LIVING POSITIVELY .WITH AIDS

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LIVING POSITIVELY
.WITH AIDS
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LIVING POSITIVELY
.WITH AIDS
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AIDS Support Organization
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(TASO), Uganda

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LIVING POSITIVELY WITH AIDS

I

The AIDS Support Organization (TASO), Uganda

by Janie Hampton

I I

STRATEGIES FOR HOPE:

ActionAid

No. 2

REF

WORLD
IN NEED

Published by
ACTIONAID, Hamlyn House, Archway, London N19 5PS, U.K.,
in association with
AMREF, (African Medical and Research Foundation), Wilson Airport,
P.O. Box 30125. Nairobi, Kenya.
and
WORLD IN NEED, 42 Culver Street East, Colchester CO1 1LE, U.K.

©Janie Hampton and G & A Williams 1990

ISBN 1 872502 01 6

r

First edition 1990
Reprinted February 1990

Extracts from this book may be reproduced by non-profit organizations and
by magazines, journals and newspapers, with acknowledgement to the
author.

.-Si
a

The contents of this book have been reviewed and approved by the National
AIDS Control Programme of Uganda.

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LIVING
POSITIVELY
WITH AIDS

The AIDS Support
Organization (TASO), Uganda

CONTENTS
Introduction.........................

. . . 1

AIDS in Uganda

................

. . . 3

Origins of TASO................

. . . 4

Language ............................

. . . 5

......................

. . . 5

...............................

. . . 7

Staff ......................................

. . . 8

Medical care ......................
Children’s clinic ................

. . . 9

. . . .

. . .12

.........................

. . .14

Material assistance............

. . .17

Orphans...............................

. . .18

Training...............................

. . .19

Counselling the counsellors

. . .20

Funding...............................

. . .21

The future.........................

. . .23

Conclusion

......................

. . .25

Appendix: Training Courses

. . .26

Further reading................

. . .30

......................

. . .30

Order Form......................

. . .31

Organization
Clients

Hospital admissions
Home care

*
Photographs: Carlos Guarita

Cover and design: Alan Hughes and Brendan McGrath

Typesetting: Wendy Slack and Kate Stott
Illustrations: Clive Offley

Printed by Parchment Ltd, Oxford, U.K.

References
Edited and produced by G & A Williams, Oxford, U K

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. . .11

ACKNOWLEDGEMENTS
i
no to the clients, counsellors and medical workers of
TA^Tfor giving their time, knowledge and friendship to the author

wnite researching this book.

MMM

most grateful to Dr Sam Okware, Director of the
We a-e also
AIDS Control Programme, for his support and encourageUgandan
meat.

Organization's Global Programmme on AIDS has
P'ovX generous assistance to make this book as widely available

as possible-

NOTE
Tbe names of

TASO clients mentioned in this book have been

changed.

'*■ I

3
Keeping busy is part of living positively.

Introduction
The AIDS Support Organization (TASO) is
the first organized community response to
the AIDS epidemic in Uganda. Founded by
a group of volunteers in late 1987, TASO
now provides over 2,000 people with HIV
or AIDS, and their families, with counsel­
ling, information, medical and nursing care,
and material assistance.
Most TASO workers are themselves
people with HIV or AIDS. They know that
they may not have long to live. Yet TASO
is not pervaded by gloom and despair. On
the contrary, it is an organization in which

there is an amazing amount of laughter,
good humour, and infectious enthusiasm.
There is always a sympathetic ear to listen
to personal problems and a shoulder to
weep on if necessary. But TASO’s workers
have an overwhelmingly positive approach
to life. They embody the organization’s
commitment to ‘living positively with
AIDS’.
This book is about that commitment, and
how it can be translated into practical action
in the face of the prejudice, discrimination
and fear that have been generated by the
threat of AIDS.

Positive Living
TASO’s slogan is ‘Positive Living with AIDS'. In practical terms
this means:

* Not blaming anyone.
* Not feeling guilty or ashamed.
* Having a positive attitude towards oneself and others.
* Following medical advice by:

- Seeking medical care quickly when infections such as bronchitis,
thrush and skin sores appear. Every time a person with AIDS gets an
infection, the body’s resistance to AIDS is further lowered.
- Not smoking or drinking alcohol, which lower the body's resist­
ance to disease.
- Eating plenty of food which is rich in proteins, vitamins and carbo­
hydrates.

- Getting enough sleep and not getting overtired.

* Taking enough exercise to keep fit (but no strenuous exercise).
* Continuing to work, if possible.
* Occupying oneself with non-stressful activities such as crafts.
* Receiving both physical and emotional affection.
* Socialising with friends.
* Receiving counselling to maintain a positive attitude and talk
about feelings, whether angry, sad. blaming or hopeful.
* Always using a condom during sex, even if both partners know
they are HIV-positive, in order to prevent pregnancy and avoid catch­
ing any other sexually transmitted diseases, which would further
lower immunity to disease.
* Avoiding pregnancy because it lowers the body's immunity and
can hasten the onset of AIDS in an HIV-positive woman.

infection are increasing.
aids in Uganda
The first cases of acquired immune
AIDS is an expensive disease. The
deficiency syndrome (AIDS) in Uganda medicines are costly, and patients are un­
were reported in Rakai District, to the west able to work but need more food. Many
of Lake Victoria, in 1982. Since then the Ugandans with AIDS never get to an AIDS
number of cases reported each month clinic because they are too poor or too weak
nationwide has doubled every six months. to travel and wait in a long hospital queue.
By December 1988 over 5,000 cases had Better-off patients tend to live longer and
been reported to the national AIDS Control enjoy a better quality of life because they
Programme, but these are only a small can afford to buy nutritious food and to pay
for medical care and drugs.
fraction of the total.
For the people of
The number of
Uganda, AIDS is part
people infected with
SUDAN
of a cumulative
human immunodefi­
catastrophe. The
ciency virus (HIV) country’s economy
the virus which
and social infrastruc­
causes AIDS - is
ture are only just be­
many times greater
ginning to recover
!<
than the number of
from nearly 20 trau­
AIDS cases. Surveys
UGANDA
matic years of civil
in some urban areas
war and unrest. The
of Uganda have ZAIRE
damage has been
found 15-25% of
enormous and re­
people in the sexually
covery is painfully
active age group to be
j
infected.2 At the
Hospitals and
KamPa,aX^^yKENYA slow.
health centres are
Mulago Hospital in
Masaka •
run-down, and essen­
Kampala, the pretial drugs and equip­
|i T&p valence of HIV infecment in short supply
tion among patients
J
Lake
or non-existent.
admitted for medical
Victoria
Many health profes­
f ; y treatment increased RWANDA
sionals have either
A from 10% in late
left the country or
1986 to 50% two
■ o i|
TANZANIA
taken other jobs be­
|j
years later.’
In Uganda, as
cause their salaries
elsewhere in Africa, transmission of HIV is were so low. There are, for example, only
I
I
iK
mainly through heterosexual intercourse five doctors for every 100,000 people.
I.
and from mother to unborn child. Men and
The Ugandan health services, on their
■
. women are affected in equal numbers. own, cannot possibly cope with the rapidly
■ i’.
AIDS in Uganda affects all members of the escalating numbers of people with AIDS
family - either directly or indirectly. (In who need medical and nursing care, as well
,
the industrialized world, by contrast, as social, psychological, and material sup­
-!1 i
:
/AIDS affects mainly single people.) The port. Government services need to join
age of first being diagnosed HIV-positive forces with community organizations in
I
ranges from around 18 to 30 years for caring for people with AIDS and their
.1 women and from 17 to 37 years for men. families. That is why the emergence of an
.^p The numbers of children bom with HIV organization such as TASO is so important.

