Vol. 4 No. 1, April 2007 - Walter Sisulu University

Transcription

EDITORIAL INFORMATION/INFORMATION RÉDACTIONELLE
Journal of Social Aspects of HIV/AIDS/Journal des Aspects Sociaux du VIH/SIDA
ISSN 1729-0376
Editors/Les rédacteurs en chef:
Prof Karl Peltzer, Social Aspects of HIV/AIDS and
Health, Human Sciences Research Council (HSRC),
Private Bag X9182, Cape Town 8000, South Africa.
E-mail: [email protected]
Prof Cheikh Niang,West African SAHARA Office,
Institut des Sciences de l’Environnement, Faculté des
Sciences, Université Cheikh Anta Diop, Dakar,
Senegal.
E-mail: [email protected] or [email protected]
Managing Editor / Le responsable de la
rédaction:
Yoesrie Toefy, HSRC, e-mail: [email protected]
Technical Editor/Rédacteur Technique
Prof Anna Strebel
Editorial Board/Le comité de rédaction:
Collins O Airhihenbuwa (USA), Lewis Aptekar
(USA), Peter Baguma (Uganda),Tony Barnett (UK),
Don H Balmer (Kenya),Yosiah DM Bwatwa
(Lesotho), Frikkie Booysen (South Africa), David
Celentano (USA), Maureen Chirwa (Malawi), Soura B
Diakaridja (Ivory Coast), Maria Eugenia G do Espirito
Sato (France, Senegal), David Gisselquist (USA), Sanjay
Garg (New Zealand), Seth Kalichman (USA), Ezekiel
Kalipeni (USA, Malawi), Désiré Kamanzi (Rwanda),
Emmanuel Lagarde (France), Joe Lugalla (Tanzania),
Winnie Mpanju-Shumbusho (Switzerland),
Dominique Meekers (USA), Elias Mpofu
(USA/Zimbabwe), Kathleen Myambo (Egypt,
Zimbabwe), Charles Nzioka (Kenya),Walter
Odhiambo (Kenya), Kim Richards (USA, Zimbabwe),
Brooke G Schoepf (USA), Pieter Streefland (The
Netherlands), Issiaka Sombie (Burkina Faso),
Adegbenga M Sunmola (Nigeria), Jacques Philippe
Tsala-Tsala (Cameroon), Negussie Taffa (Kenya),
Marleene Temmerman (Belgium), Leana Uys (South
Africa), Eliya Zulu (Kenya)
Publisher/Éditeur:
SAMA Health and Medical Publishing Group
(HMPG)
Tel: +27(0)21-530-6520
Fax: +27(0)21-531-4126
E-mail: [email protected]
Published quarterly (hard copy and online)
Publication trimestrielle (sur papier ou Internet)
Funded by the Department For International
Development (DFID) (UK)
Sponsorisé par le Department for International
Development (DFID) (UK)
SAHARA J is listed on www.ajol.co.za and
www.sabinet.co.za
SAHARA J est listé sur www.ajol.co.za et
www.sabinet.co.za
SAHARA Journal Mission Statement
The journal publishes contributions in English and French from all fields of social aspects of HIV/AIDS (care,
support, behaviour change, behavioural surveillance, counselling, impact, mitigation, stigma, discrimination,
prevention, treatment, adherence, culture, faith-based approaches, evidence-based intervention, health
communication, structural and environmental intervention, financing, policy, media, etc).
Déclaration de la mission du journal SAHARA
Le journal publie des communications en Anglais et en Français de tous les domains des aspects sociaux du
VIH/SIDA (le soin, le soutien, le changement du comportement, la surveillance comportementale, la
consultation, l’impact, la réduction, le stigmate, la discrimination, la prévention, le traitement, l’adhésion, la
culture, les approches basées sur la foi, l’intervention évidence-basée, la communication sur la santé,
l’intervention structurale et de l’environnement, le financement, la politique, le média, etc).
VOL. 1 NO. 3 NOVEMBRE 2004
Journal des Aspects Sociaux du VIH/SIDA
131
ORIGINAL ARTICLE
Preventing mother-to-child transmission: factors affecting mothers’
choice of feeding — a case study from Cameroon
K N Muko, G K Tchangwe,V C Ngwa, L Njoya
ABSTRACT
This paper reports on factors influencing the decision of mothers regarding the type of feeding method for their
babies in a rural setting in Cameroon.The aim of the study was to ascertain the proportion of mothers choosing
the different methods of feeding, to determine the various factors influencing their choices, and to ascertain the
relationships of these factors to their respective choices. Questionnaires were used on 108 HIV-positive mothers
who had delivered babies and who were administered nevirapine at least 3 months prior to the study. A focus
group discussion with mothers also took place. Findings were that more mothers (84%) chose breastfeeding than
artificial feeding (16%), while a minority (4%) selected mixed feeding. Factors found to militate against artificial
feeding were cost (69%), stigma (64%), family pressure (44%), inconvenience in preparation/administration
(38%), prior education from health workers (23%), and loss of special attention from family (8%). On the other
hand, advice of health worker (44%), ill health (19.5%), free milk (12.5%), job pressure (12.5%) and loss of
beauty (12.5%) were found to militate against breastfeeding. A direct relationship was also found between age,
educational level, income size, marital status and choice of feeding. Policies targeting stigma reduction and sociocultural factors affecting the choice of feeding are needed to optimise uptake of the less risky methods of
feeding which could in turn contribute to a reduction in transmission.
Keywords: HIV/AIDS, mother-to-child transmission prevention, feeding.
RÉSUMÉ
Cette communication présente des facteurs qui influencent la décision des mères concernant la méthode
d’allaitement de leur nourrissons, en zone rurale au Cameroun. Le but de cette étude était de s’assurer de la
proportion de mères qui choisissent de méthodes différentes d’allaitement, de déterminer les facteurs influençant
leur choix et d’étudier la relation entre ces facteurs et les méthodes d’allaitement choisies. Pour recueillir des
données, un questionnaire a été utilisé auprès de 108 mères séropositives qui ont des nourrissons. Ces mères
étaient sur le traitement de la névirapine depuis au moins 3 mois avant le début de cette étude. Une discussion
d’un groupe de foyer de mères a eu lieu. Les résultats ont montré que plus de 84% de mères ont choisi
l’allaitement maternel contre 16% qui ont choisi l’allaitement artificiel alors qu’une minorité (4%) ont choisi
l’allaitement mixte (maternel et artificiel). Les raisons contre l’allaitement artificiel sont les suivants: le coût
(69%); la stigmatisation (64%); les pressions familiales (44%); les inconvénients liés à la préparation et
l’administration du lait artificiel (38%); une éducation préliminaire de la part du personnel soignant (23%) et le
manque de soins particuliers de la part de la famille (8%). D’autre part, les facteurs qui favorisent l’allaitement
artificiel sont les suivants: les conseils du personnel de santé (44%); la mauvaise santé (19.5%); du lait artificiel
gratuit (12.5%) et la perte de beauté (12.5%). Nous avons constaté une relation entre l’âge de la femme, le
Kenneth Ngwambokong Muko (M Pharm, MPH) is a clinical pharmacist of the Catholic Health Service of the archdiocese of Bamenda,Cameroon. A
former assistant lecturer of the faculty of pharmaceutical sciences University of Nigeria Nsukka, he is also the acting project administrator for Inter
Care/Njinikom Project Hope, an HIV/AIDS prevention/care/treatment and impact mitigation programme in Cameroon.
Koubitim Ginnette Tchangwe (MB BS, D Paed) is paediatrician at the St Martin de Porres Hospital, Njinikom. She also heads the mother-to-child
HIV transmission prevention phase of Inter Care/Njinikom Project Hope.
Valentine Che Ngwa (BSc, MB BS ) is undergoing postgraduate medical training in infectious diseases in St James University Hospital, Leeds, UK. He
was the programme officer of the mother-to-child transmission phase of Project Hope and physician in charge of HIV treatment of the Catholic Mission
General Hospital, Njinikom, Cameroon.
Laah Njoya (MB BS) is the chief medical officer of the Fundong District Hospital, Cameroon.
Correspondence to: KN Muko, Inter Care/Njinikom Project Hope, BP 16 Njinikom, Boyo Division, Cameroon. E-mail: [email protected]
132
Journal of Social Aspects of HIV/AIDS
VOL. 1 NO. 3 NOVEMBER 2004
ARTICLE ORIGINAL
Preventing mother-to-child transmission: factors affecting mothers’ choice of feeding
— a case study from Cameroon
niveau d’éducation, le niveau du revenu, le statut civil et le choix d’allaitement. Il est nécessaire de mettre en
place des politiques visant la réduction de la stigmatisation et les facteurs socioculturels qui influencent le choix
d’une méthode d’allaitement afin de maximiser une compréhension de méthodes d'allaitement à moindre risque
qui par la suite pourrait contribuer à la réduction de transmission.
Mots clés :VIH/SIDA, prévention de la transmission mère-enfant, allaitement.
Introduction
The majority of people living with HIV/AIDS are
women.Women aged 15 and older make up 58% of
the 42 million people who are living with HIV/AIDS
(UNAIDS, 2002). Over 90% of these women live in
the developing world. Mother-to-child transmission
(MTCT) of the virus — also known as vertical
transmission — is the main route of HIV infection in
children under 10 years of age, with more than 600 000
infants becoming infected with HIV yearly. Since the
beginning of the epidemic, an estimated 5.1 million
children worldwide have been infected. Of those, the
overwhelming majority are in Africa.This is due to
high fertility rates and high HIV prevalence in
pregnant women, reaching levels of 40% in some cases
(UNICEF/UNAIDS, 1999).The virus can be transmitted during pregnancy, labour and delivery
(perinatal transmission), or through breastfeeding.
Among infected infants who are not breastfed, twothirds are believed to have contracted HIV around the
time of delivery. Some conditions that may increase
risk of transmission during breastfeeding are the
advanced disease stage of the mother, maternal vitamin
A deficiency, breast abscesses or infections, certain
patterns of breastfeeding, and oral infection in the
infant.
Until recently, there was no means of preventing
MTCT for those HIV-positive women who wished to
give birth.Two interventions using antiretrovirals
(nevirapine and azidothymidine) concurrently with
feeding adjustments have proven to be very effective
in reducing MTCT of HIV (Guay, Musoke, Fleming
et al., 1999; Shaffer, Chuachoowong, Mock et al., 1999;
UNAIDS, 1999).The successful implementation of
these programmes is highly dependent on the choice
and effective implementation of an appropriate
feeding regimen. For women who are HIV-negative,
breastfeeding is the preferred child survival strategy for
providing nutrition and avoiding infectious diseases
during the first 2 years of life.When a baby of an
HIV-positive mother is breastfed and given other
liquids or solids, there is continued concern that if no
drugs are administered, the risk of infection is about
30 - 35%.The risk is reduced to 20% if the child is
not breastfed. Complete avoidance of breastfeeding
(using artificial feeding) is considered the most reliable
way to avoid neonatal transmission.There is evidence
to suggest that exclusive breastfeeding for the first 3
months may result in lower transmission rates than
mixed feeding (Coutsoudis, Pillay, Spooner, Kuhn &
Coovadia, 1999). Improper use of breast-milk substitutes (if mixed with tainted water or if over-diluted)
can cause severe malnutrition and fatal infectious
diseases.The risks associated with replacement feeding
may outweigh the benefits. In sub-Saharan Africa,
diarrhoea is the leading cause of death in children
under 5 years. A sound assessment of the safety of
replacing breastfeeding depends on access to clean
water, a reliable supply of formula, and availability of
instruction.
The World Health Organisation (WHO) recommends
the following for mothers with HIV:
• avoid breastfeeding entirely when replacement
feeding is acceptable, feasible, affordable, sustainable
and safe
• breast-milk should be fed exclusively during the
first months in cases where the mother chooses to
breastfeed
• if mothers choose not to breastfeed from birth or
stop breastfeeding later, they should be provided
with specific guidance and support for at least the
first 2 years of the child’s life to ensure adequate
replacement feeding.
Other preventive measures jointly proposed by the
WHO, UNICEF and UNAIDS include the
expression of colostrum, artificial feeding with
formula or animal milk, pasteurisation of maternal
milk, reduction of breastfeeding duration or resorting
to a seronegative wet-nurse (WHO, 1998a;WHO,
1998b; UNAIDS, 2001).
133
ORIGINAL ARTICLE
Preventing mother-to-child transmission: factors affecting mothers’ choice of feeding —
a case study from Cameroon
As is the case with most countries south of the Sahara,
prevention of MTCT (PMTCT) is a target of
Cameroon’s National Aids Control Committee.The
country’s 11.8% HIV prevalence reflected a drastic rise
among pregnant women between 1998 and 2000, and
almost doubled from 6% to 11% among those aged
20 - 24 (UNAIDS, 2002).With pilot sites set up as
early as 2000, a gradual scaling up is taking place. One
province (North West) had 16 sites as at June 2002
(Kube, 2002).The policy with regard to choice of
feeding is artificial feeding as a first choice and
exclusive breastfeeding if the first is not feasible. Even
though nevirapine is given free of charge, the mothers
have to pay for artificial food and other related costs,
including treatment with antiretrovirals (ARV).
