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

284 Abstracts WePeF6814-WePeF6817

XIV International AIDS Conference

Recommendations: Our experience suggest an unmet need for palliative care
for patients with HIV/AIDS. A multi-disciplinary model, which incorporates both
HIV and end-of-life care expertise, is a replicable example of how to provide comprehensive care for patients with HIV/AIDS as they approach the end-of-life.
Presenting author: Mimi Rivard, Department of Family Medicine, Montefiore
Medical Center, 3544 Jerome Ave, Bronx, NY 10467, United States, Tel.: +718
920 6282, Fax: [phone], E-mail: [email protected]
WePeF68144 A description of clients from three palliative
projects funded by HRSA to target medically
underserved populations
D.G. Karus', V.H. Raveis', K. Marconi2, B. Hanna3, M. Perrone4, P. Selwyn5.
' Mailman School of Public Health, Columbia University, Mailman School of
Public Health, Columbia University, Center for the Psychosocial Study of Health
and I//llness, 100 Haven Avenue, Suite 6A, New York, NY 10032-6266, United
States; 2Health Resources and Services Administration, Rockville, Maryland,
United States; 3AIDS Services Center, Inc., Anniston, Alabama, United States;
4 University of Maryland, Baltimore, Maryland, United States; 5Montefiore
Medical Center, Bronx, New York, United States
Background: Persons from medically underserved populations with HIV/AIDS
are a growing segment of persons requiring palliative care. Unfortunately little is
known about the needs and quality of life of these individuals or their perceptions
regarding the care they receive.
Methods: Data presented are from the first full year of data collection for three
projects funded as part of a HIV/AIDS Bureau, Health Resources and Services
Administration nation-wide initiative to provide appropriate palliative care and services to individuals with HIV/AIDS who have difficulty accessing the health care
system, either due to a lack of services in their communities or because they are
hard-to-reach. Funded projects are participating in a coordinated evaluation effort
which includes the collection of a common set of data elements. Clients complete
measures assessing: quality of palliative care (Palliative Care Outcomes Scale
[POS]), quality of life (Missoula-Vitas Quality of Life Index), psychological functioning (Mental
Health Inventory), physical functioning (Rapid Disability Rating Scale [RDRS-2]),
and symptomatology (Memorial Symptom Assessment Scale - Revised). Staff
complete analogous versions of the POS and RDRS-2.
Results: Location, institutional setting, and service model vary across projects.
Analyses conducted thus far suggest that although projects differed with regard to
clients' sociodemographics, CD4+ counts, history of substance abuse, and survival time; similar mean scores for outcome measures were found at all three
sites. Interesting differences across sites were noted with regard to individual
symptoms and responses to specific items comprising the measures.
Conclusions: Findings suggest that despite differences with regard to service
delivery models and client populations being served, HIV/AIDS patients tend to
share a common set of symptomatology, similar scores on measures of QOL and
psychological adjustment, and concerns related to their care.
Presenting author: Daniel Karus, Mailman School of Public Health, Columbia
University, Center for the Psychosocial Study of Health and Illness, 100 Haven
Avenue, Suite 6A, New York, NY 10032-6266, United States, Tel.: +(212) 304 -5557, Fax: +[phone], E-mail: [email protected]
WePeF681 5 Incorporating evaluation and monitoring into
I care-planning and palliative program development
V.H. Raveis', D.G. Karus', K. Marconi2, M. Perrone3, P. Selwyn4, B. Hanna5,
H.A. Rosefield Jr.6, E. Patterson7. 'Mailman School of Public Health, Columbia
University Mailman School of Public Health, Columbia University Center for the
Psychosocial Study of Health and Illness, New York, NY 10032-6266, United
States; 2AHealth Resources and Services Administration, Rockville, Maryland,
United States; 3University of Maryland, BaUtimore, Maryland, United States;
4Montefiore Medical Center, Bronx, New York, United States; 5AiDS Services
Center, Inc., Anniston, Alabama, United States; 6 Volunteers of America,/Inc.,
Alexandria, Virginia, United States; 7 Cathoic Community Services, Jersey City
New Jersey United States
Issues: It is an emerging challenge to provide palliative care and services to
the medically underserved and hard-to-reach individuals with HIV/AIDS. Palliative
services are often fragmented or limited in many medical settings, particularly in
impoverished communities, making it difficult to maintain continuity of care.
Description: An initiative by the HIV/AIDS Bureau, Health Resources and Services Admin, US Deptt of Health and Human Services is designed to support the
development of improved forms of palliative care service delivery to HIV-infected
individuals. Five demonstration projects, funded through this initiative, are targeting the homeless, uninsured, substance abusers, mentally ill, and incarcerated
individuals with HIV/AIDS. All projects are collecting a common set of data elements. This presentation will describe the ongoing multi-site evaluation effort and

