How to deliver care for people with HIV and AIDS and their families

What is in this guide?

Millions of people are already HIV positive and many of them have developed full-blown AIDS. In this guide, we look at support, treatment and care for people who are HIV positive and for their families. This guide contains the following sections:

1. Overall approach
2. Support Groups
3. Staying healthy – wellness programmes
4. Poverty alleviation and food programmes
5. Government grants
6. Treatment, clinics and hospitals
7. Home-based care
8. Dealing with death

1. Overall approach

People with HIV and AIDS can live healthy lives for longer if proper care and support is provided. Your immune system can be strengthened by medical treatment, food, rest and exercise. You can cope much better if you are happy and feel productive. Emotional support and a positive attitude will help you to avoid depression. A lot can also be done to avoid the devastating effects that illness and death have on families and children.

At the moment families and sometimes just individuals, cope with HIV and AIDS without much community support. In most cases, very few people know that someone is HIV positive and when they become ill, their families and children bear the burden alone. Children and partners also have to deal with the grief of watching a loved one suffer and die. Research has found that most families who lost someone, spent about one year nursing the person once they became seriously ill.

In South Africa almost half of all families live in poverty. Illness and death of a breadwinner usually increases poverty. Poor people do not have the resources to provide proper care for someone with HIV and AIDS.

Many countries in Africa and South America have developed community-based programs to deliver better care and support for people with HIV and AIDS. There are a number of key things that can be done:

• Organise counselling and emotional support for people with HIV and AIDS and their families.
• Set up organisations that bring together people living with HIV and AIDS to fight for change.
• Set up wellness programmes and medical treatment to help people keep their immune systems strong and fight opportunistic infections.
• Get all who people who need it onto antiretroviral treatment
• Organise grants, food parcels and poverty alleviation projects to help families survive.
• Provide home-based care and medical treatment for people who are ill.

It is very important to deal with all the things listed above. Counselling without treatment and nutrition will not keep someone alive. Clinic treatment without home-based care will not provide for people once they are bed-ridden.

It is important to target people living with HIV and AIDS and their families for support. The families have to look after and support the person with HIV and AIDS – they themselves need emotional support. They also have to deal with prejudice from the community and need information and training so that they can protect themselves and provide better care.

Many of the things that should be done can also support people with illnesses other than HIV and AIDS. For example, home-based care should target all people who are bedridden. Programmes to support orphans should target all children in need. Poverty alleviation and state grants should target all who need it.

In September 2002, the Department of Health launched a new campaign to build a more caring and supportive society for people affected by HIV and AIDS. It is called Khomanani – a Tshonga word that means “caring for each other”. See the Khomanani website at: www.Aidsinfo.co.za

There are many examples of well-integrated projects from all over the world:

• In Sao Paolo in Brazil, Catholic nuns started Project Hope to provide support and care for families affected by AIDS. They have more than 100 volunteers who each give a few hours of their time per week. The volunteers each visit a few families where parents are ill. They provide basic care, counselling and help care for children. The project also looks after children once their parents have died.
• In many parts of Africa, health services work closely with community and church volunteers to care for people who are ill - especially in rural areas that are far from other services. Chirumhanza (Zimbabwe), Kitui (Kenya) and Kikovo (Uganda) are good examples of places where health services extend the care and support they can give by using home-based care.
• In South Africa there are also many projects that do very good work. Most of them work with a local hospital or clinic. Affected families are offered support and trained volunteers visit them at home. When people need medicines, grants and other support, the volunteers help them to get access to those things. The Tateni Home Care Services in Mamelodi and the Hospice project in Port Shepstone are two of the oldest home-care projects.
• In Thailand, the Sanpatong Family Care Project does home-based care and helps to set up support groups for people living with HIV and AIDS and their families.

2. Support Groups

“I wanted to see other people with HIV.
We gained strength just from knowing each other”
HIV support group participant, South Africa

Background

The stigma surrounding HIV and AIDS makes life more difficult for people living with HIV and AIDS and their families. Loneliness, anxiety, stress, confusion, bitterness and depression can make people more vulnerable to illness if they do not get any kind of support. People living with HIV and AIDS need a lot of emotional, spiritual, psychological, social, physical and clinical support.

Different people and different institutions can provide some support, but it is important for people living with HIV and AIDS to come together and support one another. People living with HIV and AIDS would know better what their hopes, joys, anxieties, fears and needs are and they are the ones who should define how best they want to be understood and treated.

Some of the common needs of people living with HIV and AIDS are:

• Health and medical supplies and skilled medical services.
• Counselling to reduce isolation and promote acceptance.
• Community support groups to provide a safe place where feelings and advice can be shared.
• Spiritual support such as prayer groups and home visits by religious leaders.
• Social acceptance to help people living with HIV and AIDS by visiting them and treating them like friends.
• Physical care such as bathing, cleaning their homes when they are sick, and any other thing they are not able to do on their own.
• Nutritional help so that families improve their diets using cheap and available foods.
• Safe clean water that has been boiled or treated with chlorine.
• Accurate information about HIV and AIDS.

Aims of support groups

Support groups can be set up for many different reasons. Here are a few:

• To provide emotional support and coping mechanisms to those people who are undergoing a difficult time in their lives, and are willing to be part of a support group.
• To provide information for its members so that they can understand the disease and be able to educate their family members, friends, colleagues, neighbours about the disease.
• To draw strength from other members experiences.
• To share information around treatment, care and healing.
• To educate people about antiretroviral medication and to encourage people to keep taking their medication.
• To build a social network of people with similar problems.
• To improve the quality of life of people living with HIV and AIDS and their families.
• To ensure that a person living with HIV and AIDS can live a positive and productive life.
• To empower members with knowledge about HIV and AIDS and help them develop skills.
• To create networking opportunities for those involved in the support group.
• To reduce isolation and discrimination while encouraging acceptance around HIV and AIDS.
• To demystify the disease and promote de-stigmatisation and community acceptance of people living with HIV and AIDS and their families.
• To strengthen HIV prevention messages by encouraging the community to have contact with people living with HIV and AIDS.

Setting- up support groups (summary)

Support groups can only recruit people who agree to be members. When you set up a support group you are starting a new organisation from scratch. Here are some of the things you should try to do:

• Develop a clear and shared purpose among the group members.
• Nominate people to coordinate activities of the group.
• Develop a realistic programme of action for the group.
• Evaluate the program regularly to make sure you are still on the right track.
• Have between three and twenty members.
• Hold meetings at accessible and user-friendly venues.
• Keep an up-to-date database of membership.