Even though the WHO/UNAIDS guidelines on
feeding in HIV/AIDS settings are quite clear, many
factors affect mothers’ choice of feeding. Desclaux and
Taverne (2000) have argued that preventive measures
applied successfully in developed countries cannot be
generalised. Some of these measures (like formula
feeding) entail infectious and nutritional risks in
health contexts of low-income countries, where they
are not economically or socially accessible for all
women. Furthermore, HIV/AIDS-related stigma, and
its associated discrimination, is known to negatively
affect all aspects of HIV prevention, diagnosis,
treatment and care (Brown,Trujillo & Macintyre,
2001). Increased uptake of PMTCT services in
general and improved adherence to optimum feeding
practices can be attained if factors affecting the choice
of feeding of mothers are identified and appropriate
interventions put in place.This has not been done in
Cameroon.Thus the current study seeks to identify
such factors and suggest plausible interventions for
improved uptake.
Methodology
The St Martin De Porres Catholic Mission Hospital
Njinikom is located in the North West part of
Cameroon. More than 90% of the inhabitants of the
area are subsistence farmers with over 76% living on
less than $1 per day.The institution provides health
care services to over 170 000 people. In late 2001 an
HIV/AIDS prevention, treatment and care programme
(Inter Care/Njinikom Project Hope) was put in place
with the help of the British-based organisation Inter
Care, Medical Aid for Africa. PMTCT has been a core
component of the project. Free voluntary counselling
134
and testing (VCT) surveys indicated 16.2%
seropositivity with 12.2% prevalence among pregnant
women. Over the years (since November 2000) 2 864
mothers have been counselled and tested for HIV in
the health institution, and over 166 have been
administered nevirapine during labour.The
programme currently has a nevirapine coverage rate of
63% (ascertained within the past year), as many
mothers deliver elsewhere where their HIV status is
not known.
The study was carried out using questionnaires.
Trained health personnel administered tested
questionnaires to 104 mothers, and a randomly
selected focus group discussion with 18 mothers was
held.The purpose of the study was explained to the
mothers and their consent sought prior to
administration of the questionnaire.The criteria
excluded mothers who refused to participate and
those who were too sick to take part or had lost their
babies.The inclusion criterion was all mothers who
participated in the PMTCT programme, i.e. had been
counselled, tested positive, administered nevirapine and
delivered live babies at least 3 months prior to the
study.
Results
Of the 348 mothers who had tested positive for HIV
prior to the study, 144 had been lost (had moved,
delivered their babies elsewhere or died). A total of 38
had not yet been delivered of their babies and 62 were
either not eligible for the study or did not participate.
Results indicated that the majority of mothers in the
study (84%) were breastfeeding their children, while
the remaining 16% were using formula feed. However
it emerged from the focus group discussion (FGD)
that some mothers had initially used formula feeding
before switching to breastfeeding.
The age group 20 - 30 years had the highest number
of mothers (39%), followed by the age group of less
than 18 years (30%), with fewest mothers in the age
group above 40 years (7%).Table 1 shows the
correlation of age of the mothers involved in the
study and the choice of feeding. Exclusive breastfeeding was found to decrease with increasing age and
conversely an increase of artificial feeding was
observed with increasing age.
ARTICLE ORIGINAL
TABLE I. AGE OF MOTHERS AND CHOICE OF FEEDING
Age
Number
< 18
29 (30%)
Artificial milk
3 (11%)
Breastfeeding
26 (89%)
18 - 30
38 (39%)
4 (11%)
34 (89%)
31 - 40
24 ((24%)
7 (30%)
17 (70%)
7 (7%)
2 (29%)
5 (71%)
> 40
The relationship between the income-earning
capacities of the respondents and their choice of
feeding is shown in Table 2. Most of the mothers
earned less than 1US$ per day. It was observed from
the FGD that some of the mothers did not carry out
any income-generating activity and were totally
dependent on their husbands or partners. Overall an
increase in income was observed to relate directly to
an increase in the number of mothers opting for
artificial milk.The relationship to income was not
very strong for those who decided to breastfeed their
babies.
of artificial milk. Conversely it was observed that the
more educated the mother, the greater the chances of
her choosing breastfeeding.
Table 4 shows the marital status of the respondents
and their choice of feeding. A majority of respondents
(55%) were married (71% of them from monogamous
homes and 29% of them from polygamous homes).
Widowed mothers constituted 19% of the group and
it emerged from the FGD that some of them accepted
that their husbands had died of HIV/AIDS. It was also
revealed from the FGD that some of the widows had
been inherited by their brothers-in-law, while some
had remarried. In half of the cases the present husbands did not know the HIV status of their wives
prior to marriage. It was observed that a greater
proportion of single mothers involved in the study
chose to breastfeed their babies than the married
mothers.This was much higher among those who
were widows.
TABLE 4. MARITAL STATUS AND CHOICE OF FEEDING
Marital status
TABLE 2. INCOME OF MOTHERS AND CHOICE OF FEEDING
Income
Number
Artificial milk
Breastfeeding
< 1 US$/day
52 (53%)
6 (12%)
46 (88%)
1 - 2US$/day
23 (24%)
4 (18%)
19 (82%)
2 - 5US$/day
13 (11%)
4 (37%)
10 (70%)
5 - 10US$/day
7 (7%)
1 (15%)
6 (86%)
> 10US$/day
3 (3%)
1 (33%)
2 (67%)
Table 3 shows the educational levels of the respondents with their choice of feeding method. A large
proportion (41%) had less than 7 years of formal
education.This was closely followed by those with
8 - 12 years of formal education (29%).The smallest
group (3%) was those with above 18 years’ formal
education, who held university degrees. Higher
education was found to relate directly to decreased use
Number
Artificial milk
Single
17 (17%)
Married
55 (55%)
(Monogamous = 39, polygamous
Divorced (separated) 8 (8%)
Widowed
19 (19%)
Breastfeeding
3 (18%)
10 (19%)
= 15)
1 (13%)
2 (11%)
14 (82%)
45 (81%)
7 (87%)
17 (89%)
Table 5 demonstrates the occupation of the mothers
and feeding choice. A majority (40%) were farmers,
followed by housewives (22%).The FGD revealed that
some housewives were also farmers and a clear-cut
demarcation was not possible. Furthermore some
housewives also responded that they had no
occupation. No direct relationship was observed
between mode of feeding and occupation. It was
however observed that among those who choose
breastfeeding, the highest number were teachers
followed by farmers and housewives.
TABLE 3. EDUCATIONAL LEVEL AND CHOICE OF FEEDING
TABLE 5. OCCUPATION AND CHOICE OF FEEDING
Formal education
Breastfeeding
Occupation
Housewives
Farmers
Teachers
Students
Other civil servants
No occupation
Number
Artificial milk
1 - 7 years
41 (41%)
8 (20%)
33 (80%)
8 - 12 years
29 (29%)
5 (18%)
24 (82%)
13 - 14 years
16 (16%)
2 (13%)
14 (87%)
14 - 17 years
9
(9%)
1 (12%)
8 (88%)
> 18 years
3
(3%)
–
–
Number
22 (22%)
39 (40%)
11 (11%)
14 (14%)
6 (6%)
6 (6%)
Artificial milk
4 (19%)
7 (18%)
1 (9%)
2 (15%)
0 (0%)
2 (33%)
Breastfeeding
18 (81%)
32 (82%)
10 (91%)
12 (85%)
6 (100%)
4 (67%)
135
ORIGINAL ARTICLE
Table 6. FACTORS MILITATING AGAINST ARTIFICIAL FEEDING
Table 7. FACTORS MILITATING AGAINST BREASTFEEDING
Cost
Stigma
Family pressure
Inconvenience in preparation/administration
Prior education from health workers
Loss of special attention from family
Advice of health worker
Sickness
Free milk
Job
Physical appearance
57 (69%)
53 (64%)
36 (44%)
31 (38%)
19 (23%)
6 (8%)
Table 6 reports some of the factors that militate
against artificial feeding.The most common factor was
found to be cost (69%), closely followed by stigma
(64%). It emerged from the FGD that on average the
cost of a tin of artificial feed on the local market was 4
US$ and a baby needed approximately 36 tins within
the first 3 months. Furthermore some mothers had
resorted to over-diluting the milk so that it would last
longer.The FGD also indicated that the perception of
stigma was greater than actual experience of stigma.
Most mothers had not directly experienced stigma as
such.Their fears were mostly based on experiences of
friends and colleagues.The FGD highlighted the
connection between artificial feeding and stigma.
Historically, health workers have told mothers (and the
community) that breastfeeding was the healthiest
choice for the baby. Many people are now aware that
breastfeeding is not recommended for HIV-positive
mothers.Therefore if a mother is using artificial feed,
relatives and neighbours suspect the reason is HIVrelated. Furthermore it emerged from the FGD that
breastfeeding mothers had a prominent status in the
society, so that they were given special food (sweet
palm wine which is erroneously thought to replace
artificial milk) and a special diet that included eggs.
Mothers on artificial milk automatically lost this status.
Table 7 presents some of the factors that militate
against breastfeeding.The most prominent factor
(44%) was advice from health workers on the risk
involved in breastfeeding the baby. Some mothers
(19.5%) were too sick to breastfeed their babies, while
others ascribed not breastfeeding their babies to their
jobs and also the availability of free milk at the initial
stage of the programme. Notable too were the
mothers who would not breastfeed their babies
(12.5%) because they were concerned that the
appearance of their breasts would change and they
would look less attractive.
136
7
3
2
2
2
(44%)
(19.5%)
(12.5%)
(12.5%)
(12.5%)
Discussion
Breastfeeding prior to the advent of HIV/AIDS was
popular and this is reflected in the fact that the
majority of mothers were breastfeeding their babies.
Mothers who initiated formula feed and switched to
breastfeeding reportedly did so because of cost and
stigma.The fact that mothers took this decision in
spite of the awareness of the consequences of such a
decision shows the strong role these factors (cost and
stigma) have to play in choice of feeding.
A majority of the mothers were less than 30 years of
age, which reflects the fact that in the area of study
women get married at an early age. Most of the
teenage mothers were not yet married and the
majority preference here for breastfeeding could be
attributed to the fact that choosing artificial feeding
was synonymous to a declaration of their seropositive
status and thus could decrease their chances of getting
married. Furthermore strong family support has been
shown to increase adherence to feeding method and
the older mothers, most of whom were married, could
more comfortably adhere to artificial feeding as a
result of support from their immediate family, unlike
the spouses of single mothers who in some cases
refuse to accept their parental roles (Bassett, 2000).
The programme in place encourages spouses to come
for testing, and 36% of legally married husbands had
responded to this, while less than 5% of the unmarried
spouses of HIV-positive mothers had been tested.Thus
the legally married mothers had more family support
and were more predisposed towards choosing artificial
feeding.
With 52% of mothers earning less than $1 per day it
was difficult for mothers to raise the $144 needed for
a 3-month supply of exclusive formula feed. However
the fact that some mothers resorted to diluting the
milk rather than breastfeeding their babies showed a
strong commitment to adhering to artificial feeding in
spite of the stigma. Increased level of education was
ARTICLE ORIGINAL
expected to lead to an increased understanding of the
greater risk of transmission in artificial feeding. However the study found that the higher the level of
education, the less the chance of choosing breastfeeding. It is likely that the educated mothers interacted with peers of a similar education level who
might have been more informed regarding the
rationale for artificial feeding and thus more prone to
stigma.Thus reticence to use artificial milk may be a
result of stigma and cost rather than the level of
education.
The fact that more single mothers than married
mothers chose to breastfeed their babies shows the
strong role that support from the family plays in
choice of feeding.The external family system provides
a strong financial resource, which is available when a
relative is sick. It would thus be expected that these
married mothers would have greater access to artificial
milk than their unmarried colleagues. Unfortunately
in situations were stigma is high, it would be difficult
for mothers to disclose their status, thus making it
difficult for family or friends to help (Muko, Ngwa,
Chingang, Anke & Shu, 2003). In the area of study it
is not uncommon for the disease to be referred to as
‘women’s disease’, an implication that women are
solely responsible for the infection of their children,
which contributes to misconceptions about the disease
and its effects, even though women often become
HIV-positive without ever having another relationship
outside of their marriage. It has been suggested that
parent-to-child transmission (PTCT) would be a more
realistic description that may lessen the stigma women
experience (Brown et al., 2001).
The preference for breast-milk in this study was
associated more with stigma than cost. However more
widows chose to breastfeed their babies, probably
because they did not have strong financial support
from their families, compared with their married
colleagues. In the area where the study was
conducted, the death of a husband entails huge
expenditure on funerals.Thus in most cases, the family
finances would be spent on treatment for the deceased
husband.
Career mothers with stable jobs preferred to
breastfeed rather than to give their babies artificial
milk, in spite of the fact that they would be expected
to do so less, due to the time spent at work.These
mothers were more aware of the impact of their serostatus on their lives as a result of increased education.
In the area of study, the higher the educational level,
the greater the chances of getting a job, thus ‘working
mothers’ are generally more educated.This is not the
case with the farmers, most of whom had fewer years
of formal education.
Apart from cost and stigma, which have been
discussed as factors militating against breastfeeding,
pressure from family relatives was observed to be a
strong factor (44%).The FGD disclosed that relatives
who were aware of the importance of artificial feeding
in an area where breastfeeding was the norm were
worried that their families would be subjected to
stigma. Most members of the FGD felt that there was
no difference in perception between a mother who
gave the infant expressed milk and one who was
feeding the infant with artificial milk.This was
because the societal stigma would still be there and in
some cases would be accentuated for a mother who
gave the infant expressed milk. Furthermore, the
inconvenience of preparing artificial milk (38%) was
mostly attributed to lack of time, rather than other
drawbacks to artificial milk, such as the fear of
diseases, e.g. diarrhoea and unavailability of clean
water, as reported in other studies (Desclaux &
Taverne, 2000). Prior to the advent of HIV/AIDS, a
great deal of emphasis was placed on the importance
of breastfeeding; thus it will take many years for
people to accept artificial feeding as a valid alternative
free of stigma.
