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

12th World AIDS Conference

Abstracts 42229-42233 819

HIV-related illness was cerebral toxoplasmosis or TB (14.3%); wasting (11.4%);
chronic diarrhea (6.8%); candida (5.7%); PCP (4.3%), CMV retinitis (4.3%). Of
patients with HIV-related complaints (weight loss, fatigue, headache, neuropathy),
36.6% had been seen by at least one other doctor before the one who requested
the anti-HIV testing.
Conclusion: Confusion between the concepts of moral and biologic risk, lack
of knowledge of early HIV infection symptoms and epidemic trends, lack of initial
rapport makes diagnosis of HIV infection delayed and messy for these patients.
Homosexual men are more promptly tested and able to search for care than
married women. To improve early diagnosis, general population and physicians
must be informed about the wide variety of non-specific symptoms of early HIV infection and Brazilian epidemic trends towards "empoverishment", "feminization",
"juvenilization", and "decentralization".
42229 Providing HIV/AIDS treatment education to an ethnically
diverse population in a large urban setting
JDaniel Stricker, D. Pieribone, J. Scheuer. Community Research Initiative On
AIDS, New York, USA
Issue: Culturally appropriate treatment education must be provided to people living with HIV/AIDS (PLWAs) who have access to highly active antiretroviral therapy
(HAART) if they are to benefit from recent therapeutic and diagnostic advances.
Emphasizing underserved populations, especially ethnic minorities and women.
Project: The Community Research Initiative on AIDS (CRIA) is a New York
City community-based organization (CBO) which studies new treatments for
HIV-related diseases. In 1997, CRIA launched a bi-lingual treatment education
initiative to educate PLWAs and staff members of CBOs about the basics of
HIV/AIDS, the latest treatment advances, the current standards of HIV care,
the importance of adherence, and the patient/doctor relationship. The program
collaborates with multiple CBOs in all five boroughs of New York City to jointly
provide treatment education. Working with existing CBOs allows CRIA to provide
the education in the neighborhoods where PLWAs already routinely access other
basic social services and medical care and where they feel most comfortable.
This facilitates attendance at the program due to the PLWA's trust of going to a
familiar organization. Methods used to deliver the information in a comprehensive, yet relatively easy to understand format include small group workshops for
interactive learning and individual one-on-one education sessions. Written and
visual materials designed to reach culturally and linguistically diverse populations
are also extensively utilized in the program to reinforce and expand upon the
topics discussed.
Results: HIV+ individuals, especially ethnic minorities and women, receive
critical information to empower them to maximize their treatment and health care
options. Both PLWAs and service provider knowledge of the current treatments
has increased, resulting in more people on treatments, extending their length and
quality of life.
Lessons Learned: Because recent HIV/AIDS treatment and diagnostic advances are extremely complex, if PLWAs are to access and adhere to the difficult
therapies, they must first be provided with clear, concise and culturally and linguistically appropriate treatment education on the therapies. Ethnic minorities and
women desperately want easily understandable information to make decisions
on their health care.
42230 National programme of treatment workshops for people
directly affected by HIV
Henry Grahame-Smith. 16A Clapham Common Southside, London, SW4 7AB,
UK
Issues: Many people directly affected by HIV can find access to appropriate
treatment information difficult or the material incomprehensible. Some doctors do
not have the time or skills to impart complicated scientific information in a way
that their patients understand. People attending treatment clinics are sometimes
intimidated by the health care professional. Written information is often not the
best way for people to learn.
Project: To set up and run a national programme of workshop in as flexible a
format as possible. A group of mainly HIV-positive volunteers were trained in HIV
treatment information and group skills. They are delivering training events covering some basic science, information on HIV disease progression and anti-HIV
treatment. The topics have been developed into modules so that the trainer can
choose which modules cover the needs of the group. The events can be run for
an evening or for as long as a whole day. A variety of training techniques can be
used during the events ranging from lecture style, question and answer, general
debate and games and exercises. A range of these techniques and visual training
materials will be presented.
Results: To date a total of 32 workshops have been run around the UK.
Evaluation of the training event has been in the form of a questionnaire at the end
of the day. 100% of the 354 people who attended last year said that they would
recommend the course. 67% of participants felt that all the topics set out at the
beginning of the training event were covered well or excellently. 49% of people

who expressed a preference said that their favourite section of the training was
the basic science sections on the immune system and HIV replication.
Lessons Learned: A flexible structure to a training event about treatments
is needed where the range of initial knowledge could be great. An introduction
to some basic science about the immune system and HIV replication makes
information about anti-HIV therapy, the need for combination therapy, side-effects
and issues of resistance and adherence much more understandable. A variety of

