This guide deals with setting up and running support groups for people living with HIV and Aids and their families.
It has the following sections:
- Why set up support groups?
- Aim of support groups.
- Setting up support groups (summary)
- Different types of support groups
- Making your support groups a success
- Before you set up the group
- Finding members
- Developing a shared vision
- Developing an action plan
- Examples of what can be done in a support group
- Topics that the group should address
- How to support members who use antiretrovirals
- Evaluating your work
“I wanted to see other people with HIV. We gained strength just from knowing each other” HIV support group participant, South Africa
The stigma surrounding HIV/AIDS makes life more difficult for people living with HIV/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/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/AIDS to come together and support one another. People living with HIV/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/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/AIDS feel welcome 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/AIDS.
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/AIDS and their families.
- To ensure that a person living with HIV/AIDS can live a positive and productive life.
- To empower members with knowledge about HIV/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/AIDS.
- To demystify the disease and promote de-stigmatisation and community acceptance of people living with HIV/AIDS and their families.
- To strengthen HIV prevention messages by encouraging the community to have contact with people living with HIV/AIDS.
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.
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/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.
Some people living with HIV/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/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.
Some people with HIV/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.
Some people living with HIV/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.
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.
1. 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.
2. 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.
3. 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.
4. 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.
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/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 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.
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/AIDS.
Put the vision statement up on the wall at all group meetings.
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.
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/AIDS, there is no such thing as a silly question.
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.
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.
A person living with HIV/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/AIDS.
There are also some foods that people with HIV/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 Glass of lemon juice
- 1Tablespoon of fresh garlic
- 1 Teaspoon of ginger (not raw)
- 1 Tablespoon of pumpkin seeds
- 5 Tablespoons of ProNutro
- 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/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.
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.
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.
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).
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).
The group can provide important information and support around ARVs. Many people are fearful of taking the medication thinking the ARVs will make them sicker. Group members who have been taking ARVs and who have seen their health improve can provide reassurance and support for those who are fearful.
When people first start taking ARVs 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 (ARVs).
The group can provide important information and support around ARVs. Many people are fearful of taking the medication because they think the ARVs will make them sicker. Group members who have been taking ARVs and who have seen their health improve through taking ARVs can provide reassurance and support for those who are fearful.
The group can be a forum for practical information about ARVs to give members a better understanding of them. This includes such things as what ARVs are, what they do, how they should be taken and stored.
When people first start taking ARVs 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 ARV 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.
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.
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