In the study, a mother who had recently delivered was
given special status in the community.This was
accentuated for those who were breastfeeding, and
included a special diet with eggs, sweet palm wine, less
work, etc. Mothers reportedly felt that giving the child
artificial food would lead to loss of this special status.
Apart from the advice for mothers not to breastfeed
given by the counsellors in the health institutions, the
clinical state of mothers was another factor. Less than
2% of mothers were on ARV therapy, thus the chances
of infection from opportunistic diseases were great for
a majority of mothers.The fact that some mothers
would give their children artificial milk if it was free
further accentuates the issue of cost and availability as
factors that could discourage breastfeeding. Few
mothers (12.5%) attributed their decision to give
137
ORIGINAL ARTICLE
artificial milk to their babies to pressure from their
jobs and some (12.5%) felt that breastfeeding would
cause them loose their beauty. Interestingly, these were
the younger mothers who were not yet married.
Conclusion
The study has shown that apart from cost and stigma,
other sociocultural factors affect mothers’ choice of
feeding. For seropositive mothers, this decision is an
inherent determinant of the immediate risk of
transmission of HIV from mother to child.The
benefits of many PMTCT programmes may be
insignificant if children who are protected during
pregnancy and delivery are contaminated during
breastfeeding.The MTCT policies in place in
Cameroon and other sub-Saharan countries do not
adequately address some of these issues, especially the
strong influence of stigma. Utilising the terminology
‘parent-to-child transmission’ may be helpful in this
regard. However, the focus of interventions should not
only be on saving the child and providing for the
long-term medical and psychological needs of the
mother, but also on the father and if possible the
entire family. Furthermore, the provision of breastmilk substitutes by the health care services and the
issue of cost need to be addressed. Given the diverse
socio-economic and cultural resources available to
women in Cameroon, it would be inappropriate to
assume that blanket policies would be effectively
implemented with expected impact in all areas. Health
care workers should be given a central role in identifying what works in their specific regions. Evidencebased practices should be adopted in national policies.
With increased availability of ARV treatment it would
138
be naïve to assume that a pregnant mother could be
taking ARVs and replace breastfeeding with artificial
milk without her relatives knowing her status.The
traditional values and their impact need to be recognised and impact-mitigation interventions put in
place.
References
Bassett, M.T. (2000). Psychosocial and community perspectives on alternatives to
breastfeeding. Annals of the New York Academy of Sciences, 918, 128-135.
Brown, L.,Trujillo, L. & Macintyre, K. (2001). Interventions to reduce HIV/AIDS stigma:
What have we learned? Horizons Program,Tulane University. pg 15 available at
http://www.popcouncil.org/horizons/horizons.html (accessed 03/06/04).
Coutsoudis A, Pillay K, Spooner E, Kuhn L & Coovadia HM. (1999) Influence of
infant-feeding patterns on early mother-to-child transmission of HIV-1 in Durban,
South Africa: a prospective cohort study. South African Vitamin A Study Group. Lancet
354 (9177): 471-476.
Desclaux, A. & Taverne, B. (eds) (2000). Allaitement et VIH en Afrique de l’ouest. De
l’anthropologie à la santé publique. Paris: Karthala.
Guay, L., Musoke, P., Fleming,T. et al. (1999). Intrapartum and neonatal single-dose
nevirapine compared with zidovudine for prevention of mother-to-child transmission
of HIV-1 in Kampala, Uganda: HIVNET 012 randomized trial. Lancet, 354, 795-802.
Kube, M. (2002). Preventing mother to child transmission. Biodiagnostics and
Therapeutics, 17, 3 -12.
Muko, K.N, Ngwa,V.C, Chingang, L.C, Anke,M. & Shu, E.N. (2003).Treatment with
highly active anti-retrovirals(HAART):Willingness to pay for HAART. Biodiagnostics
and Therapeutics, 22(3), 3-37.
Shaffer, N., Chuachoowong, R., Mock, P.A. et al. (1999). Short-course zidovudine for
perinatal HIV-1 transmission in Bangkok,Thailand: A randomized controlled trial.
Lancet, 353, 773-780.
UNAIDS (1999). Prevention of HIV Transmission from Mother-to-Child: Strategic Options.
Geneva: UNAIDS.
UNAIDS (2001). New data on the prevention of mother-to-child transmission of HIV and
their policy implications. Geneva: UNAIDS.
UNAIDS.AIDS (2002). Epidemic Update. Geneva: UNAIDS/WHO.
UNAIDS/UNICEF/WHO (1998). HIV and infant feeding. Guidelines for decision
makers. Geneva:WHO.
UNICEF/UNAIDS. (1999). Children orphaned by AIDS: Front-line responses from
Eastern and Southern Africa. New York: UNICEF/UNAIDS.
WHO (1998a). Guidelines for health care managers and supervisors .WHO/FRH/NUT
98.1. Geneva:WHO.
WHO (1998b). A review of HIV transmission through breastfeeding .WHO/FRH/NUT
98.3. Geneva:WHO.
ARTICLE ORIGINAL
L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun
Jacques-Philippe Tsala Tsala
ABSTRACT
HIV/AIDS infection has spread like wildfire in the countries of sub-saharan Africa. In order to fight that
pandemic, Cameroon has organised itself by setting up, with the assistance of bilateral and multilateral partners, a
national structure with the aim to reduce the spread of the disease.Two years after the launch of the National
Plan for the Fight Against HIV/AIDS, an advocacy campaign targetting social leaders made it possible to assess
the difficulties encountered by such an entity in a social and cultural environment as complex as that of
Cameroon.The paper presents the initiatives taken by the government and analyses the major specific obstacles
which are met on the ground.They include beliefs, social structures, gender issues, the status of women and the
social representations of sexuality. If consensus and compromise are the usual ways of solving the problems raised
at the national level, the analysis stresses the need for a more courageous political will adapted to the urgency of
the prevailing situation.
Keywords: HIV/AIDS, Cameroon, National AIDS Control Committee, National Plan for Fight against HIV/AIDS,
resistance to change, public health policy.
RÉSUMÉ
L'infection au VIH/SIDA s'est répandue comme une traînée de poudre dans les pays d'Afrique subsaharienne.
Pour lutter contre cette pandémie, le Cameroun s'est organisé en mettant en place, avec l'aide de ses partenaires
bilatéraux et multilatéraux, une structure nationale ayant pour objectif de réduire la progression de la maladie.
Deux ans après le lancement du Plan National de Lutte contre le VIH/SIDA, une campagne de plaidoyer visant
les leaders sociaux a permis de mesurer les difficultés auxquelles une telle entreprise est confrontée dans un
environnement socioculturel aussi complexe que celui du Cameroun. L'article présente les initiatives
gouvernementales et analyse les principaux obstacles spécifiques qui surviennent sur le terrain. Ils vont des
croyances aux structures sociales en passant par la problématique du genre, le statut de la femme, les
représentations sociales de la sexualité. Si le consensus et le compromis sont les modes de résolution habituels
des problèmes nationaux, l'analyse aboutit à la nécessité d'une volonté politique plus courageuse, adaptée à
l'urgence de la situation.
Mots clés:VIH/SIDA, Cameroun, Comité National de Lutte contre le SIDA, Plan National de Lutte contre le SIDA,
résistance au changement, politique de santé publique.
Jacques-Philippe Tsala Tsala is a professor of Psychology in the Department of Psychology, University of Yaoundé I and Catholic University of Central
Africa (Cameroon). He has been Senior Consultant for the National AIDS Control Committee (NACC) since 2002. He has lead several researches and
missions in the field in Cameroon.
Correspondence to: Prof. Jacques-Philippe Tsala Tsala, Université de Yaoundé I, Université Catholique d’Afrique Centrale, BP 7011 Yaoundé, Cameroun. E-mail:
[email protected]/[email protected]
139
ORIGINAL ARTICLE
Introduction
Sur les quarante huit millions de personnes
séropositives recensées dans le monde, les trois quarts
vivent en Afrique, un continent qui ne représente que
12% de la population mondiale (ONUSIDA - OMS,
2003)! Face à une telle pandémie, de nombreux États
africains se sont mobilisés, chacun à son rythme et à sa
manière, pour lutter contre ce qui apparaît de plus en
plus clairement comme une hypothèque sur l'avenir du
continent (Gruénais, 1999). Il est bien loin le temps de
la dérision qui faisait du SIDA ‘le syndrome inventé
pour décourager les amoureux’. Les chiffres et
l’ampleur de la maladie sont aussi venus à bout des
stériles polémiques géopolitiques qui accusaient les
Occidentaux d’avoir fabriqué le SIDA pour décimer
l’Afrique ! La paranoïa de certains intellectuels et
dirigeants africains proposant des théories les unes plus
étonnantes que les autres s’est réduite face à la cruauté
des faits et à la réalité de la pandémie. L’Afrique bien
pensante a courageusement cru qu'elle pouvait
rapidement donner une réponse médicale à la maladie.
Malheureusement, l’utilisation du Virodène issu des
laboratoires de l’Université de Pretoria, le MMI d’un
scientifique congolais (RDC) (1987), le Kemron du
Kenya (1992), le Therastim de Côte d'Ivoire (2001) et
le Vanhivax du professeur camerounais Anomah Ngu
(2002) n’ont pas encore fait preuve d'efficacité. Ces
tentatives sont encouragées, soutenues et récupérées par
une idéologie africaniste qui caresse l’espoir de trouver
une solution africaine à un problème devenu
‘africain’ par la force des choses ! Face à l’ampleur et à
la vitesse de propagation de la pandémie, la revendication politicienne doit momentanément céder la place
à une action efficace et courageuse, à la mesure de
l’enjeu.
De nombreuses institutions nationales ont progressivement vu le jour aux fins de barrer la voie à la
progression de la maladie. L’ampleur du défi est telle
que, vu la modicité générale des moyens financiers et
humains des états concernés, elles n’auraient pas pu
réagir sans le soutien de la communauté internationale.
Ce soutien pose pourtant le problème de la marge de
manœuvre des États aux prises avec leurs populations
et leurs difficultés spécifiques. De sorte que le SIDA
devient un enjeu de politique nationale et
internationale (Gruénais, Delaunay, Eboko & Gauvrit,
1999).
En effet, les divers programmes de lutte sont confrontés
aux réalités d'un terrain dont la complexité ne cesse de
dévoiler les contours. Elle reste pourtant vive, la
tendance des organismes internationaux et des ‘experts’
140
de l’Afrique à vouloir nier les spécificités de chaque
pays. Si la catégorisation sommaire a pour avantage de
rendre les actions plus rapides, elle est loin de parvenir
à l’efficacité qui suppose une observation patiente,
différentielle et contextuelle.
Qu’il s’agisse de la pauvreté, de la mauvaise
gouvernance, de la gestion de la santé publique, des
problèmes de genre, de la démocratie ou des traditions,
chaque pays se situe par rapport à son passé, à son
histoire politique, à ses susceptibilités historiques et à
ses cosmogonies spécifiques.
Ces réalités n’ont pas les mêmes significations au regard
de leur vécu et de leur gestion face à l’autorité
publique de l’État. Bien plus, certains pays doivent
gérer des différences culturelles importantes au sein de
leur population. Il s’agit donc de découvrir au
préalable la finesse des situations derrière l’apparente
similitude des cas.
L’objectif de cet article est de montrer comment un
pays africain, le Cameroun en l’occurrence, réagit
concrètement face à la complexité d’une population
spécifique et diverse. Entrepris dans l’urgence, les
différents programmes et actions de lutte contre le
VIH/SIDA ont révélé les insuffisances voire la faiblesse
et l’impuissance de l’État. L’incoordination des actions
— taxée par d’aucuns de ‘modèle dissonant de
politique publique’ — au niveau national et les
injonctions contradictoires des partenaires
internationaux ont régulièrement été dénoncées avant
la mise en route du plan national en cours (Eboko,
1999; 2000; 2002; 2003; Mbembe, 2000). Les enjeux
politiques de la lutte contre le SIDA au Cameroun
sont réels. Mais ils ne sont pas suffisants pour que ce
combat soit sommairement réduit à la seule
instrumentalisation politique. Néanmoins, le
gouvernement camerounais semble avoir pris
conscience de ses lacunes en mettant en place — à la
demande injonctive de ses partenaires internationaux
— un nouveau plan multisectoriel aux fins de limiter
les contradictions et de reconstruire une cohérence
indispensable au succès de son action. Notre intérêt
portera sur les problèmes que rencontre l’application
de ce nouveau plan sur le terrain.
En effet, deux ans après avoir lancé son Plan National
de Lutte contre le VIH/SIDA (PNLS), le Comité
National de Lutte contre le SIDA (CNLS) a entrepris
d’organiser dans les dix provinces du Cameroun des
ateliers de sensibilisation et de plaidoyer auprès des élus
locaux, des parlementaires, des autorités administratives,
ARTICLE ORIGINAL
traditionnelles et religieuses. La participation à ces
ateliers des représentants des associations des personnes
vivant avec le VIH/SIDA (PVVS) et des représentants
des divers comités locaux de lutte contre le VIH/SIDA
(CLLS) a transformé ces ateliers en lieux d’échanges
fructueux, parfois ardus entre les participants,
animateurs y compris. Les PVVS et les acteurs sur le
terrain ont fait des rapports détaillés des divers
problèmes administratifs et sociaux auxquels ils sont
confrontés. De sorte que, à la fin des ateliers, les divers
représentants et leaders communautaires ont fait des
propositions concrètes aux fins de rendre plus efficace
la lutte contre le VIH/SIDA dans leur zone d’influence
et de compétence. Les données à caractère
ethnographique que nous mentionnons viennent de
ces observations sur le terrain. Elles sont certes connues
des ethnologues et anthropologues et certaines se
retrouvent ailleurs en Afrique.
