
ADHERENCE
This means taking the medicine regularly at the prescribed times. It is
of great importance to continue to take the treatment every day even if
the patient is feeling well. A break in treatment allows the virus to
recover and become stronger. The increased viral load will then be
an even greater threat to the life of the patient’s immune system,
making him or her more vulnerable to opportunistic infections –
INTERMITTENT TREATMENT CREATES RESISTANCE
Sometimes people forget to take the medicine and some and it may
be hard for people to take the medicine if they feel well. It is
psychologically difficult to be constantly reminded of their HIV status.
Some people find the cost of their medication difficult to manage, and
others may be tempted away from orthodox prescribed medicines to
complementary or ‘natural remedies’ that have no proven value in the
treatment of HIV-AIDS.
All these are very important reasons for Community Health Workers
and Volunteers to see patients on treatment on a regular basis and for
follow-up visits to be made if an appointment is missed. Adherence
problems should be discussed with the staff at the Treatment Centre
so that the patient’s case can be reviewed at the Therapeutic Meeting.
Drug interactions
Some of the ART drugs react with other drugs used for treating
opportunistic infections, for example, drugs for the treatment of
Tuberculosis.
Some ART drugs interact with herbal medicines.
Side effects
The side effects differ for each drug. The commonly used ART,
Triomune, can have a toxic effect on the liver and the pancreas. It
can also cause a numb or tingling feeling in the feet or hands called
'peripheral neuropathy'.
Other side effects are: skin-rashes, diarrhoea, nausea, tiredness and
headache. The nausea, diarrhoea and tiredness often become less
after the first few days or weeks.
28
Stocrin can make people feel drowsy or irritable. For this reason it
needs to be taken in the evening.
Crixivan must be taken 2 hours before food
Access
The patient should be able to afford the ART for an indefinite period of
time and the medicine should always be available. Arrangements can
sometimes be made to offer financial help to those who are unable to
afford their drugs.
Problems for which people with HIV-AIDS must see the Doctor
immediately, whether they are on ART or not, are:
1
Severe skin itching (either patches or all of the skin) or
swelling.
2.
Face swelling or swelling of the legs.
3.
Yellow eyes or dark yellow urine (may indicate jaundice).
4.
Coughing up blood, coughing for more than two weeks or
coughing with chest pain.
29
CHAPTER
9
Prevention Of Parent To
Child Transmission
HIV transmission can take place during pregnancy, at childbirth or
through breast feeding. In sub-Saharan Africa, an HIV positive
mother has about a 30% chance of passing the virus on to her child.
Statistics vary, but UNAIDS research suggests that 20% transmission
takes place in pregnancy, 45-50% during delivery and 30-35%
through breast feeding.
Some pregnant women will already be taking ART. Any pregnant
woman should be advised to consult a doctor to discuss her
treatment.
RISK FACTORS
Pregnancy
Poor maternal health or nutrition, especially Vitamin A deficiency.
High Viral load as a result of:
Newly acquired HIV, Infection or Advanced illness (AIDS)
Low CD4 count (below 200).
During Labour
Premature and low weight babies.
Long interval between rupture of membranes and delivery.
Traumatic birth – e.g. forceps delivery or twins.
Placental problems.
Genital infections (esp. other sexually transmitted infections).
To reduce the chance of HIV transmission during birth the midwife will
ensure minimum invasive procedures e.g. forceps delivery or
episiotomy.
(A Caesarean Section may sometimes be safer)
ART treatment in pregnancy consists of:
Nevirapine is given to the mother at the start of labour and
Nevirapine syrup given to the baby within 72 hours after birth.
30
Breast Feeding
After birth the mother should be informed about the risks of passing
the virus on to the child through breast milk and the options available.
If she can afford to give bottle milk and can prepare it in a hygienic
way, she may prefer this. However, opinion currently suggests that
breast feeding is the best option in Africa for at least the first 6 months
because it offers the best nutritional value and gives the baby
protection from other dangerous infections, such as diarrhoea and
respiratory infection that can lead to malnutrition. Breast feeding
mothers should also ensure they have a nutritious diet themselves.
Risks of Transmission of HIV during Breast Feeding
Mixed Feeding – breast milk and artificial food increase the risk of
contamination and hence inflammation of the intestinal tract in the
baby.
