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

TABLE OF CONTENTS

Introduction 3

Chapter 1 National Structural Organisation

for AIDS Control

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 25

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

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 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

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)

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.

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.

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.

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 window-period; 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.

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 anti-retroviral therapy (ART).

The CD-4 count is normally between 500 and 1600 cells/mm3. A CD-4 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.

SYMPTOMS OF HIV-AIDS

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. Anti-retroviral 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

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 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 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 urgently. ejjgkjjfgjfkgkfkfkfkfk///////////////AoiiSssocaited wotjumfjdfkkk’

At this stage increasing support will be needed as the patient is likely to be become more vulnerable, fearful and depressed as symptoms progress. Families should be encouraged to be as closely involved as possible.

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COUNSELLING

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.

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.

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 non-professional 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 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

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 solutions, making decisions or coming to terms with a difficult or permanent change in their life.

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 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:

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 test-procedure, the window-period, the difference between HIV and AIDS, risk-reduction, treatment and adherence and partner notification.

Post-test counselling

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:

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.

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 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.

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 ANTI-RETROVIRAL 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.

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. Do not give out or advise on prescriptions unless you can read the prescription with certainty.

2. Always ask the doctor whenever in doubt.

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.

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.

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.

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.

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 breast-feeding 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 breast-feeding have to be made in the context of not knowing the baby’s real status.

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 HIV- AIDS 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 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.

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.

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 anti-retroviral 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.

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.

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.

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.

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 hospital-based 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.

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.

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 grand-children 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.

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

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.

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.

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 HIV-AIDS 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

APPENDIX 1

Using Good Counselling Skills

❑ 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

APPENDIX 2

Treatment Plan for the Whole Person

From: ‘Life skills manual’

July 2000, Peace Corps

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.

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.

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).

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

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?

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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Chapter

2

Chapter

4

Chapter

5

Chapter

6

General

Well-being

Psychological

Well-being

Spiritual

Well-being

Physical

Well-being

Social

Well-being

• Counselling

• Self-esteem building

• Positive attitudes

• Stress reduction

• Interpersonal skills-building

• Support from husband/wife

• Support from family/friends

• Peer support

• Productive work

• Advocacy work

• Protection from discrimination

• Good food

• Rest and relaxation

• Exercise

• Avoid smoking, drugs, alcohol

• Avoid STDs, re-infection of HIV

• Faith

• Meditation

• Belief System

• Treatment with Anti-retro Viral Therapy

• Treatment of opportunistic infections (TB, Pneumonia, diarrhoea, fever

• Traditional herbs

Chapter

7

Chapter

8

Chapter

10

Chapter

9

Chapter

1

Chapter

12

Chapter 11

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