SUPPORT

GROUP MANUAL

How To Setup A Support Group For People Living With HIV

This manual has been compiled in order to offer assistance in establishing support groups. People living with HIV who have experienced the power and usefulness of support groups are often proud and positive to be part of such a group. We hope this manual can help you learn why a support group is useful and how to go about getting involved with one, or how to go about setting one up.

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Table of Contents Why a support group? 04 Finding a beginning 04 Look for existing groups 05 Ask other groups how they got started 05 It is best to seek out professional assistance before you start 05 Understand your motivation for starting a support group 05 Determine the scope of your group 05 Consider how often your group should meet 06 Find a suitable meeting place and time for you meetings 06 Choose a name for your group 06 Getting organised 06 Why get organised? 06 Constitution 06 Why is the constitution important? 07 Structure and democracy 09 Communication 09 Leadership 10 Representation 12 Why 12 How? 12 Ambitions 13 Projects 13 Reporting 13 Conclusion 14

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Why a support group? Everyone needs support from people who care. Those of us who are living with HIV need a lot of support. Living through difficult circumstances can be emotionally and mentally exhausting. Having a support group can make you feel less lonely or stressed and give you a sense of control over your situation. Even if you don’t currently know anyone who has gone through your unique experiences, you can seek out the advice of others and build a community of support. We need to have a group of friends or peers around whom we feel safe, as well as friends and peers who will listen to us without commenting or judging. It is very important for a person living with, or affected by, HIV to have opportunity to be part of the efforts to prevent HIV, prevent stigmatisation and discrimination, and to secure rights for people living with HIV.

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We call the efforts to address HIV the “HIV Response”. This response involves government, donors, NGOs and, most importantly, people living with HIV. A support group can help People living with HIV (PLHIV) to be more involved, have a louder voice and really have an impact on the decisions that are made that affect how the epidemic is being handled.

Finding a beginning People that want to share the same vision can come together and form a support group. In the case of HIV, the group vision has to have something to do with HIV (such as preventing new HIV infection, preventing AIDSrelated deaths and eliminating HIVrelated stigma and discrimination). Before you think of forming the group identify what your needs are as individuals and try to ascertain the commonalities. What ideals and ideas do you share?

Look for existing groups. Chances are that at least one other group, focused on your particular concern, already exists. You may be able to join an existing group, or if no groups exist in your area, then you may be able to establish a branch or chapter of an exisiting support group in your area. Ask other groups how they got started. Learn from others, even if their group addresses different needs than the group you want to start. Their experience can help you plan out everything you’ll need from the ground up. It is best to seek out professional assistance before you start. That way, once you organise your group, you will have the guidance you need to get started — this support you can get from your Constituency Aids Co-ordinating Committee (CACOC) or any professionals in your community. Tonata can also help (see back for contact details).

Understand your motivation for starting a support group. While it’s perfectly acceptable to need the support of others, you should not start a support group solely for your own needs. Use your experience and your understanding of what you need to offer that support mutually, ensuring that everyone in your group will have the support that they need for their problems. Determine the scope of your group. You want to help as many people as possible, but if a group gets too large it may be difficult to allow everyone adequate speaking time. At the same time, you don’t want to be too narrow and restrictive with your group’s parameters. Knowing the ideal scope of your group will help you when it comes time to open your group to others.

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Consider how often your group should meet. Are the issues pressing enough to warrant weekly or even twice-weekly meetings? Find a suitable meeting place and time for you meetings. Try to obtain free meeting space at a local church, community centre, or under a tree. The sitting arrangements should be arranged in a circle and avoid a lecture setup. Recently local government and other organisations are keen to help support groups — you may be surprised to find out just how much they are willing to help you get started. Choose a name for your group. Share a few options at your first meeting for additional feedback and ideas from members before deciding. The naming process should be a fun aspect of creating a support group, and should allow everyone to have equal input.

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Getting organised Why get organised? It is important for the support group to be organised to ensure order and foster a sense of respect for all group members. An organised support group will be taken seriously by others. There is also much less chance of the support group making unfair decisions if the group has a structure to help make those decisions in a proactive and democratic way. A support group could choose to function without a lot of paperwork and guides. However, it is important that support groups keep records of when and where they meet and any finances they manage. This helps to make sure that the support group is taken seriously.