If the mother has cracked nipples the baby may ingest infected blood
during feeding.
If there are sores in the baby’s mouth this also will increase risk of
transmission
High maternal viral load (associated with sero-conversion illness or
advanced AIDS).
Weaning
Weaning is best carried over as short a time as possible to reduce the
risk of HIV transmission. This may be difficult for the mother and baby
psychologically. However, it is known that if the baby is taking breast
milk and solids together, any bleeding caused by the trauma is likely
to increase the risk of transmission.
Role of the Community Health Volunteer
The Community Health Volunteer is in a special position to:
Give the mother accurate information about feeding options
Encourage women to form support groups and to care for themselves
well.
31
Reduce discrimination against a very vulnerable group in the
community.
Teach young women and men about how to avoid or minimise the
risks of parent to child transmission of the HIV virus.
However, this is a very difficult and sensitive subject and there is not
always a clear answer to the questions people may ask. If you are in
doubt, be honest about this and refer the person to an appropriate
health professional.
Many people ask questions about parenthood in relation to being
HIV positive. This is a matter for men as well as women. It is the
mother who actually passes the virus to her unborn or breastfeeding child, but the father may be responsible for infecting the
mother and thus introducing the virus into the family.
Decisions about having a family are always important and for
parents who are HIV positive those decisions are much harder.
Not having a child may make the prospect of one’s own limited
lifespan harder to bear. It is equally difficult decide to have a
family when you know you may not live long enough to see your
children reach adulthood.
It is possible for two HIV positive parents to have a child that is HIV
negative. The use of condoms is important, not just if one partner is
HIV positive. If both are positive, using a condom will protect each
partner from the possibility of transmission of a different strain of the
virus to the other partner, which will also reduce the risk of
transmission to any children the couple may have.
It is also important to know that with most available testing procedures
in Africa it is not possible to know whether a baby is HIV positive until
the age of 18 months. This is because a younger baby may be
showing anti-bodies from the mother, thus reflecting the mother’s
status, not the child’s. By 18 months anti-bodies detected on testing
will be from the baby, not from the mother, confirming the baby’s
status as HIV positive. This also means that decisions about breastfeeding have to be made in the context of not knowing the baby’s real
status.
32
Chapter
1100
HOME-BASED CARE
AN INTRODUCTION TO HOLISTIC CARE
Holistic care means care that is directed towards the whole person,
not just the illness that person may be suffering from. It also implies
that the care given shall include those people who are important to the
person who is ill – this usually means family, but it might also be a
friend.
Anyone who has a serious illness will need support at difficult times.
HIV- AIDS is an illness that affects the whole person – mind, body,
spirit and emotions, so it will affect many aspects of that person’s life,
at home, at work and across a whole spectrum of important
relationships with other people. HIV- AIDS is also an unpredictable
and, as yet, incurable illness. This places much stress on those who
are infected and affected, especially at the time of diagnosis or when
an opportunistic infection attacks the immune system, bringing illness,
change and fear. There are many crises that a person living with HIVAIDS has to face, including uncertainty for the future and often
uncertainty about how his or her family and friends may react.
Holistic care is designed to respond positively and supportively to all
these challenges right from the day someone faces the important
decision about taking an HIV test. Therefore, whether you are
working in a health centre doing pre and post test counselling, talking
to students in a local school, visiting a patient in their home
environment or caring for someone who is sick in hospital, the same
principles of holistic care apply.
Anyone who learns their status is HIV positive will experience the
sense of a permanently changed future and face the challenge of
learning to balance a more urgent sense of mortality with a positive
attitude to life. This will never be easy but it can be made easier to
cope with if there is a network of support and encouragement to rely
33
on. Family, friends, colleagues and community can all provide this
support. As a community health volunteer you are in a strong position
to lead by example in the way you give care and support to your
patients and clients and educate those who, through fear or
ignorance, continue to spread stigma and rejection where there
should be compassion and understanding.
HOLISTIC CARE is composed of the following dimensions:
PHYSICAL
PSYCHOLOGICAL
SOCIAL
SPIRITUAL
Each dimension is interconnected with the others and, if one
dimension is ignored or neglected, that person’s life will be
diminished. To give good care and support, therefore, we must
consider all four dimensions in our day-to-day work with patients and
families.