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________

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at

Origins of TASO
TASO has its origins in a small group of
people who began meeting in one anothers’
homes in Kampala in October 1986. The
group consisted of a truck driver, two sol­
diers, a veterinarian’s assistant, an office
boy, an accountant, a physiotherapist, a
nurse, a school teacher, and a social

scientist. All but one had HIV or AIDS.
They met to exchange information, to give
one another support and encouragement,
and to pray.
In January 1987 one member of the
group. Chris Kaleeba, died. His wife
Noerine (see panel) was devastated:
“I just went to pieces. I knew that Chris

Noerine Kaleeba
Director of TASO
In June 1986 Noerine Kaleeba’s hus­
band, Chris, was taken critically ill while
studying at Hull University in England. 11 •
“The British Council brought me to be
with Chris while he
was in hospital for
four months. He was
the first Al DS patient
at
Castle . Hill
Hospital, and the
staff were marvel­
lous, so kind and
compassionate. I
met the ‘buddy’
group* in Hull and
for three weeks
Chris, our ‘buddy’ and I talked of nothing
else. It was easier for us because we
realized that Chris must have contracted
HIV from a blood transfusion after a bus
accident in 1983. But whatever the exact
cause of HIV transmission, it’s the effect
that has to be dealt with. There’s nothing
to be gained from blaming one another or
feeling guilty.
hris wanted to come home to die,
so in October 1986 he arrived at Entebbe
airport to be greeted by a crowd of family
and friends. Most were well-wishers, but
some had come only to see what he
looked like. He was just strong enough to
walk out of the plane.
“We tried all the herbal medicines we
could find for three weeks. He drank them

.

by the jerry-can full! We never tried witch­
craft, which some people suggested.
Finally he said: ‘Enough, we aren’t
achieving anything. I'm drinking so much
herbal medicine that
I have no appetite
for food. I must eat
good food. Let’s
plan what to do
when I go.’
“There really
wasn't much sup­
port here in Uganda,
except from both
sides of the family.
But even they didn’t
fully understand what was happening.
They could give emotional support but we
were short of medicines and material
support. There was stigmatization from
friends and neighbours.
“The idea of TASO originated from the
example of the doctors and nurses who
looked after Chris in Britain - the kind­
ness and care they showed him, despite
the fact that he was a foreigner and had
5.IDS. We were also impressed by what
we had seen in Britain of the Terrence
Higgins Trust and the ‘buddy’ system of
counselling.
“My Christian faith was strengthened
by this experience. Though there have
been many times when I have said ‘Why
me, God?”’

•Volunteers who provide support and counselling to people with HIV/AIDS.

4

was going to die, but when it happened it
was just too much. I took my children and
left Kampala to go and stay with my
parents.”
Three months later, when she returned
to Kampala. Noerine Kaleeba was deter­
mined to do something practical to help
people with AIDS and their families. The
group which she and Chris had helped to
start began meeting once more, and a few
new members joined. When TASO was
formally established in November 1987, the
group consisted of seventeen people,
including twelve who had HIV or AIDS (all
of whom have since died).
The founding members of TASO had no
training in counselling or experience of
managing an AIDS support group. There
were no precedents for such groups in
Africa from which they could learn. They
had no office, no transport and no funds. But
what they did have was initiative, vision
and a deep commitment to practical action
on behalf of people with HIV and AIDS,
who were being neglected by the health
services and ostracized by the rest of
society. It was this combination which
persuaded two British organizations ActionAid and World in Need - to provide
TASO with the funds to get started.
ActionAid also arranged for two found­
ing members of TASO to participate in a
one-week training course for AIDS
counsellors in London.
All those involved in starting TASO
were practising Christians who regularly
prayed together, but they made a conscious
decision to make TASO a non-religious
organization:
“We want to be open to everyone,” says
founding Director Noerine Kaleeba.
“Everyone should feel equally at home in
TASO.”
Although TASO is a non-governmental
organization, another key factor in its estab­
lishment was the open and constructive
attitude of the Ugandan Government.
“One cannot rely on government fund­
ing, but the government’s blessing is

necessary," says Noerine Kaleeba. “We
have been very fortunate. Uganda's
National AIDS Control Programme is run
by creative and adaptable people, with a
helpful attitude."

Language
At TASO the word ‘AIDS’ is rarely used.
People with HIV or AIDS are described as
being ‘body positive’. They are referred to
as ‘clients’, never as ‘AIDS victims' or
‘AIDS sufferers’. The term ‘patient’ is used
only if a client is admitted to hospital.
TASO is also sensitive to words like
‘catastrophe’, ‘plague’, and press state­
ments such as ‘This person is going to die'.
“We are all going to die sometime, so
why pick on a few of us?” said one TASO
client. “I have already lived longer than my
father, who died of malaria.”
Some TASO clients are also annoyed by
government slogans such as ‘1 said NO to
AIDS’:
“No one has ever said ‘Yes to AIDS’.'
says Susie, a TASO client and counsellor.
“None of us have asked for it. Most of us
who have it now had never even heard of it
when we caught it. You cannot attach blame
or assign guilt to anyone. It doesn’t matter
who was responsible - the husband or the
wife or the blood transfusion. The import­
ant thing is to think and live positively.”

Organization
TASO has two offices-one in Kampala and
the other in Masaka, 80 miles to the south­
west. These are open from Monday to
Friday and clients can come without an
appointment. Most counsellors, however,
work only part-time for TASO, so clients
make an appointment if they want to see a
particular counsellor. A file is kept on every
client, with details of hospital admissions,
medical treatment, material support, visits,
and family conditions. Clients are allowed
to read their own files.
TASO Kampala’s office is a modest.

5

Clients
TASO's clients are people with HIV or
AIDS, and their families. In March 1989
there were 140 adult clients registered with
TASO Kampala and 85 with TASO
Masaka. Some male'clients may have
wives and families living in distant rural
areas who may also be infected with HIV.
but are not registered with TASO.

'ij r fl

TASO Kampala works within ten miles
of the city centre, so their clients are urban
and mostly of middle or low socio­
economic status. Most are referred to TASO
by the two AIDS clinics at Mulago
Hospital, and some by other hospitals or
private clinics.
TASO Masaka’s clients are mostly
rural, subsistence farmers referred from the

Eddie
TASO client and counsellor

Tea and friendship are always available at the TASO day centre.

unmarked room in Mulago Hospital, a col­
lection of run-down buildings near the
centre of the city. A separate building,
known as the ‘development unit’, is used as
a training centre and a meeting place. Also
in the hospital grounds is a day centre where
TASO clients and their families can meet.
People come together at the centre to make
friends, share information and express their
feelings in a safe, friendly atmosphere.
Lune! . provided every day for clients,
visitors, and any TASO workers who hap­
pen to be present. Taking meals together is
an imponant part of demonstrating that HIV
is not transmitted by sharing cups, plates
and other eating utensils. Every Friday, all

6

TASO workers come to the day centre to
share a meal with co-workers and clients,
and to exchange ideas and discuss
problems.
The day centre is also equipped with
four treadle sewing machines which clients
use to make clothes and sheets for sale. One
client, a talented artist, makes batik hang­
ings which are sold to benefit both the client
and TASO.
Places for rest are available for anyone
who feels tired and needs to lie down for a
short while. Young children are always
welcome: their numbers are greatest on
Fridays, when the AIDS clinic for children
held at the hospital.

Eddie is 37, an economics graduate of
Makerere University, Kampala. In 1981
he and his wife went to Nairobi for further
studies, returning in 1985. A year later his
wife had a recurrent
fever.
‘The fevers sub­
sided fora while, but
she kept swelling in
different parts of her
body. She was ad­
mitted to hospital in
Kampala
with
typhoid. Soon after
she came out of hos­
pital, still weak, I
visited a friend who told me about AIDS.
The friend suggested that I should be
tested for AIDS. I was found to be HIV­
positive.
“I had never heard of AIDS or HIV
before, and I didn’t know what to do.
When I went to the doctor for the results,
I couldn’t believe it. He just said, ‘Well
there you are, you're positive. You’ve got
AIDS, so there is nothing I can do. Too
bad.’ I felt like committing suicide.
“I came home after several hours and
during supper I told my wife about the
test. After that we cried together. Then
she was tested and we found out she had
it too. Her relatives wanted to take her to
a traditional healer, but we couldn't tell
them the truth.
“I was with her all through from the

start to the finish. She died a few months
ago, at home. I’ve now lost a lot of weight
and my skin is often septic with sores. I
am too tired to work. At first I didn’t want
anyone to know that
we had this disease.
I even worried about
being seen going to
the clinic. Then I met
two friends there
and we talked about
it together. Now I
don’t care who
knows. I feel that my
experience might
help others in show­
ing them that hiding is no use.
“The children are my main worry.
They are nine, five, and three years old
now. The young one is always sick, she
has a fever and diarrhoea a lot. I’m sure
she has AIDS too, but I can’t bear to get
her tested. We are very close to each
other. I know now that I will die before I
can bring them up, so what will happen
to them then?
“I often wonder who brought the dis­
ease into the family. I lie awake at night
wondering, which of us is to blame? It
might have been either of us I suppose.
But now I have joined TASO I am trying
not to blame anyone, myself or her. OK,
I have the disease, but I am going to use
my skills and experience to help other
people before the disease gets me.”