Different types of support groups

There are many types of support groups, some are public and others are secret. It is important for members to decide early on if the support group is going to be public or secret. Many people may be keeping their status secret and may not want to be associated with an HIV and AIDS support group. Here are some of the different types of support groups that have been set up:

Support groups that meet in a clinic

A doctor, a nurse or a social worker usually runs these support groups. They have a set timetable when they will see clients, a folder with client’s history, a set programme, and a specific purpose. Members are usually people who have been diagnosed in the clinic, but individuals may decide to come on their own, as they believe that there is some kind of confidentiality in the clinic.

Support groups that meets at church premises

These support groups are not different from the others as they have a similar purpose and a set programme. Religious ministers, a clinical psychologist or a social worker runs these support groups. Members are people who will have had counselling sessions with the minister or have been referred by a clinic or a friend.

Students who set up a support group at campus

Trained students or a resident clinical psychologist usually run these support groups. Students are referred to the support group from health or counselling services, or join because they hear about it.

House gatherings

Some people living with HIV and AIDS want to come together in a house because of the privacy. They feel comfortable with this arrangement. Most people who want to meet in a house would be people who want to keep their status a secret. Trained people living with HIV and AIDS, clinical psychologists, social workers, nurses or doctors mostly run these support groups.

Informal support group

Some support groups operate on an informal basis. Members come together, share their problems, and discuss ways of helping themselves and each other. They do not get professionals or trained volunteers to run the groups, but work out their own programme and way of doing things.

Letter writing

Some people with HIV and AIDS maintain support through letter writing or through telephone networks. For people who are isolated and not close to any support groups, this may be a good option.

Buddy system

Some people living with HIV and AIDS would prefer to be in a group with people that they have developed rapport with. They would start a support group which is defined by what they think is best for them. They will have a set programme or informal arrangement depending on what is best for the group.

Support Groups That Work

It is important that a support group meets the emotional, mental, spiritual, clinical, psychological and socio economic needs of the group. Individual attention for members is important as members are different and will have different needs from time to time.

Support groups are more successful when they achieve the goals they are set up to achieve. Here are some things to keep in mind to help make the group a success:

• Make sure the members themselves decide the aims and activities of the group.
• Encourage group members to attend activities or meetings on a regular basis.
• Promote a high level of trust in the group – talk about what trust means
• Ensure there is a variety of different activities.
• Encourage open communication and discussion within the group. Make it as safe and comfortable as possible for people to speak about difficult issues.
• All members have equal status within the group. It is important to make sure that no one dominates the group and that no one is left out.
• Group members should feel that they are learning new things.

Before you set the group up

Based on the need you have identified, think about exactly who you would like to participate in the support group. It may be easier to start off with a group of people that have something in common. For example, people of a similar age, or gender. When people have gained confidence in these groups it can be easier to develop more mixed groups.

These are some examples of possible types of groups:

• All members are HIV-positive
• Men only or women only who are HIV-positive
• Teenagers who are HIV-positive
• People who are HIV-Positive and their partners or family members
• Single mothers with children who are HIV-positive
• Teenagers or children orphaned by AIDS
• People who have lost a spouse or life partner to AIDS
• People who are caring for people living with AIDS.

Some groups make it clear to members that they are not going to be asked to disclose their HIV status. Groups such as this never assume that members are HIV-positive or negative until a member discloses that information him or herself.

Find out if there are any other HIV-support groups in your area. If so, speak to them about what you are planning to do and find out what they are planning to do. You can then refer people to each other’s groups.

Ask yourself whose support you need to make the support group a success. A community leader? The administrator of the local clinic? The senior social worker at the local hospital? Your local church leaders? When you think it might be helpful, try and involve them in the process of setting the group up.

Consider whether your group needs to be open or secretive. Some members may be in danger of rejection or violence in their families or communities if their HIV-status is found out. If you decide that the need is for a secretive group you must take every precaution to protect the identity of the group members. For example, make sure that anyone referring members to the group (nursing sister, volunteers, etc.) know that they must not tell anyone else about the referral.

Finding Group Members

Some support groups operate in a clinic and referrals come through clinic staff. In this case you may have a ready source of potential members. In other cases you may need to do some ground work to find group members. Here are some guidelines to consider:

• Talk to doctors, nursing sisters, social workers and other staff members in clinics and hospitals. Give them your contact details to pass on to people they think could benefit from the group.
• Prepare pamphlets or posters advertising the group. If the group is secretive ONLY include contact information. Distribute these to hospital and clinic waiting rooms and other areas you think are appropriate.
• Speak to people in the community whom you think will be concerned about people with HIV and AIDS such as religious leaders or school teachers.
• Contact any AIDS service organizations or NGOs concerned with health in the area.
• Speak to potential members one-to-one. If appropriate, visit them in their homes.

However you publicise the group always make sure the following information is clear:

• Who the meeting is for (e.g. only HIV-positive people? Their partners? Care givers?).
• Contact details including name and phone number.
• Whether the group is open or secretive.

Meetings

Meetings should always have an agenda and be well structured. They should not take longer than 2 hours at the most. Members should be informed about what is going to be discussed before the meeting.

There should be a person who will take minutes every time there is a meeting

Minutes of the previous meeting should always be available and be read. (The minute taker should take care to protect confidentiality. People should only have their names recorded if they wish to. Some members might wish give a made up or “nick name” for this purpose).

Always have a short social time after the meeting so that people can get to know each other – serve some tea if you can.

Make sure that any materials you may need such as paper, pens or markers are available. Arrange the room so everyone feels an equal part of the group can see each other and be easily heard. Sitting in a circle usually works well.

Decide on how big the group should initially be. Smaller groups of about six to eight are best to start out with as they are easier to manage.

