Abstracts Vol. 1 [International Conference on AIDS (11th: 1996: Vancouver, Canada)]

Monday, July 8, 1996

Mo.D.230 - Mo.D.236

Mo.D.230
CARE OF CHRONICALLY ILL/HIV DISEASE AT HOME:ADEQUACY, COPING
CAPACITIES AND SUPPORT NEEDS IN SELECTED ZAMBIAN COMMUNITIES
Sichone, Moses*, Mulenga D*, Msiska R*, Fylkesnes, K*. Zambia Nti- r I AIDS/STD/TB &
Leprosy Programme, Lusaka, Zambia
Objective: To determine factors influencing the adequacy of car,,i on(,ry ll /HIV disease at household level.
Methods: Chronically ill patients (CIP sick 30 + days) were idert t b, a, v iewing head
of households. Households were sampled by I) arbitrary select (i < n i rtes 2) systematic sampling of households. Personal interviews were condur 1,,( h, I atified CIPs
and their respective immediate care provider (ICP).
Results: The proportion of households (N=3047) with an adult IP.,%. Most
patients presented symptoms or diseases indicating HIV infectio r h. in.5 ty of CIPs
(77%) and ICPs. (71%) preferred the care to be home based. A, t I opor ion (73%) of
CIPs perceived received care as rather restricted and frequently irrdc'qtie.t Despite the
willingness of relatives supporting in various ways. most ICPs expernnced critical problems
related to provision of food and proper hygiene. Access to profr,, i0t i hixlth care was
hampered by high user fees and shortage of drugs. Except signdi',rt outriteach of churches
(21% received support recently), the coverage of other types of su,pport servites appeared
marginal in most communities.
Conclusion: The findings reflect the current economic situation in.mbia (76% extremely
poor): very limited coping capacities regarding basic needs. Patient cec'rsre was to be
cared for at home, but in most cases particular support from outs ide on lamily will be
vital prerequisite adequate careThe coverae a of this type of sutp r s iervics seems still
seriously low, despite for long being established in Zambia, and iot, timedical treatment
appeared significantly hindered by the government policy transte irrn, mote of the burden
of financing health care to patients.
Moses Sichone, National AIDS Programme, PO. Box 32346, Luaikia Zanb ia
Mo.D.23 I
STANDARDIZED TRAINING FOR LAY CARE-GIVERS:THE METROPOLITAN
TORONTO EXPERIENCE
MillerJohnC, Murrant, Gloria M.**. *Executive DirectorTrinity Home HIcp i eToronto, Canada.
** Education Coordinator, Community Programs, Casey House Hospi ce, tioronto, Canada.
Issue: There are transferrable training skills which can enable family a,,id cornrnunity caregivers to competently provide a safe and comfortable environrmernt rin whichl their loved
ones can die of AIDS-related illnesses at home. Effective transfer oi thes e sl ls can assist in
overcoming the challenges of limited material & health care re'ur e wail, le globally for
home care.
Project: Metro Toronto hospices have collaborated to create a stindI clrdized ty person or
volunteer training program.The goals were to facilitate the sharin f aretsou c'es and experience, to create a more mobile team of caregivers, and to instill n e community confidence
in the abilities of lay care givers. It is hoped that PHA's and their fi ids nd rifamlies will
become aware that there is a standard, high level set of skills to whiti they cant have access.
Results: There is a standardized set of training modules available to guide trainers of lay
care givers for their work with PHA's.A qualitative evaluation of twco pilot training programs based on these modules is in process. Preliminary results shosw that there has been
an increase in the level of collaboration in all levels of service a mon Metro Toronto hospices, and thai tthe skill and confidence level of lay care-givers h t, ir, iceased.
Correspondingly community expectations, and comfort level wt it on professional care
givers has increased.
Lessons Learned: In order to ensure the safety and comfort oi pesle dyingr' rAIDSrelsated illness at hoe, it s essential to establ ish and implement,ni dards of skill level for
lay care providers.
J.L. Miller Executive Directo, Trinity Home Hospice, Box 324, Correrce i.ourt Postal
Station,Toronto, Ont.MSL I G I, tel: [phone], fax: [phone],
email: trinityhome.hospice(fdbeachnet.org
Mo.D.232
WHERE TO NOW FOR HOME CARE? A SOUTHERN AFRICA PERSPECTIVE
JcksonHelen*, Kerkhoven R G*,Woelk CG**. * SAfAIDS, Harare, Zimbabwe: **Dept of
Community Medicine. Medical School, University of Zimbabwe, It irare. Zimbabwe.
Issue: In subSaharan Africa home care (HC) support services are the predominant organisational response to AIDS care but serious problems arise over I) quality 2) coverage and
3) cost and sustainability of HC programmnes.
Project/Research: Problems in providing adequate, sustainable ft I aervces must be seri
ously addressed.The presentation illustrates the nature of the problerns with special reference to Zimbabwe, and suggests possible solutions including the role of alternative community care models.
Results: Key problems illustrated in the presentation are poor i ality, low coverage and
unsustainable costs apparent in much HC despite high dedicatio t ttft,tard input of
resources.These limitations are exacedaated by inadequate anl i i manaement, health as
opposed to development modelling, under utilisation of commnr t structu s and commuoity member s,tnd under-iresourcing.
Lessons Learned: Problem resoluticn should include effective ir oirt,tnni, mproving mart
agement skills, and programme development with adequate attritn to mnun um accept
abile setrvice and cover age levels and exploralion of alter naition lairo t t:, i ry. These
could include low cost commonity centres, use of volunteers., tiiht t it, trter ia and
other resrurce use, rod maximur use of loal remedies tradiiitn l yow e tnd coot
munity structures. A developmental comricnity-rooted splatot I,, oppoef to ratatrrow
health care model is required that genuinely seeks to empow,, ituur riri and, especially,
women who are the primary care givers.
Helen Jackson, Directo, Southern Africa AIDS Information Dis ir it tin Scrvice
(SAfAIDS), PO Box A509, Avondale, Harare, Zimbabwe Tel: 261 1 It; r
Fax: [phone]; email: [email protected]