Mais, au Cameroun, elles sont d’abord des éléments
régionalisés et différentiés dont le PNLS devrait tenir
compte. L’analyse que nous en faisons tient compte des
divers contextes et de notre expérience de chercheur
et de clinicien en milieu camerounais diversifié.
Après avoir décrit les mesures que le gouvernement
camerounais a mis en place pour lutter contre la
pandémie, nous rendrons compte de la situation
spécifique qui se dégage de ces nombreux et divers
échanges auxquels nous avons personnellement
participé. Notre approche consistera essentiellement à
exposer les principaux problèmes que doivent résoudre
les différents acteurs de la lutte sur le terrain. Il s’agira
non pas de mener une étude ethnologique ou
anthropologique des différents us et coutumes, mais
plutôt de montrer la spécificité d’un terrain par rapport
à un plan dit ‘national’. Nous reviendrons dans notre
analyse sur les éléments qui nous semblent mériter plus
d'attention pour rendre la lutte contre le VIH/SIDA
plus efficace dans un pays africain, le Cameroun en
l’occurrence.
LA RÉPONSE CAMEROUNAISE À LA
PANDÉMIE
SIDA et société camerounaise
Généralités sur le Cameroun
Rappelons à toutes fins utiles que le Cameroun est un
pays d’Afrique Centrale d’une superficie d’environ 475
650 km2. Il s’étire du Golfe de Guinée au Lac Tchad.
Ses principaux voisins sont le Nigeria, le Tchad, la
République Centrafricaine, le Congo, le Gabon et la
Guinée Equatoriale. Le Cameroun compte environ
253 ethnies pour près de 180 langues nationales,
dialectes et parlers à côté des deux langues officielles
que sont le français et l’anglais.
Sur le plan de son organisation politique, le Cameroun
est une république démocratique et laïque. Les
religions dominantes sont le Christianisme et l’Islam.
L’option républicaine de l’État laïc s’accommode tant
bien que mal des institutions traditionnelles que sont
les sultanats, les cités — États musulmanes du Nord, les
principautés territoriales de culture et de religiosité
Bantou, les polyarchies fondées sur l’existence des
lignages dans le reste du Cameroun. Ces différents
autorités traditionnelles sont aujourd’hui intégrées à
des degrés divers dans le système de l’administration
territoriale. On observe habituellement que
l’intégration dans la hiérarchie administrative a très peu
entamé leur ascendante influence sur les populations et
les sujets qui se réclament de leur autorité. En clair,
dans de nombreuses régions, aucune campagne de
sensibilisation ou d’information — fût-elle d’ordre
sanitaire, éducatif ou politique, ne saurait se passer de
l’assentiment même tacite de ces personnalités relais
sans prendre le risque rater ses cibles et ses objectifs.
D’où la délicatesse des campagnes de sensibilisation
contre la propagation du VIH/SIDA dans les provinces
et en zones rurales.
Une population jeune et irrégulièrement répartie
La population camerounaise se caractérise par sa très
grande diversité. On distingue: dans la partie
septentrionale majoritairement animiste et islamisée, les
Soudanais, les Hamites et les Sémites; dans le Sud
majoritairement animiste et christianisé, les Bantous, les
semi Bantous et les Pygmées.
Le taux de croissance annuelle de la population du
Cameroun est passé de 3.0% en 1976 à 2.9% en 1987
et à 2.87% 2000 selon les projections (DSCN, 1987).
Toujours à partir des mêmes sources et suivant les
calculs effectués par le FMI en octobre 2000 la
population camerounaise est théoriquement passée à
plus de 17 106 000 habitants. Les différentes
projections donnent les chiffres de 18 000 000 pour
2005, 23 000 000 pour 2014 et 25 000 000 pour 2020
dont 51% de femmes et 49% d’hommes.
C’est une population essentiellement jeune dont les
moins de 14 ans représentent 43.7% de la population
totale. Ceux dont l’âge est compris entre 15 et 24 ans
représentent 20.5%. Soit un effectif cumulé de 64.2%!
Le groupe des 25 à 64 ans représente 32.55%, tandis
141
ORIGINAL ARTICLE
que les personnes âgées de 65 ans et plus représentent
3.26%.
On observe par ailleurs un mouvement d’urbanisation
important dans le pays. Ainsi, de 1976 à 1987, la
population urbaine a crû à un rythme annuel moyen
de 5.75%. Ce qui a entraîné le doublement de la
population urbaine en 12 ans. Celle-ci atteignait
3 968 919 habitants en 1987, soit 38% de la population
totale. En 1995 la population urbaine était estimée à
45.3%. En 2000 taux est estimé à 50.4%. Les deux
grandes villes cosmopolites de Douala et Yaoundé
totalisent à elles seules 35.08% de la population urbaine
du Cameroun, soit respectivement 1 452 400 et 1 237
500 habitants. L’enquête EDS (1998) donne les
indicateurs démographiques de base et les projections
(cf.Tableau 1).
Mais une autre caractéristique de cette population est
la très grande diversité de sa densité en fonction des
régions.
Les données socioéconomiques
Le Cameroun est un pays agricole qui connaît une
certaine autosuffisance alimentaire. Producteur de
pétrole, il exporte aussi le cacao, le café, la banane, le
coton. Mais la baisse des cours des matières premières
TABLEAU I. DISTRIBUTION ET ÉVOLUTION DES INDICATEURS
DÉMOGRAPHIQUES DE BASE
Indicateurs
1976
1987
Population
Urbaine
2 184 242
3 968 919
Rurale
5 479 004
6 524 736
Ensemble
7 663 246 10 493 655
Taux d’urbanisation (%)
28.5
37.8
16.4
22.5
Densité de la population au km2
Taux de croissance annuelle (%)
3.0
2.9
Rapport de masculinité
95.9
97.0
Indice synthétique de fécondité
(1/1000)
6.0
5.6
Mortalité
Taux brut de mortalité (1/1000) 20.4
13.7
Taux de mortalité infantile (1/1000)156.5
82.9
Espérance de vie à la naissance
Hommes
43.2
52.4
Femmes
45.6
56.2
Ensemble
44.4
54.3
Structure de la population par groupe d’âge (%)*
0 à 14 ans
42.21
46.46
15 à 24 ans
18.94
17.77
25 à 64 ans
35.65
32.49
65 ans et plus
3.20
3.32
*P = projections.
Source: INS, RGPH (1976 et 1987) et EDS 98.
142
2000
7 668 000
7 624 000
15 292 000
50.14
32.81
2.87
97.3
5.14
10.1
77.0
56.7
61.3
59.0
43.70
20.49
32.55
3.26
(café, cacao, coton), la dévaluation du franc CFA et une
gestion peu rigoureuse des affaires publiques ont
conduit le pays à un seuil de pauvreté jamais atteint
auparavant. Les années 90 ont été difficiles. Les
différents programmes d’ajustement structurel (PAS)
imposés par les bailleurs de fonds et la communauté
internationale visaient à rétablir l'équilibre de la
balance des paiements et les grands équilibres macroéconomiques. Il consistait en fait à réduire les dépenses
publiques et la demande intérieure. A ce jour, l’impact
de ce plan sur le bien-être des populations commence
à peine à être perceptible. Mais il apparaît clairement
que certaines mesures du PAS ont négativement affecté
le bien-être des populations appartenant aux couches
les plus vulnérables. Le secteur public a connu son lot
de difficultés. Des vagues de déflations du personnel et
une double baisse des salaires ont précipité les
fonctionnaires et les employés des entreprises publiques
et parapubliques dans la précarité et la pauvreté.
En effet, selon les estimations de diverses sources
(ECAM II, 1998; MINEFI, 2003), entre 1984 et 1991,
le niveau de l'emploi a baissé de 10% et le chômage
atteint le taux de 17% en 1995. Il frappe principalement les jeunes et les femmes entraînant un fort
développement du secteur informel.
En 2001, par exemple, le chômage touche 8% de la
population active, dont 18.9% en milieu urbain et 2.3%
en zone rurale avec les pointes dans les villes de
Douala et Yaoundé qui enregistrent des taux de
chômage de 25.6% et 21.5% respectivement.
La récession a gravement limité les moyens des familles
à prendre en charge l’éducation, la santé et la
scolarisation de leurs enfants. La demande en éducation
est limitée par le chômage endémique des aînés. En
effet, le taux de scolarisation qui était de 90% en 1990
est tombé à 76% en 1996. La déscolarisation et la non
scolarisation sont habituellement imputées à la
paupérisation des parents et à l’insuffisance de l’offre
d’éducation. Cette situation a aussi pour conséquence
de réduire l’autorité parentale et de pousser les jeunes à
abandonner l’école pour gagner plus rapidement de
l’argent dans le secteur informel et/ou dans la
prostitution (chez les femmes et les jeunes filles).
S’agissant de la prostitution comme effet de la
pauvreté, elle concerne les femmes jeunes, mûres et
parfois mariées (Garcia, 1992; Songue, 1993; Njikam,
1998; IRESCO, 1998). D’où le risque d’une plus
grande exposition à l’infection au VIH/SIDA.
ARTICLE ORIGINAL
La couverture sanitaire
Selon le Document de Stratégie Sectorielle de Santé
adopté en 2001, on dénombrait en 1998, 135 districts
de santé, 1 298 aires de santé, 284 hôpitaux (dont 8
seulement disposent d’un plateau technique relevé),
1 042 centres de santé, 65 PMI, 138 dispensaires et
cabinets, 215 pharmacies et 142 pro pharmacies sur
l’ensemble du territoire national. Les difficultés
économiques ont conduit les pouvoirs publics à des
restrictions dommageables pour les malades (arrêt des
constructions, de l’acquisition des équipements et du
recrutement des personnels dans les formations
sanitaires; instauration du recouvrement des coûts
auprès des malades, etc.). Bien plus, les restrictions
budgétaires ont amplifié le déséquilibre des ratios qui
se situaient en 1998 en dessous des normes
internationales fixées par l’OMS. A savoir: 1 médecin
pour 14 730 habitants; 1 pharmacien pour 28 673
habitants; 1 dentiste pour 248 135 habitants; 1
infirmier pour 2 083 habitants; 1 aide-soignant pour
3 100 habitants. A quoi s’ajoute une mauvaise
répartition des personnels et des structures sanitaires sur
l’ensemble du pays.
Le secteur privé confessionnel contribue à
l’amélioration de la santé des populations en
fournissant une partie des prestations privées. Il se
compose des services de santé de l’église catholique
(179 établissements sanitaires dont 8 hôpitaux), de
l’église protestante (122 formations sanitaires dont 24
hôpitaux) et de la Fondation Ad Lucem qui administre
7 hôpitaux et 11 centres de santé. Les établissements
privés à but lucratif sont au nombre de 539. En outre,
de nombreuses ONG nationales et internationales
interviennent également dans le secteur de la santé.
La mise en place du Centre National du Médicament
et Consommables Médicaux Essentiels (CENAME) et
les centres d’approvisionnement provinciaux ont
favorisé la promotion et la distribution des
médicaments génériques en zone urbaine. Mais les
difficultés économiques que connaissent la plupart des
malades et des familles continuent à maintenir les prix
des médicaments à un niveau toujours prohibitif.
Tableau 2 indique les taux de consultations et
d’immunisation et compare les malades urbains et ruraux.
Quant au secteur de la médecine traditionnelle, il est
aussi divers que les cultures régionales du Cameroun.
On y recourt très souvent lorsqu’on n’a pas les moyens
de payer les services de l’hôpital ou lorsqu’on estime
que la maladie est d’ordre ‘mystique’. Son caractère
TABLEAU 2. TAUX DE CONSULTATIONS ET D’IMMUNISATION ET DÉPENSES DE SANTÉ
1976
Urbain
Rural
Taux de consultation dans les structures formelles (%)
Pauvres
72.2
65.0
Non pauvres
87.5
86.2
Ensemble
82.6
75.6
Taux de consultation dans les structures informelles (%)
Pauvres
28.0
35.0
Non pauvres
12.5
13.8
Ensemble
17.4
24.4
Taux d’immunisation des enfants de 12 à 23 mois (%)
Pauvres
68.1
66.9
Non pauvres
89.5
27.2
Ensemble
80.3
53.4
Dépenses moyennes de santé en francs CFA
Pauvres
7 342
5 562
Non pauvres
26 025
15 130
Ensemble
18 301
9 423
Part des dépenses de santé (%)
Pauvres
6.8
7.5
Non pauvres
6.6
8.2
Ensemble
6.6
8.0
Distance moyenne à parcourir pour atteindre un centre de santé (km)
Pauvres
Non pauvres
Ensemble
2001
Ensemble
Urbain
Rural
Ensemble
67.8
87.0
79.2
74.0
83.8
81.7
69.0
75.3
72.2
70.0
79.1
75.5
32.2
13.0
20.8
25.9
16.2
18.3
31
24.7
27.8
30.0
20.9
24.5
67.2
57.9
63.3
53.1
70.5
67.0
46.5
54.5
50.3
47.1
61.2
55.3
6 044
19 903
12 521
8 934
45 687
39 116
6 671
19 825
12 922
6 937
32 178
22 036
7.3
7.2
7.2
6.5
6.2
6.2
8.6
6.7
7.9
8.5
6.5
7.6
1.32
1.10
1.13
5.74
4.96
5.26
5.12
3.31
3.86
Source: MINEFI/DSCN : Rapport ECAM I et II.