Constitution A constitution is a written document that describes what a support group wants to do, how it will be governed

and how the people who govern it will be elected and what their powers will be. The constitution defines in a broader way the rules or policies that cover the way its activities are implemented. It is a governing tool which is aimed at defining and protecting the group and individual members. It should be developed by the founding members of the group.

Why is the constitution important? The reason for having one is that it is a guiding document for the support group. It protects the members and the group by providing guidance for how things should happen.

A good constitution should have the following (you can use this check list for your support group constitution): Description

Y/N

Name of support group The purpose of the support group Who can belong and who cannot belong to the support group? How the support group is governed Leadership structure How the leaders are elected/ their terms of office The leadership roles and responsibilities How the members join the support group How the members leave the support group What happens in the case of death of a member How members participate How often members meet and the agenda to be followed Major activities of the support group Vote of no confidence in the leadership Annual General and special meetings Membership issues Conflict management Benefits of members

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For a group to run effectively, it may be necessary to determine roles for members to play. Below will give you an idea of the roles and the kind of responsibilities and qualities that are needed. Position

Responsibilities

Chairperson

• • • • • • • •

Secretary

• • • •

Treasurer

• • •

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Skills and Qualities

Ensure that the constitution is developed and owned by members Ensure other necessary guidelines are in place Ensure that activity plan is in place Call for meetings and ensure that procedures are followed Maintain discipline and help resolve the conflict Represent the support group outside the group Make sure all meetings and activities are documented. Review and oversee the groups finances (if any). Ensure all activities have properly kept records Organise and communicate the agenda/plan of activities to members on time Keep records of essential documents and make them accessible to members Keep minutes of meetings and activity reports of the support group.

• • • • • • •

• • • • • •

Good writing skills Trustworthy Reliable Intelligent Punctual Confidential person

Keep all financial records of support group May need to manage special funds from time to time Give financial reports to the management at the special meeting and to the rest of the members during meetings if need be.

•

Good with numbers and able to keep a simple record of finances Trustworthy and has a strong character Reliable Punctual

• •

• • •

Respected by members Has good ideas Trustworthy Fair and respectful to all Have good listening skills Good organisational skills Confident at ease talking in front of others On time Understand the purpose of the group.

Structure and democracy Share responsibilities and delegate work in the group. Decide who will be the primary contact person/people for the group. Consider additional roles members can play in making the group work. •

•

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Decide which tasks you’re willing to entrust to others in the group. Appoint those tasks with an understanding that each role will include great responsibilities. Be clear in giving instructions and laying out the terms of each role. Give credit to everyone who contributes. Let them know that their efforts are appreciated.

Communication As people, we need to acknowledge the way we communicate with others. Communication is complex and all

of us communicate differently, be it verbally and through our body language. People are not always aware of the manner in which they communicate and few people are aware of their own body language and the messages that are being picked up by listeners or others. When we are members in support group it is also very important that we know how to communicate with each other clearly and effectively. When we communicate as members of a support group we are required to be slow talkers and good listeners. It is very important that when we meet as members we give and receive feedback from one another. Poor communication skills could result in misunderstandings or upsets in a support group.

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Leadership Leading a group of people can often be a tiring, thankless job and yet, many find the experience to be completely rewarding. Satisfaction is directly related to how wellfunctioning the group is. How to get a group of people to work together is both an art and a science. For people living with HIV, groups form an important part of life. People are a part of at least several groups and they include a wide diversity of interests, including: recreational sports teams, hobby groups, faithbased prayer groups. Groups form as long as there is a common interest. There’s often no boss to force people to participate in a group and so that leaves the leader to use more ‘carrot’ than ‘stick’ methods. We’ll outline some of the best advice on how to get groups in your own personal life to function better.

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Understand the motivations. Don’t assume you know what people want. You really have to understand why they are participating and what they hope to get out of it. If you have good alignment amongst the members, then members will be motivated to participate. Craft a good set of goals. Once you understand what people want to get out of their experience in the group, it’s best to set up the goals that the group can largely agree on. Once the goals are established you can set up a great set of activities to support the goals. Plan some great activities. Once the goals have been agreed upon, brainstorm with the group to find a great set of activities to accomplish your goals. The best ideas rarely come from one individual — solicit opinions from group members. Think outside the box but also learn from the experience of others.