Psychosocial Support for Patients and Families at Home
Most people prefer to be at home with the family looking after them
when they are unwell, unless they feel so ill or the family is so worried
about them that they need to go to hospital. Hospital care can be
expensive and may involve long journeys and further stress. Going to
hospital promptly when medical advice or treatment is needed is very
important. Getting home again with the right support will probably
enable the patient to have the best quality of life and assist the family
in feeling they are helping too.
The role of the Community Health Volunteer is to help families to
manage this and to provide care for people who are ill and have no
family to care for them. Health Care Volunteers need’ to be:
knowledgeable, reliable and approachable people who will be honest,
offer time for discussion of problems, know when they need to refer on
for more expert advice or help, not make judgements and be at all
times discreet about the information they have privileged access to.
34
This is a long and challenging list of requirements and qualities. It is
important to remember that you are working as part of a team, not in
isolation. This kind of work can bring much personal and professional
satisfaction. It can also be both physically and emotionally exhausting
and dispiriting at times. Rest and relaxation are important, as is the
support of colleagues and the opportunity to discuss any difficulties at
work in a relaxed but confidential setting.
Monitoring Care
Home based care provides continuity, alongside hospital or treatment
centre based care. When there is a change in the patient’s condition,
it is important to refer back to the treatment centre for follow up or
emergency care.
The Community Health Volunteer can monitor and assess the patient
at home and offer the family support and advice. It is important to
plan a home visit at a time when the patient will be there, to know
exactly where that patient lives and, if possible, to have a telephone
number.
When referring a patient back to the treatment centre or hospital,
telephone contact should be supported by a written referral form
indicating the following information:
Patient’s name, address, date of birth
Brief history of illness
Reason for referral (problem)
Name and signature of the referring person
The patient and family need to be prepared for the journey – they will
need money for transport, food, a bag with clothing etc. as the patient
may be admitted to hospital. Other
arrangements may be necessary, for instance, the care of young
children.
35
Caring for Patients at Home
Important principles for home care:
Careful observation and review
Teamwork and planning
Good communication skills, especially active listening
Empathy and confidence building
Honesty and openness
Attention to detail
Empowering patient and family / Advocacy
These skills apply to caring for patients with HIV-AIDS throughout the
course of their illness, from diagnosis, or even earlier – the moment
when someone walks through the door of the screening centre,
fearing they may be HIV positive. These same skills are vital at crisis
points in the patient’s illness experience. For instance, at the onset of
an opportunistic infection, when the CD4 count drops and antiretroviral drugs are commenced, or when the patient is no longer
responding to treatment and needs palliative care.
When someone is free of symptoms, they may still be worried about
their future or their family and having someone to talk to about these
concerns can make a positive difference to quality of life.
Being able to keep working or caring for the family and do tasks in the
house like washing and cooking helps to keep everything normal and
maintain hope and a positive outlook. Carrying on social activities
such as meeting family, going to church, hobbies and interests are
important for self esteem and continuing to feel a valued member of
the community.
Support groups help promote mutual support and self-help and
encourage a proactive approach to income generating projects. The
community health volunteer can encourage confidence building and
help confront any negative attitudes in the community.
36
Nutrition and Rest
It is very important for anyone with HIV to eat a good diet, especially if
they are taking anti-retroviral therapy. A good nights’ rest is also
important – lying awake at night worrying about the future will increase
the burden on the immune system, reduce energy and probably worry
family members also.
A nutritious diet is important when there is infection. Often people
have difficulty eating if, for instance, they have a fever, oral candida, a
cough or just feel very tired.
Protein rich foods are important – meat, fish, eggs or soya protein.
Vegetables and fruit are also important, especially carrots, sweet
potatoes, beans, peppers (which contain Vitamin A) and green
vegetables and fruits, such as paw paw, pineapple and oranges.
Vitamin B is important for the nervous system and can be found in
grains, nuts and seeds.
Grains and seeds also contain Vitamin E which supports the immune
system.
Vitamin C helps fight viruses, bacteria and fungi and is found in citrus
fruits.
Care in Food Preparation
Anyone with a low CD4 count should be careful to avoid eating
undercooked meat and should peel fruit and vegetables before eating.
Water that may not be safe should be boiled for at least 5 minutes
before use.
Hand washing – with soap and water – important before ALL food
preparation.
