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

748 Abstracts 34323-34328

12th World AIDS Conference

treatments related calls to the Helpline, specialist training for helpline volunteers
on treatments and regular information update sessions (c) A range of new treatments services including health promotion materials (information for gay men,
Africans and women with HIV & AIDS and on starting therapy; posters and flyers
on compliance; information briefings for the press and other agencies) and a treatments support service (d) Differing issues presented to the Counselling section,
including changed attitudes to life expectancy, relationship and sexual issues,
long term survival, leading to engagement of a specialist treatments counsellor
(e) A range of new issues presented to the Advice Centre including return-to-work
issues, state benefit changes and reviews and migrants seeking leave to stay
for treatment reasons (f) Restructuring of emotional and practical support services to reflect changing needs and longer active lives of PLWHA (g) Instigation
of major internal training programmes increasing understanding of treatments
and reducing fear of dealing with related issues throughout the organisation (h)
Collaborations with other HIV ASOs and self help groups, including a national
treatments alliance (Treatment Action Taskforce), a Minimum Standard of Care
and campaigns to counter denials of new drugs and compliance problems. New
treatments, where available, have a profound impact upon the range and
type of services offered by both prevention and care ASOs. Change should
be led by research into PLWHA needs and all areas of service should be
monitored to ensure continuing relevance and ability to adapt, with training
and information support provided.
34323 Computerized, facility-based, decentralized reporting
systems for monitoring and evaluation of AIDS support
services in Uganda
Kelly Bussel Jr.1, G. Olupot2, L. Muhangi2, E. Marum3, S. Monico2. 11600
Clifton Road, MS 50, Atlanta, GA, 2The AIDS Support Organization (TASO),
Kampala; 3Centers for Disease Control, Kampala, Uganda
Issues: The AIDS Support Organization (TASO) of Uganda was established in
1987 to provide support to Ugandans with HIV/AIDS, and by 1997 40,000 Ugandans have been served. In 1996, TASO recognized the need for development of a
comprehensive system for monitoring services, and to provide more reliable data
to management and donors. Technical assistance from the Centers for Disease
Control (CDC), and funding from USAID was provided to design and implement
a TASO Management Information System (MIS).
Project: In mid 1996 assessments and evaluations of all existing data collection instruments, the eight TASO Centres, personnel, equipment needed, and
strategic planning were conducted. By November 15, 1996 all participating TASO
Centres staff and dedicated MIS personnel had been trained (130), and all computer hardware and software was in place. All forms used were designed and
field tested by service providers to be used as standardized facility-based record
keeping tools and for data entry.
Results: During 1997 a complete year of demographic data for all newly registered clients (4,787), all counselling sessions (30,244) and all medical visits
(38,369) was collected and computerized. TASO provides a complex array of
counselling and medical care services for thousands of clients. Clients are served
on multiple occasions at multiple TASO Centres/clinics, community outreach sites,
and in their homes. Regular monitoring and evaluation of these multiple services
is not possible without this computerized MIS. This extensive database with its
diverse complexities is not available anywhere else in Africa.
Lessons Learned: TASO has created a unique computerized reporting system
and some of the components of this MIS have already been adopted by other
African AIDS service agencies. This is a dynamic system allowing modifications
and enabling service providers and management to monitor and evaluate services
being provided to People Living with HIV/AIDS served by TASO in Uganda.
34324 Using quality standards to improve the service of an NGO
Andrew Corbett-Nolan, M. Harper. The Terrence Higgins Trust 52-54 Grays Inn
Road, UK
In the UK Health Service quality standards and their promotion through a system
of accreditation, are becoming central to improving patient care, obtaining value
for money and reducing bureaucracy. During 1996/97, the Terrence Higgins Trust,
in collaboration with the NHS Unit Health Services Accreditation tested whether
this mechanism designed for the health service could be applied to improve the
Trust's services.
Each division in the Trust set about developing quality standards against
the Maxwell framework for quality improvement, and started using these as a
management audit tool. In three divisions (Helpline, Buddies and Counselling)
the Trust worked with Health Service Accreditation to develop an accreditation
instrument and then go through the accreditation process.
This pilot is being further developed as a tool for other NGOs to use to improve
and assure quality in their services.
The programme is useful and has helped identify both strengths and weaknesses. To improve the mechanism, more work remains to be done to move the
standards to those with an evidence base which indicates added value for service

users. Further work remains to test performance as well as structure and process.
Compliance with standards increased through the process.

