Abstract Book Vol. 2 [International Conference on AIDS (14th: 2002: Barcelona, Spain)]

XIV International AIDS Conference

Abstracts WePeF6847-WePeF6850 291

WePeF6847 Priorities in social support to PLWHA in Russia
N. Panchenko 1, N. Chaika2. 1 Inter-Regional Association of PLWHA,
Mirgorodskaya Street 3/4, St.Petersburg, 193167, Russian Federation; 2Pasteur
Institute, St Petersburg, Russian Federation
Issues: The governmental support to people living with HIV/AIDS (PLWHA) in the
Russian Federation as well as in most other republics of the former Soviet Union
is very weak. It was necessary to study the most important needs of PLWHA to
increase the effectiveness of such support from regional and local NGOs and
communities.
Description: Special study was done by Inter-Regional Association of PLWHA
among members of several local associations of PLWHA in North-Western Russia. Members of association visited hospitals and clinics for HIV/AIDS patients as
well as local AIDS centres, organized and attended special conferences, meetings and seminars. Regional and local mass media were also involved to inform
better different risk groups on association activity and to get personal contacts
with representatives of local communities. Special questionnaire was used in sociological studies for collection of opinions and proposals from PLWHA and representatives of population groups with high risk of HIV infection.
Lesons learned: The high-level psychological and emotional support had the
greatest importance for newly disclosed PLWHA as well as the possibility for
meetings with other HIV infected persons. The community development in provincial centres of North-Western Russia and in other regions became a significant
part of Association activity. The great majority of HIV/AIDS patients needed also
financial and humanitarian support, highly professional help in search of new job
or acquiring new profession, real support in accommodation and human rights
protection. Better access to qualified medical aid and care is also very important
for newly diagnosed PLWHA.
Recomendations: To increase the effectiveness of social and psychological support it should be oriented to high risk groups and to PLWHA communities. All
work should be done together with NGOs and self-help groups. Coordination of
this activity with local administration and public health authorities is also crucial.
Presenting author: Nikolai Panchenko, Mirgorodskaya Street 3/4, St.Petersburg,
193167, Russian Federation, Tel.: [phone], Fax: [phone], Email: panchenko.n@ mail.ru
WePeF6848 Benefits of disclosing the diagnosis for the
treatment of children with HIV/AIDS
J.M. Mattos, M.H.L. Mendona, N.P.M. Rubini. Gaffrde and Guinle University
Hospital - Rio de Janeiro University, Rua Marquesa de Santos, 42/306 -
Laranjeiras, Rio de Janeiro - RJ., 22221-080, Brazil
Issue: Concerns of disclosing the diagnostic has been more relevant in treating
children with HIV/AIDS, since the survival of pediatric patients is increasing and
many of them are becoming adolescents. Most parents and health care workers
have trouble in dealing with this, with their own culpability and fears of discrimination. Reluctance in disclosing the diagnosis implies in creating in children much
fantasizing, anxiety and suspicion about their family and the health care team.
Description: In Psychological Support to Children and Adolescents With
HIV/AIDS and Their Family, the disclosure of the diagnosis is one of the most
focused topic. Disclosure is a process, and should be initiated early and gradually, accompanying children's questions, as well as their level of cognitive and
emotional development, and their ability of understanding. To disclose the diagnosis adequately, the children's families receive support to demystify beliefs about
the disease, and feel more prepared to initiate the process. The work is done in
groups and is integrated with a multidisciplinary team, making possible discussion
and exchange of information among family members, in addition of access to direct information about the disease. Both families and children receive emotional
support during all the process' steps.
Lessons learned: The benefits brought about by disclosing are: the family members feel relieved, and may strengthen affective bounds with the child; energy
used to keep the secret is redirected to create more abilities to face the disease,
leading to a better adherence. Children feel more informed and responsible for
their own treatment and the medical team may talk freely with them about the
disease.
Recommendation: To promote creation of multidisciplinary working groups to
discuss and elaborate projects of psychological support to children, adolescents,
family members and health care workers aiming at the disclosure in all facilities
caring for children and adolescents.
Presenting author: Juliana Martins de Mattos, Rua Marquesa de Santos, 42/306
- Laranjeiras, Rio de Janeiro - RJ., 22221-080, Brazil, Tel.: [phone],
Fax: [phone], E-mail: [email protected]
WePeF6849 HIV and adolescence: problems related to HIV and
disclosure

G. Bartoli, A. Mundo, C. Novello, E. Ruga, S. Oletto, O. Rampon, R. D'Elia,
C. Giaquinto. Department of Paediatric, Servizio Patologia Infettiva Pediatrica,
Dipartimento di Pediatria, Via Giustiniani 3, 35128 Padova, Italy
Issues: Most children born to HIV positive mothers are becoming adolescents
with receiving adequate family support and without their diagnosis clearly disclosed. This poses great risks due to low adherence and engagement in risk
behaviours.