Use separate cutting boards for meat and for fruit/ vegetables
Care is also needed in reheating food, which must be cooked
thoroughly to kill any bacteria.
37
Home-made Oral Rehydration Fluid
I litre of water
5 teaspoons of sugar
1/2 teaspoon of salt
Add fresh fruit juice for taste if you wish
Record Keeping
Accurate record keeping is an essential part of the Community Health
Worker or Volunteer’s role. Patient information must be stored in a
safe place at the Health Centre so that it is available for home visits.
The records must be updated at the time of each home visit.
The referral system outlined above must be followed if there is a
change in the patient’s condition and a review requested. Please
remember that all such information is confidential and must not be
discussed with anyone outside the care team.
A guideline booklet has been designed for home visits which should
make the recording of important information easier (see Appendix 4).
PALLIATIVE CARE
Palliative care can be defined as the time when treatment can no
longer hold back or control the symptoms of an illness. It is a time
when the emphasis should be on sustaining quality of life and
independence as much as possible. Symptoms of the illness may
become more difficult to manage and therefore more distressing for
the patient and the family to cope with. For instance, pain, diarrhoea,
vomiting, sore mouth, skin problems, weight loss and poor appetite
and general weakness.
38
Physical Care
Both patient and family will need practical and psychological support.
The patient may need to spend more time resting in bed, but should
be encouraged to get up at least for short periods. He or she may
require help with ordinary activities such as:
Help with washing and getting dressed
Gentle exercise for arms and legs
Help with eating and drinking
Assistance with going to the toilet
Encouragement with some activity
or just talking to friends and family
Remember that energy levels are likely to be very limited and even
talking and listening can be exhausting.
This is a time when a medical review may also be needed.
Most people know when they are getting more ill and often need to
talk about this openly even when they are very tired and weak.
Families and friends may be reluctant to do this, but such open
discussion usually helps the patient to be more at peace and to cope
with what is happening.
Silence and denial can increase stress and uncertainty and make
planning for the future more difficult, especially if there are dependent
children or other relatives to consider. If there has been no disclosure
of the HIV diagnosis, it is important to try and ensure there is no
further delay as there may be many practical and financial matters to
manage.
It is also VERY IMPORTANT to raise the issue of making a will if this
has not already been done, especially if a wife is about to be widowed
and her inheritance rights threatened. This is a sensitive subject and
talking of wills can be seen as invoking death prematurely.
More than one copy is usually needed. A thumb print is valid if a
signature cannot be obtained. If there is no will, Intestate Succession
decrees that the deceased’s estate is divided in a fixed way.
39
Emotional and Spiritual Care
Equally, people need to talk about spiritual concerns and personal
matters and we should not be afraid to encourage honesty and
openness. We don’t have answers to all the questions, but we must
create the environment to allow the patient and family to explore these
issues. Often we can call upon others with appropriate skills to help
us, such as a minister, a more qualified counsellor or a social worker.
This is a time when hopes begin to fail and everyone can become
tired and dispirited.
Carer Support and Teamwork
You may experience low feelings and a sense of discouragement
yourself and it is important to have colleagues or other team members
with whom you can discuss the demands of being a volunteer carer.
Feeling caught up in the emotions and difficulties in this situation is
not wrong - you are human, too, but we have to be able to retain
objectivity in order to be helpful and to preserve our own energies.
Working as a member of a team is very important in order to maintain
a healthy morale and minimise the risk of becoming exhausted by the
carer’s role (burnout).
It is helpful if the community-based team and the clinic or hospitalbased team have a close and positive working relationship; this will
not only help the team members, but also provide a better service for
patients and their families. Getting together at regular intervals to
discuss problems and stresses of this kind of work is very important
for everyone.
Chapter
1111
40
Care and Support to
Patient Dying at Home
Dying and Bereavement
When it is clear that the patient is dying or in distress, a hospital bed
may be needed, but with the right support and medication, it may be
much better for the patient and the family for everyone to be together
at home. It is often a more peaceful place and the familiar
surroundings can be comforting.
People generally fear the process of dying more than the fact they are
going to die. A common fear about dying is that it will be long, painful
and undignified. It can help to reassure the patient and family that
painful or difficult symptoms can usually be well-managed and that
dying is usually an ebbing away of strength while the patient is only
semi-conscious.
