Bridging the Gap: Conference Record [Abstract book, International Conference on AIDS (12th: 1998: Geneva, Switzerland)]

12th World AIDS Conference

Abstracts 24261-24265 491

Results: While respondents reveal a lot about the processes of starting and
sustaining new therapies the findings do not concentrate on the mechanics of
drug taking (compliance, side effects etc). Instead, it begins to describe the impact clinical success has on individual lives. Although the therapies can affect
fundamental life changes, they can cause substantial anxiety, especially when
the long-term efficacy of treatments is unclear. While many individuals continue
a policy of self-preservation or concentrate on the joys of early retirement, others
cannot muster the energy to invest in the future or are simply bewildered by new
possibilities. Hopes for an improved life are tempered by an many obstacles.
These include the effects of: prolonged absence from work; ostracisation from
community, friends and family; and difficulties in forming and sustaining relationships. While the responses of gay men vary substantially there are also significant
differences between them and members of African communities.
Conclusions: Reports on the impact of combination therapies generally fall
into two discreet categories ('miracle' or 'disaster') which represent the extremes
of individual experience. This work begins to describe the diversity of individual
experience and challenges us to begin to consider the gulf between clinical results
and substantially improved quality of life.
24261 Living with HIV/AIDS - A new concept for group
programs
Dieter Riemer1, L.C. Escobar Pinzon2, J. Bock2, M. Hautzinger3. AIDS-Hilfe
Frankfurt a.M.e. V., Friedberger-Anlage 24 D-60316 Frankfurt a.M.;
2Johannes-Gutenberg Universitat, Mainz; 3Eberhard-Karls-Universitat,
Tjbingen, Germany
Issue: A psychological group program to enhance the quality of life for people
with HIV/AIDS and therapeutical experiences are presented.
Project: A group program was developed based on therapeutical experiences
with self-help groups at the AIDS-Hilfe Frankfurt a.M., as well as with scientific findings from Psycho-neuro-immunology, Coping-and Intervention-research.
Improvements on central psychological variables, found to be relevant for the
enhancement of quality of life, are affected by the application of specific psycho-therapeutical interventions. The program is evaluated and broadened within
the parameters of the EUROVIHTA project which is supported by the European
Commission, Section Public Health, DG V/F/2.
The group concept consists of the six following modules: relaxation, group
dynamics, behavioral interventions, cognitive interventions, development of resources and management of crisis. These modules allow the integration of
evaluated interventions of different therapeutical orientations. The interventions
are chosen according to the needs of each group. The agenda is made up
of 16 sessions of two hours length. Six to eight persons can take part. Every
session has the same formal structure: (1) relaxation therapy, (2) theme oriented
intervention, (3) discussion of current problems and events.
Results: The participants reported enhanced quality of life and improved coping skills. Complicance especially to anti-retroviral drug therapy is facilitated.
Participants can profit especially from aim- and problem-solving oriented therapeutical approaches, as well as from theme-centered task working. The setting
of an agenda forseeing specific themes for each session ensures the satisfaction
of the changing needs of the participants and helps them to reach their aims set
within the group.
Lessons Learned: The program helps the participants to develop coping skills
and handle changes in their daily life. This is achieved through the stimulation
of the self-help potential, and the improvement of communication and relaxation
skills. The implementation of this program in psycho-social services is noteworthy
in ist merits. Therefore it can be considered to be a relevant contribution for
secondary and tertiary prevention
24262 Uncertainty and revival for persons living with AIDS
Dale Brashers, J. Neidig, L.K. Dobbs, J. Russell, L. Cardillo, S. Haas. School of
Journalism & Communication, Ohio State University, Columbus OH 43210, USA
Background: For persons throughout the HIV illness trajectory who currently are
enjoying dramatically improved health, exciting and welcomed physical changes
are accompanied by confusion and uncertainty. Especially for persons who were
diagnosed with AIDS before the introduction of highly effective drugs, the joy
of dramatic health renewal is tempered by new concerns about identity, career,
finances, and social relationships.
Methods: Six focus groups (n = 33) were conducted to interview a purposive
sample of men and women living with HIV infection or AIDS. As part of a larger
study of uncertainty in HIV illness, iprticipants with an AIDS diagnosis (n = 21)
described their uncertainty accompanying renewed health and a return to the joys
and problems of continued life.
Results: Participants described physical renewal ("revival") as an unexpected
new stressor forcing them to renegotiate (a) feelings of hope and future orientation, (b) social roles and identities, (c) interpersonal relations, and (d) the
quality of their lives. Uncertain long-term efficacy of medications and restoration
of immune function, possible new opportunistic infections, and the potential long
term side effects all contribute to the level of uncertainty about the future. For
many, acceptance of a dying role had led to actual and symbolic losses. Upon
revival, major pressures were reported because of the perceived need to return
to work, to discontinue disability, and to pay for drugs. Reestablishing social and
work relationships led to fears of new stigmatizing reactions. Concerns about
side effects of medications, unforeseen opportunistic illnesses, and living with a
chronic disease all were seen as potential impediments to normal life quality.