Tips for running meetings

• While is not essential to have a group leader the members may find this helpful. The group leader acts as chairperson of the meeting and makes sure the group keeps to the agenda.
• Confidentiality is important even in an open group but absolutely essential in a secretive group. You must emphasise the importance to group members of never sharing the identity of anyone in the group without that person’s permission. To betray this trust may expose the group member to discrimination or even violence. Repeat the need for confidentiality when any new member joins the group.
• When the group decides on an action that requires follow-up, a group member (or members) should be designated to do this. That person/ people should then report to the next meeting. Make sure the members given this responsibility fully understand what they need to do. Make sure they have any support needed to complete the follow-up task.
• No one has to talk but everyone is given a chance to speak at each meeting. The leader should encourage participants to speak but no one is forced to. Give your full attention to the person speaking and prevent others from interrupting the person speaking.
• Differing opinions are welcome; personal attacks are not. Group members benefit from being able to freely express their opinions and respect the opinions of other members in a safe atmosphere.
• Be aware of the agenda and keep the discussion on-track. While you should always encourage people to express their thoughts and feelings, you should not let them stray off the agenda.
• Ask people open-ended questions rather than questions with a “yes” or “no” answer. For example “how did you deal with the news of your diagnosis?” This helps to encourage discussion.
• Don’t allow anyone to dominate the meeting. If one or two people seem to be doing all the talking, the leader should say something like “let’s hear from someone else now.”
• The group has the right to ask a participant to leave. If a participant’s behaviour is disruptive to the group, the leader should be empowered to tell the participant to leave.

Remember that you don’t have to have all the answers or be an “expert”. It is perfectly acceptable to say that you don’t know the answer to a question. (This can actually help stimulate discussion on how the group can find the information).

At your first meeting:

Be very welcoming as people arrive. Start the meeting by making introductions and letting the group members get to know each other.

To make introductions easier use this exercise. Group members meet in pairs for a few minutes to learn a little bit about each other. The group then meets as a whole and each member introduces the person they have just met.

If the support group is part of a broader program be very clear about this. If the support group has a particular focus, such as a religious focus, you must also clearly explain this.

Establish how often the group will meet and at what time.

Lay down some basic ground rules. These should include:

• Confidentiality: (see Tips above). Some groups use the motto: “What you see in our group, what you hear in our group, please let it stay in our group”
• Respect: Group members must listen to each other without interrupting and should only speak one at a time
• Language: Group members should agree to use a language understood by all and not to use language that might offend.
• Non-judgemental attitudes: Group members should avoid being judgemental of other people’s feelings, behaviours and views. (This does not mean that they cannot express disagreement with those views).

Have all members say a few words about their expectations of the support group. What do they hope to gain from participating in the group? Groups sometimes fail because members have different needs and expectations. Record this information and use it when developing the group vision (see below).

At your second or third meeting

The group should begin to develop its own ground rules. For example, the group should decide whether to exclude anyone who is drunk or has been taking drugs. Some groups disallow anyone under the influence. Others allow the person in but ask him or her not to speak.

Decide on a name for the group that protects confidentiality. Many groups decide on a name that does not mention HIV or even suggest that it is a support group.

Support groups tend to grow. It can difficult for a group to operate effectively with more than twenty or so members. The group should decide how big the group should be before either limiting more members or starting another group.

Developing a shared vision

Early in the life of the group the members should develop a shared purpose statement, sometimes called a vision. Once the vision is clear it is easier to focus the group’s activities towards meeting that vision.

In group discussion, invite the members to think about what they would ideally like the group to achieve. On a board or newsprint write these ideas for everyone to see. See where there are some common threads to the ideas and incorporate those into a statement of purpose for the group. You may need to draft this several times before you hit on a version which has a consensus among the group members.

The leader should steer the discussion to make sure that the vision is realistic. The group probably can’t, for example, change the attitudes of rejecting family members but could offer constructive ways to cope with living with HIV and AIDS.

Put the vision statement up on the wall at all group meetings.

Developing a plan of action

Once everyone is clear on the purpose of the group, as expressed in the vision, the members can develop a plan of action. A plan of action should include specific things that the group wishes to achieve to help make the vision a reality.

They could include things like “ learning to stand up for our rights as patients” or “learning to eat the right things or “learning relaxation”.

Discuss exactly what you need to do to make the plan of action a success. Will you invite an expert to address the group? Do you need to get some materials such as tapes or CDs? Make sure someone is given the job to follow-up on each issue.

A plan of action should be realistic. The group should not try and do too much too soon.

Examples of what can be done in a support group:

Talks and presentations from experts

The group members should consider if they would like to invite experts to come and speak with the group from time to time. If so, they should decide on topics that will benefit the group.

There are all sorts of topics which may interest the group such as treatment options, nutrition, treating specific HIV-AIDS related illnesses, relaxation methods, anti-retrovirals and many others. The important thing, is that the group members themselves decide which topics are important for them. (Although the leader could certainly offer suggestions).

Make arrangements with an appropriate expert to come and make a presentation to the group. Explain to the expert before hand exactly what the group would like to know and tell him or her about the group and how it operates.

Ask the expert to keep the presentation to about 30 minutes. At the end of the presentation have the group members break into smaller “buzz groups” for about 10 or 15 minutes. In the buzz groups the members should discuss what they have heard and come up with some questions. Appoint a member of each buzz group to write down the questions and hand them to the leader. The leader could either read the questions out aloud or write them up on a board for the expert to answer.

The group members may be nervous or embarrassed about asking questions and the buzz groups should help minimise this problem. Remember to strongly encourage the group members to come up with questions. Remind them that when it comes to HIV and AIDS, there is no such thing as a silly question.

Social events

Organise social events that will bring fun but will also be good for people’s health. These could include things like long walks, sport events, retreats, picnic by the seaside/river/clean dam, lawn, or whatever the group thinks will benefit them most. Social events also could be in a form of a concert, a dance, party, music festival etc. The group can start a book club where members can meet and share information.

Organise suppers and tea parties where people visit each others homes and have a relaxed social time together. It is important for people to spend social time in a group where they can be free and open about their status. Celebrate birthdays and other occasions together.

Group and individual counselling sessions

People need emotional support and a chance to talk about their feelings. Every support group should have some time set aside for group counselling or sharing. If a trained counsellor is available, members should also be encouraged to attend individual sessions.

Exercising

Members should be encouraged to do a lot of exercising. They do not have to belong to any gym, but they can exercise at home as individuals or start their own club at their own time. Time can be set aside on some days for exercising during support group days, an hour will be enough. When you exercise you also produce more blood cells, which means a better immune system. Swimming is very good exercise and members can go swimming together or can go as individuals.

Dancing is a great way to get exercise without feeling it. Put on the radio or play a CD that the group members like. When you dance you will also feel “happy” and your body will benefit from the extra oxygen it will receive. Oxygen also helps kill infections.

