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

352 Abstracts 22439-22443

12th World AIDS Conference

It is our intention to highlight key events with regards to this work and in particular workshops held at the European seminar, Vancouver AIDS Conference,
the Madrid Summit, AIDS Impact Melbourne, work shop at Chiang Mai as well
a special edition of AIDS Care dedicated to this issue. We will then show the
recommendations made relating to policy as well general health care for both
positive people and their carers. We will propose a policy statement regarding
care at the end of life for people with HIV and AIDS, developed during the project.
Results: There are huge differences depending on economic status, race,
geographical location, gender and age.
Conclusion: HIV and AIDS raises many questions but not as pertinent as
those relating to the end of life. This work highlights the significant gap between
the medical establishment, human understanding and people living with HIV and
AIDS basic human rights.
S22439 Communities for people with AIDS: Evaluation of sanitary
and assistential aspects
Agostino Zambelli1, G. Codini2, M.C. Banfi1, L. Donisetti2, M. Granelli3,
C. Omodei Zorini4, A. Cargnel1. 12nd Dept. Infect. Diseases, L. Sacco Hospital
Via G.B. Grassi 74, 20157 Milano; 2Progetto CTTA, Sane-Comune di Milano,
Milan; 3Charitas Ambrosiana, Milan; 4A77 Community, Milano, Italy
Issue: To investigate sanitary and assistential problems in 4 communities for
people with AIDS in Milan area, Italy, paying attention to conditions of people who
live in lodging in the communities, to medical and nursing necessities, to given
therapies and prophylaxis.
Project: From january to june '97 a PhD evaluated fortnightly the patients
(pts) living in four communities. The data were collected on a dedicated patientform including date of entrance in community, initial diagnosis, autonomy status,
presence of psychiatric and neurologic problems, numbers of medical visits and
clinical checks in hospital or in community, oral and parenteral therapies, prophylaxis. During the first three months 47 pts were evaluated, while in the last three
months pts were 51.
Results: All pts showed an advanced status of immune depression; in the first
quarter CD4 cells count lesser than 200/mm3 was found in 78%, while in the
second quarter it was found in 73% of pts. After the first quarter of the study many
pts started a multidrug therapy with protease inhibitors. Bedridden pts decreased
from 17% in the first quarter to 12% in the second one, while pts not completely
self-sufficient increased from 29.7% to 35.3%. 30% of pts showed psychiatric
pathologies, either HIV related or not. The average number of medical visits in
hospital was 3/quarter x patient, while clinical checks were 2.5/quarter x pt.
During the first quarter 36% of pts assumed iv therapy, while in the second one
there was a decrease to 29.4%.
Lesson Learned: The impact of therapies, oral or iv, the presence of a great
number of psychiatric pts, the necessity of frequent hospital clinical checks and
medical visits, the nursing of bedridden patients are the most important problems
for the management of a community for AIDS people. Many changes seem to be
related to new antiretroviral multidrugs therapies.
22440 Home care skills training for informal carers of persons
S with HIV/AIDS
Jocelia Adams. c/o 1675 California St., San Franciso, CA, USA
Purpose: To enable persons with HIV/AIDS to receive sufficient, appropriate and
affordable health care in their own homes by training friends, partners and family
members in basic home-care skills.
Project: The format is a series of workshops presented once a month. The
18-hour curriculum includes: an overview of HIV/AIDS, opportunistic diseases,
treatment, infection and prevention strategies, universal infection precautions,
mental status changes, milieu manage-ment, and pain and symptom control.
There is a special three-hour hands-on skills lab demonstrating durable medical
equipment and bedside care techniques. Other workshops offer a system for
organizing the caregiving group, means of accessing community resources, and
the role of social workers/case managers. Legal issues such as powers of attorney for health care and rights of survivorship are explained. Funeral options are
covered, as is the question of what to do if death occurs at home. Full printed
outlines and a packet of reference materials is provided. Pre- and post-testing
evaluate course effectiveness. The seminars are coordinated by staff and classes
are taught by volunteer community HIV professionals. Workshops are conducted
at the conference facilities of local medical centers. The courses are free of
charge.
Results: Informal caregivers restructure the home care setting by forming
carer networks yielding more care hours to the PWA and use less paid help. This
structure also allows the primary carer to work more at their employment creating
respite and financial benefit. Carers make accurate physical assessments and
have improved problem-solving skills. Carers and patients alike reported greater
confidence in the carer role, less anxiety in the home and willingness to care for
others in the future.
Conclusion: This training course empowers lay carers of persons with AIDS

to become proactive members of the health care team who reduce the morbidity
of the patient as well as become effective, efficient substitutes for some paid
homecare providers. It also creates a cadre of informed carers in the community
with the skills and confidence to go on and care for others in their personal circle
which is a valuable supplement to rationed care.