143
ORIGINAL ARTICLE
alternatif lié aux différentes cultures nationales, à la
mauvaise répartition des services de santé et à la
paupérisation des populations lui vaut une certaine
tolérance de la part des pouvoirs publics. Ces dernières
la surveillent étroitement et veillent à lui imposer une
certaine organisation et une certaine déontologie sans
toutefois lui accorder pleine confiance (Tsala Tsala,
2001).
Depuis les années 2000 les efforts que déploie le
Gouvernement pour une gestion plus saine des affaires
publiques commencent à porter du fruit au niveau
macroéconomique surtout. En effet, des opportunités
pour réduire la pauvreté sont offertes par le macro
environnement. Ainsi des financements internationaux
ont été dégagés depuis 1996 dans le cadre de Pays
Pauvres Très Endettés (PPTE) pour l’appui des
politiques et programmes à caractère ‘social’ (santé,
éducation, travail, etc.). La lutte nationale contre le
VIH/SIDA bénéficie de cette nouvelle donnée.
Le programme multisectoriel de lutte contre le
SIDA (PMLS)
L’ampleur de la pandémie au Cameroun
Le premier cas enregistré de SIDA date de 1985. En
1985/1986, 21 cas sont recensés; 604 en 1991, 1 761
en 1994, 3 950 en 1997 et 6 843 nouveaux cas en
1998. L’effectif cumulé des cas enregistrés en 1998 est
de 20 419. Au niveau national, la lutte contre le SIDA
s’organise dès l’année 1985 avec la création du Comité
National de Lutte contre le SIDA (CNLS).
Dès le départ, les activités du CNLS consistaient
essentiellement en sensibilisation et en information
tous azimuts. Après avoir stagné entre 1985 et 1990
(moins de 1%) le taux de séroprévalence a augmenté
de manière inquiétante dépassant les 5% entre 1990 et
1995. Les femmes et les jeunes paient le plus lourd
tribut à l’épidémie (Kuate Defo, 1998). En effet, les 3/5
des personnes infectées sont des femmes et le tiers des
personnes infectées a entre 15 et 34 ans. Il a du reste
été établi que 90% des infections se font par voie
sexuelle. Chez les professionnelles du sexe (prostituées)
de Douala et Yaoundé la prévalence du HIV/SIDA est
passée de 6% en 1987 à près de 30% en 1993. Elle est
estimée à plus de 45% dans les années 2000. En 13 ans
le taux de séroprévalence a été multiplié par 14! Les
dernières statistiques du Comité National de Lutte
contre le SIDA (CNLS) estiment à 69 000 le nombre
d’enfants infectés dont 90% par transmission mèreenfant (TME) — 24 000 nouvelles infections par TME
sont attendues chaque année. Le nombre estimatif de
144
TABLEAU 3. ÉVOLUTION DE LA SÉROPRÉVALENCE AU
CAMEROUN DE 1987 À 2002 (CNLS 2002A)
Année
Séroprévalence (%)
1987
1992
0.5
2.00
1998
7.2
2000
11
2002
12
décès depuis le début de la pandémie se chiffrerait à
340 000 dont 52 000 pour l’année 1999. Quant au
nombre d’orphelins il s’élèverait à 270 000. Le Tableau
3 rend compte de l’évolution de la maladie (CNLS
2000a ; GTZ 2001).
Le CNLS/GTC, son organigramme et ses méthodes
La création et l’organisation du CNLS répondent à un
souci d’efficacité, de rapidité de l’intervention, de
contournement de la corruption et des lourdeurs
procédurales et administratives habituelles.
Sous la tutelle du Ministère de la Santé Publique
(MINSANTE) la mission essentielle du CNLS est
d’offrir un cadre national d’intervention en élargissant
la réponse nationale à l’épidémie, en coordonnant la
mise en œuvre des activités de lutte dans une approche
décentralisée. La mise en place d’un programme
multisectoriel de lutte contre le SIDA (PMLS) a donné
lieu à des plans successifs. Il s’agit entre autres du plan à
court terme (1987), du plan à moyen terme I (1988 1992), du plan à moyen terme II (1993 - 1995) (Salla
Ntounga, 1993), du plan cadre de lutte contre le SIDA
(1999 - 2000). Ces premiers plans mis en place par le
CNLS avaient pour objectifs de limiter la transmission
du VIH/SIDA par voies sanguines et sexuelle et de
réduire la transmission mère-enfant. La mise en œuvre
de ces plans s’est soldée par des résultats mitigés qui
s’expliquent par un certain nombre de facteurs
circonstanciels et structurels. A savoir: la mauvaise
coordination et l’amateurisme de certains acteurs et
partenaires sociaux sur le terrain, l’insuffisance des
premiers moyens alloués par l’État, la priorité donnée à
la réponse médicale au détriment de la communication
pour le changement de comportement et, enfin,
l’apparition des nouveaux cas de plus en plus
nombreux dans des populations jusque-là considérées
comme ‘non à risque’.
Compte tenu de ces différentes limites, un nouveau
plan stratégique a été élaboré et mis en place pour la
période 2000 - 2005. Ce plan stratégique est élaboré
alors que l’on constate une amélioration de la prise en
charge médicale des PVVS, une augmentation des
partenaires sociaux de plus en plus compétents et un
début de coordination sur le terrain.
ARTICLE ORIGINAL
La réorganisation du CNLS qui intervient en 2001
consacre la décentralisation de ses activités. Dix comités
provinciaux de lutte contre le SIDA (CPLS) et des
comités locaux et/ou communautaires de lutte contre
le SIDA (CLLS) sont créés. Ce découpage tient
compte des divisions administratives au niveau
provincial. La création des structures communautaires
de base répond au souci de plus en plus accru de
promouvoir une sensibilisation et une prévention de
proximité.
Pour l’accomplissement de ses missions, le CNLS
dispose d’un groupe technique central (GTC) qui
coordonne et gère le PMLS sur toute l’étendue du
territoire, d’une commission mixte de suivi (CMS)
chargée de conseiller le CNLS, des comités
provinciaux de lutte contre le SIDA (CPLS), des
structures d’intervention décentralisées, locales et/ou
communautaires qui sont chargées de développer la
réponse locale au niveau des communautés de base.
Le Plan National de Lutte contre le SIDA
(PNLS)
Le PNLS met un accent particulier sur la participation
des communautés. Le caractère essentiellement
communautaire implique d’une part, la mise en œuvre
des stratégies endogènes permettant un changement de
comportement effectif des cibles visées, et d’autre part,
l’implication des personnes et structures locales de tous
ordres ayant sur le terrain quelque influence sur les
populations concernées. Ce plan tient compte, entre
autres, de la préoccupation des Nations Unies de
réduire à 25% la séroprévalence en milieux jeunes
avant 2005. Il a trois composantes, à savoir : (i) un cadre
stratégique; (ii) un plan d’action (2000 - 2003) qui
précise et identifie les acteurs, l’échéancier de mise en
œuvre et les modalités de financement — il distingue
les actions immédiates sur le CNLS/GTC et les
stratégies sectorielles à élaborer et; (iii) un plan
d’urgence dont l’opération 100% condoms et le
dépistage volontaire. Le plan indique ses domaines
prioritaires, les axes stratégiques, les actions à mettre en
œuvre, les intervenants, les coûts des actions et les
financements, les indicateurs de suivi et les indicateurs
d’impact. Il est financé à hauteur de FCFA 130 141 700
000 (soit USD 185 916 714.2). Ce budget est assuré en
grande partie par l’ONUSIDA et la Banque Mondiale
dans le cadre de la remise de la dette du Cameroun.
L’objectif général de ce plan est de permettre au
Cameroun de faire face à l’épidémie en réduisant le
taux de prévalence au seuil critique de 10% et de
limiter son impact socioéconomique. Il s’agit
concrètement (i) de minimiser les risques de
contamination au VIH/SIDA chez les enfants de 5 à 14
ans en leur apprenant un style de vie sain et en
promouvant le développement des comportements
sexuels responsables; (ii) de développer des mécanismes
d’information des populations sexuellement actives en
passant de la simple IEC à la Communication pour le
Changement de Comportement (CCC) en privilégiant
la communication de proximité; (iii) de réduire la
transmission mère-enfant (TME) et de minimiser le
risque de contamination par la transfusion sanguine;
(iv) de développer les mécanismes de solidarité vis-àvis des PVVS et leurs familles par l’assurance d’une
prise en charge médicale et psychosociale.
Les partenaires
Pour mener à bien son plan de lutte contre le
VIH/SIDA, le CNLS travaille en partenariat avec les
ONG déjà présentes et en action sur le terrain. Ces
organisations ont comme avantages indéniables, outre
leur nombre, leur très grande capacité de mobilisation
et leur accès facile aux communautés. Mais elles sont
insuffisamment professionnelles et structurées,
inégalement réparties sur le territoire et demeurent un
phénomène essentiellement urbain.
Les motivations des ONG et associations ne sont pas
toujours claires. La gestion des subventions et des divers
dons est loin d’être transparente. Ce qui a pu créer des
frictions entre les différentes autorités administratives et
elles. Néanmoins, des dispositions particulières ont été
prises aux fins d’éviter que certains aventuriers ne se
cachent derrière les ONG pour se faire de l’argent
facile.
Dès les débuts de la lutte contre le SIDA, certains
promoteurs d’ONG ont profité de la suspicion de
corruption dont l’administration publique
camerounaise était l’objet de la part des bailleurs de
fonds pour s’enrichir personnellement. Aujourd’hui
seules les associations et ONG les plus importantes et
les plus efficaces survivent.
Les associations de personnes vivant avec le VIH/SIDA
(PVVS) sont particulièrement motivées. Certaines sont
sous contrat temporel de consultant dans des groupes
thématiques dans les GTP et GTC. Ils interviennent
dans l’appréciation de certaines décisions les
concernant, la sensibilisation, l’information, la
formation et le soutien psychosocial. Certaines d’entre
elles témoignent publiquement de leur expérience et
de leur vécu pour informer et éduquer les
communautés.
145
ORIGINAL ARTICLE
Le CNLS/GTC fait aussi appel à de nombreux
prestataires de service, tels que les cabinets de
communication, les consultants et les experts pour
leurs compétences diverses. Certaines ONG ont un
statut de prestataire de service lorsque leurs activités
sont d’une certaine importance. C’est le cas du
Programme de Marketing Social au Cameroun
(PMSC) qui en partenariat avec le CNLS distribue des
préservatifs et anime certaines formes
d'information/sensibilisation destinées aux jeunes.
La Réponse Sectorielle
Le partenariat s’est progressivement étendu aux
institutions et entreprises privées et publiques. Le
CNLS a encouragé et soutenu des plans sectoriels de
lutte contre le VIH/SIDA initiés par les ministères et
certaines entreprises publiques, parapubliques et
privées. A ce jour, l’ensemble des ministères et de
nombreuses entreprises disposent d’un plan stratégique
de lutte contre le VIH/SIDA. Ces plans sont
coordonnés et soutenus par la section ‘Réponse
Sectorielle’ du CNLS. Il s’agit souvent de plans
spécifiques tenant compte de l’analyse de la situation
des travailleurs et employés et cadres des entreprises et
des populations cibles des ministères: écoliers et élèves,
militaires, enseignants, femmes, populations marginales
et/ou déplacées, transporteurs routiers, etc. Ils
contiennent des indices permettant un meilleur
suivi/évaluation. Ces entités institutionnelles financent
elles-mêmes leur plan en grande partie. Le CNLS
apporte une contribution d'appoint d'ordre logistique,
ses structures de communication et des ressources
humaines. Le partenariat avec certaines entreprises
privées a permis la détaxation de certains médicaments
au profit des PVVS.
La Communication pour le Changement de
Comportement (CCC)
La CCC a pour mission d’organiser la communication
du CNLS en matière de lutte contre le VIH/SIDA.
Cette section est constituée de journalistes et d’experts
CCC (psychologues, sociologues, anthropologues et
communicateurs marketistes). En retard sur le PMLS, le
plan stratégique national de CCC a été adopté en juin
2004 (CNLS, 2004). Il a pour objectif essentiel de
coordonner, de planifier et d’organiser une communication cohérente et efficace au service du PMLS. Les
médias privés et les médias publics sont des partenaires
incontournables dans la mesure où l’information et la
sensibilisation des populations constituent une priorité
de la stratégie nationale. Ils doivent promouvoir le
CCC et des stratégies telles que l’utilisation du
préservatif et le dépistage volontaire. Des conventions
146
sont signées avec des radios émettant en langues
locales, outre le français et l’anglais, les agences de
communication et de publicité. Le CNLS finance et
soutient les initiatives correspondant à sa politique de
communication.
La section ‘Réponses Locales’ et ses missions sur le
terrain
L’option de la proximité avec le client se traduit par la
création au sein du CNLS d’une section ‘réponses
locales’ qui développe essentiellement le processus
participatif (CNLS, 2002) et s’attèle à soutenir les
communautés de base est représentée à tous les niveaux
des structures décentralisées du CNLS (village,
quartiers, sous-chefferies). En milieu urbain les
associations de jeunes ou de femmes, les clubs santé
dans les écoles, certaines associations professionnelles
(chauffeurs, prostituées, etc.), les membres des
associations religieuses ou ceux des entreprises sont
considérés comme des communautés de base.
