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New support camp for HIV-positive teenagers

A new support camp for HIV-positive 13-17 year olds living in the UK, which was held for the first time last summer, was an overwhelmingly positive experience for the children involved, according to an evaluation carried out by Sigma Research, part of the London School of Hygiene & Tropical Medicine.

The camp, which was organised by the Bristol-based Children’s HIV Association (CHIVA), was granted funding from the Elton John AIDS Foundation, Pfizer Pharmaceuticals and Viiv Healthcare. In the late summer of 2010, 79 young people with HIV attended. The aim of the camp was to provide a free, accessible, confidence-building experience for these young people. It offered a safe space in which they had the freedom to be open about what is still a highly stigmatised illness, to find out more about living with HIV, to gain coping strategies, and to make lasting connections with other young people with HIV.

Magda Conway, CHIVA Projects Manager, said: “Some of these young people are so isolated, both geographically and by having HIV. We felt a support camp would provide a safe place where they could come together, meet peers and share their experiences.”

Sigma Research evaluated the camp experience and its impact on the young people who attended. Findings from the surveys they completed before, during and three months following on from camp offered considerable insight into how things had changed for them. Before attending the camp, the young people described the impact of HIV in their lives in overwhelmingly negative terms. They were highly conscious of the secrecy that HIV stigma imposed on them daily, and they were very concerned about what the future would hold. When asked on the final day what they had learned about HIV at camp, more than half said that they had learned more about having safer sex, about their rights, and about how to raise HIV when talking to others.

When asked what they had learned about themselves, most talked about their new-found confidence and the ease with which they found they could talk about HIV in that environment. Once camp was over, young participants said it had been a positive, motivating and esteem-boosting experience. Almost every person followed up three months on had kept in touch with numerous friends that they had made at camp (mainly through social networking sites, mobile phones and instant messaging). In addition, two-thirds of those who were followed up said that they were able to be more open about their HIV with friends who have HIV, with parents and other family members, and with other friends.

Catherine Dodds, the lecturer at Sigma Research who led the evaluation, said:”‘The results of the camp evaluation are absolutely clear. Young people said that at camp they had gained confidence, they learned more about how HIV affects them. They had increased hope for the future, and had made friends with HIV who they expected to keep for the long-term. Evaluations can sometimes give mixed results, but here the benefits are absolutely clear-cut. The overwhelming majority of young people taking part gained significant life skills and support to use them.”

The overwhelming success of camp even took the organisers slightly by surprise, with Ms Conway saying: “In truth, we never realised how powerful it would be with that number of young people, and how much each of them would take away from the experience.”

A few months on, CHIVA followed up with young people’s families and their HIV healthcare providers, and their comments focused on the increased confidence gained by those who had attended the support camp. One healthcare professional said: “They are more engaged in clinic and more eager to learn.” Another mentioned that those who had been to camp together had started to talk to one another in the HIV clinic waiting room, something which had never happened in the past. This provides even more evidence that being at camp has begun to lift the burden of secrecy and shame for these young people with HIV.

Anne Aslett, Executive Director of the Elton John AIDS Foundation, said: “The Foundation has funded a number of camps for young people living with HIV around the world and knew informally how much they were valued by recipients. It's great to have Sigma Research's more rigorous evaluation of this camp and the impact to those involved. The young people who participated in the camp are a fantastic inspiration to others. EJAF is delighted to have supported this work.”

CHIVA is currently seeking funds to run further support camps in the future. For more information on their fundraising efforts, visit: www.chiva.org.uk.

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