34325 Adherence to treatments in a day-nursery
Bernadette Guerry. Sol EN SI 125 Rue Diavrov, 75020 Paris, France
Issue: Adherence to anti-HIV treatments in the day-nursery of Sol En Si Marseilles
Project: Caring for kids with HIV in a day-nursery requires a full consideration
of their prescriptions and of their parents' inability to give the treatments. To
improve the kids' adherence to their regimens, it is therefore necessary to: 1) find
out what has been told to them about their treatments and somehow encourage
their parents to discuss the issue with them 2) find, when a prescription allows
for it, the most appropriate moment to give the drugs, preferably one that will be
easily remembered by the kid 3) give the drugs in a specific area of the nursery,
without excluding those kids taking them from the others 4) try all drinks and
foods with which drugs that taste bad can be mixed 5) let the kids play with empty
bottles of medicine, pipettes etc. 6) involve them in the process of taking their
treatments.
Results: In 1997, we saw the kids' adherence to their treatments improve
greatly in the day-nursery of Sol En Si Marseilles. The kids' knowledge of their
own HIV status certainly contributed to this improvement.
Lessons Learned: When the conditions mentionned above are met in a daynursery, giving his/her treatments to a child with HIV can be facilitated. We should
particularly focus on the development of play activities around treatments.
34326 Integrated AIDS care program in Uganda - An experience
of 11 years of care in Nsambya Hospital
Lilian Nanyondo1, Miriam Duggan2, N. Beatrice Were3. Nurse Counsellor Health
Educator, c/o Mr. B. Zimula PO Box 7560, Kampala; 2Nsambya Hospital Home
Care Department; 3Social Scientist Leader Of HIV+ Women, Uganda
Issue: Home Care services to the poor community served by Nsambya Home
Care in Kampala, Uganda.
Poject: Nsambya Hospital Integrated AIDS Care started in 1987 to give care
services to needy AIDS patients within a 10 miles radius of Kampala City.
The project aims at bringing medical, nursing, Psycho- social counselling and
Pastoral Care to many poor people living with AIDS. To relieve their anxiety and
suffering thus prolonging and give meaning to their lives.
The Service has grown over the years from simple beginnings and in the course
of time many valuable lessons have been learnt in the way of care and needs of
People Living with HIV/AIDS.
The Role of the Community.
Psychological satisfaction to patients through counselling. The importance of
positive attitudes and approach through Medical and Nursing is only a portion of
the care needed, once the bread winner is bedridden. There are so many social
problems to be addressed particularly in a country with inadequate resources.
1 34327 The future integration of care services and prevention
education for the HIV-positive, asymptomatic population
Diane Bonne. Northwest AIDS Foundation, 127 Broadway Avenue East, Suite
200, Seattle, WA 981020, USA
Issue: The population accessing AIDS Service Organizations in Seattle, Washington is shifting toward the HIV-positive, asymptomatic population, whom agencies
have not served historically.
Project: Given the availability of increasingly effective medical treatment for
HIV-infection, persons sing ASOs are in greater number HIV-positive and asymptomatic. This trend demands that ASOs shift their paradigm of HIV-disease from
that of a moderately fast terminal illness to that of a chronic, manageable life-long
condition. This shift presents a challenge to agencies created to serve persons
who were (1) uninfected and needed primary prevention information, or (2) living
with advanced AIDS who, needed end-of-life support services. The Northwest
AIDS Foundation has integrated its client services and prevention education division in order to determine how to meet the prevention education and support
services needs of the HIV-positive, asymptomatic population.
Results: The client services department has been restructured to respond to
the needs of those who may or may not be doing well on new medical therapies.
The prevention education staff are adapting their primary prevention message to
secondary prevention messages targeted to those who are HIV-positive, as well
as referring outreach contacts who are positive to the agency for services. The
agency has also developed a series of educational workshops on healthy living,
to assist persons living with HIV in supporting their immune systems. As a result,
the agency provides a more holistic response for asymptomatic persons living
with HIV.
Lessons Learned: With continued advances in medical care for persons living
with HIV, the future of AIDS Service Organizations in the Western United States
depends upon their ability to shift the disease paradigm and integrate client
services and prevention programs to meet the needs of a healthier population.

34328 Capacity building of a community based organisation:
Lessons of the past, visions for the future
Robert Kua Verebasaga. PO. Box 12718, Suva, Fiji
Issue: Small emerging community based organisations (CBOs) in developing
countries are often fragile, lacking experience and trained staff, yet need time
and support to resolve organisation development problems in their own way and
on their own terms.