training techniques, the use of diagrams and a range of different analogies also
helps those attending understand complicated and emotive information.
142231 Worldwide education of primary care providers: New
antiretroviral treatment guidelines
Eric Goosby', A. Macher2, J. Bartlett3, R. Torres4, K. Balano5, J. Murray6,
I. Burgener7. 1200 Independence Ave SW Room 736-E, Washington DC 20201;
2U.S. Public Health Service, Rockville, MD; 3Johns Hopkins Hospital, Baltimore;
4St. Vincent's Hospital, New York NY; 5San Francisco General Hospital, San
Francisco CA; 6Food and Drug Administration, Rockville MD; 7 Voice of America,
Washington DC, USA
Issue: Dissemination and clarification of clinical state-of-the-art information to primary care providers is paramount for the implementation of effective antiretroviral
treatment.
Project: The US Public Health Service, in a collaborative effort with the Voice
of America, sponsored and directed a live two-hour international clinical teleconference regarding the new antiretroviral treatment guidelines via satellite and
telephone lines. During a three month pre-program needs assessment, primary
care providers submitted practical questions that they wanted answered by a
multi-disciplinary panel of world-renowned experts, including a clinical pharmacist.
Results: The submitted questions were collated into a final format and answered during a live two hour broadcast on September 30, 1997 by a panel of
expert clinicians at Johns Hopkins Hospital, San Francisco General Hospital, St.
Vincent's Hospital, and the Food and Drug Administration. After answering the
submitted questions, the telephone lines were opened to primary care providers
for their additional and followup questions for the panel. The live teleconference
was heard by over one million persons worldwide including care providers in
traditionally difficult to reach sites-clinics serving the homeless and substance
abusers, as well as correctional facilities (jails and prisons). Post-program evaluations appreciated the access to such expert opinions/the event's timeliness.
Lessons Learned: Live international interactive teleconferences are a practical
and cost-effective mechanism for educating primary care providers throughout
the world. Pre-program needs assessments promote the transfer of pertinent
practical information in a timely fashion.
422321 Keys to the success of a community-based HIV treatment
education programme
Edward King, K. Alcorn. 16A Ccapham Common Southside, London, SW4 7AB,
UK
Issues: It is widely recognised that community-based treatment education programmes can foster informed decision-making, maximise adherence and enhance
doctor-patient partnerships.
Project: NAM Publications has established a multi-faceted programme of treatments education in the UK. In 1991 NAM published the first edition of its HIV &
AIDS Treatments Directory, which has grown into a comprehensive 550-page reference resource now in its thirteenth edition. To complement the Directory, in 1992
NAM commenced publication of a monthly newsletter, AIDS Treatment Update,
which is now accompanied by monthly, one-sided Factsheets and occasional
booklets. The content of all the publications is developed in close consultation
with a medical advisory panel, chosen to reflect the diversity of expert opinion
among AIDS researchers and clinicians in the UK. To complement these print
resources, NAM provides a training programme consisting of workshops for people living with HIV throughout the UK, monthly information forums with expert
speakers, and other forms of collaborative training with self-help groups and other
community-based organisations working with people directly affected by HIV. All
aspects of the programme are regularly evaluated and additional research has
been conducted into the treatment education views and needs of people not
currently using these services.
Results: Demand for these services is high and has increased substantially
since summer 1996. Evaluations have established that the services are appropriate and widely accessible. Full details will be presented.
Lessons Learned: The effectiveness of a treatment education programme can
be maximised by ensuring it has the support and active participation of treating
physicians; providing a range of information to accommodate different levels
of information and understanding; supporting written material with face-to-face
and group training opportunities; regular evaluation among users and non-users,
followed by appropriate modifications; and working in partnership with other
community-based groups for people living with HIV or AIDS.
| 42233 It's not just about taking those pills: A training program
model for health and support workers working with HIV
positive people making treatment decisions
Paul Hannan, David Edler. AIDS Council of New South Wales (ACON), PO Box
350 Darlinghurst, Sydney, Australia

Issues: Our research indicated that many HIV positive people's experience of information around new treatments and the way in which it was being disseminated:
confusing; disempowering; & often insensitive to their individual psychosocial issues and unsupportive of decisions about treatments uptake and compliance.
Project Established a team comprised of experts in training, counselling, psychotherapy and HIV medicine - some of whom were HIV positive themselves.