Talking openly about dying is an important way of alleviating these
fears. Just remember that not everyone will want to do this and we
must give people the choice to remain silent if they wish. For some
people just talking about someone else’s death may be interpreted as
wishing them dead and will therefore be a taboo subject.
Also, not everyone will choose to die at home. Some people feel
safer in a hospital setting and relatives, too, may prefer to have a
professional team around them when someone they love is dying.
The family may need help with planning funeral arrangements and
with their emotional reactions when the patient has died. Death is a
shock, even when it is expected. Bereavement is a traumatic time
and people often experience many difficult and confusing emotions at
once. They may need someone to talk to and this might be a relative
or a friend, or it might be you.
41
Coping with Grief
Grief usually involves feelings of shock, sadness, emptiness and
despair, but guilt, anger and disbelief are normal experiences too.
There are many theories about the stages of grieving that people go
through before they can accept what has happened and begin to
recover and heal. However, it is very important to remember we are
all unique and, although we all share the same range of human
emotions, we behave differently as individuals living our own lives.
Grief is also a long-term experience. No one ‘gets over’ a major loss,
such as the loss of a parent, partner or child; they adapt to a changed
life without that person and it takes time, sometimes many years.
Helping someone to recognise this can be helpful, even if you cannot
make them feel any better at that moment.
Most people have a network of family and friends to help them
through bereavement. Those who do not have this kind of informal
help may need professional support, especially during the early weeks
and months after suffering a major loss. Losing a child to HIV-AIDS
may mean taking on the responsibility for the care of orphaned grandchildren too - the emotional as well as financial consequences will be
enormous. Losing a partner may mean loss of a livelihood as well as
a husband or wife and, for many women, this may put their whole
future survival at risk if their property rights are denied.
MANAGING PAIN
Pain is an important physical symptom, but it can also be made worse
by worry or fear. Pain and worry may, in turn, cause or worsen
sleeping problems. It is sometimes difficult to disentangle symptoms
one from another, so taking a careful history and listening well are
important skills.
Types of Pain
Headache, abdominal pain, pain due to infection, limb stiffness,
peripheral neuropathy, sore mouth, Herpes Zoster (shingles), skin
problems, bedsores.
42
Good management of pain depends on some simple rules:
Where is it?
What is it like? e.g. burning, throbbing, aching
What makes it worse? e.g. moving, after food, coughing
What helps? e.g. medicine, rest, physiotherapy, massage, talking to
someone
Constant or chronic pain should be treated continuously to prevent its
return. This usually means about every 4 hours (depending on the
medicine prescribed), but some painkillers work for shorter or longer
periods. In palliative care the ‘analgesic ladder’ is an effective tool for
deciding the drug and dose to use.
The first step of the ladder is usually something simple like
Paracetamol. If something stronger is needed Codeine is often
effective. This is a weak opioid. Strong opioids, like Morphine are
needed when the patient is in severe pain or pain that doesn’t respond
to other agents.
The ‘ladder’ drugs can be supplemented by other pain-relieving drugs,
depending on the cause. Examples are anti-inflammatory agents like
Ibuprofen for bone pain, muscle relaxants, antispasmodics, steroids,
anticonvulsants. It is important to remember that many pain killing
drugs can cause constipation and some can cause nausea.
Other difficult or persistent symptoms may require treatment, for
example, nausea and vomiting, and diarrhoea. If the patient suffers
from these symptoms, there is the additional risk of dehydration which
will rapidly make the patient’s general condition worse.
Good general nursing care is essential to ensure the patient’s comfort.
These measures include:
preventing bed sores
making sure the patient receives regular fluids and nourishing
food (even if these are in small quantities)
care of the bowels and bladder
regular mouth care – observe for candida
observing the skin for any rashes or lesions
43
The risks of opportunistic infections are high in a patient with a
severely compromised immune system.
Care of the Deceased
Advice or help may be needed to prepare the body after death.
Protective gloves should be worn at all times when dealing with body
fluids.
Linen should be soaked in a decontaminating preparation of:
1 part Parazone bleach in 6 parts water for at least 10-15 minutes,
then washed and dried in the normal way. Gloves should be worn
until the linen has been decontaminated (this procedure will kill HIV
and Hepatitis B viruses).