Exercise is also a good way to help reduce mental stress and anxiety. Too much stress and anxiety can cause a breakdown of the immune system. Yoga and other stretch exercises are also excellent methods to de-stress the mind and strengthen the body.

Nutritional education

A person living with HIV and AIDS should eat nutritious food daily. It is difficult at times for unemployed members to follow the correct diet. There are other ways and means that a support group can explore to ensure that members get a nutritious diet.

Some support groups start their own vegetable garden and provide lunch for the members on a daily basis. Fruits are also important and members can explore an easy way for members to have fruit every day. Members can contribute money every time they meet and buy fruits and divide the fruit amongst themselves. E-pap is now available in many areas as a good source of nutrition for people living with HIV and AIDS.

There are also some foods that people with HIV and AIDS should eat to strengthen their immune systems and avoid getting infections. Here are some tips:

Eat something yellow (like pumpkin or carrot), something red (like beetroot or tomatoes) and something green (like spinach) every day.

Eat soya or eggs instead of meat. If you do eat meat, cook it well. Avoid pork

Drink at least eight glasses of water everyday

The following should be taken daily:

1. 1 Glass of lemon juice
2. 1Tablespoon of fresh garlic
3. 1 Teaspoon of ginger (not raw)
4. 1 Tablespoon of pumpkin seeds
5. 5 Tablespoons of ProNutro
6. 6 Tablespoons of sour milk or yoghurt

If you get a cold, increase the amount of garlic to at least 5 tablespoons a day. Remember you can also steam with garlic for sinuses or gargle with it for a sore throat.

Avoid sugar and cool drinks with sugar. Drink unsweetened fruit juices. Avoid peanuts and peanut butter.

Multi-vitamin supplements are very good for people with HIV and AIDS. Just one multi= vitamin pill a day can help build the immune system. Unfortunately, vitamins are quite expensive to buy. They may be cheaper in bulk and the group members might consider all contributing some money for this.

You could find out if any clinics or NGOs operating in your area have access to free or cheap vitamins which the members could access. Some organisations may offer vitamins as part of a food parcel program.

Disclosure

This is a difficult area for all people living with HIV and The leader and other members should be patient with one another. Disclosure is difficult for some members because sometimes members will not have told their families, friends or partners. The individual members will want at times to first deal with their own emotions before they tell other people. This process is important and should be allowed to take its course.

The leader and other support group members will be important when the individual decides to tell their family and friends as they will need a lot of support. It is always best to ask the individual what kind of support she/he will need.

The group leader must always ensure that the members have had pre-test and post-test counselling and ensure that the member gets counselling and on-going support.

In group discussion no member should ever be asked how they came to be infected.

Acceptance

This matter needs to be discussed with members. Members of a new group may be at different stages in terms of when they were diagnosed. Those who are newly diagnosed may be in a state of shock and be very anxious. Those who have lived with their diagnosis for longer may have accepted it and learned to live with it.

Members should be assessed and evaluated from time to time to see where they are in terms of accepting their status. What would help them to be in control of their status, what kind of support do they need, who is important to give them that support? What difficulties do they encounter at certain points, what would make them feel better? Discussing these questions with individuals or in the group can help people to be in touch with their feelings.

Protecting yourself against re-infection

The group should discuss the need to protect themselves against re-infection. Some people with HIV think that they can be in no further danger if they have sex without a condom because they are already infected. This is not true! HIV has many different strains, some of them very powerful. If a person with HIV fails to protect themselves against further infection, he or she may contact a strain of HIV that is more dangerous than the strain they already have.

Protecting others

A very important role of the group should to be to ensure that the members learn how to not spread HIV to others. In group meetings remind the members that they not only have a responsibility to look after their own health but must also protect others from contacting the virus.

This means that a person with HIV must ensure that a condom is used each and every time she or he has sex. In the group, talk about the difficulties members might have with condom use. This may include issues such as being embarrassed to buy or ask for condoms or thinking that condoms reduce sexual pleasure. Some women may be afraid to ask husbands or boyfriends to use them. Ensure that the members know exactly how to use condoms properly (see below) and know where to obtain them.

People with HIV should ensure that they keep their toothbrushes and razors for their own use and should not use someone else’s toothbrush or razor. HIV can spread through fresh blood on these items.

Explain to men in the group that if a woman they had sex with is pregnant, even if he is not the father, it is vital that he ensures she is tested and gets early medical care. This is for the sake of not only her own health but also to protect the baby. (If the pregnant woman gets early treatment, the risk of transmitting the virus to the baby will be greatly reduced).

Correcting Misunderstandings

The group should also play a role in correcting some common misunderstandings on how HIV is spread. HIV CANNOT be spread through any social or affectionate touching which does not involve the exchange of bodily fluids. Kissing is a very low risk activity. Sharing the same bedding is perfectly safe. HIV-positive and negative people can share meals together with no risk whatsoever. While sharing the same kitchen utensils cannot transmit HIV, this can transmit TB and flu viruses.

Correct condom use

Using condoms correctly will greatly reduce the risk of HIV infection. While some may find the issue a little embarrassing, it is important that group members have the opportunity to discuss proper condom use and ask questions. The support group can help to correct any misunderstandings about condom use.

Here are some important points (and answers to common questions) on condom use:

• Although condoms need to fit properly and come in different sizes, most condoms will fit most men.
• Condoms need to be opened and handled carefully. Condoms in damaged packages or past their expiry date should not be used. Condoms should not be stored for prolonged periods in a wallet or in hot or sunny places (for example, in a car or by a window).
• Oil-based lubricants like Vaseline, most hand creams, butter, or other oils must never be used with condoms. Oils can dissolve or weaken latex and lead to breakage. Water-based lubricants, however, are very good to use with condoms. Water-based lubricants (such as KY jelly) reduce the friction and can help stop breakage.
• The condom must be put on after erection and before any sexual touch. Some condoms have a reservoir tip; some don't. In either case, the tip of the condom should be squeezed while the condom is unrolled to leave an airless pocket to collect semen.
• After intercourse, the penis should be withdrawn while still erect. The base of the condom should be held around the base of the penis to prevent it from slipping off or spilling semen.
• Condoms should never be reused. They should be wrapped up in tissues or paper and thrown in the garbage, not in the toilet. (They can block the toilet).

What role can the support group play around antiretrovirals?