La section soutient les Plans Communautaires de Lutte
contre le SIDA (PCLS) qui vont plus loin que la
simple information-sensibilisation. Pour bénéficier du
soutien logistique et financier de la section, ces plans
doivent prévoir une approche participative méthodique
comportant des étapes précises (diagnostic, synthèse et
une analyse des données relatives aux besoins et
problèmes, mise en place d'un comité local,
l’élaboration d’un plan d’action, un suivi-évaluation de
type participatif). En cas d’acceptation du PCLS par les
instances locales de la section, l’aide financière est
directement virée dans le compte spécialement ouvert
à cet effet. Ces exigences supposent une plus grande
implication des communautés et réduisent les risques
de distraction des fonds et les initiatives aventureuses.
En outre, la section propose des formations au
processus participatif, à la communication de masse et à
la gestion comptable et financière aux différents
responsables de communauté.
La section ‘Réponses Locales’ est aussi chargée de
l’appui spécifique aux associations de PVVS. En effet,
les PVVS sont confrontés à de nombreuses difficultés
qui aggravent la souffrance liée à leur statut
sérologique.Voilà pourquoi la section recommande
fortement que les associations de PVVS fassent l’objet
d’une attention soutenue dans les PCLS. Cette
préoccupation est déterminante pour obtenir son
soutien. Elle doit se traduire par l’implication des
PVVS dans toutes les activités de prise de conscience
et d’information à travers les témoignages de
proximité au niveau local, les activités de plaidoyer et
ARTICLE ORIGINAL
de promotion des droits des PVVS, le soutien de leurs
activités génératrices de revenus, la mise en place des
soins à domicile, le renforcement des capacités de leurs
associations, l’assistance à leurs familles et aux
orphelins, la promotion de l’accès au soin et
médicaments pour les maladies opportunistes.
La Réponse Médicale
La section ‘Réponse Médicale’ coordonne toutes les
activités de soins (prise en charge médicale et
psychosociale) et de recherche. Elle est en relation avec
tous les centres de santé suivant les malades du SIDA et
les PVVS. Elle collecte les données relatives aux
malades et aux PVVS et coordonne les activités de la
dizaine de centres de dépistage volontaires ouverts à ce
jour.
La Réponse Médicale a aussi pour objectif de réduire
l’insécurité transfusionnelle due à des pratiques
hasardeuses et inorganisées. Elle a pour mission de
promouvoir l’adoption et la diffusion de la politique
nationale de transfusion sanguine, la formation du
personnel, la création et l’équipement des centres de
prise et de dons de sang, la sensibilisation au don de
sang et la disponibilité du sang testé dans les formations
sanitaires (Pinay, 1997). Ces différentes activités sont
soutenues par les partenaires nationaux et
internationaux du CNLS (Croix-Rouge, Union
Européenne, OMS, ONUSIDA, etc.)
La transmission mère/enfant (TME) est une
préoccupation majeure de la Réponse Médicale. La
plupart des parturientes qui se présentent dans les
grands centres hospitaliers de Yaoundé et Douala
bénéficient d’un suivi médical spécifique avec test du
VIH/SIDA obligatoire. Les femmes séropositives sont
gratuitement prises en charge jusqu’à l’accouchement.
Cette prise en charge s’efforce de se conformer aux
protocoles proposés par les partenaires internationaux
(UNICEF, ONUSIDA, OMS, 2001).
Par ailleurs, la baisse des prix des antirétroviraux est un
des défis que le gouvernement camerounais s’est
imposé. Grâce à de nombreuses négociations avec les
organes spécialisés de la Banque Mondiale et de
l'ONU (Fonds Mondial pour la lutte contre le SIDA)
ces médicaments sont passés de 300 000 et 400 000
FCA à 18 000 et 27 000 FCFA aujourd’hui. L’objectif
avoué est de les réduire à 5 000 CFA.
Comme nous pouvons nous en rendre compte, le
Cameroun a fait des efforts importants pour se doter
d’une structure nationale aux fins de réduire la
pandémie du VIH/SIDA sur son territoire. La descente
sur le terrain que nous avons effectuée nous a montré
la complexité des cibles et de leurs différents
environnements ainsi que les limites de certaines
dispositions du PMLS.
LES FOURCHES CAUDINES DU TERRAIN
Les verrous socioculturels
L’organisation sociale et le statut de la femme
camerounaise
Si elles semblent confuses et parfois inopérantes dans
les grandes villes, les structures et l’organisation sociales
traditionnelles marquent encore la vie et les
comportements des populations en zone rurale. Dans
certains cas, les leaders traditionnels sont des chefs
religieux ayant une autorité et une influence morale
importante sur les individus.
De la sorte, tout discours et toute pratique visant la
sexualité, le statut de la femme, la famille ou les us et
coutumes ne sauraient se déployer efficacement en
dehors de leur espace d’influence. Le souci de cohésion
sociale conduit tout intervenant, quel qu’il soit, à
rechercher un consensus qui réduise les tensions et les
contradictions sociales. C’est tout le problème de la
logique républicaine face aux nombreuses traditions
camerounaises. L’association des leaders religieux et
traditionnels au PNLS est un élément important de la
stratégie nationale de lutte contre le VIH/SIDA au
Cameroun. Elle suppose une démarche pédagogique
paradoxale visant à la fois le consensus social et la
ferme et réaliste détermination que commandent
l’urgence de la situation et la progression fulgurante de
la maladie. Ce dilemme récurrent est le lot des
autorités administratives, représentant de la
République, dans les régions à structure sociale
fortement traditionnelle.
En effet, qu’il s’agisse de la sensibilisation ou de
l’information et de la formation des communautés, le
CNLS recommande habituellement à tous les intervenants de considérer les savoirs et les savoir-faire
traditionnels comme des expériences dont ils peuvent
positivement titrer partie. Il conseille de tenir compte
des différentes sensibilités et des interactions institutionnelles, culturelles, démographiques et socioéconomiques. Les différentes campagnes de sensibilisation sont balisées par ces contraintes pédagogiques
voire stratégiques. A l’image des rapports que l’État
républicain du Cameroun entretient avec les traditions,
les acteurs de la lutte contre le VIH/SIDA se gardent
147
ORIGINAL ARTICLE
constamment d’exacerber les susceptibilités des
populations attachées à leurs traditions. On évitera par
exemple de prôner une égalité de genre qui réduirait
les effets de la prévention et de la sensibilisation.
Privilégiant la santé des personnes, les campagnes de
sensibilisation et d’information se contentent,
concernant la polygamie par exemple, d’insister sur la
fidélité des partenaires toujours possible dans ce type
de configuration matrimoniale traditionnelle. Il s’agit
d’un problème itératif qu’ont rencontré auparavant les
différentes campagnes d’éducation à la parenté
responsable (EPR) et de contrôle de l’exposition au
risque de grossesse. Etant entendu que 90% des
infections au VIH/SIDA se font par voie sexuelle. Au
Cameroun, une campagne de santé publique qui
semble se soucier prioritairement de ménager
l’adversaire en épousant les contours de son terrain se
donne-t-elle les moyens d’atteindre ses objectifs? Les
premières évaluations du PNLS nous le diront.
Il nous semble alors que, pour être porteuse, la lutte
contre le SIDA doit passer par une approche genre qui
reconsidère la relation homme/femme. Ce rapport qui
est l'un des piliers de la structure sociale traditionnelle
ne saurait être modifié sans remettre toute la société en
question. Le problème est d’ordre plus général en
Afrique donc au Cameroun (Mburano Rwenge, 1998).
Il dépasse la seule perspective de l’infection au
VIH/SIDA. Les observations faites par les différents
intervenants sur le terrain confirment les résultats des
enquêtes et études menées sur la problématique genre
au Cameroun (MINCOF-PNUD, 2001).
Soumise au mariage et à la maternité comme
obligations éthiques (Tsala Tsala 1986; 1989; 1990;
1996) à la polygamie qui est la forme normative du
mariage au Cameroun (Mbarga, 1966; Mbella Mbappe,
1970; Nkouendjin-Yotnda, 1977), la femme
camerounaise a une très faible maîtrise de son corps et
de sa sexualité face aux sollicitations de son partenaire.
L’ordre traditionnel tarde à lui accorder cette liberté
élémentaire de se protéger au-delà et en dépit de ses
‘obligations’ traditionnelles de procréer et de se marier.
Bien plus, certaines coutumes régionales la rendent
systématiquement coupable du décès de son mari et la
soumettent à des rites de propitiation pour le moins
dégradants. D’autres, attachées au lévirat lui imposent
d’épouser un des frères ou grands fils du mari défunt.
Puisque par le principe du mariage traditionnel, elle
appartient à la famille de son mari défunt (Tsala Tsala,
1990). Pire encore, lorsqu’elles sont malades, leur mari
148
peuvent refuser de se soumettre au test HIV sans
redouter la moindre contrainte!
Par ailleurs, l’attitude pro nataliste de certains maris
contraint les femmes à accepter une sexualité à risque à
leur corps défendant. Il s’agit là d’un sujet de
préoccupation majeure au regard des enquêtes les plus
récentes qui montrent que 64% des filles de 15 à 19
ans sont mariées ou vivent en union alors que dans la
même tranche d’âge les garçons ne sont pas encore
mariés (EDSC, 1998). A travers le Ministère de la
Condition Féminine, l’État lutte avec plus ou moins de
succès contre des pratiques traditionnelles en cours
dans certaines régions telles que les mariages précoces
(moins de 14 ans), le rapt et le viol (MINCOF 2003;
MINCOF-UNICEF, 2002).
Au-delà d'un discours répétitif qui fait habituellement
référence à une hypothétique identité culturelle, l’État
camerounais semble avoir opté pour une stratégie
attentiste et prudente pour préserver les délicats
équilibres que lui imposent la diversité de ses sociétés
et une histoire nationale qui a fini par faire cohabiter la
tradition et la modernité, les croyances traditionnelles
et les religions nouvelles (christianisme, islam), les
anglophones et les francophones. Cette stratégie de la
prudence politique en matières sociale et familiale s’est
traduite, entre autres, par la longue élaboration d’un
code de la famille et des personnes (plus de 20 ans)
dont la publication et l’application semblent renvoyées
au calendrier grec depuis l’année 2000.
En somme, le discours aux communautés consiste à
leur présenter le VIH/SIDA comme un ennemi
commun qu’elles doivent combattre collectivement.
Malheureusement, l’adresse aux communautés
continue à se conformer aux traditionnelles divisions
asymétriques au risque de rater sa cible.
Des connaissances et des croyances sur le SIDA
Aujourd’hui, les connaissances sur le VIH/SIDA et les
informations relatives aux IST/SIDA, à leur mode de
transmission et aux moyens de les prévenir sont de
mieux en mieux assimilées. Mais leur qualité varie en
fonction du sexe, de la zone d’habitation et de
l’instruction. En effet, les zones rurales semblent plus
défavorisées par rapport aux zones urbaines, les
personnes peu instruites par rapport à celles qui sont
scolarisées, les femmes par rapport aux hommes. Ce
que confirment de nombreuses enquêtes sur le sujet
(Houehougbe, Akam & Rafa Umana, 1990; FOCAP,
1995).
ARTICLE ORIGINAL
Mais certaines résistances apparaissent ça et là se
traduisant par des croyances, des pratiques et des
comportements à risque. De nombreuses maladies qui
se prolongent et les décès qui s'en suivent sont parfois
attribués à la sorcellerie. D’aucuns prétendent que le
VIH/SIDA comme le cancer peuvent s’attraper par un
mauvais sort lancé par une personne malveillante ou
jalouse. En conséquence de quoi, malgré la répression
des pouvoirs publics, dans les grandes villes et surtout
dans les zones rurales (Tsala Tsala, 2001), des
guérisseurs et tradithérapeutes prétendent encore
pouvoir guérir du VIH/SIDA.
Par ailleurs, l’insistance sur le comportement sexuel a
conduit à négliger les autres facteurs de risque. C’est le
cas du ‘lavement (rituel) des veuves’ qui consiste à
rompre l'interdiction de la toilette intime imposée à la
veuve. La toilette est faite par plusieurs femmes dans
des conditions d’hygiène souvent douteuses. Il en est
de même du manque de précaution observé lors de
certaines pratiques rituelles telles que la circoncision,
les scarifications, l’excision, le tatouage et l’autopsie
traditionnelle. Les mêmes instruments trempés dans les
mêmes décoctions sont proposés aux individus et aux
patients par les mêmes personnes. Il n’est pas rare que
des personnes âgées et des enfants très jeunes soient
ainsi infectés par le virus. On peut alors continuer à
justifier la maladie et le décès par la sorcellerie ou le
‘poison lent’! Dans les grandes villes, l’usage par les
enfants des objets souillés reste une préoccupation pour
les parents et les instituteurs. Certains enfants s’amusent
à débusquer des préservatifs usés pour en faire des
ballons à gonfler.
Les condoms masculin et féminin
Le condom est une source de malentendu perpétuel au
Cameroun. Entre ceux qui en font une panacée
universelle et ceux qui le refusent catégoriquement, il y
a un continuum d’attitudes peu aisées à déterminer.
Les premières campagnes ‘100% condoms’ promues
dans le plan d’urgence et les campagnes de
sensibilisation nationales auxquelles nous avons
participé ont rendu compte de la complexité d’un
discours recommandant le port du préservatif.