Care of the Family
Offer emotional support immediately after the death. Depending on
what help is available, be prepared to continue visits either to offer
practical help or emotional support into the future. For example,
continuing support to newly orphaned children who are with other
family members or foster parents. Another example might be
emotional or advocacy support to a widowed mother who has lost her
only son and has no other relatives.
For so many families the losses have been multiple rather than single.
It is also important to enlist the help of the community where possible,
through schools, church groups, support groups and other community
organisations.
44
Care of Orphans and Other Vulnerable Children
UNAIDS, WHO and UNICEF define AIDS orphans as children under
15 years who have lost their mother to AIDS. Some children have lost
both parents and perhaps brothers and sisters and other relatives too.
Their needs will be physical, emotional, economic and educational.
Some of them will be infected with HIV too and will have their own
health care needs.
Every local community is encouraged to have a plan for the support of
orphans to ensure that they receive good care, are not deprived of an
education and are enabled to make the most of the opportunities
available to them in adult life. It is an important part of the role of
anyone who works with families in the community to ensure that
children and vulnerable adults do not have to cope with the additional
burdens of stigma and discrimination. Currently, there are at least
600,000 orphans in Cameroon.
Chapter
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1122
POSTSCRIPT
There is no cure for HIV-AIDS. It is an unpredictable illness. Some
people become sick very quickly and die; others may be well for many
years. The benefits of antiretroviral drugs are evidence that treatment
is improving. Health workers and volunteers have a very important
role in the community in education and support, giving practical advice
and encouragement and in challenging stigma, fear and denial.
Conquering these problems is as important in the fight against HIVAIDS as conquering the debilitating physical symptoms.
Many people who are HIV positive can continue to work to support
their families, to feel useful and valuable within their community and to
help support others who have the HIV virus and are not coping so
well. Self-help or support groups can give encouragement and inspire
confidence; they also teach the rest of society that an illness shouldn’t
result in extra disadvantages like discrimination, unemployment,
disempowerment and loss of dignity. Promoting hope and quality of
life depend just as much on how we treat people with HIV as the way
the virus treats them.
These attitudes will, in turn, encourage people to attend screening
programmes, to be less fearful about disclosing their status to their
families and generally to talk about HIV-AIDS as a common enemy
that touches everyone’s lives. It is a fight that all humanity must
engage with:
“The goal of realizing human rights is fundamental to the
global fight against AIDS.”
Dr. Peter Piot, Executive Director, UNAIDS
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APPENDIX 1
Using Good Counselling Skills
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Set aside the time so as not to rush.
Find a private place where you will not be interrupted.
Make contact:
 Greet in a friendly way
 Introduce yourself
 Ask general questions about how the person is doing
Ask open questions and answer questions.
(e.g. ‘how is your marriage’ instead of ‘is your marriage good?’)
Listen carefully,
If you listen actively you will hear what the person is feeling and
what his or her main problems are. Spend more time listening
then speaking.
Allow somebody to express his or her feelings,
Crying, sobbing, angry outbursts are normal ways for people to
express feelings and unburden themselves.
Use encouraging body-language
 Face the person
 Make eye-contact
 Nod to encourage
Break down the problem,
If the problem is complex it can help to divide the problem in
smaller problems and then explore each sub-problem.
Not all problems are solvable, but remember often just talking
about the problem, sharing fears, worries, concerns helps
somebody to cope.
Try not to give information or advice too quickly
Try first to really understand the situation.
Give encouragement for the good things the person is doing.
Re-assure when there are concerns and respond to those
concerns.
Ask person to repeat any instructions or advice to be sure it
has been understood.
Show your support for any decisions. Never be judgemental
Offer follow-up or further counselling.
Make a short-term plan of action together
This can help some people to cope better with difficult situations
Adapted from Evian
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APPENDIX 2
Treatment Plan for the Whole Person
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Good food
Rest and relaxation
Exercise
Avoid smoking,
drugs, alcohol
Avoid STDs, reinfection of HIV
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Counselling
Self-esteem building
Positive attitudes
Stress reduction
Interpersonal skillsbuilding
Psychological
Well-being
General
Well-being
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Faith
Meditation
Belief
System
Social
Well-being
Spiritual
Well-being
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Physical
Well-being
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Support from
husband/wife
Support from
family/friends
Peer support
Productive work
Advocacy work
Protection from
discrimination
Treatment with Anti-retro
Viral Therapy
Treatment of
opportunistic infections
(TB, Pneumonia,
diarrhoea, fever
Traditional herbs
From: ‘Life skills manual’
July 2000, Peace Corps
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APPENDIX 3
Community-AIDS-Workers Oath
I, having willingly volunteered to be trained and to work as a
community health worker, do hereby swear:
That all the information I may come across about individuals, patients,
and families as a result of my work, may be given only to the Medical
Doctors or Counsellors approved by the Community’s AIDS Control
Committee to which I hereby pledge my obedience and loyalty.
