Aids Home Care Handbook (WHO, 1993, 178 p.) Part II: Reference Guide Chapter Five: Management of the common symptoms of AIDS in the home (introduction...) Fever Diarrhoea Skin Problems Mouth and throat problems Coughing and difficulty in breathing Genital problems Nutrition problems Nausea and vomiting Anxiety and depression Pain Tiredness and weakness Mental confusion and dementia Chapter Six: Conditions that need special attention in people with HIV infection (introduction...) Tuberculosis Pregnancy and birth Chapter Seven: General guide on the use of medicines (introduction...) Teaching notes on the use of medicines Medicines commonly used to treat symptoms in people with AIDS

Aids Home Care Handbook (WHO, 1993, 178 p.)

Part II: Reference Guide

Chapter Five: Management of the common symptoms of AIDS in the home

This chapter covers the management of the most common symptoms that people with AIDS are likely to develop. It provides the information which you as a health care worker need to give to people with AIDS and their families so that they can prevent and treat these symptoms at home and know when they should seek help.

Each group of health problems or symptoms is discussed under the following headings:

Problems and possible causes

This section gives a brief description of the health problem or symptom, and how it relates to someone with AIDS. In addition, some possible reasons for the symptoms are given in order to help people think how to prevent or reduce them.

What to do at home

This section describes what people can do in the home to prevent and treat the symptoms.

Only the most simple, inexpensive, and readily available medicines that may be used safely in the home are described in detail. Chapter Seven covers the use of such medicines in more detail. If available, the national standards of your country for treating specific problems should be followed; the information provided here is merely a guide.

For medicines or treatments not described here, it is the responsibility of the health care worker prescribing or distributing them to give full instructions on how and when they should be used.

When sick people and their families must seek help

This section describes the symptoms and changes that should warn the person with AIDS or the family to seek help from a health care worker. You, the health care worker, must explain to sick people and their families that the appearance of the symptoms and signs described in this section means that they need to seek the advice and help of a health care worker, preferably the health care worker they usually see, who may be working in the community, at a clinic, health centre or hospital. It is much better for people to go to the same place and work with the same health care worker repeatedly during the process of treating AIDS symptoms than it is to keep changing or shopping around. Meeting more health care workers does not mean increasing the chances of having good health.

Notes

This section is for any notes you may have on the topic, based on your experience of treatments, on your knowledge of local conditions or on further training you may receive.

Fever

Problems and possible causes

When a person's body temperature is too high, they have a fever. Fever is not a disease in itself but a sign that something is wrong in the body. Fever may indicate one of many different illnesses.

High fever can be dangerous, especially in small children. Fever as a symptom can make anyone feel very uncomfortable.

In people with AIDS fevers often come and go. It is difficult to know whether the fever is a symptom of a treatable infection or whether it is due to the HIV infection itself. The causes of fever include:

· AIDS-related opportunistic infections, such as tuberculosis
· endemic diseases, such as malaria
· HIV infection itself.

It is important to identify tuberculosis as early as possible because it can be easily spread to others in the home, especially to children. See Chapter Six for more information about tuberculosis.

What to do at home

The best way to check whether someone has a fever is to use a thermometer and measure their temperature. If you do not have a thermometer you can still get an idea of whether someone has a fever by putting the back of your hand on their forehead and the back of your other hand on your forehead. If they have a fever, you should be able to feel the difference.

Figure

How to lower a fever

· Remove any unnecessary clothing and blankets; fresh air (for example from a breeze) is not harmful and helps to lower the fever.

· Cool the skin by taking baths or pouring water on it, putting cloths soaked in water on the chest and forehead and fanning the cloths, or just wiping the skin with wet cloths and letting the water evaporate.

Figure

· Provide plenty of water, weak tea, broth or juice. When someone has a fever they lose more fluids than usual and this can make them feel worse, and can cause them to become dehydrated.

· Use medicines that reduce fever (antipyretics): for example, aspirin or paracetamol, two tablets every eight hours. For children the dose is lower and depends on size (weight) or age. See Chapter Seven for specific information about these medicines.

How to manage the discomfort of fever

· In between bathing and cooling the skin to lower the fever, keep the skin clean and dry.
· Use lotions or powders to prevent skin problems such as rashes, sores, sore areas or broken areas.

When sick people and their families must seek help

You should encourage people to seek help if they have a fever and:

· are very hot, indicating a very high fever

· the fever continues for a long time

· the fever is accompanied by coughing and weight loss

· the fever is accompanied by symptoms such as stiff neck, severe pain, confusion, unconsciousness, yellow colour in the eyes, sudden severe diarrhoea or convulsions

· are pregnant or have recently had a baby

· live in an area where malaria is common and the fever has not gone away after one treatment with antimalarial medicine; discourage people from treating themselves repeatedly with such medicine.

Notes on fever

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Diarrhoea

Problems and possible causes

Diarrhoea is very common in people with AIDS. The diarrhoea is usually clear and watery and is sometimes accompanied by abdominal cramps and vomiting.

What is diarrhoea?

The number of stools normally passed in a day varies with diet and age. In diarrhoea, the stools contain more water than normal - they are called loose or watery stools. They may also contain blood, in which case the diarrhoea is called dysentery. Frequent passing of normal stools is not diarrhoea.

People usually know when they have diarrhoea - the stools smell strongly or pass noisily, as well as being loose and watery. Someone has diarrhoea if they have three or more loose or watery stools in a day.

Diarrhoea is more common in people who have AIDS than in those who do not.

There are two types of diarrhoea, acute diarrhoea and persistent diarrhoea.

· Acute diarrhoea lasts for less than two weeks.

· Persistent diarrhoea is when someone has more than three liquid stools a day every day for more than two weeks.

The most common causes of diarrhoea in people with HIV infection are:

· intestinal infections from food or water that is not clean and fresh.
· opportunistic infections related to AIDS
· side-effects of some medicines.

Why is diarrhoea dangerous?

The two main dangers of diarrhoea are dehydration and malnutrition. Dehydration is the loss of a large amount of water and salt from the body, which if not treated can cause death.

How does diarrhoea cause dehydration?

The body regulates the amount of water and salts it needs by a two-way process. It takes in water and salts from the food and drink consumed. It also gets rid of excess water and salts through the stools, urine and sweat. In a healthy person there is a balance between intake and output. When someone has diarrhoea, however, the intestines do not work normally and this balance breaks down. Increased amounts of water and salts are passed into the intestines and the output of water and salts becomes greater than the intake. This results in dehydration. The greater the frequency of diarrhoea the more water and salts are lost. Dehydration can also be caused by vomiting, which often accompanies diarrhoea.

Dehydration occurs faster in infants and young children, in hot climates, and in people who have fever.

How does diarrhoea cause malnutrition?

Diarrhoea (either acute or persistent) can cause malnutrition or make it worse because:

· nutrients are lost from the body in the stools

· people with diarrhoea often do not feel hungry

· some think wrongly that they should not eat when they have diarrhoea, or even for some days after the diarrhoea lessens.

What to do at home

How to prevent diarrhoea

· Drink clean water. Boil water that is to be used in making food or drinks. The water need only boil for a few seconds. Drinking water from a dirty well, or water kept in a dirty container, can cause diarrhoea.

· Eat clean, safe food. Eat freshly prepared foods. Make sure that raw foods are washed and that cooked food, especially meat, has been cooked properly. Badly washed food, or food not protected against dirt, flies and animals can be unsafe to eat because it can become contaminated with disease-causing organisms. If previously cooked foods are to be eaten, make sure they have been stored safely and reheated thoroughly at a high temperature.

· Clean your hands. This is particularly important. People should always wash their hands:

- after using the latrine
- after helping somebody else use the latrine
- after cleaning soiled children or sick people
- before preparing food or drink for them-selves or other people.

Three rules for treating diarrhoea in the home

The treatment recommended here is suitable for anyone with diarrhoea, with or without AIDS.

I. Drink more fluids than usual

Dehydration can usually be prevented in the home by drinking more fluids as soon as the diarrhoea starts.

What fluids?

People should be advised by health care workers on the type of fluids to drink (see the section on how to treat dehydration below). Fluids such as unsweetened juices and weak tea or food-based fluids such as gruel, soup or rice water are all effective in combating dehydration.

In the case of breast-fed infants with diarrhoea, the mother should continue to breast-feed and try to do so more often than normal (at least every three hours).

Figure

How much?

Drink as much as possible.

If someone does not feel thirsty they may have to force themselves to drink. It may help people to keep a glass of water nearby and sip some of it every five to ten minutes.

It is particularly important to encourage children with diarrhoea to drink. Give children under two years old about a quarter to a half of a large cupful of fluid (50-100 millilitres) after each loose stool. Give older children one half to one large cupful (100-200 millilitres) after each loose stool.

2. Continue to eat

Figure

If people try to stop eating when they have diarrhoea this can cause malnutrition or make existing malnutrition worse, and will not decrease the diarrhoea. The fluids taken in do not replace the need for food. It is very important for people to take the nutrients needed to stay strong and prevent weight loss - a strong person will resist illness better.

Even if someone does not feel hungry they should eat small amounts of nutritious and easily digestible food frequently. After the diarrhoea has stopped, an extra meal each day for two weeks will help to regain any weight lost during the illness.

It is particularly important to encourage young children with diarrhoea to eat. Some children will continue to need extra food after the diarrhoea has gone for some time to make sure they regain any weight lost.

What foods?

Advise people to eat foods with the largest amounts of nutrients and calories relative to bulk. These should be mixes of cereal and locally available beans, or mixes of cereal and meat or fish. Oil can be added to these foods to make them more energy-rich. Dairy products, eggs and bananas are also suitable. Very dilute soups are recommended as fluids, but are not sufficient as foods because they fill you up without providing sufficient nutrients.

Advise people to avoid:

· high-fibre or bulky foods, such as fruit and vegetable peels, and whole grain cereals; these are hard to digest

· foods or drinks containing a lot of sugar, such as commercial soft drinks, as these can worsen diarrhoea.

Prepare foods by cooking well, mashing or grinding to make them easier to digest.

The section in this chapter on nutrition problems gives more detailed information about healthy foods.

How much food?

People should eat as much as they want. They should take some food every three or four hours (six times each day) - food should be given more often to young children with diarrhoea. A person may prefer small, frequent meals and these are best because they are more easily digested.

3. Recognize and treat dehydration early

People should watch for signs of dehydration (feeling very thirsty, feeling irritable or lethargic, and the skin going back slowly when pinched). If someone notices these signs, they should take oral rehydration solution used by health care workers to treat people with dehydration, and it can also be used in the home. It is made by dissolving a packet of oral rehydration salts (ORS) in cooled water that has previously been boiled.

ORS packets are available in most parts of the world. Dissolve the contents of the packet in the amount of water indicated on the packet. Not all packets are the same size so people will have to read the instructions to be sure how much water to add. If they use too little water, the drink could make the diarrhoea worse. If they use too much water, the drink will be less effective. The mixture should be stirred well and then drunk the same day it is prepared.

If ORS packages are not widely available you should advise people that they can still make a suitable solution at home. You should advise on the recipe for the solution used in your country.

Other treatments for diarrhoea

Discourage the use of medicines at home to control diarrhoea. Further details about when to use such medicines are given in the section on medicines for diarrhoea in Chapter Seven.

For severe stomach cramps that sometimes accompany diarrhoea, paracetamol may be helpful. Recommendations on the dose to take are given in the section on medicines for pain in Chapter Seven.

Figure

Other problems that may come with diarrhoea

Skin irritation in the rectal area

To prevent or treat sore or broken skin you should advise the sick person to:

· dean the rectal area gently with water after each bowel movement and pat dry

· apply a lotion to help relieve the discomfort and protect the skin

· sitin warm water containing a little pinch of salt three or four times a day; this may also relieve the discomfort.

