Challenging the future: the changing needs of adolescents growing up with HIV Adriana Gomez Brazil


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Challenging the future the changing needs of
adolescents growing up with HIVAdriana Gomez -
Brazil
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LOOKING TOWARDS THE FUTURE PROJECT

• Motivating adolescents living with HIV/AIDS in
  Brazil to reflect on the future and the past
  using art therapy and literature workshops
• Publishing one issue of Living as a Young Person
  (Saber Viver Jovem) with the direct
  participation of young people disseminating
  these reflections to other young people and to a
  larger audience.

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IMPLEMENTATION PERIOD

• Workshops From March to August/2007
• Production of the Magazine from September to
  December/2007

Partners
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LIVING AS A YOUNG PERSON FIRST ISSUE
BRAZIL/2004
Support National STD/AIDS Program of the
Ministry of Health
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MAIN CHALLENGES PRESENTED BY ADOLESCENTS IN 2004

• PREJUDICE Fear of being excluded by family
  members at school and by friends in general
• DIFFICULTIES WITH ARV TREATMENT The rigorous
  regime for taking the medicines as well as the
  side-effects (lipodystrophy)
• REVEALING THE DIAGNOSIS The majority of
  parents and care-givers are reluctant to reveal
  the diagnosis to children/adolescents generating
  further questions and anxiety

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NUMBER OF NOTIFIED AIDS CASES AGED BETWEEN 13
AND 19 YEARS UP TO JULY/2007

• Males 5384
• Females 4953
• Total 10337
• Source National STD/AIDS Program of the Ministry
  of Health

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THINKING ABOUT THE FUTURE/2007

• A new issue of Living as a Young Person putting
  value on the PROCESS of making and producing the
  magazine
• 24 art and literature workshops for adolescents
  living with HIV/AIDS (vertical and horizontal
  transmission)
• Reflections on the past and expectations for the
  future rights and duties including sexual
  rights and reproductive rights.

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THE WORKSHOPS

• Biweekly in art therapy and literature
• Two groups of adolescents
• In Rio de Janeiro in a hospital which serves
  around 80 adolescents living with HIV/AIDS the
  majority contracted HIV through horizontal
  transmission.
• In Niterói (State of Rio de Janeiro) in an NGO
  which has an agreement with a hospital in the
  city which serves around 50 adolescents the
  majority involving vertical transmission.

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THE WORKSHOPS

• Total workshops held 24 (expected 24)
• Average number of adolescents participating 32
  (Expected 25)

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WORKSHOPS
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Passion fear shame HIV AIDS prejudice and
getting along a hard nut to crack.
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THE VOICE OF ADOLESCENTS IN THE WORKSHOPS

• Were the same as all young people living in the
  world. The only difference is that we have to
  take medicine. The others dont.

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THE VOICE OF YOUNG PEOPLE IN THE WORKSHOPS

• I feel like the drugs explode inside me
• I dont take the drugs near my friends
• Its a real drag to have to watch for exactly
  the right time to take the ARVs
• The side-effects make me afraid. I dont want to
  end up with my body deformed

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THE VOICE OF ADOLESCENTS IN THE WORKSHOPS

• Im afraid to have a boyfriend. I dont want to
  kiss him. Im afraid of infecting him in spite
  of knowing about all the forms of infection
• I never let my mother drink water from the same
  glass as me
• I dream of having a child starting a family. I
  think that Im never going to do it

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VERTICAL TRANSMISSION VS. HORIZONTAL TRANSMISSION
PROFILE

• Vertical transmission
• Tendency by the family and health professionals
  to be overly-protective and to infantilize.
  Theyre HIV victims because they contracted the
  virus without doing anything.
• Id like to go out with my friends but my
  mother never lets me (15-year-old girl)
• Horizontal transmission
• Feeling of loneliness and abandonment both from
  the family and from the health professionals. Are
  seen as the cause of their own problem.
• After I discovered the HIV my family threw me
  out of the house. I went to live with my
  boyfriend (15-year-old girl)

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THE LIVING AS A YOUNG PERSON MAGAZINE Nº 2
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A MAGAZINE FOR YOUNG PEOPLE LIVING WITH HIV/AIDS

• Living as a Young Person Magazine Three
  months of direct work with the young people
• 3 meetings held with all of the young people in
  the project on the subjects to be addressed
• Creation of the Living as a Young Person Gang
  (Galera Saber Viver) made up of four young
  people (editorial board interviews)
• Four focus groups for approval of the layout
  with all of the young people in the project.

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Photos of young people doing interviews and from
the editorial planning meeting
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LIVING AS A YOUNG PERSON MAGAZINE Nº 2

• Came out in December/2007
• Press run in Portuguese 40000 (Brazil
  Hospitals NGOs and community centres) 200000
  people reached.
• Press run in English 1000 copies (distributed
  by the International HIV/AIDS Alliance to their
  international partners).

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EVALUATION BY THE YOUNG PEOPLE

• The meetings were really great. No one judged us
  on our fears and dreams
• We spoke about everything what a drag it is to
  take the drugs every day the prejudice that we
  suffer how much we miss our family and our
  plans for the future
• It was very important for me to get the magazine
  and see that you people exist. I dont feel as
  alone like I did before.
• Hi Living gangI loved the magazine. I
  identified very much with the stories that you
  told in the magazine

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VISIBILITY OF THE LIVING GANG

• Ethical concern on the part of the project as to
• how to deal with this
• The answer came from the young people themselves
  they made a point of appearing in the magazine
  because they believed that their image was key to
  combating prejudice and wanted to celebrate being
  the authors of the magazine. Those outside the
  gang were not identified.
• The organisations involved took the decision to
  provide every support to the young people in the
  event that their coming out was to cause negative
  repercussions in their lives.

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THE LIVING AS A YOUNG PERSON GANG
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LESSONS LEARNED

• Understand that the workshops cannot be merely a
  space for transmission of information but rather
  a space for DEVELOPMENT of such information
  together with the young people
• Ensure the participation of health professionals
  (doctor and psychologist) in order to deal with
  the complex dimensions surrounding living with
  HIV/AIDS

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LESSONS LEARNED

• Invest in the process and gain the confidence of
  the young people so that they may open up
  knowing that their voices will be respected and
  valued
• Promote spaces for interaction between young
  people whose infection is from vertical
  transmission and those from horizontal
  transmission The similarities are greater than
  the differences.

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NEXT STEPS ...

• Partnership with Save the Children to continue
  the workshops for two more years.
• Continuing the workshops and visits by the young
  people to other hospitals in Rio de Janeiro which
  offer treatment to young people living with
  HIV/AIDS.

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WHILE THAT IS HAPPENING ...

• The adolescents expand their network of friends
  throughout the country mainly via the Internet
• Couples are formed amongst the groups. One made
  up of adolescents from Rio and Niterói
• The adolescents are being invited to national
  meetings which deal with the rights of
  adolescents in general and of those living with
  HIV/AIDS
• Several of them are looking for employment sure
  of themselves as good professionals leaving the
  fact of them being HIV positive in the
  background.

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• Weve only taken one step. Various spaces like
  this one need to be opened up and the voice and
  will of these young people should always be
  prioritized. In the end they know like no one
  else does the importance of fighting for the
  pleasure of living

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Thank you adriana.gomez_at_terra.com.br