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

XIV International AIDS Conference

Abstracts ThPeG8300-ThPeG8303 661

bereavement in AIDS care. Participants in the study to date have included 20
HIV positive clients at the Mildmay centre, 15 positive HCPs, and 125 HCPs on 6
training programmes run by Mildmay with support from Manchester University. A
key issue that is emerging from this study is the need to examine how to support
positive HCPs providing care services for people with HIV/AIDS.
Lessons learnt: Living with HIV and providing professional care for patients and
families with the same condition presents many challenges including: fear of disclosing HIV status to colleagues in case it results in dismissal, or stigma; guilt due
to fear of infecting patients when knowledge and resources to implement infection
control procedures are lacking; difficulties in counselling patients if it is not possible to be open about their own status; stress cause by identifying with patients
who have emotionally charged family situations or distressing symptoms; multiple
grief due to loss of patients in addition to their own family members; the stress of
caring for many orphans; fears for their own health as they care for patients with
opportunistic infections.
Recommendations: Positive HCPs who have adapted most successfully to the
challenges they face in their professional lives reported that counselling, further
training on the AIDS Care and Management and a supportive working environment have helped them to do so. Implications for training, management and policy
will be examined.
Presenting author: Catherine O'Keeffe, Mildmay International, 1 Nelson Mews,
Southend on Sea, SS1 1AL, United Kingdom, Tel.: [phone], Fax: +44
1702394454, E-mail: [email protected]
ThPeG8300] Capacity building of the PLWAs
A. Ilias. 14/1, Ground Floor, Sir Syed Road, Mohammedpur, Dhaka, Bangladesh
Issue: Visibility of PLWAs in Bangladesh is very low due to stigma, discrimination and violation of human rights. Those who are visible are not well organized.
There are needs for their capacity building to facilitate their greater involvement in
the national responses to HIV/AIDS prevention care and support. At present, the
PLWAs are trying to form their own network to raise their voice in support of their
needs and rights.
Description: This research paper is prepared with a view to identifying the status
and capacity of the PLWAs; their involvement in cares and support programme;
capacity and needs in HIV/AIDS responses and role of family, government and
support NGOs
The stocktaking report is based on discussions with positive people individually
and meeting with support organizations and government officials.
Lessons learned: If properly approached, the media professionals and general
people accept the PLWA and even offer support
Recommendation: PLWAs need to be trained to form and run their own network as representative body of the community. The support NGO should develop
strategies to build the capacity of the identified PLWAs
Presenting author: Ahmed Ilias, 14/1, Ground Floor, Sir Syed Road, Mohammedpur, Dhaka, Bangladesh, Tel.: [phone], Fax: [phone],
E-mail: [email protected]
ThPeG8301 People Living with HIV/AIDS Leadership Training
Institute
D. Tietz1, P. Berrios2, J. Hatchett2, J. Pedraza3, C. Debnam4. 1New York State
Department of Health, AIDS Institute, New York State Department of Heatlh,
AIDS Institute, Empire State Plaza, Coming Tower, Rm 485, United States;
2Cicatelli Associates, Inc., New York, United States; 3Cicatelli Associates, Inc.,
New York, United States; 4National Association of People with AIDS,
Washington, DC, United States
Background: To provide training, skills building, motivation and education to People Living with HIV/AIDS (PLWA), to support the development of involved and
effective HIV positive community leaders.
Methods: A three-day training program designed to encourage PLWA to discover
their own leadership potential, and to identify next steps for developing and applying that potential in the HIV/AIDS community. Core training topics include: History
of PLWA Advocacy; Leadership; Identity, Diversity and Disclosure.
Results: Evaluation results from 704 respondents indicate a high level of satisfaction with the Core training and a greater awareness of opportunities for involvement in government and community-based planning and evaluation processes.
Results also suggest increased self-efficacy in behaviors related to leadership,
advocacy and in participants' feelings of empowerment. Respondents report placing extremely high value on knowing that the program was developed and is being delivered by peers (i.e., PLWA). Anecdotal feedback indicates increases of as
much as 60% in the number of PLWA participating in local AIDS service planning
bodies after completing the Core training.
Conclusions: PLWA leadership development is an ongoing process that requires
training and skills building. Lack of experience with and knowledge of HIV/AIDS
community planning activities or opportunities for involvement creates a signifi
cant barrier to PLWA participation and leadership in these activities. Interventions
focused on peer-to-peer skills transfers are effective in overcoming this barrier.
Presenting author: Daniel Tietz, New York State Department of Heatlh, AIDS
Institute, Empire State Plaza, Corning Tower, Rm 485, United States, Tel.:
[phone], Fax: [phone], E-mail: det01 @health.state.ny.us

