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

820 Abstracts 42234-42237

12th World AIDS Conference

An experiential and informational training program targeting HIV/AIDS Health
and Support workers was developed. Health and Support Workers whose role
includes working with clients requiring information and/or support around HIV
treatments issues were targeted. Situating treatment information essentially in
the psychosocial domain of HIV positive people was trialed. Results The training
program: discouraged a didactic transfer model around information provision;
built skills in client enablement; and framed information in the context of the real
lives of HIV positive people. The program conducted 7 training workshops in
city and rural locations and included areas such as: viral replication, combination
therapies, compliance, positive persons lived experiences/narratives/dominant
discourses, cross resistance, side effects. Established a Treatments Health and
Support Workers information line and encouraged a professional peer support
network. Produced a Resource Kit and take-away Treatments Manual. Built
in evaluative mechanisms allowing project re-design. Participants of this training
program reported a significant improvement in their support of HIV positive people
in treatment decision making.
Lessons Learned: The participation of HIV positive people in the design and
delivery of the program is critical. Including HIV Positive Health & Support Workers
added a rich and powerful dimension/dynamic. Structuring treatments information
around the psychosocial contexts of the target client groups was vital and it is
suggested using this approach would be similarly successful across a range of
HIV/AIDS Health Promotion areas.
42234 An efficient programme for continuing medical education
for counsellors in AIDS service organizations
Hans-Josef Linkens. Deutsche AIDS-Hilfe E. V Dieffenbachstr. 33, Berlin,
Germany
Issue: Since the last World AIDS Conference there is a rapidly increasing demand
of information regarding medical treatment options in HIV-infection. This requires
more efficient medical training opportunities for counsellors in the AIDS Service
Organizations.
Project: Over 120 AIDS Service Organizations (AIDS-Hilfen) in Germany offer
information and counselling on HIV/AIDS as volunteers as well as on a full time
basis. To meet the growing demand for continuing medical education for counsellors a special training course was developed. A training curriculum with various
training unities (e.g. the virus and its replication; standards about antiretroviral
therapy; prophylaxis of opportunistic infections) was developed. The duration of
one course ranges from a full day (minimum) to one weekend, and up to 25 participants are accepted per course. Local AIDS-Hilfen can book the training course
and are asked for their needs. The training courses are designed and organized
and instructors are invited centrally. The courses are performed decentralized in
cooperation with the local AIDS-Hilfe.
Result: The training programme was very well accepted. From April 1997 to
March 1998 about 21 training courses had been performed with a total of approx
330 participants. The topics discussed were the following: basic issues about
the virus, natural history of HIV, basic understanding about antiviral treatment,
the different antiviral treatment options, opportunistic infections, alternative treatments, transmission of HIV, HIV antibody test, hepatitis. The optimal duration was
a one-and-a-half-day training course, i.e. about 8 unities with a duration ranging
from 45 minutes to one and a half hours. The complete costs for the continuing
medical education for counsellors in AIDS-Hilfen ran up to about 150 DM per
participant.
Lessons Learned: The continuing medical education for counsellors in AIDS
Service Organizations in this programme allows to adress the local needs in
a flexible and standardized way thus guaranteeing the quality of the training
contents and its instructors. Moreover, it is a cost effective programme.
42235 Getting the most out of your HIV treatments:
An Australian treatments resource aimed at supporting
adherence/compliance for PLWHA
William Whittaker1, J. Watson2, S.J. Thompson2, C. Workman3. 1 O. Box 412
Kings Cross, New South Wales; 2PLWH/A (NSW), Sydney; 3Fitzroy, Sydney,
Australia
Issues: The need for treatment education resources to assist plwha in their
selection and use of combination therapies was identified and responded to by
the Treatment Working Group of PLWH/A (NSW). This group works on State and
National HIV treatment issues in Australia, representing the needs of PLWH/A in
Australia. Based in Sydney, the epicentre of the Australian epidemic, the members
include treatment activists, HIV prescribers and researchers. The booklet which
was produced was an innovative way of addressing this complex issue for plwha,
and was the first of its kind in Australian HIV treatment education.
Project: A twelve page booklet was produced, targeting plwha who are
presently using, or about to commence, antiretroviral therapy. The message
that combinations of HIV drugs require strict adherence regimes was set out,
and the booklet was designed to cover the issues of diet, dosage times, and
scheduling drugs into lifestyles.