7

5

AIDS clinic at Masaka Hospital. Some
clients come straight to the TASO office
after hearing about the organization from
friends, and TASO then refers them to the
AIDS clinic in the local government
hospital for diagnosis.
Some clients want TASO to take over
responsibility for everything - finances,
food and housing, as well as emotional
stress. TASO does not have the resources to
do this, and in any case does not want to
become simply a ‘hand-out’ organization.
"The main objective,” says TASO
Director Noerine Kaleeba, “is to help
people to come together and discuss things
and feel accepted. The sense of belonging
restores their dignity. It’s much better if
they can come out and have some activities
and friends. Otherwise quite a few would
just give up.”
But not everyone who is offered coun­
selling and other support from TASO takes
up the offer. AIDS carries a powerful stig­
ma. fuel led by fear and ignorance, and some
people are afraid that TASO will tell their
employers, or that their workmates or
neighbours may learn that they are HIV­
positive. Others fear they will be asked too
many questions, or be blamed for contract­
ing the disease. Some try to deny they have
AIDS by moving house and changing their
jobs, or even their names. (They may then
continue to spread the virus through sexual
activity.) Others reject the offer of counsel­
line and medical care in the belief that it
cannot help them. Some believe they have
been bewitched or have not observed the
correct rituals, and so seek treatment from
'witch doctors’ or traditional healers. Many
ignore the problem until they are too ill to
make plans for their families.
Confidentiality is of prime importance
to all TASO clients. There is no sign outside
the TASO office, and only one of the orga­
nization's four vehicles is identified as
belonging to TASO. Several clients have
s|K'cifically asked that this vehicle should
not c ie near their homes. Some clients are
able to ork through the initial fear of being

8

identified as a person with HIV or AIDS.
Others, however, risk losing their jobs and
homes, or being rejected by their spouses.
Noerine Kaleeba is well-known in
Kampala as the Director of TASO, so she
reassures new clients and counsellors that,
for their own privacy, she will not greet
them in public places:
“Everyone knows what I do, so if some­
one sees me giving you a hug, they may start
spreading rumours.”

Fred
TASO client and office messenger
Fred is 26 and was a taxi driver. He is
married with four children.
“I started to get severe fevers and was
admitted to hospital
for a week. Event­
ually I was too weak
to drive any more. I
suspected I might
have AIDS, but I was
afraid to find out.
Then I came to
TASO and they
counselled
me
about the test. So I
wasn’t so afraid to
have my blood taken. When I found out I
had the virus, they were very good to me.

Staff
TASO Kampala employs seven full-time
staff and 17 part-time counsellors, trainers
and advisors. The full-timers consist of the
Director (Noerine Kaleeba), an accountant,
a publicity officer, an administrator, a sec­
retary, a driver, and a cook/cleaner. The
part-time workers consist of a medical
adviser, three counsellor/trainers, 12 coun­
sellors and an honorary legal adviser.
TASO Masaka employs a part-time
medical adviser and a full-time office mess­
enger. The 12 part-time counsellors in
Masaka include two nurses, a social worker,
a medical assistant, a school teacher, and
several unemployed people with HIV or
AIDS.
TASO follows a policy of actively
recruiting people who are HIV-positive,
especially as counsellors. Many first come
into contact with TASO as clients and then
decide to become actively involved in the
.. .1 more
organization., They
falloften
ill than
healthy people and several have died since
starting work with TASO. This causes a
lack of continuity in TASO’s work, but
Noerine Kaleeba believes that the advan­
tages of employing people with HIV far
outweigh the disadvantages:
“People with AIDS are a special asset to
TASO as counsellors. They are closer to the
clients and make them feel more normal.
They can talk from personal experience of
the emotions and problems caused by
AIDS, and can help people overcome
them.”

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Counsellors have about ten clients each,
whom they visit at home once every week
or fortnight. A counsellor remains with the
same client from the diagnosis of HIV in­
fection until death. Even when a client has
died, the counsellor remains in touch with
the family, which may contain other people
with AIDS or orphaned children.
Counsellors are accountable to their clients,
but also report to the TASO doctors, their
supervisors, and the office administration.
All counsellors first have to complete a
four-day induction course run by TASO’s
own training staff (see Appendix). They are
paid 1,200 Ugandan shillings (US$4.80) a
day, and also receive a free lunch and trans­
port to their clients’ homes. Counsellors
who are HIV-positive continue to receive
material support such as eggs and school
fees for their children.
Once a week all counsellors meet for a
whole afternoon to discuss the progress of
their clients as well as their own problems.
The stress of working with terminally ill

Then they employed me as the TASO
office messenger. My mother had ten
children. I’ve lost two brothers to this
disease, butthey did
not have any sup­
port. They left seven
children between
them. Two more of
us are HIV-positive
and we have 16
children between
us. I haven’t enough
money to make sure
my children will be
OK. There is nothing
left to sell. My mother always cries when
she sees how thin I’m getting.”

patients can lead to conflicts requiring
quick resolution.

Medical care
Medication is provided free to clients under
medical supervision, as long as supplies (or
funds to purchase them) are available. The
drugs are given out at the TASO office, at
the AIDS clinics in hospital, and on home
visits. TASO receives some drugs as dona­
tions and purchases others locally.
Drug supplies, however, are far from
adequate. In 1988, for example, TASO
budgeted $5,000 for expenditure on all
drugs, but eventually had to spend $8,000
on supplies of a single product, Nizoral (for
the treatment of oral thrush), which cost 500
Uganda shillings (US$2) per tablet on the
open market.
Some TASO clients have reported relief
from certain AIDS symptoms after taking
herbal medicines, but these have not yet
been tested scientifically. Research on

9

0

ceric:'
now

?ieparanon''. however.

IS

branches lune a
5 Alic a token sum ot
ad\ ’-eShL;.- z LS5> a month for attending
re to three morning" a vv eek.
TASC i
_ _____ TASO client nee<K urgent
and v-e-estr
mediJi. >r.en:.<'r.. Tbev aFo run xepmak
HIX i:____ for adult" and children
once i -oe». r hospital, seeing up to 45
pal lem
D- E... Krabira. who t" the medical
adv is-; TASO Kampala. aFo work" as a
phvsir^r. a: Mulago Hospital and as a
Lecicrer ir. Medicine at
Lniv—srv. Wren he fuM "Ct up an A >
clinic a Mui^o Hospital in late

manv of his colleagues were sceptical:
“Health workers knew there was no cure
for AIDS, so they assumed that people with
AIDS didn't warrant any medical care. We
started the AIDS clinic to show what could
Ih' done. We had to demonstrate to patients
and health workers alike that people with
AIDS who come in very sick can leave the
hospital walking.”
Dr Katabira's AIDS clinic has been
inundated with patients. By February' 1989
he had seen a total of 850 adult patients 55' < men and 45% women. The most com­
mon sv inploms were weight loss, recurrent
fevers and diarrhoea.
Dr Sam Kalibala is the medical adviser
to TASO Masaka. Since his HIV/AIDS

50:^:: v

Dr Elly Kat^Tpnescribes

for . mother and her HIV-positive child.

