By The People

Community support groups make all the difference to the living

“I am still here and I am still my son’s mother. Why does everyone want me to start dying and leave him alone?” – An HIV-positive Khayelitsha mother.

For the past two decades, we have been inundated with the message that HIV and AIDS must be viewed as a swift, painful road to the grave. This myth has formed the underlying foundation to most community responses to the epidemic.

Most volunteer, community-based, and NGO projects aim at prevention, and education and awareness around prevention, on the one hand; and then at medical care for seriously ill people, and help for their suffering families and orphans, on the other. There is an underlying assumption that “support” means carrying the individual, the family, and the community through the terrible illness “until the person dies”, and providing help for the people who remain.

This attitude is widespread. One South African research project into “community support programmes” in 1999 described the groups it looked at as programmes . . .”that address any aspect of the ‘continuum of care and support’, from the time of infection through to death and the impact on survivors.”

In other words, we have not developed enough community support groups to help people to live with this epidemic. And more and more, this is exactly what we need to do.

The changing picture

Medicine for HIV is available today. Now, most people who have the HIV virus will continue to live for a long time – for years, for decades even, leading full and eventful lives. With medicines and preventative measures, people living with HIV can work, continue and develop relationships, and have healthy children.

This is a reality even though there is still no “cure” for the HIV virus – it is still “life-threatening”. But now it should not be assumed, that “AIDS kills”: rather, with appropriate care and treatment, having HIV should be defined as a “manageable health condition”.

The question is how we can ensure people living with HIV become (or rather continue to be) fully and effectively part of our community and society, rather than as threats to “the rest” in spreading the virus. Making this happen becomes the key role of community support groups.

In areas of the world where treatment is now normal practice (including in the US, Europe, Australia, and Brazil) community support groups that help people to live with HIV are widespread. Often, they are formally linked to medical services, and promoted by the medical services. Ensuring that people with a health condition function as effective members of the community becomes a major part of “treatment”.

In those few places in South Africa where people have found ways to survive with the virus, spontaneous support groups have also emerged. Mostly these developed as “experimental” medicine became available in pilot projects – for example, at the Khayalitsha site B project; in groups around Chris Hani/Bara in Johannesburg, with mothers experienced with mother-to-child treatments; and amongst people in activist groups such as TAC and NAPWA.

Often these support groups begin with people coming together to pool solutions they have found that worked for them, in whatever unusual situation they are in; but then they find that there are others who are in the same situation, and have found similar solutions.

An exception is the community support group in Tembisa, which was instead formed almost a decade ago to support school friends who developed HIV and AIDS. The group – many of whom were not HIV-positive themselves – organised to provide physical and social support (anti-retrovirals were not then available), to raise money to help families; to fight the effect of stigma and isolation on their friends; and to raise awareness and promote education about HIV amongst the Tembisa community.

The issues around medical care and treatment

The need for community groups does not disappear as more and better treatment becomes available. As people with HIV can have relatively “normal” lives, in length and in quality of life, the functions of the community support group often become MORE important, not less.

Community support groups for people living with HIV play a major role in helping people access and maintain treatment. Structured community groups can encourage people to find out their HIV status, to get into treatment programmes and establish routines, to attend on-going check-ups. Community support can help people take drugs, making sure people take their pills correctly, and that the medicines supply is steady and uninterrupted. Community groups can help a person to get transport for check-ups and appointments (especially where treatment centres are far from the person’s home); and assist if there should be an emergency need for medical care. Established routines fit into the regular functions of the community: thus, for instance, members of the family and workmates can ensure a person takes their medicines after meals, or ensure that women who need to bottle-feed babies are provided with the resources to do this.

The support group should find out the medical, treatment, and care choices available for people within their community, and the implications of these; they can help find other alternatives where the available resources are not adequate. This includes mobilising people in the community to ensure that maintenance, treatment, and care procedures are in place, and accessible to those who need them.

