Lushomo was started as a response to the need for support specifically for young people living with HIV. Support groups for HIV positive adults had become relatively widespread in Zambia by 2004. They were well-attended, had established models of good practise, and the benefits that members got from them readily acknowledged.
For young people, however, the situation was quite different. There were no equivalent groups where they could go and mix with people of their own age. 
Many were confused, isolated and unable to speak to their peers about HIV. They could go along to adult support groups, but were often too shy, or lacking in confidence, to make much of a contribution. Young people’s experience of HIV, the questions it led them to ask, their ARVs (Anti-Retroviral drugs), and the problems they faced, were also quite distinct from those of their parents’ generation.
The Zambian government’s roll-out of free ARVs had made a big impact on the lives of adults living with HIV, but had made little progress in reaching young people and children. It was estimated by the Ministry of Health that very few young people in Zambia had joined the government’s ART (Anti-Retroviral Treatment) programme, representing just a tiny fraction of HIV positive young people. It became increasingly clear there was a need for more services targeting young PLHAs, offering them an opportunity to share experiences, as well as receive advice and support around living positively and using ART services.
Some of the specific areas where information and support for children was lacking included treatment access and advice, psycho-social support, continuing in education, being the young head of a household, caring for siblings, parents, and other family members. Lushomo was created to start filling this gap.
What were the group’s original aims?
Lushomo’s original funding proposal (which ZNAN, the Zambian National Aids Network, rejected in 2006), stated the overall goals of the group to be to:
- Create a space for HIV positive youths in Lusaka, especially girls and young women, to meet weekly and share information about positive living and HIV advocacy;
- Empower young PLHAs (People Living with HIV/Aids) in developing a voice to articulate and share their individual experiences of HIV within their communities and through a regular newsletter.
Its specific objectives were to:
- Increase support for young people living with HIV between the ages of 11-18 years;
- Increase the capacity of the group members to live positively and act as strong role models by developing a better understanding of HIV through the support group;
- Encourage more young PLHAs to use ART and other supporting health services in Lusaka;
- Develop and distribute a new youth-friendly newsletter for young PLHAs;
- Increase the capacity of young PLHAs to campaign and advocate for their own rights and the rights of others.
The kind of activities envisaged to address these objectives were such as:
- Discussions, debates, and role-play;
- Meetings with guest speakers from related organisations, or with relevant personal experience;
- Drama skills building;
- Sporting activities;
- A newsletter for young PLHAs & technical assistance to train in writing;
- The development of ‘Hero Books,’ and other artistic/expressive methods, to encourage members to share life experiences through creative outlets.
Not all of these goals and activities have been realised to date. But we’re making good progress towards a lot of them, and are continuing to develop future plans.
What do the group members get out of these sorts of activities?
The results of the group's discussions are not always immediately positive, but hopefully even the emotions and upset that can come from conversations and activities are part of a process of education and moving forward.
For example, some children have been angry with their parents and blamed them for the infection. One girl only found out about her status during one of the group meetings. She had joined the group from a local clinic where she collected her medication, and her mother had always explained the medicine was for some sort of condition - but never told her it was HIV. When the girl asked her mother why she'd never said the condition was HIV, her mother said she'd been too young to understand the virus. Having been angry, she said that from the other children in the group she'd found hope and courage, and this made accepting her status easier. Despite, or perhaps because of, the initial shock, she is now one of the group's most active members.
Following another discussion about treatment and nutrition, one of the younger boys stopped taking his ARVs because he thought that if he was eating good, healthy food he didn't need the medicine. The boy's father was obviously alarmed, and called one of the group's facilitators to complain they'd been giving out incorrect information with dangerous consequences. The group's facilitators and coordinator then met with the boy's father to explain what had happened, and a future session was planned to focus on adherence - still a major problem throughout Zambia. Despite lots of efforts by local and international organisations, 
using educational materials such as the Postive Living Handbook, myths and misinformation about ARVs remain a serious obstacle to the success of HIV treatment - not to mention making sure the drugs reach the people who need them, and they are able to take them correctly every day.
At the session on adherence, an aunt of one of the group members came to talk about her work with an NGO researching and promoting consistent ARV treatment. As an older person living a healthy, full life with HIV, the children were both informed and inspired. They could literally see the benefits of adhering to their medicine, and had a role model for living positively. 
A flood of questions came up in this session, not just about adherence, nutrition, and food, but also sexual health, stigma and disclosure.
This just shows that despite the huge leaps in understanding of HIV in Zambia, there is still much work to be done, not least with young people, who are less certain about how treatments work, and more likely to believe 'stories' people tell them about what they should or shouldn't do. Addressing these sorts of issues was the reason for starting Lushomo in the first place, and they continue to be relevant today.
[More detailed versions of some of this information was originally published in the group’s newsletter in February 2008.]