clinic opened in November 1988, the
number of new clients has doubled every
week. Working with TASO has changed his
approach to treating people with
HIV/AIDS:
“I used to see people with AIDS, but
before coming into contact with TASO I
didn't know what to do. I didn't know what
to tell them because I felt I couldn’t do much
for them. So we were hiding the diagnosis.
It was too painful to tell them. But when I
heard about positive living with AIDS, I
saw there was something that could be done
- for example, by counselling people before
and after the HIV test.''
Patients are usually referred to an AIDS
clinic on the basis of their clinical history.
The doctor at the clinic takes the patient’s
history and either makes a clinical diagnosis
or offers the patient an HIV test. If the
patient agrees to undergo the test - and
providing HIV test kits are available at the
time - a blood sample is taken. The result is
usually available a week later. If the test is
negative, a TASO counsellor explains how
the patient can avoid becoming infected
with HIV. If the patient asks for condoms
the counsellor provides some free of charge
and also explains how to use them correctly.
If the result is positive, the doctor
explains the implications to the patient:
“When I make an AIDS diagnosis,” says
Dr Katabira, “I have to tell the patient that
there is no cure for the virus, but there is a
lot that can be done to treat the infections
that may come along as a result of HIV
infection. The period from HIV infection to
death is usually less than two years, but it
may be up to five years.”
TASO counsellors are also on hand at
the clinic to offer clients counselling and
other support. Often, however, the clinics
are packed and if only one or two counsel­
lors are on hand it is impossible to meet and
talk with all potential clients. At the time of
the initial diagnosis clients are usually in
such a state of shock that in-depth counsel­
ling is not possible. Counsellors concen­
trate on reassuring them that they are not

__ L

about to die, and arrange to visit them at
home within the next week.

Children’s clinic
An AIDS clinic for children is held every
Friday morning at Mulago hospital in
Kampala. Over 140 children with
HIV/AIDS are registered with the clinic,
and more than 30 are brought for diagnosis
or treatment every week.
Most of the children are babies or tod­
dlers. Babies infected with HIV develop
AIDS more quickly than adults. Few sur­
vive beyond the age of two years, and many
die before being diagnosed as having AIDS.
Most die within a year of birth, often of
dehydration or malnutrition due to repeated
diarrhoea and other infections. Many are
not brought to the AIDS clinic until they are
already close to death.
TASO counsellors talk with mothers as
they sit on a low wall, suckling their babies
before seeing the doctor. The nurse calls the
mothers into a small room where Doctor
Laura Guay sits close to them, clicking and
smiling at the babies. She asks the mother
how the baby is this week and examines the
baby gently, feeling for swollen lymph
nodes, listening to the chest, and looking in
the mouth for thrush. Many babies require
ampicillin for chest infections, others are
given oral rehydration salts for diarrhoea.
Whenever the drugs run out TASO provides
whatever it can until the hospital’s supplies
are replenished.
Blood tests are usually necessary to
diagnose HIV infection in babies and young
children because the symptoms of AIDS in
young children are similar to many other
children's diseases. But taking blood often
involves a struggle. Doctors and nurses may
have to take blood without the protection of
rubber gloves simply because there are not
enough gloves available. Inevitably, blood
is spilt from time to time. Dr Katabira insists
that the safety risk is negligible:
“It's quite safe as long as you wash your
hands well with soap and water afterwards.

11

I

LIBRA PV
(
>

AND
DOCUMcNTATinM

li

5

Susie
TASO client and counsellor
Susie, 24, took ’O’ Levels at school
and then got married. By 1986 she had
two children. Her third child died a few
days after a premature birth. During her
fourth pregnancy
she was sick a lot.
The baby was born
at full term but
became sick after a
week. Susie was
also ill and they were
both admitted to
hospital. Sickle cell
disease was diag­
nosed shortly before
the baby died. Susie
recovered but was then readmitted to
. hospital with typhoid.
“When I found I was HIV-positive, I
did not know what to do. My neighbour
got AIDS and she tried to kill herself and
her children. I too felt like taking poison.
I looked so ill. I couldn’t walk or do any­
thing. Then I heard about TASO and
since then everything has changed. I feel
much better now. When I am sick they
support me and are kind. They give me
medicines and some food. The counsel­
lors never neglect you, they support you
through everything. My children are my
main worry, the school fees are so high.
I am hoping that TASO can help with
that. My relatives could look after them,
but they need help with food and school
fees.
“My husband has gone now, I don’t

The main danger of infection is not from
HIV but from diseases such as TB, hepatitis
or typhoid.”
All the mothers of babies and young
children with AIDS are themselves HIV­
positive. They may discover this only when
their babies are diagnosed.

12

know where. When he knew that both my
co-wife and I had AIDS, he just went. He
must have it too. I still live together with
my co-wife and her children. She has two
children alive. Three
others died.
“Up to now, my
parents don’t know.
I will go and tell them
myself soon. I don’t
want them to find out
from someone else,
but I have to be
strong enough to
cope for them as
well as for myself.
They have paid out so much forme, but
now they will get nothing back. I cannot
help them in their old age. The people we
share a house with wouldn’t let us live
there if they knew. They have said in front
of us ‘If anyone had AIDS, we would
throw them out’. So we can’t tell them, but
they will suspect eventually. I hope that
TASO will helpihem to realise that it is
not a threat. We are suffering more from
this disease because of people’s ignor­
ance. It is bad enough without ignorance
as well. But we have to fight the virus, so
we can live longer."
Susie attends the day centre most
days, but sometimes she is too weak to
work as a counsellor. She has been
coughing for three months and frequently
has diarrhoea and vomiting with
headaches.

able. Surgery, however, is used only very
sparingly because of the risk of precipit­
ating AIDS in a person with HIV infection
by further weakening the body's immune
system.
Mulago Hospital does not systemati­
cally test in-patients for HIV infection.
However desirable it might be to do so.
there are simply not enough AIDS testing
kits available. Diagnosis is usually done on
the basis of a physical examination. Many
hospital patients are admitted, treated and

discharged without the staff knowing that
they are infected with HIV. Nurses are not
issued with gloves for general nursing care,
but are taught to be careful and to wash their
hands thoroughly after contact with
patients.
The hospital does not have a special
AIDS ward. Dr Katabira believes that such
a ward is not justifiable and could lead to
other problems:
“A special AIDS ward would increase
the stigmatization of people with AIDS.

*«a

Hospital admissions
People with AIDS are admitted to hospital
whenever they require in-patient treatment,
which is given free of charge. Severe dehy­
dration after diarrhoea or vomiting is the
most common reason for admission. Most
diseases associated with AIDS are treat-

Noenne Kaleeba counsels a mother at the children’s clinic.

13

0

A Hospital Visit
Sally lies in her bed in the passage of the
mixed medical ward. She has no sheets
and the mattress is stained and worn. A
thin blanket covers her emaciated body.
Most of the other patients have a relative
sleeping under the bed, their cooking
pots and blankets piled around them.
Sally has no-one. Her relatives simply
brought her to hospital and left her.
Mary, a TASO counsellor, brings her
eggs and some anti-lice shampoo.
“These mattresses are full of insects,”
she explains.
Sally receives free medical care, but
TASO has to pay a hospital orderly to
make up a flask of tea every morning and
wash her. She can barely raise her head
to sip the tea.
“We used to see a lot more like her,”
says Mary, “but now relatives are learn­
ing that there is no danger in caring for
people with AIDS. Many relatives are a
lot more caring than some health
workers.”
In the next ward lies Rejoice, aged 18.
As Mary approaches she tugs her blouse
over her bare chest, but there is nothing
to hide. Her ribs stick out through the
sagging skin and her breasts have with­
ered away, leaving just flat nipples. She
can’t sit up, but smiies with pleasure to
see Mary. Rejoice’s mother takes the bag
of eggs, milk powder and soap. She has
already lost one daughter to AIDS, and

These patients are no more of a risk in a
general ward than other patients. We be­
lieve that all patients should be nursed and
managed in the same way, as if they were
all HIV-positive.”
In any case the problem of AIDS is
already too enormous to be dealt with by
separating AIDS patients into a single hos­
pital ward. In Kampala alone it would be
necessary to allocate up to half of all hospi­
tal wards to AIDS patients, and there are no