Haemorrhoids

Haemorrhoids can develop after the diarrhoea has been present for some time. They are caused by a weakening of the walls and blood vessels of the rectum. The tissues around the anus become very sore and itchy. The blood vessels may become very tender and may bleed - small amounts of blood may be noticed in stools or during cleaning of the rectal area.

Trying to relax during bowel movements and not straining or pushing too hard to pass the stools can prevent haemorrhoids. Sitting in a bath may help to ease the discomfort and paracetamol can be taken to relieve the pain.

To help someone with diarrhoea who cannot get out of bed

Use a bedpan or other suitable plastic or metal container. Be sure it is not too high and can be used by slipping it under the person in bed. Empty the contents frequently. Do not use this container for any other purpose once it has been used as a bedpan. Change wet or soiled bedding immediately to prevent damage to the skin.

When sick people and their families must seek help

People are at risk of dehydration and should seek help if they have diarrhoea and:

· are very thirsty
· have a fever
· cannot eat or drink properly
· do not seem to be getting better
· pass many watery stools
· see blood in the stools
· are vomiting and cannot keep down fluids.

Help should be sought quickly if signs of dehydration have already developed, such as:

· the person is extremely thirsty
· the person is in an irritable or lethargic state
· the skin returns slowly after pinching.

The information contained in this section has been modified from the WHO programme for Diarrhoeal Disease Control modular course "Supervisory Skills: Treatment of Diarrhoea"; see the "Resource List" which follows Chapter Seven in this handbook.

Notes on diarrhoea
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Skin Problems

Problems and possible causes

Skin problems in people with AIDS are common and unfortunately tend to be chronic. They can be controlled with the right treatment, but rarely completely cured. The following skin problems occur more often in people who have AIDS than in those who do not:

· rashes
· itching skin
· painful sores on the skin
· increased dryness of the skin
· slow healing of wounds
· boils and abscesses.

The most common causes of some of these problems include:

· yeast infections (thrush, candidiasis)
· other fungal infections (e.g. ringworm)
· bacterial infections
· shingles (herpes zoster)
· poor hygiene
· allergic reactions to medicines or skin irritants
· bed sores (caused by lying in one position in bed)
· eczema
· Kaposi sarcoma.

What to do at home

As a general rule, cleaning the skin frequently with soap and water and keeping it dry between washing will prevent the most common problems.

Almost all skin problems involve the sensation of itching. Scratching the itching skin with fingernails can make things worse, either by breaking the skin or by introducing or spreading infection. This can be avoided by keeping nails short. Try to encourage people not to scratch any type of skin lesion or sore. However, rubbing with the flat of the fingers or gentle slapping can give some relief.

Itching can be reduced in a number of ways, including the following:

· cooling the skin with water or fanning it
· applying lotions such as calamine that are soothing and prevent the skin from becoming too dry
· not letting the skin get hot and not applying warmth to itching areas
· using effective traditional remedies that are available locally from a herbalist.

If people have trouble with very dry skin, they may have to avoid soaps and detergents and use bath oils and skin creams as much as possible. Vaseline, glycerine, and vegetable or plant oils can be as effective as the more expensive oils and creams sold in the shops.

To prevent babies, or someone who is confused, from scratching themselves, cut their fingernails very short or put gloves or socks over their hands.

For children in nappies who have diarrhoea or yeast infections, the buttocks area will need special care. For example people should:

· leave the baby's bottom exposed to air as much as possible

· soak the baby's bottom with warm water between nappy changes

· not let the child remain in wet nappies or cloths but remove or change them as soon as they become soiled

· avoid wiping the buttocks area; instead squeeze water from a wash cloth or pour water over the area and then pat dry

· use simple lotions provided by a health care worker or pharmacist - this may help cure rashes in the nappy area, particularly if they are treated early

· not forget to wash their hands afterwards!

Treatment of wounds

Wounds (including open sores and ulcers) which are not infected:

· Wash the affected areas with clean water - preferably water which has been boiled and cooled - mixed with a little salt (one tea-spoonful of salt to one litre of clean water) or gentian violet solution (one teaspoonful of gentian violet crystals in half a litre of clean water).

· Protect by covering with clean gauze bandages or cloth, wrapped loosely.

· Put warm compresses of weak saltwater on the area four times a day (one teaspoonful of salt to one litre of clean water).

· If the wound is on the legs or feet, raise the affected area as high and as often as possible. During sleep it should be on pillows. During the day, try to raise the foot for 5 minutes in every 30 minutes. Walking helps the circulation, but standing in one place or sitting with the feet down for long periods is harmful.

Closed wounds (including abscesses and boils) which are infected:

Boils - and some abscesses - are red, raised painful lumps on the skin. They are most common on the groin, buttocks, armpits, back and upper legs. They may start as single lumps under the skin or in groups. They quickly become more painful as they increase in size. Once someone notices a red lump under the skin they should start using warm compresses over the area for 20 minutes four times a day. The warmth of the compresses will help the boil or abscess "mature" or to form and harden and drain its contents. If they are having a great deal of pain and the boil or abscess continues to get bigger without draining (i.e. opening out onto the skin) they should seek help. The wound may require drainage and treatment with antibiotics.

Figure

Open wounds (including abscesses that are actively draining) which are infected:

If wounds are not cared for properly they can become infected. A wound is infected if:

· it becomes red, swollen, hot, and painful
· it has pus either draining from it or visible under the skin
· it begins to smell bad.

The infection is spreading to other parts of the body if:

· it causes fever
· there is a red line above the wound
· the lymph nodes under the skin in the neck, armpits or groin become swollen and tender.

People should attend to infected wounds with one of the following:

· a salt wash (one teaspoonful of salt in one cupful of clean water)
· hot compresses over the wound for 20 minutes, four times a day.

If there is pus or dead tissue, you should show the person how to dean it away.

Figure

Advise people to treat infected wounds as follows:

· Use a gentian violet solution on the wound before applying dressings.

· If the wound is on a hand or foot, soak it in a bucket of hot water with soap or potassium permanganate (one teaspoonful of potassium permanganate to a bucketful (4-5 litres) of clean or boiled water - do not exceed the recommended amount; if the solution is too concentrated it can bum or irritate the skin). Be sure that any compress or water applied to the wound is not too hot, since damaged skin can easily bum.

· When it is not being soaked, keep the infected part at rest and elevated (raised above the level of the heart).

· If there is dead tissue, hydrogen peroxide can be used to rinse the wound.

Advice on washing or cleaning an infected wound and applying dressings

· Use gloves, plastic bags, or a big leaf when handling cleansing cloths or dressings to avoid touching blood from the wound, and wash your hands afterwards with soap and water.

· Wash around the edge of the wound first, then wash from the centre out to the edges using separate little pieces of clean cloth for each wipe if possible.

· Cover the area with a dean piece of cloth and bandage if the wound has pus or blood. If the wound is dry it can be left exposed to the air - it will heal quicker this way.

Dressings are used to cover wounds to prevent them from becoming infected, to protect other people from infection, to keep medicines in place or to avoid painful contact with the environment.

· Never apply a dressing tightly.

· Make sure dressings are dean.

· Change the dressing at least once a day. Be sure to look for signs of infection.

· After changing the dressing, rinse the soiled cloth and bandages in water and soap and put them in the sun to dry or put them in boiling water for a short period and hang them to dry. If the dressings are not to be reused, always dispose of them properly by burning them or putting them in a pit latrine.

If soil or dirt gets into the wound it can become infected with the bacteria that cause a serious disease called tetanus (lockjaw). You should therefore ensure that people are fully immunized against tetanus. Even if they have been immunized for tetanus before, they may still need further immunization. Advise people who are not immunized against tetanus to seek medical help immediately if they are wounded or develop open sores.

Shingles

Figure

Shingles (herpes zoster) is a viral infection which used to be seen only in older people or in those with weakened immunity for various reasons. Now shingles is very common in people with AIDS and it may be one of the first symptoms they have of HIV infection or AIDS.

Shingles begins as a painful rash with blisters, usually on the face, limbs or trunk. Shingles on the face may affect the eyes, causing pain and blurred vision. The blisters often combine, resulting in a large eroded or broken area, and there may be an intense burning feeling in the affected area. Healing takes place over several weeks and leaves discoloured areas on the skin.

The following measures may be helpful:

· Applying calamine lotion twice daily to relieve pain and itching and promote healing.

· Keeping the sores dry and not letting clothes rub on them if possible.

· Wearing dean, loose-fitting, cotton clothing.

· Relieving pain with aspirin or paracetamol, but sometimes the pain maybe so severe as to require stronger prescribed medicines, including pain killers and sedatives at night. For additional measures to control pain, see the section on pain in Chapter Seven.

· Preventing infection by bathing the sores with warm salt water three or four times a day or applying gentian violet solution once a day, or antibiotic skin creams or ointments if available.

· Watching for signs of infection of the shingles sores such as redness or pus. If infection occurs treat as indicated for infected wounds above.

The pain usually diminishes after three or four days. Unfortunately some people develop a persistent pain and scarring over the affected area. Rubbing creams on the scars or painful areas may help; medicines for pain such as aspirin or paracetamol may also be needed.

Allergic reactions

Allergic reactions to medicines are more common in people with AIDS. These often appear suddenly and start as skin rashes, redness, and itchy skin. If people think they may be having a reaction to a medicine they should immediately go to see the health care worker who prescribed it. Medicines that commonly cause reactions in people with AIDS include:

· anti-tuberculosis medicines
· antibiotics
· anti-cancer medicines.

See Chapter Seven for further details of possible reactions to anti-tuberculosis medicines.

Kaposi sarcoma

Kaposi sarcoma is a cancer of the cells in the blood vessels or lymph system. The cancer may begin as:

· discoloured (brown or purple) areas on the skin or in the mouth
· enlarged lymph glands which are not painful.

Both of these are a type of external cancer (affecting the outside of the body) and are mostly a problem for cosmetic reasons, but the cancer may go on to affect internal parts of the body causing the enlargement of internal organs or bleeding from the lungs or digestive tract. How Kaposi sarcoma will appear in a specific person and what its course will be are very difficult to predict. Some people have only mild complaints arising from the appearance of the lesions; others may become very ill as a result of the cancer.

Because of the variety of ways in which Kaposi sarcoma may appear and because of the numerous parts of the body that may be affected, this disease can be mistaken for many others. Once the diagnosis of Kaposi sarcoma is made, it indicates that the person has AIDS.

The specific care needed for the problems caused by Kaposi sarcoma will depend on where the cancer is situated and on what type of problems it is causing.

Bed sores

It is very important to prevent infections resulting from sores of any type that do not heal adequately. Included in this category are "bed sores" or sores caused by breakdown of the skin due to pressure. These chronic open sores appear in people who are so ill that they cannot roll over in bed, especially those who are very thin and weak. The sores form over bony parts of the body where the skin is pressed against the bedding. They are most often seen on the buttocks, back, hips, elbows and feet.

Figure

To prevent bed sores in sick people you should advise them to:

· get out of bed as much as possible

· change position, when lying down, every two hours from one side onto the back, from the back onto the other side, and so on in order to prevent prolonged lack of circulation to any one area of the body; this is particularly important if an area of skin is already affected - the person may need help with this in the home if they are very weak

· use soft bed sheets and padding, which should be hung to air daily and changed each time the bedding is soiled with urine, stools, vomit or sweat. Straighten the bedding often as lying on wrinkled bedding can hurt the skin

· put cushions under the body in such a way that the bony parts rub less (see illustration below)

· eat as well as possible; extra vitamins may help.

A bedridden child who has a severe chronic illness should be held often on someone's lap.

When sick people and their families must seek help

· If pus, redness or fever (indicating infection) accompany the skin problem.

· If the wound has a bad smell, if brown or grey liquid oozes out, or if the skin around it turns black and forms air bubbles or blisters - this might be gangrene, a very dangerous condition. Medical help must be sought very quickly.

· If there is severe pain from a skin problem, like shingles, and the sick person is unable to sleep or function during the day.

· If shingles affects the eyes.