Regularly asked questions were reproduced and answered, and the most
common confusions were adressed. A self testing quiz was also designed to
encourage people to identify a drug combination which suits their individual
needs. Language and visual design were found to be significant to the appeal
and success of the resource.
Results: The booklet was received with enthusiasm, and commended by plwha
and clinical prescribers alike. Distribution covered hospitals, clinics, private prac
tices, as well as a diverse range of community based organisations and groups. It
was estimated that almost 10 000 booklets had been distributed around the state
in less than 3 months, as there are approximately 13 000 plwha living in NSW,
this is considered a significant distribution run. The resource was produced using
mainly volunteer time, and had been developed in 9 weeks, including the 'focus
testing' time. Launched in August 1997, it was the first specific "compliance"
resource developed in Australia, aimed at supporting HIV positive people with
their treatment choices, and adherence issues. It was also believed to be the first
treatment resource of this kind in the world.
Lessons Learned: A significant and relevant resource dealing with a complex
treatment issue can be produced with limited funds and from a small community
organisation. Resources like this booklet need to support the target population
with appropriate language and designs, and the use of personal anecdotes can
identify a resource as being relative to that group's specific needs. The high
uptake of the resource indicated that plwha choosing treatments were waiting for
this support, and needed it in as short a time frame as possible.
S42236 The TRT-5 group: An example of how treatment activism
can improve the patient place in the research process
Franck Fontenay1, F. Houyez2, D. Lestrade3, D.R. Bertholon4, S. Le Coz5,
A. Volny-Anne6, M. Journiac7. 119 bis rue Pajol 75018 Paris; 2VLS Paris; 3Act
UP-Paris; 4Aides Paris; 5Actions-Traitenents Paris; 6Solensi Paris; 7Sida Info
Service Paris, France
Issue: Clinical research is crucial for people with HIV but they are rarely considered as real partners in the drug development process. To adapt research to
what patients expect is the best way to obtain helpful results for patient care.
Project: Created in 1992, the TRT-5 group is a coalition of 8 french AIDS
organisations. The objective of this group is to share the experiences and skills
of each one of these organizations regarding treatments and access to drugs.
Our work is organized around two main lines: information and lobbying. First,
we are in a position to receive, analyse, translate and spread scientific informations on clinical research and drugs to people with HIV. Second, we express
the needs and expectations of people with HIV to governmental agencies and
health professionnals. So, we are engaged in regular contacts with the French
National Agency on AIDS Research (ANRS), the National Drug Agency and with
all the pharmaceutical companies invoveld in the AIDS field. With all of them, we
discuss drug development, compassionnate use, clinical trials, drug approval and
patients information. For example, we have established since 1993 a consultative
and advisory procedure with ANRS on all the trials the agency planned. A similar
procedure is also engaged with several pharmaceutical companies. In the same
way, we systematically express to the National Drug Agency our point of view on
access criteria to the compassionate use protocols implemented in France.
Results: TRT-5 is now considered like a group of expert patients by AIDS
organizations, governemental agencies and health profesionnals. So, we are in a
position to be hear by "officials experts" and pharmaceutical companies. By our
work with them, we can improve the patient's place in the research process.
Lessons learned: working group such as TRT-5 illustrate the role patients
organizations can play in the health system. This role is not consumerism only.
By improving the patient's condition, TRT-5 work helps the scientific community.
42237 Treatment information dissemination and
decision-making among HIV-positive persons is a
regional and local phenomenon
Arn J. Schilder', Paula Braitstien2, R.S. Hogg', I. Goldstone1, M.T. Schecter1,
M.V. O'Shaughnessy'. 1B.C. Centre for Excellence in HIV/AIDS, 613-1081
Burrand Street, Vancouver, BC, V6Z 1Y6; 2BC Persons With AIDS Society,
Vancouver, Canada
Issues: To improve care for the HIV positive persons of sexual minorities it is
necessary to understand their access to treatment information in relationship to
health care decision-making and therapeutic adherence.
Project: This qualitative study utilized grounded theory with data collection
occurring through both focus groups and interviews. The study included 47 participants from three sexual minorities: gay men, bisexual men, and transgendered
persons identifying as women. Demographic data were collected using a questionnaire. Sessions elicited information on: [1] experiences with health care; [2]
HIV antiretrovirals therapies and adherence; [3] identity and health care. Audio
tapes were transcribed verbatim., Major themes being generated and sub-themes
explored via hierarchical branching schema.
Results: Data indicated three sources of treatment information for these three
sexual minorities. Primary care physicians, HIV-positive peers, and by (to a lesser
extent) the media. Few used electronic sources. Consumers felt overwhelmed by
new information and desired plainer, less technical language. Assumptions about
the knowledge level of consumers on the part of physicians delayed therapy.
Scheduling, dosing and side effects emerged as dominant treatment themes.
Information is provided and generated by a local community and was linked to
social support networks. PWA's relied upon HIV peers in social networks to ana
lyze therapeutic experiences and information. After this "window" of consultation,
decisions were made take therapy. Gay men were a nexus of peer treatment
information and shared this with other groups. Participants desired information
on pharmacology, endocrinology and disease pathology issues. Information was
sought about liver disease. There was no appreciation of the value of Aboriginal
cultural beliefs in care. Information on issues of addiction and concomitant use of
antiretrovirals were also sought.