14

has been with Rejoice ever since she was
admitted to hospital. Rejoice’s 12 yearG.d brother comes in smiling, carrying the
day’s shopping and clean bedding. He
will sit and read to his sister while their
mother takes the bedding home to wash.
The children’s ward smells strongly of
urine and the noise is deafening. The
mothers are lining up with their babies
and children for injections. Some are so
thin there is barely enough flesh for a
needle to penetrate. By the window lies
Karen, aged 14 months, a tiny body in a
large metal cot. Karen is dying of AIDS.
She weighs a mere 6.5 kilos - the weight
of a normal 3 month-old baby. Her
mother sits beside her, their belongings
under the bed. Six weeks ago Karen was
well and just beginning to walk. Then she
had a fever, diarrhoea and vomiting. Now
she can’t even sit up, let alone crawl. A
tube is taped across her face, leading into
her nose and down to her stomach.
Karen’s mother expresses breastmilk
into a cup and feeds her through the tube.
Karen’s mother knows that she must
be HIV-positive too, though she is not yet
ill. She is already concerned about the
future for her other two children after she
dies. Mary reassures her that she is not
going to die soon, but TASO will help with
the other children if the need arises in the
future, as long as the children can stay
with relatives.

valid medical grounds fordoing this.
“Every AIDS patient," says Dr Katabira,
“is admitted with a different problem. They
cannot all be lumped together."

Home care
TASO counsellors try to visit clients once a
week at home, unless clients prefer to come
to the TASO office. Counselling is done in
the local language whenever possible.

I

TASO counsellors spend a great deal of
time listening to clients and their families
talk about their problems. Rather than pre­
scribing solutions, they aim to provide their
clients with information about how they can
look after themselves and lead positive
lives. Noerine Kaleeba is convinced that
this approach is effective:
“People with HIV can live positively by
gaining morale, rather than giving up. They
can choose to eat good nutritious foods, and
not to smoke or drink alcohol. They can get

I
7',=

*
i

I

immediate medical care for every infection.
Through positive living, people with HIV
can make the most of their remaining time
and even extend it."
Home care has many advantages over
hospital care. It enables the counsellor to
assess the client’s social and economic
situation. It also helps to break down or
prevent the sense of isolation experienced
by many people with HIV and AIDS. Home
care also brings the counsellor into contact
with other members of the client's family.

Home Visits (morning)

Godfrey’s first home visit of the day takes
him to a township on the outskirts of
Kampala. The TASO vehicle stops under
a banana tree. Godfrey and the driver,
Sam, climb out and walk past a patch of
sweet potatoes to Sandra’s house. There
.are six outside doors, each one leading
/ into a dark, windowless room with an
earth floor and bare mud walls.
Sandra appears from behind the
house, where she has been tending the
cooking fire. She is tall and very thin. Her
face is so wizened she could be any age.
Her prominent cheekbones emphasize
the depth of her eyesockets. She has
only one child, four year-old Rosie.
After the formal greetings, Sam sits
under a tree and plays with Rosie and her
cousins, while Godfrey goes inside the
house with Sandra. She shares a room
with Rosie and a young niece. There are
22 members of this extended family,
ranging from a six day-old baby to two
grandmothers in their seventies. Godfrey
gives Sandra eggs, milk powder and a
bag of clothes for Rosie.
Sandra and Rosie were living in a
rural area until they were called to
Kampala because her husband was sick.
By the time they arrived, he had died .of
‘unknown causes’. Soon afterwards
Sandra fell sick, and was too weak to go
back home. By this time the family sus-

pected that her husband had died of
AIDS. Afraid that they would catch it too,
they isolated Sandra. She had to stay in
one room, with her food left at the door.
No-one spoke to her. She lay on the floor,
with diarrhoea, vomiting and headaches.
One day she was so bad that her relatives
carried her to the main road and took her
by bus to the hospital. She was admitted
and the doctor diagnosed HIV infection.
A week later, when she was feeling much
better, she learned about TASO through
Godfrey, who had been appointed her
counsellor. He realised that his first task
was to counsel the family and show them
that there was no risk to themselves. As
a result, Sandra now shares their food,
and sits and talks with them. Now that she
receives medical treatment as soon as
she is sick, Sandra feels well most of the
time. She often goes to the TASO day
centre and sews hospital sheets. She has
been admitted twice more to hospital,
and although she gets thinner and a bit
weaker each time, her spirit remains
strong.
Rosie has been tested and is free
from HIV. When her mother dies she will
not have the additional stress of moving
elsewhere. She already has a home and
a family who care for her, with aunts
young enough to be around until she
grows up.

15

Home Visits (afternoon)
After lunch Godfrey visits a block of flats
near the centre of Kampala. Michael lives
here in two small rooms with his wife, six
children (aged from four months to 12
years), his sister and her three children.
There is no electricity and the nearest
water is a tap in the next street.
Until a year ago Michael worked in a
; factory and the family lived in a better
home. But when he started to become ill
he lost his job and he fell behind with the
rent. When they were thrown out he had
> no choice but to move in with his widowed
; sister. She is a market vendor, selling
-i cakes which she makes on a charcoal
burner in the street outside.
The children run in and take Godfrey’s
hand while he talks to Michael and his
wife, Franny. Franny feeds the baby, who
r is bouncy and chuckly, even though she
It? is HIV-positive. So is two year-old Henry.
The other four children are free of the
; virus.
Michael is worried because the shin­
gles have returned on his body. The rash
itches all the time and he can't sleep at
night.
“Are you both eating well?” Godfrey
asks.

i

• home vtsft a TASO c
ckrthes or toocL

16

is not transmitted

Ugandan families have been caring for
their sick relatives for generations. There is
a great deal that family members can do to
protect the health and prolong the lives of
their loved ones with H1V/AIDS. By adopt­
ing a loving, positive attitude, they can help
to maintain the person's morale. They can
also make sure that the person eats well and
gets prompt treatment for infections.
First, however, family members need to
be reassured that they are not at risk of
contracting AIDS through casual contact
with the infected person. The TASO coun­
sellor demonstrates this in practical ways —
forexample by sharing cups, eating utensils
and food with the client. Relatives may also

“We try to, but with twelve mouths and
only the cake money, there isn't much to
go round."
Godfrey says he will bring more-food
on his next visit, but meanwhile Michael
should come to see Dr Katabira for some
medication for the skin rash.
Franny offers Godfrey some tea, but
he has other visits to make and leaves,
the children all laughing and shouting
goodbye.
Further down the dirt road lives Mrs
Owagi in a small earth house. A year ago
her widowed daughter died of AIDS,
leaving two children aged four and five.
Her daughter was a TASO client, so
TASO now pays the children's school
fees and also brings them soap, eggs,
milk and clothing. Mrs Owagi does not
know how old she is, but her bones ache,
especially when the rain pours down and
water rushes straight off the road into her
house. Whenever she wants drinking
water she has to buy it from a water
carrier or fetch it herself.
“I don’t know what we would have
done without TASO,” she says. “But even
so 1 worry about when I go. The children
are so young."

be worried about bedding and clothes which
become soiled with faeces or blood. The
counsellor demonstrates how to make these
items safe by soaking them in a bleach
solution or simply washing them with soap
and hot water and drying them in the sun.
Both methods kill the virus.

Material Assistance
Each TASO client receives free of charge
30 eggs a month and four kilos of milk
powder. Other foods such as cocoa-mix.
baby porridge and flavoured drink powder
are handed out as and when TASO receives
them. This is not entirely satisfactory as the

supply is erratic and the food is no:
nutritionally sound.
Second-hand clothes, whenever avail­
able, are also given to families according to
need. Condoms supplied by USAID are
provided free. TASO has also produced a
leaflet in Luganda (the main local language
about the use of condoms.4
School fees are paid for some childrer
of TASO clients or deceased clients. E\en
effort is made to keep children at the same
school, unless the cost is prohibitive or the
child has to move to relatives in another
area.