Putting together a good schedule of activities will help make the group excited and engaged. Keep everyone on the same page. Groups can quickly dissolve from lack of activity and communication. When it comes to people’s increasingly busy schedules, their personal lives often take a backseat to that urgent thing that regularly pops up. Direct and indirect communication are key to maintaining cohesion in the group and regular get-togethers and meetings can help strengthen emotional bonds within the group. Delegate, delegate, delegate. Nothing makes members feel more involved in the group than when they take ownership. When leaders delegate they not only reduce their workload, but also get much-needed ‘buy-in’ from people who are involved in the process. When there are problems, don’t think you have to solve them yourself.

Sometimes the critics are the best people to address the problems they are bringing up. Where possible, get volunteers and let them take responsibility for important things that make a difference. Lead by example. Again, pick the leadership style that works best for the group. Every group is different and has different leadership requirements. Beware of being the micro manager who must control everything. Be wary also of being slack, irresponsible or lazy. Good leaders lead by example, solicit ideas from everybody, listen carefully before acting, invest some time thinking a few steps ahead and, most importantly, trust their members.

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Representation Why? Globally, the Southern African Development Community (SADC) region has the highest number of people living with HIV and AIDS, yet their voices are seldom heard in the decision-making process. The meaningful involvement of PLHIV is a widely acknowledged global principle. PLHIV should be at the heart of how resources are used; however, this is often not the case. In Namibia the representation of PLHIV in programme design and decision-making process is highly recommended in government documents. In recognition of this, Tonata PLHIV collaborate with regional councils that have established support group forums both at regional and constituency level in the regions of Ohangwena, Omusati, Oshikoto and Oshana.

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Once your group is recognised, you are likely to be asked about your opinions on many subjects, including the development of new projects and initiatives. How? The best way to make sure your voice is heard as a support group is to begin interacting with Tonata. Tonata are specialists in gathering opinions and other data directly from grassroot level and carrying these messages to regional and national, and even international, levels. There is also the representative framework. It works through the election of representatives, using SMS, reporting forms and other materials that will help Tonata gather this information. Tonata can help with this and you can ask them for support. Your regional council and the Regional Aids Co-ordinating Committee (RACOC) is also likely to be helpful as the voice of PLHIV

is important to them. There is also a factsheet on the representative framework that you can ask Tonata or your CACOC for.

Ambitions Projects When you become a well-established support group there are various opportunities (such as gardening, piggery or chicken farming) available for community projects, or microfinancing for support groups through the support of the constituency council offices. Tonata, through partners, support the support groups to come up with village loan and savings schemes. While cooperative projects are often very effective and bring resources and help to the community that otherwise were not available, it is important that the support group mainly exists for mutual support and the exchange of information.

Reporting When a support group is well established and begins to undertake activities or receive services from NGOS, government departments, local businesses or development partners, they report quarterly to Tonata through the Support Groups Reporting Form. These reports are used to inform people responsible for making decisions. You will see the results of these reports on the Tonata website and sometimes you will notice changes in your local service provider that respond to the issues you report on. Tonata also gives feedback on the reporting via the radio programme and SMS service. Tonata will help you with this and possesses the tools and experience to make the process easier.

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Tonata provides data and reports to the HIV response. Everything that Tonata reports on comes directly from PLHIV and only from them. This means that the people making decisions can hear the voice of PLHIV and integrate those opinions into their programmes and initiatives.

Conclusion DON’T BE ALONE! Living with HIV is enough of a challenge, there is no need to go through it alone. PLHIV are the best people to help other PLHIV. You can improve your own life, the lives of those around you and, most importantly, be part of the work to make things better for those living with HIV and avoid the consequences of the HIV epidemic. Support groups are being recognised as one of the most important players in the HIV response. You can get help from Tonata, from your CACOC and the RACOC. Ask for it.

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Some useful contacts: RACOC: Contact your regional council and ask for the RACOC coordinator. CACOC: Contact your constituency council. Ask for the CACOC coordinator. Support groups forums: There may be a support group forum in your area, again ask Tonata, visit the website (www.tonata.org). Keep an eye out for the Tonata newsletter, there you will find a great deal of information on what is happening. Listen out for radio programmes on both NBC and local radio stations. We wish you all the strength to get involved and start the process of not just managing your own HIV, but improving the lives of many fellow Namibians.

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