· If there is an allergic skin reaction to a medicine.

· If the sick person is wounded or develops an open sore and they are not fully immunized against tetanus.

Notes on skin problems
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Mouth and throat problems

Problems and possible causes

Soreness in the mouth, usually accompanied by white patches on the tongue, is a common symptom in people with AIDS. Sometimes it progresses into the throat and esophagus, causing painful swallowing, thereby interfering with eating and drinking. Other associated problems are blisters and sores on the lips, and dental problems. The following diseases may cause a sore mouth or throat in people with AIDS:

· thrush (yeast infection), resulting in white patches and surrounding redness, not only in the mouth but possibly in the throat and esophagus

· oral herpes simplex (blisters and sores on the lips)

· malnutrition (cracks and sores on the mouth)

· Kaposi sarcoma of the mouth or throat

· dental problems

· hairy leukoplakia.

What to do at home

Poor nutrition can cause problems in the mouth and can make existing problems worse. Encourage people to eat a healthy diet or take vitamin supplements. For additional information refer to the section on nutrition in this chapter and the section on medicines for nutrition problems in Chapter Seven.

To help prevent problems in the mouth and throat, the mouth can be rinsed with warm salt water (half a teaspoonful of salt in a cupful of water), or with a mouthwash solution after eating and between meals. The wash should be swished gently in the mouth then spat out (not swallowed or it may upset the stomach and cause nausea).

General hints for dealing with a sore mouth:

· Eat soft foods rather than hard or crunchy foods.

· Eat bland not spicy foods.

· Use a straw for liquids and soups. This may help when taking in the food needed while preventing it from touching the sore areas.

· Cold foods, drinks or ice, if available, may help numb the mouth and relieve discomfort.

Thrush

Figure

Thrush is a fungal infection that causes small white patches on the inside of the mouth and tongue. The infection looks like milk curds stuck to raw meat. If the white plaques scrape off with a brush or a fingernail it is probably thrush. If it does not it may be another condition called hairy leukoplakia (described below).

You should advise someone with thrush to:

· gently scrub the tongue and gums with a soft toothbrush at least three or four times per day, then rinse the mouth with dilute mouthwash, or a salt water or lemon water rinse

· suck a lemon if it is not too painful - the acid of the lemon slows down the growth of the fungus

· apply gentian violet solution three or four times a day - gentian violet solution is prepared by dissolving 1 teaspoonful of gentian violet crystals in half a litre of dean water.

If necessary, you may prescribe antifungal oral suspensions or lozenges given three or four times a day. In some people, thrush affects not only the mouth but the entire esophagus causing pain on swallowing and a burning sensation in the chest. See the section on medicines for fungal infections in Chapter Seven for information on the use of these medicines.

Hairy leukoplakia

Hairy leukoplakia may look like thrush. However, it does not cause pain, it will not scrub off the tongue or gums, and it commonly makes vertical ridges on the edges of the tongue. It is mentioned here only so that you know that it can be confused with thrush. There is no need for a specific treatment for this condition. It will not interfere with the ability to eat or with a person's general comfort. The main point is to not use too many medicines for thrush if in fact the problem is hairy leukoplakia.

Herpes simplex sores

These are painful blisters on the lips, which may appear after a fever. In people with AIDS these sores may appear even without a fever and may last a long time. Gentian violet solution (made as described in the previous section on thrush) can be applied to the herpes sores on the lips and mouth. Although the strong purple colour may bother some people, the solution can help in preventing the sores from becoming infected.

Dental problems

Thorough cleaning of the teeth and gums is important. Many people with AIDS suffer from inflammation of the gums, tooth abscesses and infection. For this reason, people should be encouraged to make regular visits to a dentist when possible, and to be particularly careful about oral hygiene, being sure to brush the teeth and clean between the teeth (using dental floss or toothpicks) to remove food particles.

If someone does not have a toothbrush, they can use a tooth-cleaning stick.

Figure

Or, they can tie a piece of towel around the end of a stick, and use it as a toothbrush.

Figure

If toothpaste is not available, a tooth-cleaning powder can be made by mixing salt and bicarbonate of soda (or ashes) in equal amounts. To make it stick, the brush should be wetted before being put in the powder. This mixture works just as well as commercially available toothpaste for cleaning teeth.

Figure

When sick people and their families must seek help

· If the sick person is becoming dehydrated or is unable to swallow properly.

· If there are symptoms of esophageal thrush such as a burning pain in the chest or a deep pain on swallowing.

Notes on sore mouth and throat
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Coughing and difficulty in breathing

Problems and possible causes

Respiratory problems, particularly lung infections, are common in people with AIDS and can be quite serious. The most common symptoms are chronic cough, shortness of breath, chest pains, and increased production of mucus (also called sputum).

The most common causes of respiratory problems include:

· colds and flu
· bronchitis
· pneumonia
· tuberculosis (see Chapter Six)
· heart problems.

What to do at home

People should be made aware of the signs and symptoms that are of concern, including:

· the onset of a fever or a change in the regular fever pattern of the sick person
· blood in the sputum
· a sudden or rapid worsening in their ability to breathe or catch their breath after normal activity
· a change in the colour of their sputum from clear to grey, yellow or green.

The following advice may help to decrease respiratory problems.

· Keeping active by walking about, turning in bed and sitting up. This encourages the lungs to drain.

· Other measures which encourage drainage of the lungs include massage or gentle patting on the back of the chest over the lungs. Someone in the home can do this, especially for younger children.

· If pain is felt in the chest or ribs during coughing, a pillow or hand should be held tightly over the area that hurts when coughing. This helps make the cough less painful.

· During the day it may be beneficial to cough and clear the lungs at least four times a day. Even though coughing may cause discomfort, it is an important way to clean the lungs of the accumulated mucus and disease-causing bacteria.

Thus, anyone with lung problems should be encouraged to cough. Several points are worth mentioning:

· The bacteria or infectious agents in the sick person's sputum can be passed to other people through the air, especially when coughing. When anyone is coughing, they should always cover their mouth with their hand or with a cloth which can be cleaned or disposed of.

· All homes and other places where people meet should be ventilated - make sure there is a way in and a way out for fresh air.

· An irritating cough can sometimes be relieved with safe cough remedies, for example:

- Soothe the throat by drinking tea with sugar or honey.

- Use a safe, home-made cough syrup. Throughout the world families and herbalists have suggestions for things that soothe coughs.

- Commercial remedies may also be useful although they are often expensive and usually work no better than home remedies.

· A constant cough can be very tiring and interfere with a person's rest. If coughing keeps someone from being able to sleep at night a cough suppressant can be prescribed. It is important to cough, so do not encourage the use of cough suppressants during the day. They should only be used at night to allow someone to rest.

Pain in the chest without signs of infection, and difficulty in breathing, are common problems in people with AIDS. Very often the cause is not known. Warm compresses to the area where the discomfort seems to be centred may be helpful. Additional hints are provided in this chapter under the section on pain. Medicines like aspirin or paracetamol may be useful at times. Paracetamol is safer for children. The dosages are described in the section on medicines for pain in Chapter Seven. It is important that the things done to help relieve the pain will also help someone in their efforts to keep active, moving and coughing.

When someone is experiencing difficulty in breathing the following advice might help:

· Lie with pillows under the head, or with the head of the bed raised on blocks.
· Sit leaning forward with the elbows on the knees or on a low table.

· Have someone else there. Difficulty in breathing can be very frightening.

In children with respiratory problems it is important to clear the nose if it is congested, and especially if the congestion interferes with the ability to eat or to be breast-fed. Dry or thick sticky mucus can be softened and removed with a wick moistened in salt water (a quarter of a teaspoonful in a cup of water).

Figure

If a lung infection with cough is present, it is important that plenty of fluids are drunk: first, to replace the extra fluids lost through the lungs by rapid breathing, and second to help keep the mucus in the lungs from becoming too dry and sticky and more difficult to cough out. Remind parents that fast or difficult breathing in children may be dangerous and needs medical treatment quickly.

Encourage children with respiratory problems to take more fluids by increasing the frequency of breast-feeding or by giving additional fluids by spoon or cup.

If the problems experienced with coughing, chest pain, or other respiratory symptoms are chronic (lasting more than three weeks) and do not respond to antibiotic treatment, tuberculosis may be the cause and should always be considered (see Chapter Six).

When sick people and their families must seek help

You should advise people to seek help if the sick person has a cough or difficulty in breathing and:

· sudden high fever develops

· they are in severe pain or discomfort

· the colour of the sputum changes to grey, yellow or green

· the sputum has blood in it

· they have had a cough for more than three weeks, especially if it also involves spitting up blood, pain in the chest or difficulty in breathing.

In children (particularly below the age of five) respiratory infections can be very serious. All children should be brought to a health care worker for immediate attention if they are:

· breathing with difficulty through the mouth or with audible wheezing
· breathing faster than usual
· unable to drink because of problems with breathing.

Notes on coughing and difficulty in breathing
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Genital problems

Other sexually transmitted diseases (STDs) and opportunistic infections of the genital area are common in both men and women with AIDS, and may recur on numerous occasions. Considerable evidence suggests that STDs that cause ulcerative lesions promote the transmission of HIV through sex. Effective diagnosis, care and education about genital problems are, therefore, crucial to both the prevention of HIV transmission and to the care of people with HIV infection.

In women, the genital area consists of the external and internal labia of the vagina, the surrounding skin surface, the opening of the vagina (which is called the vulva) and the vagina itself. The genital area in the male consists of the penis, which may be circumcised or not, the scrotum containing the testicles and the surrounding skin. If uncircumcised, the end of the penis will be covered with loose skin which can be pulled back. This is called the foreskin.

The rectal area and the inguinal areas of the groin in men and women may also be involved in genital problems such as infections, rashes, warts or sores.

Problems and possible causes

Opportunistic infections of the genital area, including certain sexually transmitted diseases (STDs), are common in both men and women with AIDS. They often cause pain and discomfort.

Figure

There are six common ways that such genital problems appear in men and women:

· an unusual discharge (a mucus or pus-like substance) from the vagina
· an unusual discharge from the urethral opening of the penis
· open sores or ulcers in the genital, groin or rectal areas, which sometimes start as blisters
· a rash in or around the genital area
· warts in the genital area or around the anus
· swollen glands in the groin.

Figure

If a person feels they may have a sexually transmitted disease (STD), their first action should be to seek treatment from a health care worker where available, BEFORE attempting any form of home treatment.

What to do at home

Firstly and very importantly, always advise people to use a condom each and every time they have any sexual contact. It is dangerous for someone who is already infected with HIV' to be exposed to other sexually transmitted diseases. The use of condoms offers protection from all STDs, and also provides protection to the partners of those with such conditions. (See Chapter Two for further information on safer sex.)

Vaginal discharge

All women normally have a small amount of vaginal discharge which is clear, milky-white or slightly yellow and varies in amount and appearance over the course of the monthly menstrual cycle. Any change in this normal discharge, particularly if it is accompanied by an unpleasant smell, itching, soreness and sometimes fever, is probably caused by a sexually transmitted infection such as gonorrhoea, chlamydia or trichomonas.

Vaginal infections are important because:

· They may be passed on to others through sexual intercourse.

· Sexually transmitted infections (e.g. gonorrhoea, chlamydia) are particularly likely to spread from the genital area to the upper reproductive tract causing pelvic inflammatory disease. This may even lead to abscesses with severe cramps and pains in the abdomen, with the result that such infections become difficult to treat, even with strong medicine, and can be life-threatening.

· They increase the risk of acquiring, or passing on, HIV infection during sex.

· They may be transmitted to an unborn child during pregnancy.

People should be given the following advice on ways to avoid vaginal problems:

· Always use condoms when having any sexual contact (see Chapter Two).

· Keep the vulva and anal area clean by washing with water (but avoid soaps that damage this delicate skin).

· After going to the latrine, wipe the anus in a direction away from the vagina so that faeces doesn't get into the vulva, vaginal region.