Dans un contexte culturel où la sexualité est
traditionnellement liée à la vie et à la procréation, le
condom apparaît d’emblée comme une gène
psychologique et mécanique (IRESCO, 1997; Calves,
1999). Son utilisation pose de nombreux problèmes en
zones rurales. Il n’est pas toujours disponible et les
conditions de conservation ne sont pas toujours
garanties. Ceux qui, surtout parmi les jeunes, se
plaignent de la diminution du plaisir dont le condom
serait responsable se plaisent à dire avec la plus grande
légèreté qu’on ne saurait ‘sucer un bonbon avec son
emballage’. Des prostituées nous ont régulièrement
révélé que certains clients leur proposaient plus
d’argent si elles acceptaient des relations non protégées!
Les différentes campagnes de sensibilisation
recommandent aux hommes et aux femmes de
disposer de condoms dans le cas où leur partenaire
n’en aurait pas. Cette recommandation se heurte à de
nombreux malentendus. Car la possession de condoms
vous fait taxer de débauche ou d'infidélité et installe un
climat de méfiance entre les partenaires.
Quant au condom féminin, sa promotion en grande
pompe au cours de l’année 2003 s’est soldée par un
échec complet. D’abord parce qu’il n’est disponible
que dans les grandes villes et en quantité souvent
limitée. Ensuite, il est quatre-vingt fois plus cher que le
condom masculin. Enfin, les femmes le trouvent trop
compliqué à utiliser et leurs partenaires n’en veulent
pas du tout. Au-delà des aspects technologiques de son
utilisation, le condom féminin pose le problème de la
maîtrise de l’acte sexuel. Dans la plupart des traditions
ethniques du Cameroun, l’initiative et la conduite de
l’acte sexuel reviennent à l’homme. Il peut aisément
décider de mettre un préservatif, sa partenaire peut le
lui recommander. Mais il acceptera difficilement que sa
partenaire prenne unilatéralement la décision de se
protéger avec des moyens qui lui soient propres. Ceci
pourrait être perçu comme une tentative sacrilège et
émasculante de maîtrise et de contrôle de l’acte sexuel.
L'introduction du condom féminin s’est avérée
prématurée a posteriori dès lors que l’utilisation du
condom masculin n’avait pas encore réduit toutes ses
résistances.
Bien plus, lorsque le condom est admis, il peut faire
l’objet d’une utilisation fétichiste. En effet, certains
utilisateurs pensent se prémunir de l’infection au
VIH/SIDA par le seul fait d’en posséder un, d’en
utiliser sans prendre les précautions nécessaires à son
efficacité. Le condom prend alors un statut d’amulette
qui ne tient pas compte de l’infection comme
phénomène relevant de la logique biologique. Or il ne
s’agit pas tant de posséder ou d’utiliser un condom que
de s'en servir correctement. Les dernières campagnes
de sensibilisation semblent avoir intégré cette
dimension si souvent occultée.
Enfin, les religieux (protestants, catholiques,
musulmans) accusent le gouvernement et ses
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ORIGINAL ARTICLE
partenaires multilatéraux de la campagne ‘100%
condoms’ d’inciter la jeunesse à une sexualité précoce,
active et dévergondée du fait de leur distribution
massive et de leur vente à bas prix. Ce produit
subventionné apparaîtrait d’emblée comme le moyen le
plus indiqué pour une sexualité sans risque et sans
trace (VIH/SIDA, IST, grossesse). La polémique s’est
soldée par un compromis qui a modifié le slogan et
hiérarchisé les moyens individuels de lutte contre la
maladie. Les religieux et le CNLS se sont mis d’accord
pour le trinôme :‘Abstinence-fidelité-condom.’
Le condom devient le moyen ultime lorsqu'on ne peut
être ni chaste, ni fidèle.
Le dépistage
Nous avons déjà signalé que le dépistage est
systématique pour les femmes enceintes se présentant
dans des centres sanitaires urbains d’une certaine
importance. Il en est de même pour les donneurs
volontaires de sang. Mais le dépistage volontaire qui est
l’une des stratégies du PNLS pose de nombreux
problèmes. A l’origine, il répond à la volonté de mieux
connaître et de contrôler l’ampleur de la pandémie.
Outre la connaissance du statut sérologique de chacun,
cette stratégie vise à améliorer l’efficacité de la prise en
charge médicale et psychosociale des PVVS. Etant
entendu qu’une prise en charge rapide augmente
l’efficacité du traitement.
Pourtant, les dispositions prises pour le dépistage
volontaire et gratuit au sein des structures sanitaires
rencontrent très peu d’engouement de la part des
populations. Certaines entreprises ont organisé des
dépistages volontaires et gratuits en leur sein en
garantissant l’anonymat et la prise en charge médicale
totale des PVVS ainsi révélées.Très peu d’employés et
cadres ont accepté de s’y soumettre.
En plus du fatalisme propre à une certaine logique
religieuse, il est assez courant d’entendre des gens nous
répondre:‘Si je connais mon statut sérologique qu’estce que cela change?’;‘Je n’aurais jamais les moyens de
me soigner’;‘Je ferai la maladie si je le savais’;‘Peut-on
vraiment se prémunir contre le SIDA?’. Et même,‘Il
faut bien mourir de quelque chose’;‘On a vu des
séropositifs vivre plus de dix ans sans se soigner’, etc.
L’expérience nous a aussi montré que ceux qui
prônaient le dépistage systématique et obligatoire
n’étaient pas prêts à s’y engager eux-mêmes.
De toute évidence la pratique du dépistage volontaire
renvoie les uns et les autres à une responsabilité difficile
à assumer. Il est encore largement vécu comme un
150
dévoilement à l’autre alors même qu’il est d’abord un
dévoilement à soi. Cette attitude peut aussi s’expliquer
par la forte discrimination et la stigmatisation dont les
PVVS et les malades sont encore victimes aujourd’hui.
Stigmatisation et discrimination
En effet, la stigmatisation et la discrimination sont des
fléaux surajoutés auxquels la lutte contre le VIH/SIDA
est confrontée aujourd’hui. Ces phénomènes aggravent
le vécu de la maladie et affectent lourdement les
personnes déjà infectées. Or parmi les mesures mises
en œuvre par le CNLS pour juguler la pandémie, les
questions relatives à l’éthique et aux droits de l’homme
ont très peu été prises en compte au départ. On peut
clairement observer que de nombreux préjugés
accompagnent les PVVS. D’aucuns ont vite associé la
maladie à diverses déviances comportementales et
sociales. Au départ, le SIDA a été perçu comme une
infection touchant les toxicomanes, les prostitués et les
homosexuels, des personnes à la moralité et aux
comportements sexuels douteux, en somme. A ce jour
une personne atteinte du VIH est taxée
d'irresponsabilité comportementale. Ce qui correspond
à la stigmatisation qui consiste à désigner puis à blâmer
une personne pour un acte répréhensible dont elle
porte la marque. La stigmatisation vise à dénoncer, à
prévenir, à faire honte, à exclure et à dévaluer.Toutes
choses qui entraînent frustration et désespoir chez des
personnes qui, plus que jamais, ont besoin d’être
entourées et soutenues par les leurs.
La stigmatisation qui prend parfois des allures
hystériques ne s’explique pas seulement par la
méconnaissance de la maladie et de ses modes de
transmission. Elle rend compte de la complexité des
rapports entre soi et une maladie dont on peut être
porteur sans (vouloir) le savoir. Projection pour le
moins révélatrice qui peut avoir pour objet généralisé
tous ceux qui de près ou de loin représentent la
maladie ou la lutte contre elle. Le représentant d’un
CLLS d’une petite communauté rurale nous a dit
comment son groupe essuyait des quolibets de défiance
et de méfiance, un tantinet railleurs, tels que ‘les gens
du SIDA’,‘les SIDA’.
La stigmatisation a lieu partout et à tous les niveaux en
dehors de toute règle et de toute déontologie. Sur le
lieu de travail, il arrive que, en toute illégalité, le test
HIV/SIDA soit exigé à l’embauche ou au moment de
la signature du contrat. Parfois le dossier médical est
transmis à l’employeur sans que l’intéressé soit au
courant ou ait donné son accord. La loi sur les congés
de maladie et sur la prévoyance sociale qui prévoit que
ARTICLE ORIGINAL
le travailleur pent prendre des congés pour cause de
maladie n’est pas toujours appliquée. Les travailleurs
séropositifs reçoivent des pressions de la part des
employeurs qui leur demandent de démissionner du
fait de leurs absences répétées. L’isolement, l’ostracisme
ou la quarantaine involontaire ou sournoisement
organisée dont ils sont victimes ajoutent à leur
désarroi. La violation de leurs droits professionnels
s’accompagne d’attitudes et de comportements visant à
révéler leur statut sérologique à tous. Ce qui a pour
effet attendu de les discréditer et de les empêcher
d’entreprendre la moindre démarche de revendication
légitime.
Au niveau administratif, les PVVS se voient parfois
refuser des actes auxquels ils ont droit. Les banques, les
assurances et certaines représentations diplomatiques
demandent de plus en plus à leurs clients de se
soumettre au test HIV/SIDA. Faute de quoi ils
n'obtiennent ni prêt bancaire, ni visa et ne peuvent
signer le moindre contrat.
Les PVVS ne sont pas plus en sécurité dans les
hôpitaux et formations sanitaires. La violation du secret
médical est devenue chose courante. Certains
professionnels de la santé n’hésitent plus à désigner les
patients porteurs du virus, à leur insu. Ils les font
parfois observer comme des animaux en captivité.
Cette attitude est loin de s’apparenter à une démarche
pédagogique ou de sensibilisation. Elle tient plus d’un
voyeurisme stigmatisant qui ne parvient pas à cacher
l’angoisse des personnes en relation thérapeutique avec
les malades. Certains personnels de santé vont même
jusqu’à refuser le contact avec les malades, les privant
ainsi des soins dont ils ont besoin. Une autre pratique
consiste à dépister systématiquement tous les malades à
leur insu. Bien plus, les informations sur le diagnostic
et sur les thérapies ne leurs sont pas toujours données.
Il faut dire que les personnels soignants, les médecins y
compris, n’ont pas toujours eu une formation
professionnelle et/ou scientifique leur permettant de
prendre en charge les PVVS et les malades. Certains
ont même des attitudes et des propos inattendus
propres à des ignorants sur la maladie.
Au niveau de la recherche, encore embryonnaire au
Cameroun, certains chercheurs - même les plus
éminents, évoluent en dehors de toute déontologie.
Avec l’aval des autorités publiques et des media locaux
parfois, ils dépistent, testent et proposent des thérapies
qui n’ont reçu aucune légitimité scientifique et qui ne
sont fondées sur aucun protocole d'évaluation
médicale. Les PVVS sont ainsi réduits au rôle de
cobayes faciles, souvent à leur insu.
En milieu familial, le membre vivant avec le VIH est
souvent désigné comme la cause de tous les malheurs
et de tous les fléaux de la généalogie. Les mentalités
rétrogrades font de lui la peste du groupe qu'il faut
écarter et éloigner à tout prix. Cette attitude de rejet
vise non seulement le malade ou le PVVS mais aussi sa
famille et son entourage. Pour éviter la stigmatisation
pour elles-mêmes, certaines familles se séparent de
leurs membres malades. On a vu des parents parquer
leurs enfants séropositifs dans des réduits comme des
pestiférés. D’autres ne se gênent pas pour révéler la
séropositivité des leurs afin de mieux les isoler.
Dans les villages et les villes les veuves et les orphelins
vivent parfois un véritable calvaire dès lors qu’ils sont
soupçonnés d’être infectés. Il s’ensuit des mesures
discriminatoires concrètes qui parachèvent leur
isolement. Comme des intouchables, leurs couverts et
leurs linges sont systématiquement séparés de ceux des
autres membres de la famille. La veuve peut être
expulsée et voir ses biens confisqués ou spoliés par la
famille du défunt. Ses enfants lui sont enlevés. Elle est
très souvent accusée d’avoir infecté son mari, sans
preuve bien entendu.
Enfin, de manière parfois inattendue, la stigmatisation
et la discrimination sont présentes dans les lieux de
culte et dans certaines pratiques religieuses. Si la
plupart des grandes religions (christianisme, Islam)
s'organisent pour porter assistance spirituelle voire
matérielle aux PVVS, certains autres groupes religieux
refusent assistance spirituelle et réconfort moral aux
PVVS parce que ces derniers sont réputés avoir péché.
Leur maladie est alors considérée comme un châtiment
divin. Ce discours est courant dans certains groupes
religieux qui soutiennent et proclame que le
VIH/SIDA est une calamité envoyée par Dieu afin que
les hommes se convertissent. La culpabilisation à
outrance des PVVS réduit non seulement leur espoir
de vivre mais surtout leur espérance, lorsqu'ils sont
croyants. Bien plus, livrés à leur solitude, ils se font
berner et ruiner par des sectes guérisseuses qui
prétendent leur offrir une guérison miraculeuse.
On comprend alors que la stigmatisation et la
discrimination finissent par être plus pernicieuses que
la maladie elle-même. Elles rendent la prévention
difficile en repoussant les malades et les PVVS dans
l'obscurité et la clandestinité. Ce que dénonçait le
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ORIGINAL ARTICLE
directeur de ONUSIDA quand il prévenait :‘La
stigmatisation liée au VIH/SIDA est provoquée par un
mélange détonant de honte et de peur... Honte parce
que la sexualité ou la toxicomanie qui transmet le VIH
est voilée de tabous et de jugements moraux... Peur
parce que le SIDA est relativement considéré comme
mortel! Répondre au SIDA par la condamnation ou
par des insultes à l’égard des personnes vivantes avec le
virus n’est que repousser l’épidémie dans la
clandestinité créatrice des conditions idéales à la
propagation...pourtant, il faut remplacer la honte par la
solidarité et la peur par l’espoir. ’ (Piot, 2001).