Psychological and social support: fighting stigma and isolation

Apart from practical assistance, community support groups are critically important in enabling a well person with HIV and AIDS to overcome the difficulties of stigma, discrimination, and isolation.

In South African society, stigma and guilt is loaded onto people living with HIV – we are told, in many subtle and not-at-all subtle ways, that people get this sexual disease from immoral and bad behaviour, or sometimes bad choices. The approach is built into even well-meaning programmes like the ABC campaign – which implies that becoming positive was probably your (bad) choice, or at best your failure to make a good choice. Even where a person knows they themselves are not “guilty” of contracting HIV, they still have to wonder how another person – husband or wife, mother, friend – may react to the news.

One HIV counsellor in Johannesburg commented that the main source of worry and pain she encountered in her patients came when the person could not discuss their condition with their partners and loved ones. Often, they feared the partner or parent or family member would reject them, at the point when they most needed support. Often, this worry and pain of isolation could be as cruel to the person as the virus itself – dragging down hopes, dreams, and happiness even of people who physically showed no signs of the illness. In itself, it leads to despair, and hastens ill health.

A community support group tells the positive person, through very real, every day contact, that there are people around him or her who will not cast them off because of their status: indeed, that they have the support, and approval, of people in their community.

A community support group can also help HIV positive people relate to other people – whether family, children, parents, spouses, friends, neighbours, fellow workers, or even bosses. When a person with HIV meets with discrimination or stigma, when they find themselves isolated or mistreated, the group can show that our community does not accept this kind of behaviour. A man who beats his wife, and expels her from the house when he finds she is HIV positive, might be confronted by open disapproval for such behaviour – and might modify it as a result.

Nelson Mandela describes going to a village, to see the orphaned children of a couple who died of AIDS: the villagers threw food and supplies to them, because they did not want to have any physical contact with them. It should not require the intervention of Mandela to question this kind of behaviour. It is indeed the duty of all of us, as members of a community, to make it clear that is not acceptable.

Different kinds of community support groups

In places where they are successful, there are a range of different kinds of community support groups, with somewhat different structures and purposes.

Often a group starts with people who are already working or living together – as a church, in a school, as workplace comrades, as neighbours and family. At times, the doctors supplying medicine suggest – or require – that their patients form a support group, to share their experiences of treatment.

The criteria for participation in a support group may vary greatly. Some support groups take only people who are positive themselves; others involve supporters, helpers, and family. Some groups work only with people from their own local community. Still others focus on particular kinds of problems around living with HIV – such as people who have similar complications (for instance, people with TB as an opportunist disease); or positive mothers having children; or people taking a particular medical regime.

Some groups remain “closed” to outsiders, keeping to a regular and trusted membership. Others may encourage new people to join – although this is often difficult, with the amount of stigma attached to HIV in our society.

How you can get involved: finding or forming a group

With any group, a few people need to take the first steps to break down barriers built by fear and blame. Often, first steps must be done carefully, almost secretly, sounding out other people’s reactions. With any HIV/AIDS community work, there is likely to be fear and uncertainty about whether participating in a group will expose positive people who may not have informed their relatives, friends, or bosses. On the other hand, people need to realise that most friends, loved ones, and workmates can only help if they know what the problem is – and very often, most of them do want to help, if they know how.

Promoting awareness and understanding

Individual members of the group – whether positive or negative- should know and accept their own status. They should set an example of being tested; where possible, they should openly report on the results. And community support group members – whether positive or negative- must have the knowledge, and take on the responsibility, to ensure that they do not spread the disease. This means taking measures for safer sex, always; showing their belief and commitment to these measures to protect and educate people at all levels of the society.

But perhaps the most important part played by the community support group is that the group shows that we as a community can give a collective, shared response to this epidemic. We do not abandon people who are infected, either from moral condemnation or from sheer lack of material resources to help. We do not allow stigma or despair to rip our society apart. We can make the difference for individuals; and we can meet this challenge together.