· Avoid washing out the vagina or putting anything (e.g. leaves, herbs) inside unless advised by a health care worker.

Anyone with vaginal discharge should be examined by a health care worker.

Urethral discharge in men

Pus or mucus discharge from the opening of the urethra, often accompanied by burning when passing urine, is usually a sign of an STD. Anyone with these symptoms should be examined by a health care worker.

Genital sores

Open sores or lesions on the genitals may be caused by an STD. As with any open wound (see the section on skin problems in this chapter) an additional infection may occur. People with open sores should be advised to:

· always use condoms when having any sexual contact (see Chapter Two)

· keep the affected area dean with soap and water

· between washings keep the wound dry

· watch for signs of infection, and seek help if redness, pus or swelling are seen, or if the sores become painful.

Genital warts

Genital warts are very common, are infectious, and can be caught by sexual contact then passed on to other people in the same way. They are often larger, spread more quickly and are more difficult to treat in people with AIDS. In women, they appear as skin-coloured lumps or swellings on the outside and inside of the vagina, and the area around the anus, while in men they appear particularly under the foreskin and around the anus. If they get rubbed by clothing or damaged they may become sore (inflamed), infected and may even bleed.

Encourage people to seek early treatment from a health care worker for this condition. Local treatment of the warts provided by a health care worker can be effective if it is applied before the warts are too big. If someone waits too long and the warts become quite big it may be necessary to have them cut out, a surgical procedure which has risks associated with it. Warts that are damaged may become infected. If this occurs they should be treated like any open wound in the genital area.

Herpes

Herpes is a viral infection that many people get around their mouths or genital area. It tends to remain latent (hidden away), under the control of the body's defences. It occasionally appears as blisters which break down to give painful ulcers which heal slowly by themselves. In people with AIDS, the blisters appear more frequently, spread over a wider area and sometimes do not heal at all. They can be very difficult to treat.

If herpes is diagnosed, advise the person to bathe the affected area with salt solution consisting of a teaspoonful of ordinary cooking salt in half a litre of clean water. They should do this often, every two or three hours if possible. Between times the affected area should be kept dry. Calamine, talcum or starch powder may also be applied to the sore.

Candidiasis

Candidal infections - caused by several of the fungi belonging to the genus Candida - are common but they are particularly frequent and more difficult to cure in people with AIDS. In women, they produce a curdy discharge and cause redness and soreness of the vulva that is accompanied by severe itching. The skin may break down and bleed, particularly if scratched. Candidiasis is also found in men, especially among those who are uncircumcised, and occurs often and severely in men with AIDS. The foreskin and the area underneath it become very sore and red. There may be a yellow discharge under the foreskin. The skin of the penis, scrotum, and around the anus sometimes becomes red, sore and itchy.

Candidiasis is not sexually transmitted but is often brought on by the use of antibiotics for the treatment of other conditions, or simply because the person with AIDS has lowered resistance to the fungi that cause it. The organisms are always present in the genital area but are not normally a problem because the body's defences keep them from growing out of control.

If someone is experiencing candidiasis repeatedly, the following approach may help to alleviate discomfort, to prevent the onset of a new infection (which can occur, for example, as a result of taking antibiotics given for another problem) and possibly to decrease the intensity of an existing infection:

· Apply gentian violet to the vulva and vaginal area or the affected male genital area. To prepare a gentian violet solution dissolve one or two teaspoonfuls of gentian violet crystals in one litre of clean water. Apply once daily for three days. Gentian violet solution should be applied internally or externally to the affected area using a soaked piece of clean cotton wool, cloth or gauze. This should be done for at least three days or until the symptoms improve - if this does not happen then the person must see a health care worker. People should be advised that gentian violet stains clothing and sheets a purple colour.

A rash on the penis or under the foreskin will often respond to soaking in a dilute salt and water solution. Dissolve a teaspoonful of salt in a glass or jam jar of water. Pull back the foreskin, put the penis in the water and soak for 5 minutes. Repeat 2 or 3 times a day.

If this does not work carry out the same procedure using a gentian violet solution (1/2 teaspoonfuls gentian violet in 1 litre of clean water). If the rash does not clear up in 3-4 days the person should ask advice from a health care worker.

Someone who experiences candidiasis repeatedly should learn to recognize the signs of an infection and begin the treatment at home while it is still in the early stages.

Loss of Menstruation

Loss of menstruation and irregular bleeding occur in many illnesses including AIDS. If a woman loses a lot of weight her periods may stop altogether or become infrequent. Loss of menstrual bleeding can have many causes (including pregnancy) and is often seen in women with AIDS. This should be assessed in order to plan for the future care of the woman (see Chapter Six). If a woman misses one or two periods, she should be encouraged to go to the health centre to be examined. If pregnancy is not the cause then the reason for the loss of menstruation should, where possible, be determined.

Always remember that a woman may feel that loss of menstruation represents a loss of capacity to bear children or a loss of femininity and may feel sad or even depressed. You can help a person to fight off this loss of self-esteem by reassuring her that loss of menstruation is experienced by many women for a wide variety of reasons. Women should be encouraged to be with friends, to involve themselves in the people and activities around them, and to remember that they are still worth while and have a great deal to give.

When sick people and their families must seek help

· If a STD is suspected.

· If difficulty or pain in passing urine is experienced.

· If genital warts are present.

· If genital ulcers are present.

· If there is an unusual vaginal discharge that is foul-smelling, itchy, very plentiful, or green, yellow or grey in colour.

· If a pain develops in a woman's lower abdomen, particularly if it is accompanied by a fever.

· If a woman's periods stop or become irregular or erratic.

· If there is a discharge from the penis.

· If there is swelling and/or pain in the scrotum.

Notes on genital problems
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Nutrition problems

Problems and possible causes

AIDS almost always causes severe weight loss, even in people who eat good food. There are many reasons for this including:

· not enough nutritious foods available
· painful or difficult swallowing because of:

- oral or esophageal thrush

- mouth sores such as the blisters caused by herpes simplex

- Kaposi sarcoma lesions (purple lesions which can occur on gums or palate)

- inflammation of the gums or infections of the gums and teeth (redness, pus or swelling of the gums); these can be caused by a lack of vitamin C (found primarily in citrus fruits and in dark green leafy vegetables).

· nausea and vomiting
· chronic diarrhoea
· tuberculosis (see Chapter Six)
· depression or anxiety
· fever from any cause.

What to do at home

A sick person has an even greater need for food than a healthy person. People should be encouraged to think about the foods that will help make them healthy, rather than worry about foods that are not considered to be good for them.

The same foods that are good for you when you are healthy are good for you when you are sick.

All of the foods you are familiar with will fall into one of the following three groups. Everyone should try to eat food from each of these groups at every meal.

1. Body-building foods: These include peas or beans, soya, groundnuts, nuts, eggs, meat, fish and milk.

These foods are rich in protein and contain iron and calcium.

Figure

2. Energy-giving foods: These include potatoes, yams, cassava, taro, plantains, sugar, wheat, rice, millet, maize, animal fats and vegetable oils.

Figure

3. Foods that protect the body from infection (vitamin-rich foods): These include all fruits and vegetables. Dark green leafy vegetables are the most nutritious, then orange-coloured vegetables and fruits. Cooking for too long destroys vitamins so these foods should be cooked or steamed lightly, and the cooking water used as a soup or sauce.

Figure

As mentioned in the section on diarrhoea in this chapter, correct preparation and storage of foods should ensure that they are clean and safe and do not cause disease. This is especially important for infants.

General hints for people who are having trouble eating or maintaining their weight and strength

· Eat small amounts often. Foods that can be eaten with the fingers are easier to manage, particularly if the person is weak.

· To supplement a regular diet of nutritious foods, vegetable oil or groundnut paste can be added to food.

· Raw vegetables are not very digestible and can easily be contaminated, so they are not advisable.

· If someone is experiencing nausea or vomiting, preparing the foods in liquid or semi-liquid form may help.

· If persistent diarrhoea is present, use soft or mashed foods and avoid irritating foods, for example pepper and raw vegetables.

· Drink plenty of fluids and watch for dehydration (see the section on diarrhoea in this chapter).

· Taking vitamin tablets may be helpful although eating good foods is always better (see the section on medicines for nutrition problems in Chapter Six).

· Certain problems that decrease the appetite or the ability to eat, such as thrush or dental problems, can be treated and action should be taken before the problem gets very bad. Refer back to the section on sore mouth and throat in this chapter for more information about this.

· If a person is interested or has more questions, they could try to find reading materials in their own language that give further information. Many health centres have books and pamphlets on nutrition.

Loss of appetite or difficulty in eating can be very distressing for the sick person and their family and might make them feel helpless and ineffective. It may help if they can discuss this with a health care worker. A nutritionist may also be available at the health centre to provide further information.

When sick people and their families must seek help

People should be encouraged to seek help if a sick person:

· becomes dehydrated or very malnourished
· is suddenly unable to eat
· starts to have severe abdominal pain with or without vomiting.

Notes on nutrition problems
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Nausea and vomiting

Problems and possible causes

Nausea and vomiting can be an important problem for people with AIDS. These symptoms may be caused by:

· medicines
· infections
· a problem with the stomach or intestines
· Kaposi sarcoma in the intestines
· HIV infection itself.

In some people with AIDS, nausea and vomiting are very short-lived, and go away by themselves or after treatment of the cause. In others, they are chronic or long-lasting and become a part of daily life.

What to do at home

If a person is having trouble with nausea and vomiting advise them to:

· avoid cooking smells if possible

· watch out for dehydration (see the section on diarrhoea in this chapter)

· talk to a health care worker, who may prescribe medicine to control the symptoms if they are very severe, in order to allow the person to eat. See the section on medicines for nausea and vomiting in Chapter Seven for further details.

If someone is vomiting severely they should:

· not eat any food or drink any fluids for one or two hours

· then gradually start drinking room-temperature water, oral rehydration solution, weak tea, or other clear liquids (about two tablespoonfuls an hour for two to three hours), or suck ice in small amounts

· then increase the amount of fluids to four to six tablespoonfuls an hour for two to three hours; the amount can be increased as desired but people should force themselves to keep taking fluids to make up for what they have lost.

As the nausea decreases, people should increase the amount and types of foods they eat. It may be best to start with small quantities of dry, plain foods such as bread, rice or cassava.

Frequent care of the mouth will remove the foul taste and freshen it. This can include rinsing the mouth with water, or gently scrubbing the tongue and gums with a soft toothbrush or cloth at least three or four times a day, then rinsing with dilute mouthwash or lemon water rinse.

Ventilating or freshening a room may make a person feel better and less nauseated.

It is also a good idea for people to identify and reduce the things that seem to make them feel nauseated, such as specific odours, medicines, or foods (high-fat foods, for example).

A cool compress applied to the forehead, or other things which help someone to relax, may be useful.

When sick people and their families must seek help

· If vomiting occurs repeatedly and fluids cannot be kept down - in such cases the sick person is at risk of becoming severely dehydrated.

· If regular vomiting lasts more than 24 hours, particularly if it is accompanied by pain in the abdomen.

· If the person has a fever in addition to the vomiting.

· If the sick person is vomiting violently, especially if the vomit is dark green, brown, or smells like faeces.

· If the vomit contains blood.

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Anxiety and depression

Problems and possible causes

The diagnosis of HIV infection or AIDS is a crisis for the infected person, their family and their friends. When people receive the news of AIDS they begin to experience the psychological reactions described in Chapter Three, starting with shock. They may feel confused and that their mind is in constant turmoil. How someone reacts and behaves after this initial shock depends on many things, for example how they have dealt with stresses in their life before and what types of support they can get for emotional and social problems. Resources that are available within a culture should be used to deal with anxiety and depression.

Anxiety (a feeling of nervousness, fear and dread) and depression (a feeling of sadness and hopelessness) are normal if someone has been told that they have HIV infection or AIDS, and is trying to cope with it. It is when these feelings are very intense or last a long time, so that normal daily activities are interrupted, that they are considered abnormal.