Mo.D.233
CARE COUNSELLING MODEL PROVIDES SUPPORT IN RESOURCE POOR FAMILIES
Dickiens Kolondo. Napham Lilongwe 3, Malawi
Objective: The objectives of this plenary presentation are to examine the long term needs of
people living with HIIIV/AIDS and their fiamilies for counselling and suggesting ways of involving
other families or community to support services for the resource poor patients or families.
Method: The presentation is based on the experiences of NAPH-AM (A Malawi NGO) in
the operating care counselling model and other support services in both urban and rural
areas as well as experience of other organisations in Malawi.
Result: Care counselling model services and support groups play an important role in providing people affected by HIV/AIDS with very long term support to cope with their situa
tions, especially in setting where social stigma and discrimination are high like Malawi. Many
clients prefer anonymity and confidentiality but care counselling model could assist in
acknowledging the client the importance of being open to their status in the community
because in turn the community may render action enablement in good manners, provided
they have appropriate access to training.
Conclusion: Much of the need for care counselling and support for people affected by
HIV/AIDS is caused by social reactions rather than the virus itself The best psycho social
support lies in the development of outlightened social attitudes to the families of the clients
and the community towards HIV/AIDS.
Dickiens Korlondo, Apham, P/Bag 355, Lilongwe3 Malawi
Mo.D.234
THE HEALTH PROMOTION CENTER:A HOME BASED CARE MODEL FOR
SUPPORTING PEOPLE LIVING WITH HIV/AIDS IN THAILAND
uer, manet*,Wootir t *. *Church of Christ in Thailand AIDS Ministry;
*Health Promotion Center
Issue: For people living with HIV/AIDS to have a quality life, support must be given in the
home for both the individual and their community
Project: The Health Promotion Center (HPC), the home based care section of the CCT
AIDS Ministr y was begun in 1992 to support people living with HIV/AIDS (PLWHA) in living at home.Tems of 2 to 3 members visit in homes from several times a week to once a
month depending on the need. The teams offer multi-disciplinary support for the whole
person; education, physical, spiritual and social. Acceptance and skills in caring for PLWHA
are modeled for family and community members who are also provided informal education
on HIV/AIDS prevention, the disease process, how to care for their family member(s) etc.
Team members also serve as advocates and provide referrals for medical, financial or social
needs. Per sons who are HIV+ and are not ready to disclose this to their families or com
munities may also visit or telephone the HPC office where a doctor holds a clinic one after
noon a week.
Results: The teams have been well received by PLWHA as evidenced by the increasing
number of people who request visits.The teams have observed increasing acceptance of
PLWHA within families and communities.The HPC has also influenced both governmental
and NGO AIDS strategies.
Lessons Learned: Informed families and communities are more accepting of PLWHA and it
is easier for PLWHA to come to terms with their HIV status and live a quality life within
the context of a supportive community
Janet Guyer; 14 Pramuan Road; Bangkok 10500;Thailand Telephone: [phone] I
Fax: [phone]
Mo.D.235
THE HIV/AIDS TREATMENT INFORMATION NETWORK:A COMMUNITY-BASED
MODEL FOR PHAS AND THEIR CAREGIVERS
Brown Glen W*. *Community AIDS Treatment Information Exchange (CATIE),
Toronto, Ontario, Canada
Issue: A fundamental goal of AIDS activists and service providers has been for PHAs to be
able to manage their own health care. A crucial precondition of such empowerment is
access to reliable information on all forms of HIV treatment.
Project: The Community AIDS Treatment Information Exchange provides a range of services designed to meet this need. Its new nationally funded HIV/AIDS Treatment Information
Network, launched in early 1996, consists of: treatment information consultation in both official languages on a 1-800 line; a specialized information resources centre, which is creating
HIV treatment thesauri in English and French; summaries, reviews and other information
products; a sophisticated database on treatments, conditions, clinical trials underway and local
support services; and Internet access to CATIE's database and publications.
Lessons: The new Network's community-based model and unique combination of services
highlights the potential of: program planning driven by users, through extensive cross-country consultations and representative advisory committee; combining commrunity-defined pri
orities with the best information resource management and state of the -art technology;
providing information on all treatments, both complimentary and allopathic, and an integrated continuum of services, so that users can get all the information they need with one
phone call; working in collaboration with other organizations to avoid duplication and
enhance eacli others' efforts.
Glen Brown, CATIE -517 College Street, #420,Toronto, Ontario, Canada, M6G 4A2
Mo.D.236
THE FAMILY OF PERSONS LIVING WITH AIDS AS HOME CARE GIVERS:THE ROLE
OF WOMEN.
Sohis Ant oro A., Arteaga R., Castaned O soro M., Perez R., Reyes C..Texcucano
V.A ~c ir tnt por It Conaunid A.C. Mexico D.. Mexico
Issue: The fhinily is the foremost possibility of support for persons living with AIDS (PWA).
Despite this however: the commitment of caricng lies basically on the women of the family.
Project: On the basis of proposal of primary health care, the methodology of popular education has been used to develop an orientation program, training, and support to the family
of PVA. Skill building in matters of emotional support and home care for PWA is devel
oped within a community based perspective. Noticeably the home care giver is inversely
supported by tlhe very process itself The participation of firmily partners and ft-iends (male
and female),s key points of the PWAs social network is facilitated by the said program.,so
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