The group can provide important information and support around ART. Many people are fearful of taking the medication thinking the ART will make them sicker. Group members who have been taking ART and who have seen their health improve can provide reassurance and support for those who are fearful.

When people first start taking ART they may experience a range of side effects such as upset stomach, tiredness and headache. When people are experiencing these side effects they may wish to go off the medication. The support group can provide encouragement to continue or to at least be reassessed at a clinic if the symptoms continue.

Another very helpful role of the support group is to provide information and support about antiretroviral medication (ART).

The group can provide important information and support around ART. Many people are fearful of taking the medication because they think the ART will make them sicker. Group members who have been taking ART and who have seen their health improve through taking ART can provide reassurance and support for those who are fearful.

The group can be a forum for practical information about ART to give members a better understanding of them. This includes such things as what ART are, what they do, how they should be taken and stored.

When people first start taking ART they may experience a range of side effects such as upset stomach, tiredness and headache. When people are experiencing these side effects they may wish to go off the medication. The support group can provide encouragement to continue or to go back to the clinic for reassessment.

Many people find it difficult to keep to the strict ART regimen requirements. The group should discuss strategies to help people stay on the medication and take it properly. For example, a group member could share what has been helpful to him or her to remember to take the medication.

For more detailed information about ART and the national guidelines for them click here.

Evaluation of the support group

Evaluation is judging the effectiveness of the support group in meeting the needs of the group members. Every so often the group should re-examine its vision and see to if the activities and functions of the group are helping make that vision a reality.

If the group is off-track with its vision or goals then the members need to discuss how the group can change its focus to better meet the needs. Brainstorm with the members and list all the strengths and the weaknesses of the group. Address each weakness and discuss what the group could do to help turn them into strengths.

The needs of group members may change over time. When this occurs the group can revisit its vision and change it to suit the changing needs.

3. Staying healthy – wellness programmes

Medical treatment is not the only way to stay healthy. If you are HIV positive, it is very important to keep your immune system as strong as possible. This will help you fight diseases and infections. Food, exercise and lifestyle are all important.

Here are some of the things we should do:

• Educate people with HIV and AIDS and their families about healthy eating [see information in box below]
• Start vegetable garden projects to help provide the right food types to people who cannot afford them
• Start food projects that collect food from supermarkets and farmers and distribute it to people who need it.

Keeping a healthy body

People living with HIV or AIDS need different foods from healthy people. HIV and AIDS and the medicines people have to take can make you lose a lot of weight, feel cold all the time and get serious stomach problems. This will make you weaker and more vulnerable to serious infections. Because you easily get infections, it is also very important to clean and cook food properly and to drink only clean water.

Good food

Drink two litres of water a day
Drink sour milk, milk or yoghurt
Eat beans, lentils, eggs or meat every day if you can – beans are just as good as meat if you put a tablespoon of uncooked sunflower oil with it before serving.
All vegetables and fruits are very good
For a healthy stomach, eat raw garlic, raw carrots or dried pumpkin seeds.
Eat a lot of grains and starch – maize, rice, sorghum, brown bread

Bad foods

Sugar is very bad for the immune system and causes stomach problems
Fried foods and cooked oils stop the stomach from being able to digest food
Spicy food can also cause stomach upsets – do not eat too much

Do:
Keep yourself occupied and interested in things to avoid depression
Try to exercise without straining yourself
Get enough sleep and rest
Find people you can talk to about your feelings

Do not:
Smoke, drink or use addictive drugs
Go on diet or lose too much weight

Click here for more tips.

People who live in poverty will find it very hard to stay healthy. We have to make sure that poor people get access to food projects, government grants and other poverty alleviation projects. (See next section)

It is very important that people with AIDS do not get too much stress and that you feel good about yourself and your life. It helps to stay active and not become bed-ridden or depressed. Any kind of activity is good – limited exercise, gardening, social activities and sports’ groups. People should obviously work for as long as possible as this will also help you to feel good about yourself. Emotional support is vital and people who cannot talk to anyone else about their condition will definitely become ill more quickly.

4. Government support and grants

People with HIV and AIDS and their families can get support from the government in a number of ways. Some grants are only available to people who are poor. Social workers and advice office workers are the best people to get help from if you need government support.

The following is a list of the main forms of support and how you get it. Please note that the amounts change every year. These figures applied in 2007 (Also see SASSA website, http://www.sassa.gov.za/default.asp?pageid=925, for information on grants’).

Disability grant

If you are unable to work because of illness and have very little income, you can get a grant of R870 per month. A means test is used to decide if you are poor enough to qualify.

If you need a lot of care and nursing you may be also able to get a grant in aid of a further R180 per month.

Foster care grant

If you are the official foster parent of a child, you can apply for a foster care grant of R620 per month. You have to provide the child with adequate food, medical care, clothing, schooling and shelter. Your income will not be taken into account but if the child has an income it can be no more than R1120 per month.

Care dependency grant

A care dependency grant of R870 is meant for children who are ill or disabled and need special care. It can be used for children who are ill with AIDS. Parents or foster parents or anyone who is responsible for looking after the child can apply. You can get a care dependency grant even if you already have a foster grant.

Child support grant

Anyone who is poor and looks after a child under 14 years old can apply for a child support grant of R170 per month. A means test is used to work out if you are poor enough to qualify for this grant. The person who applies cannot earn more than R13 200 per year if they live in an informal settlement or rural area, and more than R9600 per year if they live in an urban house.

Social relief

Social workers can also give temporary relief for people who are in urgent need of support. Sometimes you can wait for a few months for your grant and the social worker can the give you temporary relief – this will be food or money. It will not be a lot and it will only be given to you for a short time.

How to apply for grants

Go to your nearest Welfare office (Department of Social Development). If there is no office near you, go to the nearest magistrate’s court.

You will need different papers for different grants. The social worker will give you a list. On your first visit, take your ID book and any other proof you have that may be needed for the application. Here are some examples:

• Your ID document
• Medical certificate
• Proof of income and assets (such as wage slips or receipts, UIF card, discharge certificate, bank account statements, pension book)
• Marriage certificate
• Death certificate of parents and birth certificate of children if you are looking after orphans
• Affidavit from birth mother if the children’s real parents are still alive – to say why you are taking care of them and that she agrees with you doing that.
• Letter from your employer if you have any income

If you have no letters or documents about your income, you need to make an AFFIDAVIT. You must write a letter with Affidavit written at the top, explaining why you don’t have any proof of income and state exactly what your income and assets are. Take the letter to the Police Station and ask them to sign and stamp it. You have to say to them that you “swear”, or make a solemn promise, that what you have written is the truth.