I 22441 Home-based care by PWAs
Grace Mokou1, M.R. Ottenweller2. 1220 Cornelis St. Fairland,
Johannesburg;2 HOPE worldwide, Johannesburg, RSA
Issue: PWAs must be trained to assess home-based needs and provide homebased care for the PWAs in their respective support groups and communities.
Project: The Soweto HOPE Model for community-based care and support has
been utilised in 12 communities in Soweto. In each community the counsellors
have been trained in home-based care through a 3 month course in cooperation
with the hospice association. These PWAs provide home visits to their peers
whom they have already encountered at the local support group. During these
visits the PWA and his family are given counselling, psychosocial support, medical
care, and nutritional support.
Results: The 12 support groups provide 100-120 home visits each month. The
transportation needs are limited and linkage has already been established through
the support groups. Our survey of 100 home visits demonstrated supportive family
members in 68% of the cases but shared confidentiality with a family member
only 33% of the cases. Despite the family support 50% of the clients expressed
a need for further nutritional support and 42% for further spiritual support.
Lessons Learned: PWAs can provide excellent home-based care in their own
communities and these visits are well received when contact has been established through the local support group. It is essential to do a needs assessment
on a regular basis to improve the quality of care and support to be provided by
the PWAs and their support groups.
67* / 22442 Home care for people living with AIDS in Bangkok -
Involving families and optimising the use of hospital
resources
DavidW. Wilson, P. Cathorne, A. Kumphitak, S. Kasi-Sedapan, S. Lakhonphol.
311 Ladprao, S01 101 Bangkapi, Medecins Sans Frontieres (Belgium),
Bangkok, Thailand
Issues: Symptomatic HIV infection is increasing in Thailand. Tuberculosis is
the commonest AIDS defining illness. Because of ignorance, stigmatisation and
poverty, PLWA (People Living With AIDS) may lose family support and cannot
make effective use of the health care system. Compliance with medication is
often poor. Continuum of care is not developed.
Project: For 3 years (since 1995) a team of 4 Thai nurse practitioners has
provided home health care to PLWA. We give information, help PLWA and their
families to understand their condition, give nursing care, train and support the
carers, dispense drugs for minor illnesses or symptomatic relief. We refer clients
to a hospital providing an appropriate level of care. A doctor provides back-up
for the team and carries out medical consultations at Bamrasnaradura (National
Infectious Diseases) Hospital. This is the resource hospital for half of our clients.
Most clients are very poor and our service is free.
Results: In 3 years, we have had 215 clients (133 men, 66 women and 15
children). Nearly half had tuberculosis. Many clients were referred to us because
the family wanted us to transfer them to a shelter. In fact they could be cared for
at home. Of 73 deaths, half were at home with the family involved in care. Before
enrolling in the program, most clients had shopped around for treatment or lost
follow-up. After enrollment, more than half were maintained in regular hospital
follow-up. 40% of clients or carers did not understand or comply with medication
on enrollment. Three months later, this was reduced to 25%.
Lessons Learned: Provision of basic information to families, together with
"hands on" nursing care in the home can counteract fear and enable PLWA to
stay at home. Home care should be a link between the home and the hospital and
help maintain clients in hospital follow-up. Home care can improve compliance
with medication.
22443 Lessons and challenges of nutritional home care for
PLWHA and HIV positive persons
Ebenezer Olabamiji Ojofeitimi1, I. Fakande2. 1lnstitute of Public Health, College
of Health Sciences, Obafemi Awolowo University, ILE-IFE; 2Matron State
Hospital, Ilesha, Nigeria
Objectives: To assess the nutritional status of PLWHA and HIV positive persons,
stop weight loss and maintain optimal nutritional status.
Design: Prospective and open study.
Methods: Anthropometric technique and dietary assessment were employed to
assess the nutritional status of all our already diagnosed HIV positive clients who
have been referred to our AIDS Nutritional Support Group of the Nigerian chapter
of African AIDS Research Network based in Ilesha, Osun State, Nigeria. Medical
treatments for AIDS related infections were provided by physician in charge of
Sexually Transmitted Infections at State Hospital Ilesha. Nutritional counselling
and food demonstrations were used as tools to control and prevent weight loss,
restore and maintain optimal nutritional status. Locally available foodstuffs that
are nutritious and affordable were used to achieve our objectives. The importance
of a balanced diet at each meal was stressed by emphasizing selection of at least

one food item from all the food groups. Positive thinking and regular exercise in
addition to adequate dietary intake to boost the body immune system were also
explained to our clients. All our clients were weighed on weekly basis.
Result: The nutritional status of all our clients indicated severe protein energy
malnutrition based on Body Mass Index less than 18.5 for women and 20 for
men. Nocturnal diarrhoea, very low energy intake, family isolation and depression
were the major causes of rapid weight loss. All our clients were anaemic. The