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

104 Abstracts 12453-12457

12th World AIDS Conference

HIV infection was getting worse. A good correlation between patients health perception and heir clinical and biological data was observed. Approximately 25% of
the study participants defined people with HIV/AIDS as "very difficult/impossible".
Therapy was defined as very difficult/impossible by 40% IVDU vs 23% of other individuals and by 31% of people with AIDS Vs 25% of others. Negative perception
on treatments was not correlated with several other variables such as gender,
main source of information on HIV infection and antiretroviral therapy knowledge.
Conclusion: Negative perception about medications is more frequent among
IVDU and persons with more advanced disease. Since this perception may interfere with patient compliance specific support strategies should be developed for
these individuals.
S12453 US federal strategies for increasing involvement by
people living with HIV (PLWH) in planning for HIV
services
Angela Powell, J.F.O. O'Neill, J.E.H. Holloway, M.G. Gomez. US Health
Resources & Services Admin 5600 Fishers Lane, Room 7A03, USA
Issue: The Ryan White CARE Act provides Federal funds for HIV care services
(over $1 billion in 1998). The Health Resources and Services Administration
(HRSA) promotes and facilitates the involvement of PLWH in planning activities
for CARE Act-funded HIV care services to ensure that services responsive to
consumer needs.
Project: HRSA involves affected populations in HIV planning to ensure the
relevance of services and foster an active partnership between consumers of services and service providers. HRSA has promoted PLWH involvement in grantee
planning activities including needs assessments, priority setting, and resource
allocation. Methods to enhance PLWH involvement include: policies and guidance
requiring PLWH participation; technical assistance on-site and through special
projects (workshops, training manual, national conference calls). HRSA policy
encourages grantees to facilitate PLWH involvement by providing stipends, funds
for transportation and childcare, and training on effective participation in the process. Many planning bodies have formed consumer caucuses that allow PLWH to
provide input with a collective voice and provide PLWH an opportunity to develop
advocacy skills. New HRSA TA methods in response to emerging issues include
skills development in technical planning topics (e.g. antivirals, managed care);
and facilitation of long-term PLWH participation.
Results: HRSA generated consumer involvement that ensured the participation
of PLWH as equal partners in the health planning process. The empowerment of
PLWH through involvement in planning activities can lead to greater involvement
by PLWH in the provision of HIV services, either in an advisory role, such as a
board member, or as an employee.
Lessons Learned: HRSA efforts to develop an inclusive planning process
have resulted in PLWH playing an active role in the planning of HIV care and
support services funded by the Ryan White CARE Act. The ongoing challenge is
to maintain the level and quality of involvement. Efforts must continue to ensure
that PLWH input is not marginalized and that the valuable experience of PLWH
have acquired as participants is not lost due to burnout.
S12454 The importance of patient counseling and social support
groups in anti-retroviral treatment effectiveness
Nora Silvia Revsin, M. Burgos, A. Vilas. Fundaci6n RED-Resources Studies
Development, Gaspar Campos 1869, Vicente Lopez, Provincia De Buenos
Aires, Argentina
Issues: throughout antiretroviral therapies patients face the following difficulties.
1-a. from the beginning the onset of conflicts within the work and family environment arising from having to make their HIV condition apparent, and the need
to modify their daily routines as per their medication regime; 1-b. throughout its
course problems in communicating their difficulties to their physician (schedules,
eating habits, vague physical unease, etc.), fear of treatment failure as well as
of unsteady medication supply; 1-c. when changing treatment modalities anxiety
and anguish summed up by: Why didn't this therapy work? Was it correctly
prescribed? Will my chances be less?
2-In all cases patients found themselves at a loss in terms of having noone with
whom to voice these dilemmas.
Project:1-Annotation of at least 60 instances of patient and/or their relatives
seeking professional help (counseling, psychological assistance) throughout 2
years' time; 2-coming up with a consistent patient problem identification scheme
as arisen from patient calls; 3-overseeing health teams; 4-training workshops for
health team professionals.
Results: having created a place in which patients and their relatives could
air their own problems and fears allowed for their own acquiescence to begin
and/or continue patient therapies, as evidenced even in cases of where adverse
side-effects arose.
Lesson Learned: The lack of ongoing patient counseling and support groups at
medical centers deprives most of the affected of an invaluable resource towards
treatment effectiveness.