5. Poverty alleviation

Keep employment

One of the most important ways of stopping people who are affected by AIDS from becoming impoverished because of the disease is to make sure that those who are working can stay in employment. This means that employed family members should not stay at home to look after people who are ill unless this is unavoidable. People with AIDS should be encouraged to work as long as possible.

Income creation

Micro-lending projects should be encouraged for affected families to help them launch a small business or enterprise from the home. The micro-lending projects should be properly run and supported and not be the same as micro-loans that you get at huge interest and which further impoverish people.

Small employment creation projects can also be started. For example, in Khayelitsha in Cape Town, the Wola Nani project has been very successful in providing a small income for women living with HIV and AIDS. They have started a beadwork and craft workshop where people learn skills. Many of the women can do the work at home and then the project sells and markets it for them. Wola Nani sells many of their products overseas.

Grants, food and material support

Where family are already impoverished, it is very important to make sure that they get the social grants that they should have access to (see Section 3 above on Grants). Food parcels should be distributed to impoverished families -it is very important that when you distribute, you try to get food to feed the whole family and not just the person who is ill. If only the ill person gets food parcels, they will share it with the whole family anyway and are unlikely then to benefit from it. More sustainable projects should be launched in the community – for example, food gardens to help people grow their own nutritious food.

An important part of poverty relief is food, clothing and material assistance. The proper distribution of materials needs good coordination. You will need the following:

• A good plan and volunteers to collect food and materials from government, businesses and the public
• A place to receive materials and a way to transport them
• A safe place to store materials
• A coordinating committee made up of project leaders plus key people from other welfare and community services.
• A list of people who need support and the organisations that can get the support to them – a distribution system.
• People to sort materials and make up parcels for distribution.
• A transport system to get parcels to distributors.

6. Medical treatment, clinics and hospitals

When you become ill with AIDS, you need treatment for many things. Common infections can kill you more easily if your immune system is weak. If you have other diseases like TB or sexually transmitted infections, you also need treatment.

TB

It is very important to treat TB since this is one of the main causes of death for people with AIDS. Most clinics and hospitals have got TB treatment programmes (DOT programmes) that are quite well developed. The Home-based care should be linked with the DOT programme which supports patients to take their medication. Multi drug-resistant TB is a big threat and anyone who stops taking medicine or does not respond to medicine should get medical advice urgently.

Infections

People who are getting ill from AIDS should also be given broad-spectrum antibiotics to prevent things like lung infections that can easily kill people with weakened immune systems. Opportunistic infections, like thrush and gastro should be treated. Any sexually transmitted infections should be treated.

Vitamins

Good nutrition is one of the most important ways of strengthening the immune system and can be supplemented with vitamins, where this is affordable. Studies in Eastern Africa have shown that even one dose of multi-vitamins a day helps to slow down the damage caused by HIV.

Anti-retrovirals

What are antiretrovirals?

HIV is a retrovirus. The medications which are used to control HIV are therefore called antiretrovirals, or ART for short. Antiretrovirals are taken in combination to lower the levels of HIV in the body. This allows the immune system to partially recover and prevent further damage to the body.

In November 2003 the South African Government announced that it would implement a comprehensive national HIV and AIDS treatment plan to roll-out antiretroviral drugs. Soon afterwards, Cabinet announced the Operational Plan for Comprehensive Treatment and Care for HIV and AIDS . The aim of the plan was to establish at least one antiretroviral service point in every health district across the country in the first year, and one service point in every local municipality within five years. In 2004, the Department of Health released a treatment guidelines (or “protocol”) for the rollout of antiretrovirals, which spell out when a person is eligible to receive antiretrovirals.

People taking antiretrovirals may find that their appetite improves. They might pick up weight and problems such as diarrhoea or skin rashes could clear up. While ART allow long-term control of the illness, it is important to emphasise that antiretrovirals are not a cure for HIV and AIDS.

The antiretrovirals must be taken each day for the rest of the person’s life. Once a person has started taking the ART, it is absolutely critical that they keep on taking the medicine as prescribed. They MUST take their medicine each and every day in accordance with instructions.

If a person stops taking the ART, or misses too many doses, the medication could lose its effect, as the virus becomes resistant to the ART being used. Worse still, the person could develop a strain of HIV that is completely resistant to medication.

There are three classes of main types of antiretrovirals currently available in South Africa.:

• Nucleoside reverse transcriptase inhibitors (NRTIs): AZT, D4T, 3TC, DDI
• Non-nucleoside reverse transcriptase inhibitors (NNRTIs): Efavirenz, Nevirapine
• Protease inhibitors (PIs)

Where are antiretrovirals available?

In the public sector, ART are only dispensed at specific ART centres across the country. These are usually located in clinics and hospitals. To be eligible for ART, it must be established that the person meets clinical, immunological and social criteria for entry to the ART program. To find out the location of an ART centre in your area enquire at your local government clinic or hospital (staff social workers and doctors should know). You could also call the AIDS Helpline on 0800 012 322.

The Helpline can also be used if you are already on treatment and you are having problems. Nurses are available from 7am to 9pm during weekdays to give advice.

How does someone qualify for free antiretrovirals?

Once it has been established that a person meets the medical criteria (see below) he or she will undergo a patient readiness assessment. This assessment is undertaken by a treatment team and can include a doctor, nursing sister, social worker or counsellor. The team looks at psycho-social considerations (see below) to determine if the person is ready to go on antiretrovirals.

If the team considers that person to be ready, ART treatment can start

Antiretroviral treatment guidelines (or “protocol”) were issued by the National Department of Health in 2004. These guidelines establish basic medical and psycho/social eligibility criteria.

Medical criteria: An HIV-positive person has to have either one of the following two:

• CD4 (a type of white blood cell) count of less than 200 cells/mm per drop of blood

or

• Stage 4 HIV-related illness

An HIV -infected person with Stage 4 illness (AIDS) is at risk of developing opportunistic infections. These are infections, which only happen in people with very weak immune systems

Psychosocial considerations:

The presence of the following these psycho social factors DO NOT necessarily prevent a person from starting ART therapy. However, the treatment team will consider these factors to determine if the person is likely to keep taking the medication.