The physical symptoms experienced with either anxiety or depression can be dramatic and may lead people to think that they are physically ill. Learning to recognize their own symptoms allows people to distinguish between those which are caused by anxiety or depression and those that may indicate the onset of an infection or illness.

Possible explanations for symptoms which resemble those of either anxiety or depression include:

· infections
· side-effects of some medicines
· malnutrition.

Anxiety

Figure

Anxiety, the feeling of nervousness, can have both physical and mental symptoms, including:

· lack of appetite
· feeling short of breath
· shaking
· a sensation that the heart is pounding
· sweating
· tingling sensations, for example in the hands
· feeling faint
· difficulty in sleeping
· a feeling of being out of control
· difficulty in concentrating
· feeling very worried
· feeling jumpy.

Other symptoms include headache, which is discussed in the section on pain.

Depression

Figure

When someone has HIV infection or AIDS they experience many losses in a very short period of time. Examples of this might include loss of health, loss of physical beauty, loss of job or ability to function in the community, loss of mobility, loss of eyesight. For all these losses a person must grieve and will at times feel very unhappy. A person may experience depression in the following ways:

· a feeling of hopelessness
· feeling tired and generally without energy
· inability to find pleasure and the sense that everything is a chore
· irritability
· inability to concentrate and poor memory
· waking up early in the morning or having trouble getting to sleep at night
· eating too much or being unable to eat.

Everyone gets depressed from time to time. Certainly if someone is facing AIDS it is likely they will be depressed for hours or even days at a time. Periods of depression may come and go, alternating with periods when the person doesn't feel depressed at all.

Depression can be more than a passing mood and is something to be concerned about if it occurs very frequently or is very intense. This sort of depression can make it difficult to deal with everyday life, and ultimately can lead people to harm themselves or to consider suicide, especially those who are isolated and those who have suffered considerable losses and stress.

What to do at home

Treatment of anxiety and depression varies from culture to culture. In many communities, support for such problems is often provided by trusted elders in the family and through traditional systems. Together with the suggestions made below, as a health care worker you should help people with AIDS to find the best support in the community.

Chapters Three and Four provide information on emotional support including psychological support and care of the dying. This information will also help you to provide care for anxiety and depression.

The process discussed in the section on psychological reactions to AIDS in Chapter Three is very important here. You can give people an opportunity to progress through the stages of grief simply by encouraging them to talk, and then by listening to them. It is not expected that you will have answers; it is enough that you are there. Encourage them to express their thoughts and feelings.

If you are aware of others in the community with AIDS or with any other chronic or terminal illness who have adjusted to their life and are willing to speak about it, consider finding ways for them to be in contact with those who are anxious or depressed. This peer contact can be a great support and inspiration.

The support you can give people with AIDS will also depend on the resources that the family and the community have to address major concerns such as child care, finances and transport. Become familiar with any support groups in your community or region which can provide help to people with AIDS and those who care for them. If no such groups are available, start one!

Help sick people plan activities on a daily or weekly basis. This can help them to fight the sense that their life is out of control or that they cannot accomplish anything. The important point here is that these plans should be realistic in terms of the person's abilities and time.

Encourage sick people and their family members to learn how to relax. This is a skill that takes time to master, but it can be very helpful. It is good to have both physical and mental relaxing activities.

Although alcohol and other "drugs" may seem to help people relax, if used in excess they may actually result in a worsening of the anxiety and depression over time.

The use of medicines for treating the symptoms of anxiety can be very helpful and may make an enormous difference to someone's ability to function. However, such medicines can have serious side-effects so their use should be carefully supervised.

When sick people and their families must seek help

· If the family or the patient believe that the anxiety or depression is severe enough that the patient may commit suicide, otherwise harm themselves, or harm someone else.

· If there is a prolonged disruption in the sick person's ability to function, such as in sleeping, eating, relating to their family or friends, or going about their daily life, that is not explained by any physical disability they may have.

Notes on anxiety and depression
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Pain

Figure

Problems and possible causes

For some people in the later stages of AIDS, pain becomes a part of daily life. For others it is only occasional and easily controlled. The causes of pain are many and include:

· immobility

· infections, such as herpes zoster

· swelling of the extremities (caused by poor circulation brought on by Kaposi sarcoma or problems with the heart)

· headache alone or associated with meningitis or encephalitis

· nerve problems including pain with or without weakness

· psychological or emotional causes such as depression and anxiety which may increase the sense of being in physical pain.

What to do at home

In attempting to control and relieve pain, people will need to know that pain is also influenced by the person's emotional state and can be frightening. The sick person may need extra reassurance and care.

Encourage people to look out for any clues as to what increases or relieves pain.

People can take an active role in controlling their pain. For example by:

· learning deep and regular breathing techniques, which may help them to relax

· learning to deal with pain through distraction and lessening of their anxiety - see the section on anxiety and depression in this chapter

· taking medicines for pain according to an organized schedule - this can help people to feel more in control and reassure them that the pain will not become too great before medicine is taken

· engaging in physical activity or receiving gentle massage - both of these can be helpful for some types of pain

· imagining or remembering a favourite place or event.

A person may experience a strong burning sensation, particularly in the hands or feet, which may be due to nerve problems. This type of pain is made worse by extremes of temperature, touch (even clothing or bed sheets) and dryness. The pain is sometimes relieved by putting the legs and feet in water. If the skin seems to be sensitive, then people should plan things so that all the care and activities that require touching are done at the same time, to allow for periods of rest in between. The sick person's bed can be lined with soft blankets or cushions.

If a person experiences any swelling, they should raise their legs or swollen parts on pillows, or raise the foot of the bed on blocks. They should also keep changing their body position.

Treatment for pain of all types may include mild medicines for pain (analgesics) which are commonly used in the home, such as:

· aspirin
· paracetamol.

There are other stronger medicines which people can take for pain but these should only be taken with the advice of a health care worker. See the section on medicines for pain in Chapter Seven for further details.

It is important that the sick person takes the mild pain medicines regularly, at least every eight hours, if the problem is long-lasting or chronic. Waiting until the pain is very severe before taking the medicine makes it less likely to work effectively.

If someone is caring for a person with AIDS who is in pain, you should give them advice which will help them to keep the environment as calm as possible. For example you could advise them to:

· talk slowly to the sick person, and use gentle tones
· approach the person slowly and quietly
· avoid using bright lights
· ask others to be quiet and gentle in the presence of the sick person.

People should also be encouraged to talk with the person, and to provide comfort and distraction from the pain, perhaps by:

· playing favourite music quietly
· reading aloud or telling stories
· applying a cool cloth on the forehead, or giving massage
· asking what relieves the pain and then doing it.

If the sick person is unable to move unaided, they should be helped to change position frequently (see the sections on skin problems, and on tiredness and weakness, in this chapter).

Some people like to be wrapped in a blanket or cloth when they are experiencing pain or to have the painful area wrapped in cloths or a bandage. When someone lifts a child who is in pain, the palms of the hands should be used rather than the fingertips (which can sometimes feel like a pinch).

When sick people and their families must seek help

· If the pain becomes unbearable or is associated with new symptoms such as a severe headache or weakness.

· If there is a sudden or recent occurrence of pain in the hands or feet. People need to be certain it is not due to another illness or medicines for other diseases (see Chapter Seven, section on tuberculosis).

· If there is a persistent headache lasting over two weeks, a severe headache which is getting rapidly worse and is not relieved by the usual ways of dealing with pain, a headache associated with vomiting or a headache that affects the sick person's ability to think or move.

Notes on pain
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Tiredness and weakness

Figure

Problems and possible causes

AIDS can often make a person feel very tired and weak, particularly in the later stages of the illness. This can have many causes and to some extent is unavoidable. It is important to advise people to do what they can to keep their strength up and not to take on activities that could be dangerous to them (like walking too far). A person's weakness and fatigue could be a result of some or all of the following:

· HIV infection or HIV-related illnesses (particularly respiratory illnesses)
· poor nutrition
· depression
· anaemia.

What to do at home

If no treatable infection or other problem is found, it is important for people to learn how to adjust to their limited ability. The following advice may help someone to do this:

· See what can and cannot be done unaided. It can help a family to know when and for what things someone needs assistance, and help them to understand that there are still some things the sick person can do in the home, while other tasks may have to be given to others.

· Rest should be taken as often as needed.

· Help should be asked for, and accepted, from others. People will usually appreciate being told how they can help rather than having to guess and feel uncertain.

· Ways should be found of making some activities easier - for example, sitting rather than standing to bathe or cook; using a bedpan or suitable container rather than going to the toilet or latrine; buying or making a walker, cane or wheelchair.

Figure

If someone cannot get out of bed at all they will clearly need help - see the section on skin problems in this chapter for information on the prevention of bed sores and skin problems due to prolonged inactivity. The person helping should be advised to:

· move the sick person's arms and legs gently, several times a day

· turn the person from one side onto their back, or to the other side, every few hours

· provide a bedpan or suitable container every few hours, or more often if needed, to allow the person to empty their bowels or bladder

· keep the sick person's skin clean and dry.

When someone is caring for a person with AIDS who is tired and weak they should:

· help with the person's daily needs, such as bathing, going to the toilet or latrine, getting in and out of bed, changing position in bed, eating and drinking

· keep the person involved, even if he or she is very weak, in the activities within the home.

If the sick person is weak but moving about, safety precautions can be very important. General safety precautions to be taken in the home are described in detail in the section on mental confusion later in this chapter and are summarized here as follows:

· Move loose or dangerous objects out of the way.
· Assist the person when walking or make a walking stick or cane for them.
· Try not to leave the person alone for long periods.

When sick people and their families must seek help

· If the sick person suddenly becomes very weak (for example, unable to walk), particularly if there are also other symptoms such as a high fever, headache or confusion.

Notes on tiredness and weakness
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Mental confusion and dementia

Problems and possible causes

Some degree of mental confusion (or dementia) is common among people with AIDS. These symptoms may be caused by infection of the brain with HIV. The mental changes resulting from this may be barely noticeable or they may become a serious disability.

People with AIDS may describe feeling "dulled" or "slow" in their thinking. However, it is usually the family who are the first to notice the changes.

These problems often start in a mild, barely noticeable way but may gradually worsen over time. It is not possible to predict whether the symptoms will become severe.

The mental changes may include difficulty in one or all of three areas:

· The ability to think clearly. This may be noticed as a problem in concentrating, and losing track of conversations or tasks.

· Behaviour. The person may become irritable, disinterested or unpredictable.

· Strength or coordination. The person may start dropping things more often, falling, or may develop slowness in movements, or shakiness.

HIV infection of the brain is the most common cause of mental confusion in people with AIDS. However, other possible causes include:

· the side-effects of many medicines

· infection with numerous other bacteria, viruses, and parasites

· severe depression.

What to do at home

Mental confusion can be a very upsetting and frightening problem for everyone involved. People with these problems may have moments when they realize that they are not able to think as clearly as before and will be aware of actions they have taken that were inappropriate. This is deeply distressing to them. Family members are also often very upset and not sure what to do. Support and guidance from pastors, counsellors and friends will be very important.

There is no specific treatment for these problems and people must learn to live with them and to make the sick person's environment as safe as possible. Mental confusion in the sick person, perhaps more than any other symptom, can make caregivers feel like giving up and cause them to feel overwhelmed by the demands of caring for someone they love.

A person who has a sudden change in thinking, behaviour or ability to move should seek help. Some of the sudden mental changes may be treatable and the person will recover. However, if such changes are allowed to continue, they may contribute to the rate of mental deterioration.

If it is determined that nothing further can be done, then the family will need to give whatever help they can. This will include protecting the sick person from harm.

Carers may need help to occasionally arrange time away from the home. Taking care of a sick family member for 24 hours a day, every day, is very difficult and people need their physical and emotional strength to deal with this.