ThPeG8302 More alive than ever: An advocate for my
community
H. Dohnert, S.B. Mannheimer, MD. Division of Infectious Diseases, Harlem
Hospital Center, HATS Program, 506 Lenox Avenue, Rm. 3101-A, New York,
New York, 10037, United States
Issues: How can HIV-infected people in underserved communities overcome suspicions about antiretroviral therapy (ART) and the medical establishment that offers it? How should HIV care and substance use treatment be integrated? How
can hard-to-reach patients and their medical providers build communication to
optimize HIV care?
Description: My testimony as an HIV-infected recovering drug addict provides
insight into these questions. My acceptance of
ART led me away from drugs and paralyzing fears of both AIDS and ART, and toward success with treatment. I began to participate in efforts to bring trials of HIV
therapies to underserved communities like mine, and I became a case manager
serving people on ART.
Motivation to change came from: methadone clinics providing HIV care; doctors
who encouraged me to learn about HIV; a supportive network of HIV-infected people recovering from substance use; a hospital Community Advisory Board that introduced me to clinical research and what clinical trials can offer; and researchers
who brought me into their clinical trials network as a community representative.
Working as a peer counselor, I shared experiences that my clients identified with
and drew strength from. As a trained case manager, I have new skills with which
to advocate for treatment, but my most powerful answer to clients doubting its
benefits is still,"Look at me. I'm more alive than ever."
Lessons learned: My commitment to ART grew as I learned about all aspects of
treatment, from clinical research to adherence skills. I give support and inspiration
back to my community working with clients and the clinical trials network.
Recommendations: The most powerful advocates for a community may be
home-grown. People who have successfully met the challenges of drug addiction
and HIV infection should have opportunities to help promote positive behavior
changes for others on ART, and to have input into clinical research.
Presenting author: Harry Dohnert, HATS Program, 506 Lenox Avenue, Rm.
3101-A, New York, New York, 10037, United States, Tel.: +[phone], Fax:
+[phone], E-mail: hdl91 @columbia.edu
ThPeG8303 Overcoming obstacles to the involvement of
People Living with HIV/AIDS in community-based
programs in developing countries
C. Cornu1, C. Castle2, R. Dua3, D. Herrera4, V. Nadkarni5, A. Ou6draogo6,
N. Velasco4. 11nternationalHIV/AIDS Alliance, Horizons/Population Council,
Washington, DC; 2Horizons/Internationa HIV/AIDS Alliance, Washington, United
States; 3Hindustan Latex Family Planning Promotion Trust, Mumbai, India;
4Horizons consultant, Quito, Ecuador; 5Family Planning Association of India,
Mumbai, India; 6Horizons consultant, Ouagadougou, Burkina Faso
Background: Greater involvement of PLHA is a critical aspect of the response
to the HIV/AIDS epidemic, yet little research has explored involvement of PLHA
in the delivery of HIV/AIDS prevention, care & support services at the community
level in poor countries & the factors that limit & enhance involvement.
Methods: A diagnostic study examined PLHA involvement in NGO prevention
& care programs in Burkina Faso, Ecuador, India & Zambia. Extensive qualitative data were collected through interviews & focus group discussions with over
800 respondents. Participants were service providers of NGOs; PLHA & people
affected by HIV/AIDS who use services; relatives of PLHA involved in NGOs;
health workers; policymakers & community leaders.
Results: According to respondents, major factors limiting PLHA involvement include fear of stigma and discrimination as a result of being identified as HIV+
through involvement in AIDS organizations, limited education and skills to plan
& deliver services, and high morbidity & mortality. Poverty is also a key limiting
factor, and the need to earn a living & inability to meet even basic needs hinders
involvement. Organizational obstacles include a lack of policies resulting in a lack
of opportunities for PLHA involvement (or lack of PLHA information on these),
lack of or inappropriate allocation of resources, and judgmental & discriminatory
attitudes of service providers.
Conclusions: NGOs need to build an environment that helps PLHA overcome
social & organizational obstacles to their involvement in programs by ensuring
confidentiality and providing psychological support to PLHA; making peer support
available to reduce the fear of stigma; giving material support to PLHA, including
direct provision of care and/or a referral that guarantees access to care; providing
PLHA with information & training specific to the tasks they will be carrying out; &
by networking with other organizations to fight discrimination & facilitate referral.
Presenting author: Christopher Castle, Horizons/Population Council, 4301 Connecticut Ave NW, Suite 280, Washington DC 20008, United States, Tel.: +1 202
237 9412, Fax: [phone], E-mail: [email protected]