Acme ivlauvcs have rejected
nedl" AIDSbccausetlieydo
|K'« the ‘hsease is spread
'' crixh'tWntiacting it thentsclves.
F- ^Asmnnnnncs the traditional system
has Wvkcn down because so
x-Jis have d.wl that the few survtvl^-^cs a.v sunplv unable Io bear the
Sxeicanug'"1 large nnmlKrsol young

.1

J

|gih
EEl S
■Ji :

^‘-^Xv tyhevs's that orphaned children
a-^ewsito. wuhm laniiliesratherthan
It no relatives are available,
kxa should lv made to place the
^F^tnendsot the deceased parents
oveixcnne prejudice against
X-^'wNvse ivuvnts luive both died of
Orphans
tSClASO helps ehents to .dentify
One of the most agonizing worries of
.Fives o. foends who cun adopt their
people with AIDS is the fate of their
after both parents have d.ed
children after they die. In Uganda it is tradi­
e^xtnwlKMs also evphun to potential
tional for relatives to adopt children whose,
fo^rurems how A<‘* ts spread tn order
parents have both died. In recent vears.

Nurses discuss their feelings about AIDS during an orientation workshop.

to dispel misconceptions and overcome the
powerful stigma associated with the
disease. Together with the Save the
Children Fund. TASO also provides foster
parents with food, clothing and financial
support to enable children orphaned by
AIDS to attend school.

Training
All TASO workers - including drivers and
cleaners - attend a four-day induction
course which covers the basic facts about
HIV and AIDS, explores the emotions of
people diagnosed as being HIV-positive,
and imparts basic counselling skills (see
Appendix). Trainee counsellors start by
watching experienced counsellors at work

18

■

in the AIDS clinics for children and adults,
and later are allocated their own clients.
This course is also open to health professionals, social workers, and religious
leaders. (Twenty nuns, three Catholic
priests, one Protestant pastor and one
Islamic leader have so far completed the
course.) Visiting journalists who wish to
film or write about TASO’s work are
politely but firmly requested to participate
in this course before interviewing TASO
workers or clients.
TASO also offers a 20-week half-time
certificate course in advanced AIDS coun­
selling for counsellors who already have
some training and experience.
In addition. TASO organizes orientation
AIDS workshops of one-to-three days

19

...... s of health and
xaiu'u^ IMVS
•• , community and
Catholic and
A1'""I1 |50
'■
example, have so far
Km.'''"- oikxhops.
'

Coarsening the
COUnS®,,®rJe

AIOS is very

-^«^«l''lsUaln.Allhave
<!',v l(” a,,d most
ends meet.
...... tvs to encourage their
iwmsels. the fact remains

UW I

s is

l0 (jie

^S^diose.-nseih^hoare

__ ________ ________ •

HIV-positive the strain is even greater. Yet
the pressures on them - from clients and
family members alike - are enormous and
unrelenting. Inevitably there are times
when the stress becomes too great. One sign
of excess stress is when counsellors feel that
no-one appreciates their work and there is
no point in carrying on. Stress may also
come to the surface in arguments about
management issues, or how supplies should
be distributed. When everyone is under
stress people do not notice when others are
as well. Counsellors need to feel that their
work is appreciated. They also need
opportunities to share their feelings and
frustrations.
When several counsellors were nearing
the point of ‘bum out’ TASO organised a

IB ^jl

:

Keith
TASO clion* and trainee counsellor
school teacher for 20 were killing people with this disease. We
a]Qistnct, the area in decided that they had a Christian heart,
AIDS.
so they couldn’t want to kill us. I went to
itories of people their office and how I’m training to be a
---- -------------------------------------- 1 counsellor. I was
greatly impressed
by the people there.
They were open,
■TOs ft wKhtwM
friendly and easy to
talk to. They showed
*•*’<**
me not to be afraid
that we are going to
die.
“But I am still
afraid for our people
because there is no
symptoms, so I cure. Friends may run away and abandon
fW* •fcout
disease- you. If they see anyone who might be
from time to time. sick, for whatever reason, the people in
the market say ‘Yes, that one is going.
He’ll be dead soon, you’ll see.’ If some­
one has any slight fever, they say, ‘That
one may now have the insect (virus).
™JuiOirt IW
to 9° «lere'
places Who is she loving?’"

The TASO vehicle delivers food, medication and clothing to clients’ homes.

Quilt Day. Clients and workers (there is no
distinction in the way they are treated)
gathered at the TASO development unit
with pieces of cloth and began to make a
colourful patchwork quilt. Six foot long and
three feet wide, the quilt was to be sent to
‘The Names Project’, which commem­
orates people who have died of AIDS all
over the United States. The TASO quilt is
the first to be made in Africa, sewn by
people with AIDS as their own memorial.

Funding

Since the establishment of TASO in
November 1987, two British organizations
- ActionAid and World in Need - have paid

TASO’s running costs (salaries, drugs, sup­
plies, transport, office administration) and
capital expenditure. In 1988, for example,
the budget was S140,000, of which $40,000
was capital expenditure, mainly for the
purchase of three four-wheeled drive
vehicles. In 1989 TASO expects to spend
approximately $300,000 on running costs
and capital expenditure.
Two US organizations - Experiment in
International Living and USAID - have
contributed funds for training and equip­
ment. In addition. Voluntary' Service Over­
seas (UK) has provided a trainer of
counsellors for two years. The Danish Red
Cross, the German Emergency Doctor
Service, and the Pentecostal Church have

21
20

LIBRARY
DOCUMENTATION

0

t

l|lr;

f

•^‘41 I

I

■ .3
A

Bill
TASO counsellor

i-

I

Bill has been a medical assistant in Rakai
District for 28 years. He has ten children.
“Since the early 1980s we have been
seeing this disease, but at that time it had
no
name.
We
thought it was only
smugglers from
Tanzania who got it,
because they were
bewitched.
But
since we medical
people don’t believe
in witchcraft, we
were puzzled. Then
we saw people af­
fected who were
certainly not smugglers, and who didn’t
move about anywhere. I tried using
strong drugs, but it still reoccurred and
people died. As time went on, there were
so many. It was such a worry, how to
cope with them all. You lose credit be­
cause your patients don’t get better and
die. Some doctors won’t even treat pa­
tients they suspect have AIDS. I’ve also
seen many cases wrongly diagnosed sometimes it’s just a curable disease, but

also provided assistance, and local volun­
tary organizations have held fund-raising
events for TASO.

The future

Role play teaches counsellors how to listen effectively.

22

In the immediate future TASO aims to train
more counsellors to meet the rapidly grow­
ing needs in Kampala and Masaka. TASO
also plans to help establish AIDS support
groups in other parts of the country. Says
Noerine Kaleeba:
“These groups must be initiated by
committed local people. We can show them
what we have done and give them training,
but it is up to each group to run itself

they stop the treatment because they
think it’s AIDS.
“Before TASO started coming to the
AIDS clinics there was no support given
to the patients after
they were told they
had AIDS. Many of
them were very
upset and they just
got up and left the
hospital. The hospi­
tal staff also used
to be afraid of
people with AIDS
and either sent them
away or isolated
them. Now they are cared for just like
other patients.
“Whenever I go home, I get so many
people approaching me for advice. Many
of my people are getting wrong informa­
tion, especially from the witch doctors.
When I retire in a few months time I want
to help the people at home. I lost a brother
and friends through AIDS so I really want
to do something about this great
problem.”

independently. All you need is a willing
doctor, counsellors and commitment.”
Orientation workshops will also be
organized for health professionals - from
orderlies through to senior consultants - at
all hospitals throughout the country, start­
ing with Mulago Hospital in Kampala.
TASO workers are also writing a
booklet on positive living with AIDS, based
on their personal experiences. Also in prep­
aration is a broadsheet explaining the aims
and work of the organization, to be dis­
tributed at AIDS clinics throughout the
country.
The growing demands on TASO’s ser­
vices also mean that there is a need for more