To prevent accidents in the home, people should:

· pay attention to open fires or boiling water
· provide canes or walkers for people who are weak or off balance when walking
· remove loose and potentially dangerous objects, including rugs
· keep walkways clear
· avoid rearranging furniture
· store poisonous or toxic substances safely out of reach
· keep medicines out of reach and only give them according to the prescribed schedule
· install handrails or put a chair in showers or tubs
· store sharp objects like knives, scissors, razors and saws safely and out of reach
· try not to leave the sick person alone and unattended for long periods.

To help the functioning of the confused or demented person, people can:

· remind the person where he or she is and what time it is - use cues to help, for example:

- provide reminders of daily activities in a form the person understands
- provide familiar objects in easily visible places, such as pictures, clocks, calendars, etc.

· keep a calm, accepting and open manner when dealing with the person

· be aware of their actions and consciously slow down and relax

· speak slowly

· use a low-pitched tone of voice - this is reassuring

· ask questions that can be answered "yes" or "no"

· give simple short directions, or explanations to questions

· be concrete and specific

· give the person lots of time to respond to questions, directions or conversation

· try to interpret the feelings the person is trying to express rather than just the words

· talk about the distant past - the person's memory of events that happened long ago may be good and this will be pleasurable.

People should avoid:

· arguing, as it will not convince the person and may only upset him or her
· directly challenging the sick person's delusions or fantasies; it is better to cast doubt in a kindly way
· giving the person multiple tasks; instead give the person one thing at a time to do
· talking to the person as if he or she is a child
· giving choices, as this can be confusing.

To help a confused person who is upset or angry

Distraction is helpful; for example people can:

· change the subject
· provide music or switch on the radio
· give the person a manual task, e.g. folding clothes
· leave the room for a few minutes; the person may forget why he or she is angry
· remove the person from an upsetting situation.

The following may also help:

· maintaining a quiet environment
· setting limits
· saying "no" gently, but firmly
· not challenging or responding to the content of the angry words directed at the caregiver or others.

When sick people and their families must seek help

· If there is any sudden change in the person's ability to think or move, especially if this is associated with new fever, high fever, headache or difficulty in breathing.

· If other mental or character changes occur - such changes should be evaluated by a health care worker, who may be able to offer help or provide treatment for the underlying cause.

A confused and aggressive person can be very difficult to manage at home. There may come a time when the people around them cannot manage and they will need the help of a health care worker in placing the person elsewhere in order to protect the sick person or family members.

Notes on mental confusion and dementia
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Chapter Six: Conditions that need special attention in people with HIV infection

This chapter provides information on two conditions, tuberculosis and pregnancy, for which home care alone is not enough.

You should advise people with HIV infection, including those who have AIDS, that they should seek help from a health care worker if they think they also have tuberculosis, or if they are considering pregnancy or have already become pregnant.

Again the advice is presented in a way that is designed to help you to advise an adult with AIDS - or the family - using the same headings as in Chapter Five.

Tuberculosis

Problems and cause

Tuberculosis is a chronic (long-lasting), contagious disease that is caused by a bacterial infection. It can be cured with the correct treatment. It most often strikes young adults (15-35 years old), especially those who are weak, poorly nourished, or who live with someone who has the disease.

Tuberculosis usually affects the lungs and causes coughing and spitting. When it is severe people may cough up blood. Especially in children, young people and those with AIDS, tuberculosis can also affect the bones, brain, lymph nodes and other parts of the body. The symptoms of tuberculosis can appear in many different ways, as indicated below.

In many parts of the world, by the time they reach adulthood most people have been infected by the bacterium that causes tuberculosis (Mycobacterium tuberculosis). However, if they are healthy their body's defences - the immune system - will have prevented the bacteria from causing tuberculosis. In this case people are usually unaware that the tuberculosis bacteria are in their body, and they feel well.

The relationship between tuberculosis and HIV can be summarized in the following way:

A. If someone has HIV infection they are more likely to get tuberculosis.

The damage to the immune system caused by HIV means the immune defences are weakened and that they can no longer keep the tuberculosis bacteria from making a person ill. The tuberculosis bacteria, which have remained quiet in the body for years in some people, now cause the disease called tuberculosis.

B. If someone has HIV infection the symptoms of tuberculosis can be usual or unusual.

In communities where tuberculosis is very common, most people can readily recognize the disease. The most common symptoms include:

· chronic cough (lasting more than three weeks), which is often worse just after waking up, and may involve coughing up blood

· loss of weight and increasing weakness

· mild fever

· sweating at night

· pain in the upper back or chest

· loss of appetite.

If someone has AIDS, they may also develop less usual tuberculosis symptoms, such as fever without a cough. Tuberculosis can also infect the lymph nodes, especially in children - most often those in the area of the neck and shoulders. These infected nodes may become large lumps under the skin which open and drain pus, close for a time, and open and drain again.

C. Tuberculosis should be suspected if someone has AIDS and has respiratory or chest symptoms.

Figure

Because the possibility of having tuberculosis is so high if a person has AIDS, all people with AIDS and respiratory, chest or general symptoms which do not go away within three weeks should go to a health care worker to be tested for tuberculosis. This is particularly true if someone lives in an area where tuberculosis is common. As tuberculosis is treatable with medicines, is highly dangerous if not treated, and can be passed on to others, it is important for people to get a prompt diagnosis through a sputum examination and/or a chest x-ray.

D. HIV infection and AIDS should be considered in every person with tuberculosis.

Because tuberculosis and AIDS have been shown to accompany each other very often, in many areas of the world it is possible that if someone has tuberculosis they are also infected with HIV. People with tuberculosis should consider asking their health care worker to test them for HIV if this has not already been suggested.

What to do at home

Tuberculosis prevention

As a first step people should be advised to follow the principles for preventing tuberculosis which are presented in the following box.

Some Principles for Preventing Tuberculosis · Everyone - without exception - should seek early assessment and health care if coughing for three weeks or more. · Everyone - without exception - should cover their mouth when coughing. · Everyone - without exception - should avoid being in an unventilated space with a person who has been coughing for more than three weeks. · All homes, health facilities, workplaces and other places where people meet should be ventilated - make sure there is a way in and a way out for fresh air.

In addition, all newborn babies and young children should be immunized against tuberculosis with BCG vaccine. This may cause a spot or slight wound at the point of injection which will usually heal in some months without any treatment. The vaccine gives good protection against the serious childhood forms of the disease. However, if a child is ill at birth or has clinical symptoms of AIDS (see Chapter Three), they should not receive BCG vaccine.

Tuberculosis is contagious, particularly when there is prolonged contact with a person with the disease. Those people - and especially children - who live in the same house with someone who has tuberculosis run a risk of becoming infected. To prevent tuberculosis from spreading to others, the whole family should be asked if they have a cough and should have their sputum tested for tuberculosis at the health centre, if necessary.

Tuberculosis treatment

There are many effective treatments available to cure tuberculosis. Treatment always includes at least two different medicines. If only one is used, the tuberculosis bacteria may become resistant (insensitive) to it. Treatment stopped too early is dangerous to both the individual and the community because this, too, can lead to the development of tuberculosis bacteria that are resistant to drugs. Drug-resistant tuberculosis is much more difficult and expensive to cure. Therefore, it is vitally important to ensure that people take all the medicines they are given for the treatment of tuberculosis, and that they complete the full course. Such medicines, if taken properly, will prevent this infection from spreading among people who live together.

In some countries, treatment for tuberculosis is nearly always started in a clinic or hospital and few people are treated at home. This is because of the type of medicines used and because of the need to be absolutely certain that individuals take their medicines.

Before leaving the clinic or hospital, people should be instructed on how to take the medicines at home, and should be encouraged to ask for clear instructions. When a person returns home, they should have enough anti-tuberculosis medicines to last for about one month or at least until their next scheduled clinic appointment. After returning home from the clinic or hospital, people should be seen by a health care worker and be given a new supply of medicines every month.

It is very important that the medicines are taken regularly, exactly as prescribed. People taking anti-tuberculosis medication will begin to feel better but must still take their medication until the course is completed, otherwise symptoms will reappear and they will again become infectious to their family. Family members can help patients take their medication by reminding them. This is important to the whole family and not only to the patient with tuberculosis. It can take many months to cure tuberculosis completely. Nobody should ever stop taking their medicines, even if they feel better, unless instructed to do so by a health care worker, or unless the side-effects described below, such as reddening of the eyes, unusual itching or a widespread rash, appear.

The medicines given for the treatment of tuberculosis are very strong and may have severe side-effects. It is very important to know about these (see the section on medicines for tuberculosis in Chapter Seven for further details). If a person has any reactions to their medicines, such as reddening of the eyes, unusual itching or widespread rash, they should stop taking the medicines and return to the health care worker who prescribed them as soon as possible.

IMPORTANT Be sure that people with tuberculosis know: · which medicines they must take to cure tuberculosis · how to take the medicines · for how long they need to take them · what side-effects they should watch for · that prompt, complete treatment will cure tuberculosis · that prompt, complete treatment is the best way to prevent further spread

Anti-tuberculosis medicines are also expensive. Most governments have programmes that provide them free or at reduced cost. If people are having trouble with the cost you may be able to get help through the government or non-governmental assistance agencies.

If the main problems experienced are with breathing, people should avoid the things that can make their symptoms worse, for example, anxiety, strenuous activity, smoke, dust, aerosol sprays and smoking of any type. People should also avoid lying flat, and instead should sit up or lie with their head raised. See the section on "Coughing and difficulty in breathing" in Chapter Five for more specific information.

When sick people and their families must seek help

· If the sick person has AIDS and has a cough or other signs that suggest they might also have tuberculosis.

· If the sick person has a reaction to the anti-tuberculosis medicines, such as a reddening of the eyes, unusual itching or a widespread rash.

· If the white parts of the sick person's eyes become yellow.

Notes on tuberculosis

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Pregnancy and birth

For many women, the news that they have AIDS is directly related to their role as a mother. Most women who become infected with HIV and develop AIDS do so early in their lives, during or even before the time that they bear children. This means they must face difficult choices.

Many times it is during, or immediately following, a pregnancy that a woman discovers she is infected with HIV or has AIDS. Remember the story in Chapters Two and Three - it was after the illness of her second child that Yulia first became aware that she and Mukasa might be infected with HIV. This is especially distressing news because pregnancy for a woman with HIV or AIDS brings with it the risk of having an infected child and possibly of a worsening of her own illness. These painful facts are even worse in places where the status of women is influenced by their ability to bear children and where it may be socially unacceptable or very difficult to take the necessary steps to avoid pregnancy - abstain from sexual intercourse or contraception - or to consider terminating a pregnancy.

Though there are many aspects of HIV transmission during pregnancy that doctors and scientists do not yet understand, some information is available that can help women to decide whether or not to start a pregnancy, or to prepare women for the possible consequences of pregnancy.

If a woman is infected with HIV and becomes pregnant, her risk of having an HIV-infected child is approximately one in three. Some children who become infected are infected in the womb, some during delivery, and some through breast-feeding.

If a woman has AIDS, she is in addition more likely to have a "complicated" pregnancy, with problems during the pregnancy itself, during delivery of the baby, or after the birth. Such problems may include:

· miscarriage - loss of the baby during pregnancy

· fevers and infections

· premature labour - delivery occurring earlier than it should, often causing the death of the baby

· a smaller baby - the weight at birth of even a full-term baby can be much lower than normal; babies with a low birth weight are more likely to have subsequent problems

· infections after birth - these are much more common in women with AIDS and can be life-threatening; women who are HIV-positive might have unexpected severe infections after delivery (puerperal sepsis) which do not respond to the usual treatments with antibiotics.

What to do at home

Antenatal care

All pregnant women should receive antenatal care during pregnancy. This is even more important if they have AIDS. Women should be advised to follow the routine recommendations for all pregnant women - these are:

· The mother should eat for herself and for her growing child. She should eat from the three main groups of foods described in the section on "Nutrition problems" in Chapter Five.