In order to analyse problems related to adolescence and their relationship
with HIV disclosure we studied 26 HIV infected adolescents (11-19 years of
age)followed at the Department of Paediatrics of Padova, Italy. Information were
collected through:
1. Case studies to identify the most common patterns of HIV disclosure (considering age, familiar and school situation, health status, psychological development)
2. Interviews with a sample of young people and families to get further and detailed information on their experience about HIV disclosure.
Lessons learned: Ten adolescents live with a single parent: eight are in extended
families where there is no an adequate family support and a lack of communication inside the family. Three patterns of HIV disclosure were identified: Partial
(without knowing the "name")(N=12), Fully (N= 11), Deceptive (alternative explanation) (N=3). Fully disclosure is mainly experienced at 16 years old (average
age). Many adolescents experienced socialisation problems and learning difficulties at school which often lead to school abandonment and to other depressive
experiences. Differences once receiving a fully information are related to family support, psychological development and on communication inside the family,
particularly on illness and emotional contents.
Reccomendations Only eleven adolescents are fully aware of their health status.
Very few of them followed a step by step disclosure process. Many of them lacks
family and social support which could be helpful for their development and particularly for HIV disclosure. Almost all our adolescents have difficulties in planning
for the future and specific intervention to face HIV disclosure whilst growing up
are needed.
Presenting author: Gloriana Bartoli, Servizio Patologia Infettiva Pediatrica,
Dipartimento di Pediatria, Via Giustiniani 3, 35128 Padova, Italy, Tel.:
[phone], Fax: [phone], E-mail: gloriana99 @ libero.it
WePeF6850 Projective drawings as a tool to understand the
mental health status of children living with
HIV/AIDS
M.A.S. Costa, N.F.M. Duarte, C. Pimentel, R. Lacerda. Santos DST/AIDS
Program, Rua Paraguagi 42, Boqueirdo - Santos, S~o Paulo, CEP 11050-020,
Brazil
Issues: As effective treatments prolong the life expectancy of children living with
HIV/AIDS, psychological support becomes increasingly important to insure their
adherence to treatment and to improve their quality of life in the setting of serious
chronic disease. Children are often not able to express their feelings in words, and
additional tools are needed by mental health professionals and other caregivers
to evaluate their wellbeing.
Description: We asked 24 children with HIV/AIDS, aged 5 to 17, to draw a human figure, a house, a tree, their family, and a self-portrait. When we applied
techniques of projective analysis to these drawings, they showed numerous signs
of depression, insecurity, confusion, and lack of support. For example, most of the
drawings of trees, one of the most basic forms, showed signs of serious illness.
Interestingly, this was equally true of the drawings of children who did and didn't
know their HIV diagnosis. Despite being offered colors, most children chose to
draw in monotones. The self-portraits showed low self-esteem and problems of
self-image, with physical manifestations of disease and drug side effects figuring
prominently. For example, the drawing below by a 15-year-old shows her torso as
an X-ray image and her face marked by lipodystrophy.

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Lessons learned: When combined with traditional means of mental health diagnosis and communication, projective drawing techniques can help give additional
clues to the mental and emotional wellbeing of children living with AIDS. Much of
what can be learned about these children from examining their drawings is quite
obvious and does not require complicated skills for analysis.
Recommendations: Mental health professionals and other caregivers of children
living with AIDS should consider examining the drawings they make. Further research is needed to evaluate how this technique can be most usefully employed.
Presenting author: Regina Lacerda, Rua Paragua0 342, Boqueir5o - Santos, So Paulo, CEP 11050-020, Brazil, Tel.: [phone], Fax: +55 13
32243947, E-mail: [email protected]