That my motivation for the work I do shall be the welfare of my
patients or persons that need my care or advice and not personal
financial benefit.
That I shall be satisfied with any financial compensation the
community’s AIDS Control Committee may be able to offer me.
I accept that failure to respect these conditions will result in my
exclusion from the Community Health Volunteer Group by my Cultural
Development Association.
If, at any time, I no longer feel able to fulfil the conditions of my
pledge, I may formally inform the Chairman of the Cultural
Development Association.
So help me God.
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APPENDIX 4
GUIDE FOR COMMUNITY HEALTH VOLUNTEERS FOR HOME
VISITS
These are some questions that may help you to assess your patients
when you go on home visits. They are divided into sections to make
recording your visits as clear and easy as possible. Please remember
that you may not have to ask all these questions at every visit – this is
just a guide to help you. At some visits it may not be possible or
appropriate to ask every question, or you may find that one important
problem takes most of your time on that day. Also, if something else
is discussed, that is not on this list, please include it in the record of
your visit. Finally, your time with the patient and family is the most
important thing of all – sharing their worries and concerns. Please do
not allow completing the checklist to act as a barrier to that vital
relationship.
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Name of Patient
Address / Quarter
Date of Visit
Volunteer’s Name
New Patient / Patient already recorded
Problems discussed in the past
INTRODUCTION
How have you been since the last visit?
ADHERENCE
Are you managing to take your medicines regularly?
(Check date of collection of tablets and count how many tablets left.
Find out if there are any problems with getting or taking medicines).
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PHYSICAL CARE AND NUTRITION
Are you managing to look after yourself independently?
Can you wash and dress yourself without help?
Are you eating regularly?
What kind of food are you eating and how much?
Do you think that you have lost weight?
Do you have any problems with the following:
SLEEPING .e.g. fevers, night sweats
PAIN
SICKNESS
DIARRHOEA
SKIN RASHES
SORE MOUTH
COUGH
YELLOW EYES OR URINE
NUMBNESS OR TINGLING IN THE HANDS / FEET
TIREDNESS
ANYTHING ELSE
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PSYCHO-SOCIAL CARE
How well do you feel?
Do you have any problems sleeping?
Do you have any worries or concerns about:
Yourself
Members of your family
The future
Paying for your treatment
How other people treat you
What are you able to do to relax and reduce stress?
Is there anything else you would like to talk about?
Is there anything else you need help with?
EDUCATION AND SCREENING AWARENESS
Have any other members of your family attended the health centre for
screening?
Do your family members understand how you became ill and how to
stay well themselves?
Do your children have any problems at school?
Is there anything else you need to know or wish to ask?
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REFERENCES
Adler M.W. (2001) ABC of Aids, BMJ Books (5th Edition)
Evian, C. (2005) Primary AIDS Care, a practical guide for primary
health care personnel in the clinical and supportive care of people with
HIV/AIDS, Houghton, (5th Edition)
IPPF(2002) Counselling for STI/HIV prevention in sexual
and reproductive health settings, London, UK,
Hubley J. (2002)The AIDS Handbook (3rd Edition) Macmillan, Oxford
Lawlor, K.(1997) Education for Life, a Behaviour Process, Masaka,
Uganda.
Piot P. (2003) Executive Director UNAIDS
Pratt R.J., (2003) HIV & AIDS A Foundation for Nursing
and Healthcare Practice, Arnold, London.
PTG, North West Province, Data on HIV/AIDS Prevalence (2003).
RCQHC (Regional Centre for Quality of Health Care) & USAID,
Counselling mothers on infant feeding for the prevention of mother to
child transmission of HIV, March, 2003.
UNAIDS/WHO, AIDS Epidemic Update, December, 2003
UNAIDS Policy Statement on HIV Testing, June 2004
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