· Good hygiene should be practised including the general practices discussed in the section on "Avoiding other infections" in Chapter Three.

· No medicines should be taken except those prescribed by a health care worker (women should always tell their health care worker that they are pregnant if they see them for another reason). Some medicines can be harmful to both the mother and her developing baby so it is best not to take any risks.

· Pregnant women should continue to be active but should not overexert themselves.

· Pregnant women should ensure that they are properly immunized against tetanus, to protect both themselves and the baby. Depending on previous immunizations against tetanus, a woman may need to be immunized more than once during pregnancy.

Before delivery

You may recommend that the mother plan to deliver in a health centre or hospital. If this is not possible, then people, with the help of a health care worker, should prepare for delivery in the home so that it poses the least risk to the mother, to the baby, and to those who help with the delivery.

Advise people to prepare beforehand the things which they will need for a safe delivery. These are:

· several large pieces of cloth for wiping and wrapping the baby (about 1 metre by 1.5 metres each)

· two clean ties or thick threads for tying the umbilical cord

· one clean new razor blade for cutting the cord

· one container of antiseptic solution such as iodine solution or gentian violet

· cotton wool or clean cloths for applying antiseptic solution to the cord stump

· gloves or plastic bags for the delivery assistant and for handling the afterbirth

· one container of clean (boiled and cooled) water for cleaning the mother, the baby and the assistant's hands and arms

· soap

· pads for the vaginal area for the mother to catch drainage following the birth - these can be made from pieces of old but clean cotton cloth

· warm clean clothing for the baby following birth

· clean clothing for the mother to change into after the delivery.

Make sure that anyone who is helping in a delivery knows that they must cover any open wounds on their skin.

After delivery or miscarriage good hygiene should be carefully followed, especially in the genital area. Washing with soap and water should be done twice dally.

Breast-feeding

Breast milk has many benefits. It contains substances which protect the infant against infections. It is the best possible food for infants. In addition, breast-feeding helps postpone further pregnancies. Also, since breast milk is clean, the infant is not at the same risk of getting infections and diarrhoea as with breast-milk substitutes. Unfortunately, it is true that HIV can be transmitted during breast-feeding.

With the help of a health care worker, women will have to weigh up the possible risks of breast-feeding their child, taking into account such things as:

· whether they have AIDS

· whether many of the children in their area are sick, or die from infections unrelated to AIDS, or from poor nutrition

· whether an alternative to breast milk is available to them which is clean, nutritious and affordable throughout the time it will be required.

The risk of transmission of HIV by breast-feeding may be low compared to some of the other risks to which a baby is exposed if it is not bread-fed. Thus it is recommended that, if a woman lives in a place where many children die at a young age from infectious diseases (like respiratory infections or diarrhoea), she should breast-feed her infant, even if she is infected with HIV or has AIDS.

However, if a clean, safe, affordable and nutritious substitute for breast milk is readily available and will be readily available for the entire period it will be required, then women should be encouraged to discuss this with a health care worker before making their choice. If they decide to feed their baby using breast-milk substitutes (infant formulas) rather than breast milk, they must use clean water (boiled, then cooled), and clean equipment (teats and bottles). Also, they must be sure that when they prepare the breast-milk substitute they do so in the right concentration. They must follow the directions and must not mix the formula with more water than is recommended in an effort to save money. This can lead to malnutrition in their child. If all the things mentioned here cannot be done all of the time, then women should breast-feed their child.

A woman, usually with her partner, might wish to seek counselling for the following reasons:

· to decide whether to become pregnant or not
· to discuss methods of contraception and other forms of fertility regulation
· to manage a pregnancy
· to plan for an infant.

In addition, as with all women, she should seek antenatal care regularly throughout the pregnancy.

When women and their families must seek help

During pregnancy, a woman should be advised to seek help immediately if she:

· begins to pass blood
· has fevers
· experiences a sharp pain in her abdomen.

After delivery or miscarriage help should be sought if the woman:

· develops a fever
· has bad-smelling vaginal discharge
· has vaginal discharge with fresh blood.

Notes on pregnancy
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Chapter Seven: General guide on the use of medicines

People seeking a cure for AIDS may spend a lot of money on medicines from shops, health care workers and traditional healers. Unfortunately much of this money is wasted because such medicines are not effective, may cause other problems, and use up money that would be much better spent on food, clothing, or other essential items for all the family.

This chapter provides the information you need in order to teach people how to use medicines safely and effectively. It also provides a brief description of the medicines commonly used to treat symptoms that occur in people with AIDS.

Please note that not all the medicines listed in this guide are needed in a medicine kit or in the home. Because different medicines are available in different countries, information has sometimes been given number of medicines that do the same job, It is wise to: Keep and use only a small number of medicines (It is best to use familiar medicines that you understand well.)

Teaching notes on the use of medicines

It is essential that anyone taking medicines (whether prescribed or bought from a shop) follows the instructions for their safe and effective use. Medicines not taken according to instructions can be useless or even harmful, causing further illness. It can be very confusing for a person and their family when they are provided with several different medicines, all with different instructions. You must make sure that your patients and their families know how to take the medicines you recommend.

There is some danger in the use of any medicine.

Whenever you recommend a medicine, it is a good idea to give the patient and the family written instructions. This can be useful to anyone involved with the care of a sick person. Someone can always be found to read it. You should explain the instructions and ask the patient or members of the family to repeat them to you. Make sure they understand. Below is an example of a written schedule.

To help remind people who cannot read when to take their medicine, you can give them a note like this:

Figure

In the blanks below the pictures, draw the amount of medicine they should take and explain carefully what it means.

Here are three examples:

(a) This means one tablet four times a day: one at sunrise, one at noon, one at sunset, and one in the middle of the night.

Figure

Written medicine schedule
Name of medicine	Purpose	Description	When to give	Comments
Aspirin or paracetamol	for fever, headaches, pain	white tablet	take 1 or 2 at least every 8 hours	take with meals or food
Calamine lotion	for itching and irritated skin	tan liquid	apply to skin as necessary	do not take by mouth

(b) This means half a tablet three times a day.

Figure

(c) This means two teaspoonfuls twice a day.

Figure

How to use medicines

People may have been advised to take medicines by a health care worker or may have decided to buy their own medicines without such advice. In either case, people must know how to use medicines correctly to get the most benefit from them and to avoid any harmful effects.

How can people learn about medicines?

You, the health care worker, should give people the information they need to know. The people who sell medicines may also be helpful but remember, their primary goal is to make money through selling. Instructions about taking any medicine and the name of the medicine should be written on the container it is sold in.

For any medicine a person has been given, they should know and understand the answers to the following questions:

· Why has it been prescribed?
· How will it help them?
· How should it be taken?
· For how long should it be taken?
· What side-effects, if any, should they watch for?

The ability to use medicines correctly is very important for health and safety. All labels should be checked by the person before they leave the health centre or shop. If the label says:

· Keep cool - the medicine should be kept out of sunlight and out of damp places.
· Shake - the medicine should be shaken for a full minute before measuring out each dose.

How should medicines be taken?

It is important to take medicines as near as possible to the time recommended. Some medicines should be taken only once a day, but others must be taken more often. If the person does not have a clock, it does not matter. If the directions say "1 tablet every 8 hours", they should take three a day: one in the morning, one in the afternoon, and one at night. If they say "1 tablet every 6 hours", they should take four a day: one in the morning, one at midday, one in the afternoon, and one at night. Before they leave the health centre or the shop with the medicine they must be sure they understand how often to take it. If the directions say:

· On an empty stomach - the medicine should be taken at least one hour after a meal, or 30 minutes before a meal.

· With meals - this can also mean with snacks. People should make sure that they have eaten something before taking the medicine.

If vomiting occurs immediately after taking a medicine, the dose should be taken again. But if the vomiting occurs 20 or more minutes after taking the medicine, the dose should not be repeated.

Advice for people who are giving medicines to children

· Liquid medicines can be squirted slowly into the side of the child's mouth with a dropper or syringe, or poured from a spoon.

· Always praise a child after he or she has taken medicine.

· If the medicine tastes bad, tell the child so in advance.

· If a pill cannot be swallowed, crush it and mix it with the smallest amount possible of something the child likes to eat. However, do not "hide" medicine in food or the child may begin to refuse food.

· If the child vomits immediately after taking a medicine, give the dose again. But if vomiting occurs 20 or more minutes after taking the medicine, do not repeat the dose.

Medicines to be used with caution in people with AIDS

There are certain medicines that can have more side-effects, or can cause more problems, in people with AIDS. People should be aware of which these are so that they can watch for any reactions they might have to them. They include medicines commonly given to treat infections, and medicines that are used only rarely:

· the anti-tuberculosis medicine, thiacetazone, often called "thiazina"
· sulfonamides
· steroids.

Steroids (such as cortisone and hydrocortisone) deserve special mention. These medicines suppress the immune system and so they are particularly dangerous for people with AIDS because their immune system is already weakened by the disease. Steroids worsen the problems that come with AIDS by reducing even further the body's ability to fight off common infections. People with AIDS should only take steroids after very serious consideration by a medical doctor. They should only take them as part of the treatment for another problem.

Which medicines should people use?

The next section describes the medicines that might be used at home for treating the symptoms that can develop in people with AIDS. They are grouped here according to the symptoms they are used to treat. For example, medicines used to treat pain are listed under the heading, "Medicines for pain". The symptoms themselves and how they can be treated at home are described in Chapters Five and Six.

Medicines commonly used to treat symptoms in people with AIDS

Medicines in this section are listed under each heading according to their generic names (scientific names) rather than their brand names (the names given by the manufacturers). Medicines are described under the following symptoms:

· Medicines for infections:

- antibiotics

· Medicines for fever:

- aspirin
- paracetamol

· Medicines for diarrhoea:

Acute

- oral rehydration salts
- antibiotics

Persistent

- adsorbents
- antimotility medicines

· Medicines for skin problems:

General

- calamine lotion

Bacterial infections

- gentian violet
- potassium permanganate
- hydrogen peroxide

Yeast infections (oral and vaginal)

- gentian violet
- ketoconazole
- nystatin
- clotrimazole
- potassium permanganate

· Medicines for nutrition problems:

- vitamin and mineral supplements

· Medicines for nausea and vomiting:

- anti-emetics

· Medicines for pain:

- aspirin
- paracetamol
- narcotic painkillers

· Medicines for tuberculosis:

- streptomycin
- isoniazid
- ethambutol
- thiacetazone
- rifampicin
- pyrazinamide

Medicines for infections

Antibiotics - a general guide

Almost every person with AIDS will be given an antibiotic at some point during his or her illness to fight an infection.

When used correctly antibiotics are extremely useful and important medicines. They fight certain infections and diseases caused by bacteria. Well-known antibiotics are penicillin, tetracycline, cotrimoxazole and chloramphenicol. The sulfonamides have a similar effect and are also considered here. It should be noted that medicines containing sulfonamides can cause severe allergic reactions in people with AIDS, such as unusual itching or widespread rashes.

Different antibiotics work in different ways against specific infections. All antibiotics have dangers in their use, but some are far more dangerous than others. Great care must be taken in the choice and use of antibiotics:

· People should never take an antibiotic unless it has been prescribed by a health care worker for a specific reason. Left-over antibiotics should not be used to treat a new infection.

· People must continue to use the antibiotics they have been prescribed for the full length of time they are told. Some illnesses, like tuberculosis, need to be treated for many months or years after the person feels better.

· If the antibiotic causes a skin rash, itching, difficulty in breathing, or any other reaction, people should stop using it and immediately contact a health care worker. If these reactions do occur people should always mention this to the health care worker who prescribes medicine for them. People should be encouraged to remember the name of any medicine they have a bad reaction to so that they can tell a health care worker in the future.

· The antibiotic should only be used at the recommended dose - no more, no less. You should explain to people that the dose depends on the illness and on their age or weight, and that increasing or decreasing the dose can be harmful, or can make the medicine useless.