• Demonstrated reliability, i.e. has attended three or more scheduled visits to an HIV clinic.
• No untreated active depression.
• Disclosure: It is strongly recommended that clients have disclosed their HIV status to at least one friend or family member OR have joined a support group.
• Insight: Clients need to have accepted their HIV positive status, and have insight into the consequences of HIV infection and the role of ART before starting ART therapy.
• Able to attend the antiretroviral centre on a regular basis or have access to services to get the ongoing tests, medicines and support needed.

Note: The treatment team will usually exclude anyone who is an alcohol or substance abuser.

Helping people stay on the medication

The Department of Health suggests the following measures to help people stay on their medicine. (While the measures are mainly aimed at clinical staff they may be useful for anyone working with people considering taking ART or already taking them):

• Spend time and have multiple discussions with the person to explain goals of ART therapy and need for adherence.
• Help the person make a treatment plan that the person can understand and to which he/she commits.
• Encourage disclosure to family or friends who can support the treatment plan.
• Inform the person of potential side effects ways to cope with this.
• Make sure the person knows that they should go back to the clinic or hospital if side effects become severe (where the doctor might change their dose) and NOT to stop taking the medication
• Provide adherence tools if such as a written calendar of medications and pill boxes.
• Encourage use of alarms, pagers or other available mechanical devices for adherence.
• Help the person avoid bad reactions to drugs. They must tell the clinic about any over-the-counter drugs or traditional medicines they are using.
• Include adherence discussions in support groups
• Develop links with community-based organizations to support adherence.
• Encourage links with support groups.

The role of hospitals and clinics in treatment and care

Hospitals and clinics are the only places poor people can go for treatment. All medication is only available through hospitals or clinics. Testing is also coordinated through clinics.

When people get very ill with infections that can be treated, they should be hospitalised if possible. If there is nothing the hospital can do for someone, it is often best for them to stay at home with the people they love. It is vital that hospitals and clinics work with home-base care and other community organisations to make sure tat there is ongoing care for someone who is discharged from hospital.

7. Home-based care

How to set up home-based care

People who are ill with AIDS need much more care than our hospitals and clinics can provide. It is vital that health workers work with communities and families to make sure that people who are ill at home get proper care. This is where the idea of home-based care comes from.

At a community or district level, a hospital or clinic should be co-ordinating a program in terms of providing treatment. The main role they should play is to provide the following to patients:

• Testing, diagnosis and counselling
• Treatment and medication
• Referral to support groups or other projects.

The hospital/clinic can play this role and deliver this service for thousands of people with HIV and AIDS. It is very important that the more direct support and care roles are played below a hospital level so that the hospital can do the things that it does best – diagnosis, treatment and medication.

For every hospital or clinic, a number of nurses or health workers should work more directly with the ill. They should take responsibility for training volunteers and supervising their work. They should also do medical assessments and home-based treatment for people who are very ill and cannot be serviced by volunteers.

At a community level, volunteers should be recruited and trained to work with people who are ill. Volunteers can be drawn from people who are already HIV positive or from community based, religious and other organisations. Volunteers should carry out home visits and do direct care work where necessary. They should call in health workers when they cannot deal with the case.

Family members are most often the direct caregivers for people who are ill. Families do the basic washing, cleaning and feeding and it is important they get both training and emotional support. Where the patient does not have a direct caregiver, the volunteers will have to do this work. If family members are available to provide some care, they should be trained by the volunteers who can also give some emotional support. Family members over 12 can be trained in basic hygiene, dealing with simple infections, basic nutrition, bed baths dealing with blood and body fluids. They should learn how to protect themselves from infection - For example, covering your hands with a plastic bag when you deal with blood can save your life.

The volunteers should give these families access to information, make referrals to other service providers and distribute food parcels and so on. They can also help people who are ill to get medication from the clinics through their links with the health workers.

People with HIV and AIDS can look after themselves while they are able to. They should be encouraged to keep themselves as healthy as possible and should be targeted for specific programs such as:

• Wellness programs to keep as healthy as possible and to strengthen immune systems
• Nutrition programs
• Training in basic hygiene and treatment for common infections like skin infections.
• Psychological and emotional support

They themselves should be trained in basic health care and where possible should be drawn into support and other activity groups.

A good model for a community HIV and AIDS care project could be:

1. Clinic/Hospital	Testing, counselling, treatment, medication
2. 10 nurses	Training volunteers, medical assessment, home-based treatment for serious cases
3. 200 volunteers	Home-based basic care, support for caregivers, spreading information, referral to services, food parcels
4. 2000 patients and/or family caregivers	Wellness, nutrition, psychological and emotional support, basic health care

It is very important for home-based care projects to target all people who are ill and being looked after at home. This way, people who receive visits from home-based care volunteers will not be immediately identified by the community as people with HIV and AIDS. This will avoid people not joining the programme because of the stigma attached to HIV and AIDS.

The work done by home-based care workers

Most home-based care workers will do very basic things when they visit patients at home:

• They will assess the person’s condition and the kind of care they are getting from the family.
• They will do some training to help the family to improve their care.
• They will distribute food parcels and make sure that the family is getting the social grants that they are entitled to receive.
• Where necessary, they will refer the person to clinics or hospitals for better treatment.
• They will do some counselling and support to make sure the family is coping emotionally.

In cases where the family is not able to look after the person themselves the volunteers will visit the person who is ill a few times a week and give them a bed bath, look after pressure sores and make sure that there is food in the house.

In cases where people are very ill, the nurses should be involved in home-visits and in very serious cases, doctors may be required to visit people at home.

Advantages of home-based and community care

• It frees up the number of hospital beds available for those who are very ill or suffering as a result of other diseases and accidents.
• It involves the community in directly taking responsibility for HIV and AIDS.
• It allows people who are ill to spend their days in familiar surroundings and stops them from being isolated and lonely.
• It gives families access to support services as well as emotional support.
• It promotes a holistic approach to care and does not only focus on narrow health needs.
• It is pro-active and helps keep people healthy for longer.
• It involves the patients in their own care and gives them more rights to decide about what should be done.
• Many of the common diseases or conditions can easily be managed at home with the right training.
• It takes a big burden off the family, especially children.
• Home-based care focuses on the individual patient and her/his needs.
• It avoids unnecessary referrals or admissions to hospitals and institutions.
• It helps to co-ordinate different services in the community and get them all to people who need it through one volunteer.
• It helps to collect data and to record information about what is happening in the community.
• It makes sure that there is consistency of services and that everyone gets access to things like grants, projects and food parcels.

