Hesperian Health Guides

Chapter 15: Community support for children

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HealthWiki > Helping Children Live with HIV > Chapter 15: Community support for children

To support children with HIV, support families

Families living with and affected by HIV often struggle to meet their most basic needs. But with community support, caregivers can provide the food, love, and care children affected by HIV need to grow and develop well.

In almost every chapter of this book you will find stories and examples of how communities can and do support children and families. This chapter gathers some additional ways to draw upon the strength of community to help children.

Who is your community?

a woman signing to a group of people
We need some people who know sign language to help at the children’s ART clinic.

Most people belong to several different kinds of communities.

One might be the people who live near you, or everyone in your village, town, or country. Another community might be members of your church, temple, or mosque.

Communities can be people who work or play together, such as members of a football team or choir, workers at a factory, sex workers, or fruit and vegetable sellers at a market. People who share similar concerns can be a community, for example, pregnant women, families with young children, people with a disability, or people living with HIV or caring for someone with HIV.

HIV support groups

For many people with HIV, their most important community is other people with HIV. When a person finds out he has HIV or that his child has HIV, a support group may be the first place he can find other people with whom to talk openly about HIV. People meet in support groups to talk about their shared worries, needs, and successes, which helps them trust themselves and each other. Being in a support group means you do not face your problems alone.

There is no limit to what a support group can discuss. People help each other express difficult feelings about having HIV, or decide how to tell a child he or someone else in his family has HIV. People in a support group may look out for signs of exhaustion or depression in each other, and discuss ways to relax, make needed changes, or get help. A support group can also be a place to learn how others manage HIV medicines or help children who fight too much or do not talk or play. Or people can just talk, laugh, or feel sad or strong together.

Support groups may also decide to work together to solve a problem — like starting a savings group or an HIV awareness campaign. If you cannot find a support group to join, you can start one. Often, community organizations or health centers will help you start a group or introduce you to an existing one.

a group of people talking
I don’t know what to do about my sister’s girls. They fight about stupid things and will not listen to me. I am so tired I want to shake the baby when he won’t stop crying.
Rosa, you were so good to take those girls in, but it is a big change and so much work!
Can you talk to the girls about how they can help after school with the baby? Maybe if they had important chores they would fight less.
You need some time to put your worries down for a while. Let us think of some ways to help.
Support groups can provide emotional support.

Support groups can promote political action.

Community action for national change

Treatment Action Campaign (TAC) started in 1998 when a small group of activists in Cape Town, South Africa, demanded treatment for people living with HIV. Even though it was common in Europe, the US, and other Western countries, many people in South Africa did not know that medicines could treat HIV and help people live longer.

For many years, TAC organized people in support groups and local organizations through HIV education workshops, marches, protests, and legal actions to make HIV treatment more available, and to fight discrimination against people with HIV. TAC now has 16,000 members. One of TAC’s first successful campaigns was to sue the government of South Africa to provide treatment for women with HIV so their babies would not be born with HIV.

centeralt=a group of people with signs, talking
We can’t wait for other people to fight for us. We have to lead the fight ourselves!

Recently, TAC has begun to focus on the problems in their public health system that make treatment less accessible, such as corruption and poor management. Good guidelines and policies are not enough if the health system is broken.

Each of TAC’s 200 branches across the country have adopted a clinic where members monitor services and provide support. If problems cannot be resolved locally, TAC helps raise them at the district level or higher to find a solution.

a man talking
Anele Yawa Secretary General of TAC
In this part of our struggle, meetings in board rooms in Geneva or New York matter less, and community meetings in Lusikisiki and Khayelitsha matter more and more.

This page was updated:27 Nov 2019