· Antibiotics can kill bacteria. However, not all bacteria are harmful and antibiotics often kill good bacteria along with the harmful ones. For example, people with AIDS given antibiotics often develop fungal infections of the mouth (thrush - see the section on "Mouth and throat problems" in Chapter Five), skin or vagina (see the section on "Genital problems" in Chapter Five). This is because the antibiotics kill the bacteria that help keep the fungus under control in the body. Similarly, certain antibiotics may lead to diarrhoea - the antibiotics kill some of the bacteria necessary for digestion, upsetting the natural balance of bacteria in the intestines.

· When antibiotics are used incorrectly, they become less effective. When attacked many times by the same antibiotic, bacteria become stronger and are no longer killed by it. They become resistant to the antibiotic. For this reason, certain diseases like tuberculosis can become more difficult to treat over time if the antibiotics for them are not used in the right way.

Medicines for fever

These include aspirin and paracetamol. The recommended doses for these medicines are given in the section on medicines for pain in this chapter.

Medicines for diarrhoea

Treatment of acute diarrhoea

Oral rehydration salts (ORS). For diarrhoea with no blood in the stools, no specific medicines are needed. An oral rehydration solution made with ORS is the best means of preventing dehydration resulting from diarrhoea. See the section on "Diarrhoea" in Chapter Five for instructions on how to prepare ORS solution.

Antibiotics are effective against only some of the diarrhoea-causing organisms. When they are effective their benefit should be seen after 2 days and the medicine should be continued as prescribed. If not effective, the person should be advised to seek additional care. Prolonged or frequent use of antibiotics may increase the resistance of some disease-causing organisms to antibiotics. Also, antibiotics are costly, and should only be used when most effective. Therefore, antibiotics should not be used routinely. They may be appropriate for the treatment of dysentery, cholera, and some infections common in people with AIDS, but this should be determined by a health care worker.

Treatment of persistent diarrhoea

Relieving the symptoms of persistent diarrhoea, especially in people with AIDS, can be a difficult task. The diarrhoea does not usually have a known cause and when it begins to interfere with normal activity, eating, or is very emotionally burdensome, a health care worker may prescribe specific medicines. In addition to ORS, the medicines most commonly used are:

· Adsorbents, such as kaolin, pectin and activated charcoal.

· Antimotility medicines, such as tincture of opium, loperamide and diphenoxylate.

These can be dangerous when used in children less than 5 years of age, and should not be used in this age group. In adults these medicines may temporarily reduce cramps and pain, but may also delay elimination of the organisms causing the diarrhoea, and therefore prolong the illness. When used by adults, directions should be given carefully to avoid overdosage. Possible side-effects include:

- dryness of the mouth
- sleepiness
- loss of coordination
- blurred vision
- a gaseous distended abdomen.

Medicines for skin problems

General

Calamine lotion may be rubbed on the skin to soothe itching or irritation. It should never be taken by mouth.

Bacterial infections

Gentian violet comes as a ready-made solution or as dark blue crystals that should be mixed with clean water to make a solution. To use the crystals, people need to dissolve one teaspoonful in half a litre of water. This medicine helps fight certain skin infections, and has many uses.

Potassium permanganate comes as dark red crystals. It makes a good antiseptic (bacteria-killing) solution for soaking infected sores. A pinch of the crystals should be added to one litre of clean water or one teaspoonful in a four to five litre bucket of water for soaking infected sores.

Hydrogen peroxide comes as a liquid. It should be kept in a dark bottle, as the light destroys its effect. This medicine helps to clean deeply infected wounds on the skin.

Oral yeast infections (thrush)

Before using home remedies or medicines prescribed by a health care worker, a person should try cleaning the mouth with a soft toothbrush and then rinsing with salt water or lemon juice. Next, people can use gentian violet or potassium permanganate. See the section on "Mouth and throat problems" in Chapter Five.

The medicines most commonly prescribed by a health care worker for treatment of oral fungal infections are antifungal agents such as nystatin or clotrimazole. A solution or suspension should be held in the mouth for at least one minute and then swallowed. Lozenges should be sucked in the mouth until dissolved. It may be necessary to take these medicines three or four times a day.

In some people, the thrush involves not only the mouth but the entire esophagus, causing pain on swallowing and a burning sensation in the chest. Treatment for this can be provided by a health care worker and includes antifungal medicines such as ketoconazole which is taken by mouth every 12 hours for 14 days.

Vaginal yeast infections

Antifungal agents (creams or suppositories) may be prescribed to cure vaginal yeast infections. These should be used once or twice a day for 5-7 days. It may help to line underclothes with cotton cloth of some sort since the medicine will drain from the vagina.

Medicines for nutrition problems

Vitamin and mineral supplements come in many forms, but tablets are usually cheapest and work well. Injections of vitamins are rarely necessary, are a waste of money, cause unnecessary pain, and sometimes cause abscesses. Tonics and elixirs often do not contain the most important vitamins and are usually too expensive for the good they do. Nutritious food is the best source of vitamins and minerals. If additional vitamins and minerals are needed, tablets can be used but people should make sure the tablets contain the important vitamins and minerals they need.

With standard "multivitamin" tablets (tablets that contain several different vitamins), one tablet each day is usually enough. Vitamins should be taken with, or soon after, meals. In addition, pregnant women need extra amounts of iron and folic add.

Medicines for nausea and vomiting

Round-the-clock treatment with medicines for nausea and vomiting (anti-emetics) may become necessary if these symptoms become a big problem. They should only be taken on the advice of a health care worker. Some have serious side-effects, for example:

· nervous system effects with trembling or inability to control the movements of the neck or eyes

· fatigue, sleepiness and possibly depression; people taking anti-emetics should therefore not drive or operate machinery.

Medicines for pain

Aspirin can be useful to reduce pain, to lower fever, and to reduce inflammation. It may also help to calm a cough and reduce itching. Aspirin usually comes in tablets of 300-500 mg and should be given to adults at least every eight hours (or two to three times per day). For someone suffering from severe joint pains a higher dose may be recommended.

Aspirin should not be used by people who have indigestion or heartburn because it can make these problems much worse. In some people, aspirin causes stomach upsets. To avoid this, aspirin can be taken with milk, some bicarbonate of soda, a lot of water, or with meals. If ringing in the ears is experienced, this is a sign that the amount of aspirin which is being taking should be lowered. Aspirin must be kept out of reach of children as large amounts can poison them.

Paracetamol is used for many of the same problems as aspirin, such as pain and fever. However, it is safer for children and does not cause stomach problems, such as ulcers, so it can be used instead of aspirin if such problems are experienced. Paracetamol, rather than aspirin, should be given to children.

Paracetamol usually comes in tablets of 500 mg and should be given at least every eight hours (or two to three times per day) as follows:

· adults: 1 or 2 tablets (500-1000 mg)
· children 8-12 years: 1 tablet (500 mg)
· children 3-7 years: half a tablet (250 mg)
· children 6 months-2 years: quarter of a tablet (125 mg)
· babies under 6 months: one eighth of a tablet (62 mg).

Narcotic painkillers, such as codeine and morphine, may be prescribed by a health care worker and are used only for severe pain. These medicines are addictive, which means that if someone continues to take them they may need increasingly higher doses to get the same therapeutic effect, and may find that they crave for them at times when they are not having pain. Other side-effects that may be troublesome include nausea, drowsiness, constipation, depression, fatigue and itching. Make sure that people are advised to take extra fluids to prevent constipation if they are taking such medicines. If people are taking this type of medicine make sure they follow the directions carefully and do not drive or operate machinery.

Medicines for tuberculosis

Almost all countries in the world have guidelines or standard treatment protocols which they use in the treatment of tuberculosis, you should follow your country's standard treatments. This section describes the most common medicines used in the treatment of tuberculosis. At least two medicines to treat tuberculosis should always be given at the same time. This section is meant to supplement the information given in Chapter Six on tuberculosis and you should refer back to that section. The most important points about the treatment of tuberculosis are shown in the box below.

Streptomycin is given by injection. It is an important medicine for treating tuberculosis; however, it should always be used in combination with other medicines. In some places it is being used less often because there are other medicines that can be used in its place and because there is a risk of HIV and hepatitis transmission if the needles or syringes used to inject the medicine are not sterilized adequately.

The dose depends on age, weight and the severity of the tuberculosis. Treatment regimes can vary from country to country depending on the national policies adopted - for example, in some places one injection is given each day for two months, in others injections may be given two or three times a week for two months.

Great care must be taken not to give more than the correct dose. Too much streptomycin for too long may cause ringing in the ears or dizziness, particularly in people aged 50 years or more. If either of these symptoms occur, people should return immediately to the health care worker who prescribed the medicine.

Streptomycin is not suitable for use in pregnant women because it can cause hearing and kidney problems in the unborn baby. It is also unsuitable for children since they develop the side-effects more often and do not tolerate the painful injections well.

Isoniazid comes in tablet form and should be taken before the morning meal. Tablets should be stored out of direct sunlight.

Isoniazid occasionally causes liver problems. If this happens people will notice itching and the white part of their eyes turn yellow. They should return immediately to the health care worker who prescribed this medicine. In rare cases, the medicine causes anaemia, nerve pains in the hands and feet, muscle twitching or even fits. These side-effects can usually be prevented by taking a tablet of vitamin B6 (pyridoxine) every day.

Isoniazid is usually given for a long period of time, for example six months to one year, until the tuberculosis is considered completely cured.

This medicine is safe to use during pregnancy.

Ethambutol comes in tablet form.

It may cause eye problems if taken in large doses for a long time. If people notice that their eyesight seems worse, with blurring of vision or colour blindness, they should return to the health care worker who prescribed this medicine.

It is usually given once a day for two to twelve months.

Ethambutol is not advised for use in children less than six years old.

Thiacetazone often comes in tablet form and is always given in a combined form, usually mixed with isoniazid in a tablet called "thiazina".

Side-effects occur fairly frequently and include reddening of the eyes, unusual itching, widespread rashes, vomiting, dizziness and loss of appetite. In people with AIDS these reactions can be very severe. If people who are taking this medicine begin to have these types of problems they should stop taking the medicine and return immediately to the health care worker who prescribed it. In many countries this medicine is no longer used for people with AIDS because the side-effects occur so frequently in such people.

Thiacetazone is usually given once a day, for between 6 months and one year.

Rifampicin comes as single tablets of 150-300 mg or in a combined form, mixed with isoniazid, as tablets that contain 150-300 mg of rifampicin and 100-150 mg of isoniazid.

Rifampicin should be taken on an empty stomach, at least 30 minutes before the morning meal, since food interferes with the absorption of the medicine. It should be stored out of direct sunlight and in a dry place.

Rifampicin can be used in pregnancy.

Side-effects are not very common. This medicine may cause liver problems which can cause the white part of the eye to turn yellow. If this happens the person should return immediately to the health care worker who prescribed the medicine.

Rifampicin is likely to stain urine, tears, saliva, faeces and other body fluids an orange colour. If people notice this discoloration, they should not stop taking the medicine, as it is a normal reaction and is completely harmless.

Occasionally the medicine may cause flushing, itching, rash, fever or flu-like symptoms. If people experience any of these problems, they should discuss them with their health care worker.

Pyrazinamide comes in tablet form and should be taken in the morning with or without food.

Pyrazinamide is safe to take during pregnancy.

The most common side-effect of this medicine is joint pains. These pains tend to occur in the shoulders and are relieved by mild pain medicines. The pain usually goes away within a short period of time. This medicine may also cause liver problems which makes the white part of the eye turn yellow. If this happens the patient should return to the health centre or hospital immediately.

· Tuberculosis is curable if medicines are taken as prescribed. · If medicines are stopped early, individuals get sick again and become Infectious to others. · If medicines are taken as prescribed, individuals become completely non-infectious to others.

Notes on the use of medicines
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