23

Conclusion

Gilbert
TASO client and counsellor
Gilbert, 36, was working as a civil servant although I sometimes have to spend a
few days in bed. I’m glad I landed in
until a year ago.
“I kept falling sick, having fevers and TASO. If I hadn't been here I would have
diarrhoea which went on and on. In thought I was the only person like this.
They understand
December 1987 I
here, so the work
learned I was HIVisn’t too taxing. I do
pr ive. My sister is
get annoyed very
a nurse and she
easily, perhaps berealised what was
cause I get tired, ft
wrong with me. At
The major thing that1®
first she didn't want
keeps me going is '
to tell me, she was
the positive feeling I
afraid of my reaction
have.”
J to the news. She
Gilbert’s wifei?
introduced me to
and
children^
Noerine, who
invited
iNutfiuie,
wiiuiiiviicu
1
--- three
---- ----> • jr
?me to visit TASO. There I met other have moved into a small house near the
In'the'same ’position. They all ; TASO office, so Gilbert can go 'home^
< looked fine and healthy, but we all had whenever he feels tired. He can also see
5the same problem.
a lot more of his children, who are. at g
“Work was getting too difficult and primary school nearby. . i
tiresome and I asked if I could become a
“As a father 1 feel much closer to my
TASO volunteer. After three months children. I have made every effort to get®'
TASO started to pay me as a counsellor, them here with me and now I want .to
As an HIV-positive person myself I can spend as much Time as possible jwitt®
talk to doctors and tell them what our - them. I must be with my family and
concerns and feelings and needs are. them while I’m here. When I'm ill, myW||
Doctors or other people without personal and children can care for me much better^
experience don't really understand, how-. than anyone else.
?
ever hard they try. It is easier too when V “Being HIV-positive isilike>b^W
counselling other people. It helps them sentenced to death. Some people-get^
when they know that I have it too.
stuck in the condemned cell and
“I have to accept that this is a disease can’t see their way out of it. But we^re^
that cannot be cured. It is fatal, but in the free to leave the cell and to live a good
meantime I can do most things normally, life until the end."

vehicles, drugs, equipment, and physical
facilities. The hired buildings currently
used by TASO in Kampala are already to­
tally inadequate, and ActionAid has
pledged support for a new building which
will have three offices and counselling
rooms, a kitchen, toilets, a day centre and a
garage. This building will also be sited
within the Mulago Hospital, which pro-

24

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TASO has provided hundreds of people
with HIV/AIDS, and their families, with
invaluable information, medical care and
material support. Perhaps even more
importantly, it has helped people with
HIV/AIDS regain their self-respect through
playing socially useful lives within their
families and communities. It has also
helped change the attitudes of many health
workers and community leaders towards
people with HIV/AIDS.
But TASO is only one small organiza­
tion within a vast sea of need. Uganda needs
AIDS support groups in every town and

rural district. Many other countries in
Africa also need community organizations
of this kind.
TASO has demonstrated that a small
group of people, u ith some external assist­
ance but with no previous experience, train­
ing. or institutional support, can establish an
effective organization within a matter of
months. What is needed, above all, is a
combination of initiative, commitment, and
a vision of a future in which people with
HIV/AIDS will be treated with compassion
and respect rather than prejudice, ignorance
and fear.

I
1
I

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I

vides TASO’s clients with a degree of an- ' 1
onymity and is easily accessible.
As TASO continues to expand in.
response to growing needs, it will inevit-i
ably encounter management and personnelj
problems. As in the past, the organization’!*
staff and volunteers will identify and tackle > -1
each problem with ingenuity, commitment*^
and good humour.

E

25

APPENDIX:
TRAINING
COURSES
TASO’s training courses present the basic
facts on HIV and AIDS, explore the emo­
tions experienced by people diagnosed as
HIV-positive, and also impart basic coun­
selling skills.
The induction course for TASO counsel­
lors, for example, lasts four days - either
consecutively or once a week over four
weeks. It ’ is been found to work best with
a maximum of eight participants. The
health workers’ training workshop, with up
to 25 participants, usually lasts three days.
The courses have similar subject matter,
but their length can be adjusted to the needs
and background of the participants.

COURSE
OBJECTIVES
1. To show why the course is necessary.
2. To share experiences of HIV and to
break down barriers between people.

3. To build trust among prospective coun­
sellors.

given by uninformed friends will increase
anxiety. Typical feelings:

CONTENTS
Day One
1. Share personal information: age,
education, family history.
2. Share personal experience of AIDS,
whether in oneself or in others.

6. To provide basic information about
HIV and AIDS.
7. To introduce counselling skills.

8. To emphasize the importance of con­
fidentiality between counsellor and client.

26

2. Post diagnosis shock: Typical reac­
tions:
“I can’t believe it.”
“I will be rejected by my family, my part­
ner, my employer or society.”
“I might as well commit suicide.”

3. Share fears and anxieties about AIDS.

Day Two
1. The facts about AIDS : transmission,
stages of HIV and AIDS, prevention,
treatment of infections.

Physical signs are shaking, crying, col­
lapse, numbness, inability to listen or con­
centrate. The client needs time to rest and
regain self-control.
3. Denial: Typical expressions:

6. Acceptance of diagnosis: Typical
expressions:
“What shall we do now?”
“How can I live a positive life?”
“How can I help my family before I die?
7. Hope: Typical expressions:

“1 can live a positive life.”
“1 shall do everything in my power to
make my life good while I can.”
The family of the person with HIV/AIDS
may also go through the same stages of
emotional response to the disease. Family
and client will not always make the same
progress in coming to terms with AIDS.
The client may reach the positive stage
while the family is still denying that any­
thing is wrong.

“The doctor has made a mistake in the
test or the diagnosis.”
“It can’t be true.”
“If I don't accept the diagnosis, it will go
away.”
“But I was unfaithful only once.”

Public reactions are more difficult to pre­
dict and deal with. People may be con­
siderate, sympathetic or worried. They
may isolate the person, spread gossip or
react out of fear and ignorance.

Day Four

3. The use of condoms.

4. Anger against nobody in particular or
everybody in general: God, one’s partner,
the family, society, healthy people, health
workers, oneself. Typical reactions:

Day Three

“It’s not fair.”
“It’s the fault of my partner/ the doctors/
my friends.”

2. Exploding myths. For example, some
people still believe that mosquitoes can
transmit HIV. If this were true all age
groups would be equally affected. How­
ever, only sexually active people and
their babies are affected. HIV cannot
multiply inside a mosquito. It dies before
a person can be bitten by the insect.

4. To examine the objectives of TASO.
5. To examine the emotional feelings sur­
rounding HIV diagnosis at a personal
level, in society and in the media.

“I don’t want to know the result.”
“What will my relatives or the public
think if I have the test?”
“What will happen to my family if I have
the test?”

ism or an appeal to the ancestors.

Explore emotional feelings associated with
HIV/AIDS. Most people go through at least
some of the following feelings (not necess­
arily in this order):
1. Pre-test anxiety: clients are scared,
tense, undecided, nervous and confused
about the test. Fear arises at the prospect
of losing one’s future. Sometimes advice

Counselling skills

A good counsellor:

5. Bargaining with God. oneself, or the
family. Typical expressions:
“Please God. if I am very good will you
cure me?”
“I didn't mean to.”

1. Forms a relationship with the client
which will help the client to take control
of his/her own life.
2. Listens carefully and does not interrupt
the client.

3. Cares about the client.
4. Does not judge the client.

Sometimes the client will want to try al­
ternative cures, such as witchcraft, herbal-

5. Is confidential.

27

6. Thinks about non-verbal communi­
cation: takes account, for example, of the
client’s body language.
7. Relaxes, so that the client finds it easier
to relax too.
8. Thinks about sitting positions. A desk
forms a barrier between client and coun­
sellor. Put two chairs close together, or sit
on a sofa or the floor next to each other.
Do not sit on the far side of the room.
9. Keeps eye contact, to establish and
maintain communication.

10. Makes a client feel comfortable.
Touching is important for warmth and
comfort, especially when people with
AIDS feel ontaminated or isolated. Hold
hands or
hand on shoulder.

11. ‘Reflects back' what the client has
said. Doing this ensures the counsellor
has heard correctly, and helps the client
think calmly about the situation. “I under­
stand you said.. .“So, you are worried
you may have AIDS. Why is that?”
12. Helps the client look at new pos­
sibilities by providing information and
talking about the problem.
13. Helps the client to tell his/her story.
“Can you tell me what happened/how you
feel/who you are?” Remember that every
client is unique, with different problems
and different stories.
14. Asks only relevant questions which
lead to as much information as possible.
‘Closed’ questions only receive ‘Yes’ or
‘No’ answers. Open questions yield more
information and may lead on to other
topics.