Conclusions: Individuals need to know that life on the new drug cocktails is not
the same as life as an uninfected individual - there are stressors associated with
side effects of medications, unknown long-term efficacy anti safety of drugs, and
the financial consequences of long-term reliance on the medications. Prevention
and education messages should reinforce to target audiences that life with an
HIV infection and antiviral medications is complicated and uncertain.
124263 From survival expectancy to planning a future: Adopting
the identity of a chronically ill person
Jorma Koskinen. Portimopolku, Helsinki, Finland
Issue: Due to rapidly developing medication PWHIV are slowly forced to accept
the idea of being chronically ill. This sometimes reluctant change can cause
unexpected problems.
Project: Experiences gathered in volunteer counselling and telephone helpline
work in Finland show that having suddenly to make long term plans can confuse
one's life in many ways. Areas most susceptible to disturbance are 1. work &
daily routines, 2. socioeconomical coping, 3. human relationships & sexuality,
4. mental balance and 5. physical health. It is beneficial for coping to learn to
understand that this change may affect each area differently and not necessarily
in the way expected.
Results: The new triple and quadruple combination therapies have forced
PWHIV to radically reorientate their ways of thinking about life and living. A new
aspect has entered: the future. This entry of a new time dimension almost always
brings with it another frightening thing: hope. This may result in a feeling of
helplessness and confusion.
Lessons Learned: Adapting oneself gradually to the idea of being chronically
ill instead of having a disease leading rapidly to death can profoundly shake the
roots of one's personality. The result, instead of simply being a cry of joy or a
sigh of relief, can as often be anxiety, increased insecurity and fear. A need for
counselling and therapy similar to first being diagnosed with HIV may arise.
242641 Life transformations of African-American HIV-positive
women
Mildred Williamson, M. Cohen, R. Sherer. Women & Children HIV Program Cook
County Hospital 1900 W Polk, Chicago, IL, USA
Issue: New HIV infections are rising fastest among women in the United States
and African American women continue to comprise the majority of the cases. Yet,
African American women's voices are not well represented in the HIV literature,
nor do they serve in significant numbers within the HIV/AIDS policymaking or
legislative arena, where health care delivery, HIV prevention and research ideas
and methods are decided.
Project: Qualitative, in depth interviews were conducted with eighteen African
American HIV-positive women at Cook County Hospital in Chicago, Illinois to learn
what they think about the quality of their lives retrospectively as well as currently;
to learn how their perceptions may or may not have changed since becoming
HIV-positive; and to obtain insight from them to inform HIV policymaking and
strategies regarding women and families in the United States.
Results: Preliminary analysis revealed that the majority, (16 of 18) participants
interviewed reported that the quality of their lives had improved since learning their
HIV status. The reasoning for the improved assessment is correlated to having
overcome other adversities in their lives that occurred before they learned their
HIV status. Conceptually, overcoming adversity is considered a life transforming
experience in the project design. The most frequently reported adversities over
which they triumphed were: recovery from drug/alcohol addiction; surviving childhood sexual abuse; reuniting with families from which they once were estranged;
ending abusive relationships; and, gaining or regaining spiritual expression. Some
participants reported they had triumphed over more than one adversity.
Lessons Learned: In many ways, the complex social conditions under which
most of these participants lived, in part, served as a host for HIV infection to
emerge. Meaningful HIV prevention and health care policies must address the
conditions of social inequality in order to be effective in reducing new infections
and prolonging life for those infected. Yet, the strength, resiliency and optimism
displayed by most of the participants, demonstrated that we need never give up
on the human potential for social progress.
|24265 Communication, the key to understand the world of HIV
positive child
Anca Nicolae, E. Lazarescu Luciana. Malcoci 24 BI. 39 Sc. Bap. 29 Sector 5,
Romanian Angel Appeal, Bucharest, Romania
Research Motivation: This research is motivated by the following three factors:
1. The increasing number of HIV positive children in Romania over the last years.
2. The impact of the disease on the social environment this children belong to. 3.
The lack of up-to-date studies in the field that would be adapted to the particular
realities of Romania during the '90-ies.

Objective: The understanding of HIV positive children interior world towards
an optimal integration of them within the family and social environment as well as
for maintaining a satisfactory level of life.
Hypothesis: 1. The awareness of sickness by the parents determines a change
of family psycho-affective climate. 2. The more the child is treated more adequately in response to his age needs and in as natural way as possible the greater
his chances for a normal grow-up.