12455 1 Psycho-social reactions and coping strategies of
patients with HIV/AIDS
Reeta Sonawat. 804, Bhaskara, Tifr, Hommi Bhabharoad, Bombay-400005, India
Issue: In the Indian scenario, persons with HIV/AIDS are vulnerable to rejection
and feelings of guilt. Discrimination occurs in housing, jobs, health care and
public assistance, due to both contagion and prejudice. These irrational fears and
negative public responses are confronted daily by patients, families and advocacy
groups. The study's aim was to identify the psycho-social problem faced by the
HIV/AIDS patients and the mechanisms they adapt to cope with the situation.
Project: The simple consisted of 30 persons (23 males & 7 females) with
HIV/AIDS. The people were from different educational and occupational background. Data collection was by interview technique. The interview schedule
consisted of 11 questions based on identification of constructive coping mechanisms and 10 based on identification of destructive coping mechanisms. A set of
15 question, in addition, were directed towards the psycho-social problems.
Results: Most of the patients show constructive coping with positive reinterpretation and growth and an active participation in their health programme. About
40% had accepted the problem, were seeking advice & information regarding
the disease and ventilating their feelings. However, only 2 persons showed all
the 9 identified constructive coping mechanisms. Destructive coping was also
observed. Mental and behavioural disengagement and denial was observed in
many cases. Some continued with their alcohol/tobacco intake. Again, only 1
person exhibited all the 5 identified destructive coping mechanisms.
Lessons Learned: HIV positive men, due to fear of discrimination and ridicule,
lack the ability to articulate their feelings and thoughts and hence are unable to
resolve their crisis.
112456 Information seeking and decision making behavior
among HIV positive persons and their medical staffs in
Japan
Yoji Inoue1, C. Wakabayashi2. 1Japanese AIDS Foundation, Ship, Tokyo, 2-12-9
#302, Chuo, Nakano-Ku, Tokyo; 2 Tokyo University, Ship Tokyo, Japan
Objectives: To study the views of HIV infected persons and their medical careers
in Japan on involvement in decision making and information seeking.
Subjects and Methods: 318 clients who are registered for the SHIP NEWSLETTER (the only newsletter dealing HIV treatment information for HIV positive persons in Japan) mailing subscription received questionnaire sheets by mail to
complete for themselves anonymously. The survey was conducted from June to
July 1997 and 171 clients responded (53.8%) by mail. Out of respondents, 49
(28.7%) were HIV positive, 52 (30.4%) were staffs of HIV medical teams.
Results: Compared to HIV positive persons majority of staffs had higher preference for choosing decision making related categories of 'by doctor rather than by
patient' and 'by patient rather than by doctor' instead of 'by doctor alone' and 'by
patient alone'. HIV medical staffs underestimate symptomatic patients' self-desire
for decision making for going to hospital. In spite of HIV positive persons' high
preference for decision making in case of having abnormal vital sign, abnormal lab
date tend to have lower influence on it. Approximately 40% of both HIV positive
persons and HIV medical staffs have strong autonomy for decision making of
over-the-counter medication.
Conclusion: HIV positive persons and HIV medical staffs in Japan subscribing
SHIP Newsletter reported high level (more than 80%) of desire for information
seeking. Patients' preference for involvement in their treatment decision was also
high, which was conjectured lower by medical staffs. HIV medical staffs might
wish to make joint decisions for medical issues with HIV positive persons.
12457 1 Listening to a patient's perspective may provide more
than a human face
Ruth Mendez, Salud Zaldivar. Research Institute for Tropical Medicine (RITM)
Alabang Muntinlupa City, Philippines
Issue: Why do Conference' Symposia with persons living with AIDS (PLWAs) as
panelists constantly get jam packed with participants? When I raised this question
during the 4th Int'l Conference on AIDS in ASIA and the Pacific (ICAAP), my
friend suggested that I find the answers as participants have their objectives and
expectations as to the choice of sessions they go to.
Project: Purposive sampling of some delegates (18) was achieved by conducting candid interviews, particularly with the ones who were seated early and
those who were inching their way to get in at 3 separate 'all seats taken' meeting
rooms.
Results: Upon analysis of their verbatim responses, the merging core category
was 'curiosity satisfaction' that branched out under 3 major sub-categories: "To
get first hand information on HIV/AIDS related issues which directly concern
the end-users; personal appearance of PLWAs can demystify many misconceptions surrounding HIV/AIDS; and an inter-active communication with PLWAs is
interesting and a rich opportunity for networking.
Lessons Learned: This survey showed that 'curiosity satisfaction' was the

main reason for the question raised. This study would have been more convincing if demographic data and exit interviews were readily available. It is widely
recognized that PLWAs are valuable colleagues in any HIV/AIDS 'democratically'
oriented discussions, as was demonstrated in the 4th ICAAP with the drawing
forth of 'The Manila Manifesto '97'.