“What do you need to do?”
“What will you do first9"
“How will you do this?"
“Who might help you?”
Guidelines for responding to
clients’ questions

1. Give information, not advice. Informa­
tion allows a person to make an informed
choice of their own. Advice tells people
what to do. For example, tell clients when
the AIDS clinic is held. Don’t say “You
ought to go to the AIDS clinic."
2. Ensure that the correct amount of infor­
mation is given in non-frightening terms.
For example, warning a client too strong­
ly about the dangers of injections or
blood transfusions could frighten the
client into never accepting either again.

Counselling role-play

* Was the client comfortable?

This exercise is useful at the end of each
workshop session. Participants can learn
from each other by watching and discus­
sing one anothers' performances. Trainers
can check that participants have under­
stood the lesson correctly.

* Did the counsellor touch the client in a
gentle, reassuring way?

Participants get into pairs, as ‘client’ and
‘counsellor’. The ‘client’ is given a card
with a typical question on it, e.g.

* Has the counsellor ensured that the
client has really understood the informa­
tion given?

“What causes AIDS?”
“Can babies catch AIDS?”
“Should we share household articles?"

* Was the counsellor listening?

After five minutes of role-play the pairs
give a demonstration to the group.
Trainers and participants then discuss the
performance in a constructive manner,
noting the following:

3. Before giving information, find out
what the client already knows, then cor­
rect any errors.

* How the client was welcomed. Did the
counsellor look relaxed and ready to help?

4. Only give accurate and relevant infor­
mation.

*The sitting positions. Were they close
together?

* Was the client assured of confiden­
tiality? This is especially important if the
client already knows the counsellor.

* Was the counsellor giving information
or advice?
‘ROLES’

The word ‘ROLES’ is used to help partici­
pants remember the most important
points about counselling:

Relax
Open
Lean forward
Eye contact
Sitting in a helpful way

5. Be honest. It is better to say “I don’t
know” than to invent an answer. If asked
“How can I be cured of AIDS?" say “You
can’t be cured, but if you eat well, get in­
fections treated quickly and reduce stress,
you can live for several years.”
6. For some questions there are no ‘right’
answers. Remember that every client is
different.
7. Look for underlying questions. Clients
often ‘present’ a simple problem behind
which a much greater one is hiding.
8. Use simple language, not medical
jargon.

15. Helps the client make a Family Plan
by responding to the following questions:

28

29

V

FURTHER READING
1. ‘AIDS Action’, an international news­
letter for information exchange on AIDS
prevention and control. Distributed free to
readers in developing countries. Avail­
able from AHRTAG, 1 London Bridge
Street, London SEI 9SG, U.K.
2. ‘WorldAIDS’, a news magazine repor­
ting on AIDS and development.
Distributed free to readers in developing
countries. Available from The Panos
Institute, 8 Alfred Place, London WC1E
7EB,U.K.
3. ‘AIDS Newsletter’, a digest of recent
developments in AIDS research, educa­
tion, clinical care, counselling, and offi­
cial policies worldwide. Available from
Bureau of Hygiene and Tropical
Diseases, Keppel Street, London WC1E
7HT, UK.

4. UNICF Kampala, Our Children and
AIDS. A Guide to Child Survival, 1988.
Available from UNICEF, P.O. Box 7047,
Kampala, Uganda.

ORDER FORM

5. Gill Gordon and Tony Klouda, Talk­
ing AIDS. A Guide for Community
Work, International Planned Parenthood
Federation and Macmillan, 1988. Avail­
able from IPPF, P.O. Box 759, Inner
Circle, Regent’s Park, London NW I
4LQ, U.K?

A

(tick)

a

Please send me:
...* copies of FROM FEAR TO HOPE: AIDS Care and ' * v/l
Prevention at Chikankata Hospital, Zambia
. . . * copies of LIVING POSITIVELY WITH AIDS: The AIDS Support
Organization (TASO), Uganda
... * copies of AIDS MANAGEMENT: AN INTEGRATED APPROACH

6. Gill Gordon and Tony Klouda,
Preventing a Crisis. AIDS and Family
Planning Work, IPPF and Macmillan,
1988.

(’Please state number required)

7. Gill Gordon, AIDS and Family Plan­
ning, flannelgraph and book. Teaching
Aids at Low Cost (TALC), 1988. Avail­
able from TALC, P.O. Box 49, St Albans,
Herts AL1 4AX, U.K.

O Please send me details of the video production on the work
of The AIDS Support Organization (TASO), Uganda

Please send me details of future publications in the
STRATEGIES FOR HOPE series.

8. Wendy Holmes and Felicity Savage,
HIV Infection - Virology and Trans­
mission, slide set and script, TALC, 1988.

NAME:

ORGANIZATION:

9. Wendy Holmes and Felicity Savage,
HIV Infection - Clinical Manifesta­
tions, slide set and script, TALC, 1988.

(Please do not abbreviate)

ADDRESS:

Price per copy is £1.50 (Sterling) including packing and postage worldwide.
Please make cheques payable to TALC.

REFERENCES
1. Uganda AIDS Control Programme.
‘Review of Uganda AIDS Control
Programme’, December 1988.

presented at ‘Integrated AIDS Manage­
ment: a Conference for Field Workers’.
Nairobi, 21-24 May 1989.

2. Ibid.

4. The text of this leaflet is based on Body
Positive, a pamphlet published by the
Terrence Higgins Trust in the United
Kingdom.

3. Elly Katabira, ‘Two years experience in
the AIDS Clinic in Uganda’, paper

30

a

SPECIAL OFFER
Organizations in African countries south of the Sahara may order up to
25 copies free of charge. Requests for larger quantities will also be
considered, on receipt of an explanatory letter.

Please send this form, together with payment where applicable to- TALC
P.O. Box 49, St Albans, Herts AL1 4AX, U.K.

31
LIBFjARY
A|ND

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»

STRATEGIES FOR HOPE
This series of case studies of innovative AIDS control and prevention pro­
grammes currently consists of:

No. 1

From Fear to Hope: aids Care and
Prevention at Chikankata Hospital, Zambia

Describes this rural hospital’s home-based care programme for people
with H1V/AIDS. Sets the Chikankata experience in the context of AIDS
control and prevention in Africa.

No. 2

Living Positively with AIDS: The aids
Support Organization (TASO), Uganda

Reports on the work of the first AIDS support group in East Africa.
Describes how people with HIV/AIDS and other volunteers provide care,
counselling and support for people with AIDS and their families in hospi­
tals and in their own homes.

No. 3

AIDS Management: An Integrated
Approach

Describes the organization and management of a comprehensive AIDS
control and prevention programme by a rural hospital in Zambia. Aimed
at health professionals.

Future topics will include: counselling skills and techniques, living
with an AIDS patient, clinical and nursing care of people with AIDS.
Videos: Two 20-miniite video programmes focussing on the work of The
AIDS Support Organization (TASO) in Uganda will be available in April
1990.

32

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'^45
AIDS presents a major challenge to governments,
health services and communities in many developing
countries.
STRATEGIES FOR HOPE aims to promote informed,
positive thinking and practical action, by all sections of
society, in dealing with AIDS.
Non-governmental organizations have a front-line role
to play in AIDS control and prevention. In some
developing countries, NGOs have already developed
new, community-based forms of care, counselling and
support for people with AIDS and their families. NGOs
are also involved in educating communities about
AIDS.
STRATEGIES FOR HOPE describes these pioneer­
ing experiences, initially in several African countries,
in a series of case study booklets and video pro­
grammes. These materials are being distributed with
the support of the World Health Organization s Global
Programme on AIDS, and in cooperation with
national AIDS control programmes.

Series Editor: Glen Williams
THE AUTHOR

Janie Hampton has written several books on health
care in developing countries, and is based in Oxford,
U.K.

ISBN 1 872502 01 6
Media
2918.pdf

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