HIV Association (CHIVA) arranged its first large-scale summer camp for young
people living with HIV in August. Seventy-nine 13-
to 17-year-olds were given the opportunity to meet others living with HIV and learn
about the virus. The participants travelled from across the UK to the venue, a private school in Sussex.
The aim of
the camp was to tackle the isolation many young people living with HIV face, by
bringing a big group of them together so they could meet lots of others facing the
Conway, projects manager at CHIVA, was camp manager. She
explains that smaller-scale CHIVA residentials of up to 20 young people had
inspired her to set up the summer camp.
With around 500 teenagers living
with HIV in the UK, CHIVA felt it was important to have a large-scale
residential event, says Magda, because “If you feel like you are the only
teenager in England living with HIV, what is more powerful than being in a room
with 80 others?”
was made possible due to the time and efforts of volunteers. This included
eight camp leaders, who were all HIV-positive, and around 30 key workers, both
positive and negative. These 30 were chosen from about 100 applicants. The
recruitment process was heavily reliant on the general public. Their job was to
support the young people on camp.
Jill Hellings, a
volunteer at the camp, says: “Peer support is one of the most,
if not the most, important type of
service that young people living with HIV can access.”
Ely, whose role was to recruit and organise the key workers, recognised the risks
involved in selecting those who may not have much experience for such an
important role. She describes the make-up of the group as “fairly balanced: it
was important that we had a mixed bag,” though they did not have as many
volunteers from black and minority ethnic groups as she would have liked.
described them as “enthusiastic and motivated”. Magda commented, “For all
the volunteers the message is a very big ‘thank you’.”
adults at the camp were open about their HIV-positive status. Organisers felt it
was important to have adults there with a range of backgrounds and experience.
Although Amanda recognised there are parallels in people’s experiences, as
organisers, CHIVA did not wish to “prescribe a kind of model of what it’s like
being an adult living with HIV”.
people were essential, she says, but it was beneficial that some volunteers
were facing the issue of HIV for the first time. Their encounter with young
people with the virus not only enabled them to take their learning and
understanding into the wider community but to increase others’ understanding not
only of what it’s like to live with HIV but also what it’s like to encounter
a camp leader, noted that volunteers “were excited to be there, but were in
different places with how they related to the HIV world” and was struck by how
many had “incorrect or insufficient knowledge” of HIV. Max, another camp
leader, says most key workers were “fantastic. But for some, their engagement
was not as much as it should be – disappointing, given how special the
volunteer who works in the HIV sector, advises that those considering
volunteering for a similar residential in the future should read up
about HIV on reputable websites before they go. “Don't think that you need to
try to answer questions that you really don’t know the answers to. Use the
skills of the other volunteers around you.”
that next year they plan to have a structure to help the more HIV-experienced volunteers
to guide those with less information.
issue that caused a lot of debate was confidentiality. The camp was organised
by CHIVA but participants, volunteers and camp leaders alike were encouraged to
refer to it under a different name and staff from the venue were not made aware
of the status of participants.
safeguards were designed to ensure safety, but people worried whether not being
able to mention CHIVA sent contradictory messages. Would participants feel
comfortable with their status if they were not able to hint at it publicly?
commented that this was a “solution to a problem we really grappled with”. All
organisers wanted the young people to enter a space free from HIV prejudice to
enable them to feel more comfortable with their peers. Amanda says that “it’s
not for us to decide to disclose people’s status” and that it was important to respect
the rights of the participants.
not all that they are. HIV is not everything,” she says.
Magda says: “It’s difficult to not over-protect
this group of young people. Revealing their diagnosis could have major negative
impacts on their lives, so we strived to do everything we could for this not to
Next year, though, she aims to use different
facilities and offer the venue’s staff training on HIV “so we can have a truly
Finding a location had proven difficult. Four schools cancelled
their bookings when the CHIVA organisers tried to negotiate the level of
confidentiality that they wanted. “Some simply said no to the camp once they
found out that it was for people with HIV. Others said they wanted us there,
but only if every single member of staff was told the young people had HIV.
“It was pretty soul-destroying. But it affirms why I do my job.”
educational and creative workshops took place over the four days. These covered
a range of subjects from explaining HIV-positive people’s legal rights to
participant, however, commented that she wanted more activities and fewer HIV-focused
workshops: “I knew why I was there,” she explains. But the need for workshops and
education was affirmed when it was discovered that a participant, living in London, was not aware
that there were support groups in her city.
a short four days,” says Madeline. “I can only hope for another camp like this.
All the camp leaders, volunteers and participants took away a truly amazing
Angela, a camp leader, says: “Participants were free to
be who they were - without feeling worried or wary about taking their
medication or talking about their sexual health and inner feelings.”
She adds: “After the evening events it would be quite a
struggle to get the young people to go to bed as they were enjoying each
other’s company.” Over the three nights volunteers were reminded that the young
people were just like any other teenagers: they wanted to stay up past their
curfew, formed summer romances and occasionally bickered amongst themselves and
challenged the volunteers.
The last hours of
the summer camp involved a closing ceremony. Everyone had the opportunity to
express what they had learned and what they would take away.
disagreements between participants and some differences in opinions, all felt
that the camp was successful. One participant simply said, “I don’t want to
benefits of this camp go beyond those four days. Not only were young people
living with HIV able to form friendships and discover that they were not alone,
but volunteers were able to educate themselves and challenge prejudices. Some
were so moved by their four days that they felt compelled to question their
Volunteer James Johnson said that the camp prompted
massive change in his own life: “Post camp, I left my job, moved to London, and
am starting work with an HIV organisation.”
camp leader and Communications Officer of the CHIVA youth committee, says: “I
realised I could raise HIV awareness without having to disclose my status”. The
summer camp empowered her to run a world AIDS awareness week at her university.
Morpheus, a participant and member of the
CHIVA youth committee, says he’d like to see the camps happen every year. “It
was great that it was bigger than before; you could clearly see you weren’t
alone. We could identify with one another.” He is a little sad that he no
longer felt like a full participant: “People were looking up to me.”
Magda’s message to the
participants? “Take this with you and think about it when things are hard, as
it will give you strength. And keep in touch with each other – these friends
will see you through!”
Find out more about the summer camp and
applying to be a volunteer at: www.chiva.org.uk/summercamp