How to get home-based care to people who need it

AIDS is still a hidden disease and it can be difficult to reach the people who need home-based care. Remember to run home-based care as a project for all people who are ill at home and not to make it only for people with AIDS. This will make it easier for people to come forward and ask for help.

Home-based care volunteers can publicise the service by doing door-to-door work in communities and explaining what is offered. Religious and other community organisations can also be targeted for outreach sessions to publicise the service.

The most important contact method is for the people living with HIV and AIDS themselves to ask for support. It is important that every health worker and social worker who may come into contact with someone who is ill, tells them about the home-based care service and how to get hold of it. Support groups must be involved in making referrals to home-based care programmes.

From the first moment when someone tests positive, the counsellors should offer a family visit to help explain the situation to the family. The family should then be put on a list to make sure that follow-up and support is offered to them.

When people with AIDS visit clinics to get treatment for opportunistic infections, they should also be offered home-based care visits. Some people with HIV and AIDS never get support from the formal health system and it is impossible to identify them. Churches and schools should be involved in identifying people in need and report it to the home-based care system or directly inform the individuals so that they can access care. Teachers for example may notice that a child is staying away from school and find out that the child’s parents’ are ill. The child should then be told about the home-based system and the teacher and a volunteer may visit the family.

First Visit

During the first visit by volunteers to a family, it is important to explain the following:

• What the illness involves
• What kind of care is needed
• How to do basic and safe health care
• To find out what resources and time the family has available
• To find out what commitment the family has to caring for the sick person
• To explain all other services and grants available to the family.

The volunteer should identify the level of support that the family will need and make sure that initially visits are quite regular, so that problems can be picked up early. 90% of people that are ill are cared for by their relatives. It is important that the relatives are properly equipped to do this work and get the emotional support they need. Where relatives are unwilling to look after someone, the home-based care project will have to give more regular support and make sure that the person is not neglected.

Involving people with HIV and AIDS

Home-based care volunteers can be drawn from any organisation within the community and individuals should be encouraged to sign up. One of the most important groups for recruiting volunteers is people living with HIV and AIDS.

They are very well placed to play an important role in any of the following areas:

• Counselling people who have been diagnosed as HIV positive or who are being tested at hospitals and clinics.
• Forming and running support groups for people living with HIV and AIDS
• As volunteers for home-based care projects
• As community educators who can talk from their own experience
• Awareness events
• As speakers at awareness events
• Special services, vigils, cultural events etc.
• Helping children to cope with parents who are ill
• As trainers for volunteers
• As representatives on structures that are addressing HIV and AIDS and related issues

Training

All volunteers will need training in the following basic things:

• Nutrition – the best food and lifestyle to ensure that the person stays healthy as long as possible
• Basic First Aid and Care and how to do it safely. This includes bed baths, pressure sores, dealing with body products etc.
• The basic diseases and infections that a person with AIDS is likely to get and how to care for that person in that condition
• Referral systems for medicine, tests, social grants, support groups, counselling, children’s problems etc.
• Basic counselling skills to provide emotional support for the person with HIV and AIDS as well as for the family members and children
• Cultural understanding and sensitivity so that the volunteer does not appear tactless or blunt and so upset the family or the person with HIV and AIDS.

Keeping volunteers active

One of the biggest challenges for a home-based care project is to keep volunteers active and involved. It is important to find ways of motivating volunteers.

Here are a few ideas:

• If possible find a way to compensate volunteers for their work – even if it is just a small payment for transport and food.
• Make sure that the training of volunteers is done formally and that people get certificates that give them some qualification.
• The Department of Health and First Aid organisations can be drawn into this to make sure that First Aid training is given and that the certificates are accredited in terms of the National Qualifications framework. This makes the project much more attractive to young people who have finished school and who have not found jobs. Firstly, they will get a qualification. Secondly, they will develop some work experience that will help them when they look for future jobs. Thirdly, they will develop more self-esteem and confidence.
• Volunteers can easily get burnt out and it is important to offer some counselling and support as well. They should meet regularly with each other and share some of their experiences and feelings.
• Volunteers should get proper supervision from project staff or senior volunteers to make sure that they get ongoing training and emotional support.
• The project should also look after its volunteers in the same way that any organisation has to look after its members. This means you should spend some time building people’s morale and recognize the contribution they make. For example, by giving people prizes, certificates or awards at community meetings.
• Organisations also often fulfil a social role in people’s lives and it is important for volunteers to have some fun together. You can organise things like dances, functions, fundraising events and so on, to help build team spirit.
• Some projects in South Africa target unemployed women for recruitment as home-based-care volunteers and try to organise a small payment for every visit. Other projects target young people who cannot get jobs and provide them with some training and certification. The work experience they get can help them build their skills and perhaps assist with finding jobs.
• It is very important to be clear about issues of payment and training so that volunteers understand what they are committing themselves to. Try not to raise false hopes of payment if you cannot deliver because this will lead to conflict between your project and the volunteers you depend on.

8. Dealing with death

It is very important to make sure that people that are ill and are likely to die prepare properly. This will help them to not worry too much about what will happen to their children and their families after they have gone.

They should do the following kinds of things:

• Identify guardians from among their family or friends who will look after their children
• Write wills to ensure that their land or belongings are passed onto their children;
• Sort out any bank accounts or insurances to make sure that they will pass easily to the people that will need it;
• Create a memory box for their children. This includes things like family photographs, important documents like letters. Many people whose children are still small, also want to write a letter for the children to read when they are bigger that tells them what they feel about their children, what their dreams are for them and how much they care about them.

Efforts should also be made to ensure that people spend their last days in comfort, in familiar surroundings and with the people they love. This will help them to die with dignity.

Funerals can be very expensive and many people cannot really afford to bury their loved ones. Try to find ways to make funerals more affordable and organise community assistance.

Municipalities and religious organisations should work together to make sure that poor people can access paupers burials. These are free funerals paid for by the municipality for people who cannot afford them. Many people think that paupers burials are not real funerals and that you cannot go to the grave.

Family are allowed to attend these funerals and a service can be held at the grave. Try to find ways to make these funerals dignified and make sure that people have access to them if needed.

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