the procedures necessary to integrate monitoring and evaluation within program
delivery.
Lessons learned: The elements chosen maximize the comparability of information across projects while recognizing the limitations imposed by substantive
project differences with regard to clients served, models of service, nature of services and clients' health statuts. The domains accessed are relevant to the goals
of palliative care and include quality of care, quality of life, symptoms, psychologi
cal functioning, physical functioning, service utilization, medical status, treatment
history and sociodemographics. Information is being collected on key steps in program implementation, barriers to access and continuity of care and innovations
to the delivery care system to identify factors that facilitate or impede program
implementation.
Recommendation: Future advances in knowledge and skills in the provision of
palliative care and supportive services to persons dying from HIV/AIDS need to
build upon reliable and valid information garnered from the evaluation of programs
already providing such care or services.
Presenting author: Victoria Raveis, PhD, Mailman School of Public Health,
Columbia University, Center for the Psychosocial Study of Health and Illness,
New York, NY 10032-6266, United States, Tel.: [phone], Fax: [phone], E-mail: vhrl @columbia.edu
WePeF6816I Hospice home and residential care in
resource-limited setting
D.M.J. Darthanqzuali, V.L.M. Muana. Shalom, Shalom, Nehru Marg,
Churachandpur - 795128, Manipur, India
Issues: Provision of palliative/hospice care for PLWHAs is a priority in HIV/AIDS
program. At present, Shalom is the only project that provides palliative/hospice
care for the HIV/AIDS affected in the hill districts of Manipur. The importance and
need for both home and residential care has been evidenced by the number of
actual AIDS cases and number of AIDS deaths during the last 6 years or so.
Description: Shalom project started hospice home care in 1996 and set up a residential community care centre for PLWHAs in 1999. The palliative care includes
nursing and medical care, councelling, laboratory, bereavement support, material
support services. Over the last 6 years, Shalom has recorded 358 AIDS deaths in
Churachandpur town with a population of 60,000. And has treated 412 PLWHAs
at its residential community care centre.
Lessons learned: Running a community based palliative/hospice care program
requires a commited multi disciplinary staff. The program has largely bridged the
gap between PLWHAs and others in the community and has truely integrated
prevention and care in combating against the scourge of HIV/AIDS.
Recommendation: Our experience at Shalom suggest that proper and appropriate models of care need to be established and applied if we are to effectively
control HIV/AIDS.
Presenting author: Dr. Mary Joy Darthangzuali, Shalom, Nehru Marg, Churachandpur - 795128, Manipur, India, Tel.: [phone], E-mail: shalomccp
@caltiger.com
WePeF6817I A multi/sectoral strategy to take care of people
living with HIV/AIDS in the community
E. Schilling. Sizanani Village, PO. Box 1372, Bronkhorstspruit, South Africa
Issues: St. Joseph's Care Centre is implementing a multi-sectoral strategy aiming at upgrading the medical treatment and the emotional, spiritual and social
support of people infected and affected by HIV/AIDS. The centre started as a
hospice but within two years its strategy expanded to four legs: Hospice, Home
Based Care, Community Based Care for Orphans and Training for volunteers and
staff members.
Description: This paper will explain the practical experience of St. Joseph's Care
Centre in developing and implementing this multi-sectoral strategy.These strategies are:
St. Joseph's Care Hospice to provide a care facility committed to improving the
quality of life for those in terminal stages of illness. All the staff, voluntary helpers
and medical personnel devote themselves to making those entrusted to their care
as comfortable as possible. Home Based Care to provide community care that is
affordable, accessible, equitable and efficient, and that it also enhances the collective capacity of the community to provide care and support. Community Based
Care for orphans to provide economic, psycho and social assistance to families
and orphans infected with and affected by HIV/AIDS in order to improve their life
expectancy, their quality of life and to prevent social exclusion, crime and school
leaveTraining to be provided for our own staff, volunteers and community members with the aim of delivering a quality service and to empower the members of
our community.
Lessons learned: The great need in South Africa to take care of HIV/AIDS patients drove our centre to develop alternatively strategies to complement our hospice component which was not sufficient due to the high number of infections and
the big lack of resources in our area.
Recommendations: The success of our programme and strategy depends on
good planning, successful fundraising, good organisation and management skills,
hard work by a very dedicated and professional team and good reporting to
donors.
Presenting author: Elisabeth Schilling, P0O. Box 1372, Bronkhorstspruit, South

Africa, Tel.: [phone], Fax: [phone], E-mail: sizanani @ gmx.net