Méprises et malentendus autour de la lutte
La gestion administrative et régionale de la mission
Les GTP représentent le CNLS au niveau de la
province, ils ont une autonomie administrative et
financière. Ils s’adressent aux délégués provinciaux du
MINSANTE pour les activités relevant de la Réponse
Médicale.Tous les dix GTP étaient médecins jusqu’à la
nomination en 2003 d’un inspecteur des affaires
sociales dans un GTP. Si les rapports entre le
MINSANTE et le CNLS sont clairs et permanents. Il
n’en est pas de même de ceux entre les GTP et les
Délégués Provinciaux du MINSANTE. L’autonomie
des GTP irrite habituellement ces derniers dont le rôle
est de coordonner toutes les activités de santé publique
au niveau de la province. Par ailleurs, les GTP gèrent
souvent des budgets assez importants alimentés d’une
part par le MINSANTE et d’autre part par les
organismes spécialisés de la Banque Mondiale. Les
rapports entre les deux responsables provinciaux —
dont les actions sont pourtant complémentaires et
clairement définies — se caractérisent par une rivalité
conflictuelle qui déteint sur les activités provinciales de
lutte contre le VIH/SIDA.
Les conflits tendent à se réduire au fur et à mesure des
rencontres de clarification entre les responsables. Le
VIH/SIDA est de plus en plus reconnu par ces différents
intervenants comme un défi dépassant la seule
médicalisation dont elle a si longtemps fait l’objet.
Jusqu’en 2003, l’organigramme du CNLS ne prévoyait
pas de structure départementale. La limitation des
structures administratives et la promotion des structures
communales correspondent au souci de réduire les
lourdeurs administratives et les risques de corruption et
de détournement des fonds alloués. Les projets des
CLLS sont directement financés dans les conditions
décrites plus haut. Mais on s’est très vite rendu compte
que rien de concret ne pouvait se faire sans l’appui des
152
préfets qui connaissent mieux les populations locales
dont ils ont la charge. La revendication des préfets a été
entendue et la création des structures départementales
a été décrétée par le MINSANTE avant même que
notre mission ne soit terminée.
Cette multiplication des structures a pour but, entre
autres, de faciliter le travail des CLLS sur le terrain.
Lorsque les autorités administratives ne sont pas
impliquées, les CLLS font face à de nombreuses
difficultés qui vont du refus de l’autorisation d’accéder
aux populations (chefferies) racket en passant par
l’intimidation, les menaces et la désinformation. Les
CLLS et les ONG locales font souvent du porte à
porte avec des moyens dérisoires s’exposant ainsi à
toutes sortes de risques. Pour marquer leurs réticences
et leur refus voilé, certaines autorités traditionnelles
leur proposent de rencontrer les populations les jours
où elles ne sont pas disponibles ou dans des lieux
inaccessibles.
A quoi s’ajoutent de nombreuses inégalités régionales.
Les régions les plus touchées ne sont pas celles qui
bénéficient des structures de prise en charge les plus
appropriées. Les centres de dépistage sont concentrés à
Yaoundé et à Douala. La distribution des ARV est
mieux faite dans ces deux grandes villes que dans
d’autres.
‘Le SIDA a l’argent’
L’un des problèmes de fond auquel le CNLS est
confronté est l’idée que ses partenaires et les
populations se font d’elle.Tout ce qui touche à la lutte
contre le VIH/SIDA au Cameroun est réputé avoir des
moyens financiers sans limite. Que de fois avons nous
personnellement été accueilli et avons nous reçu
comme argument:‘Le SIDA a l’argent’;‘le SIDA donne
l’argent, c’est une affaire d’argent’;‘le SIDA est la
bouffe des ONG’? Pour l’opinion publique, le soutien
de la Banque Mondiale ne peut se faire qu’à coup de
millions de dollars. Certains signes confortent cette
opinion. L’acquisition récente d’une quarantaine de
véhicules tout-terrain dont une partie fut exposée
pendant plus de quatre mois sur les parkings du siège du
CNLS et la distribution des ces véhicules rutilants aux
responsables du CNLS et aux GTP ont frappé l’opinion.
Au moment où ils n’étaient pas encore intégrés dans le
système du CNLS en 2002, des préfets ont observé
une augmentation vertigineuse des demandes de
création d'ONG ayant pour objectif de lutter
localement contre le SIDA. Ils se sont rendus compte
plus tard que la prolifération de ces demandes
ARTICLE ORIGINAL
correspondait à l’annonce qu’avait faite le CNLS pour
financer les micro projets des ONG luttant contre le
SIDA.Toutes ces associations n'ont malheureusement
pas pu satisfaire aux contraintes de la Banque
Mondiale.
populations et des décideurs ont mis en exergue un
certain nombre de problèmes souvent inattendus. Ces
difficultés et malentendus portent sur l’émetteur du
message, le message lui-même et sur ceux à qui il est
destiné.
Les difficultés que rencontrent les représentants et les
responsables du CNLS à tous les niveaux — dont
certaines ont été exposées plus haut — s’expliquent
en partie par ce fantasme selon lequel la structure a de
l’argent à ne savoir quoi en faire. Le niveau général de
corruption de l’administration camerounaise ne
s'accommode pas des mesures de contrôle et de suivi
de la Banque Mondiale en matière de gestion
financière. Lorsqu’elles ne parviennent pas à un
compromis, les différentes autorités administratives et
traditionnelles développent une animosité revancharde,
ouverte ou masquée, envers les personnels et les
partenaires du CNLS.
Les partenaires et les représentants du CNLS sont
souvent pris à partie par des élus de sensibilités
politiques différentes de celle du gouvernement en
place. Dans une région anglophone plus ou moins
hostile au régime en place, nous avons été accueillis par
l’expression murmurée en pidgin ‘Na man fo Ongola’
(les gens de Yaoundé). Identifiés comme des
francophones — bien que bilingues pour certains
d’entre nous — les membres de notre mission ont
parfois été assimilés à des ‘agents du régime’. Si certains
élus locaux adhèrent aux missions du CNLS par
engagement politique, d’autres transforment les
rencontres en revendication généralisée sur les besoins
en santé publique de leur localité et sur la politique de
santé au Cameroun. L’effort de communication du
CNLS consiste alors à insister sur l'urgence de la lutte
et sur la nécessité pour tous de s'y impliquer.
On ne dira jamais assez que les méthodes de la Banque
Mondiale s’accommodent peu souvent des pratiques et
habitudes locales. La Banque s’oppose au financement
des pauses-cafés et repas prévus dans certaines
manifestations et rencontres. Cette logique concerne
parfois les per diem dans la mesure où on se demande
s’il est nécessaire de payer les gens parce qu’on les aide.
Mais comment réunir des populations africaines et/ou
camerounaises pour un combat commun sans leur
donner à boire et à manger ? Un surplus de
convivialité contextuelle n’augmente-il pas l’efficacité
de la communication? Comment déplacer un chef
traditionnel sans prévoir une compensation matérielle
et morale? De nombreux meetings ont tourné court
du fait de ce manque de convivialité. En milieu rural,
le style de la palabre semble plus efficace que celui qui
consiste à rassembler des gens pour leur donner une
instruction scolastique fût-elle démonstrative. Il y a là
une dimension que le CNLS gagnerait à négocier avec
ses partenaires internationaux.
Les malentendus se réduiraient si le CNLS
communiquait davantage. En effet, les nombreux
partenaires du CNLS se plaignent de ne pas
suffisamment connaître les missions, les programmes et
les projets de la structure. Une meilleure qualité de
l'information pourrait dissoudre une bonne partie des
malentendus. Le ‘bouche à oreille’ (en cours) participe
de la rumeur et de la désinformation.
Communication et sensibilisation
Les campagnes nationales de plaidoyer auprès des
Par ailleurs, la sexualité et le discours y afférent restant
tabou, il est pratiquement impossible dans certaines
régions de mettre ensemble hommes, femmes et
enfants pour les sensibiliser. Certaines démonstrations
s’avèrent intolérables pour les responsables de ces
communautés. Il faut parfois séparer les uns des autres
en prenant le risque d’une communication peu efficace
du point de vue communautaire. Le côté inattendu et
nouveau du discours sur la sexualité provoque des
réactions aussi inattendus que le voilement de la face
des femmes qui ne veulent pas voir, l'attention
soutenue sur des détails superfétatoires au détriment
des objectifs pédagogiques à atteindre, des rires sous cape.
La sensibilisation à travers les médias est de plus en plus
importante. Les messages de prévention se multiplient
sur toutes sortes de support. Mais leur distribution reste
inégale.Toutes les régions ne sont pas couvertes en
ondes radiophoniques ou télévisuelles. Malgré la
multiplication des radios locales, toutes les
communautés ne reçoivent pas les informations en leur
langue.
En l’absence de lieux de loisirs pour les jeunes, ces
lacunes favorisent la prolifération des vidéoclubs qui
proposent essentiellement des films de violence et des
films pornographiques. Ces derniers promeuvent une
sexualité à risque paradoxalement valorisée.
153
ORIGINAL ARTICLE
Aspects réglementaires et juridiques
Selon les juristes qui se sont penchés sur la question
(Minkoa She, 2003), il n’existe pas de législation
spéciale sur le SIDA au Cameroun. Les problèmes liés
au SIDA sont habituellement résolus en référence à la
législation du droit commun sur les maladies
contagieuses.
Dès 1968 le Cameroun a pris des dispositions d’ordre
sanitaire en vue d’assurer la protection de la population
contre les maladies transmissibles. Ces mesures
impliquent l’obligation d’examen, de dépistage et de
contrôle. Le problème est de savoir si le VIH/SIDA
entre dans cette catégorie. Il s’agit d’abord d’une
opération fort coûteuse qui devrait logiquement
intégrer la prise en charge de toutes les personnes
testées positives.
La loi portant protection de la santé publique (1964)
fait obligation de déclarer les maladies contagieuses.
Quid du secret professionnel auquel sont tenus
médecins et chirurgiens? Or le SIDA ne fait pas encore
partie des maladies à déclaration obligatoire. Si la
dérogation est possible pour protéger la santé des
populations et combattre certaines maladies contagieuses en évitant leur propagation, il faut encore
distinguer les maladies à déclaration obligatoire des
maladies à déclaration facultative. La loi renvoie à un
décret d’application qui n’a jamais été pris à ce jour.
Elle précise ce pendant que, en attendant, les dispositions antérieures restent valables. Seulement, un arrêté
de 1954 propose deux listes dans lesquelles le SIDA ne
saurait figurer, compte tenu de la postériorité de son
apparition.
D’autre part, les dispositions concernant les vaccins
sont inopérantes puisque le vaccin contre le SIDA
n’existe pas. Bien plus, aucune disposition législative
ne traite de la prévention. Par contre, les dispositions
propres à la lutte contre la prostitution peuvent être
appliquées en matière de prévention. Depuis les années
70 une série de dispositions légales permet à la police
de procéder à des rafles dans les milieux de la
prostitution et de conduire les prostituées dans des
centres médicaux spécialisés aux fins de dépister celles
qui souffrent de IST/MST. Un centre anti-vénérien a
d'ailleurs été construit près d'un grand commissariat de
Yaoundé à cet effet. Les prostituées porteuses de
maladies sexuellement transmissibles sont
théoriquement amenées au parquet pour ‘propagation
de maladies contagieuses’. Mais s’agissant du
VIH/SIDA, le problème de la légalité des dépistages
non volontaires se pose de nouveau.
154
On pourrait aussi se référer au code du travail qui
traite de la nécessité pour les employeurs de prendre
des mesures d’hygiène et de sécurité du travail pour
protéger la santé des employés. En effet, le service
médico-social de l’entreprise est tenu de surveiller les
risques de contagion. De la sorte, le médecin du travail
est tenu de déclarer tous les cas de maladies
contagieuses. Mais comme nous l’avons déjà relevé, le
SIDA n’est pas une maladie contagieuse. Finalement,
les dispositions légales qui existent à ce jour ne sont pas
adaptées au VIH/SIDA.
Il arrive que des personnes séropositives connaissant
leur statut sérologique décident de propager la maladie
pour ‘réparer l’injustice dont elles sont victimes’.‘Je ne
vais pas mourir seul’ disent certains. Il y a quelques
années une jeune femme s’est prise à ce jeu macabre et
a donné cent noms de partenaires avant de mourir!
S’agissant de la répression de la contamination, le droit
se préoccupe de savoir si cette dernière est volontaire,
involontaire ou accidentelle. Comment en constituer la
preuve? La contamination volontaire renvoie à
‘l’empoisonnement’. Mais le SIDA est-il une substance
mortifère? Que non. De plus, l’empoisonnement n’est
pas une infraction autonome en droit camerounais. Ce
dernier reconnaît l’assassinat par empoisonnement
comme circonstance aggravante. (cf. art. 276/1 du code
pénal). Minkoa She (2003 : 6) relève la complexité
d'un tel rapprochement:‘On pourrait à la rigueur,
retenir la qualification de tentatives d’assassinat par
empoisonnement, ce qui n’est guère satisfaisant, car il
importe de pouvoir réprimer la transmission du virus
du SIDA comme infraction consommée, pour
préserver la possibilité de sanctionner la tentative
même de l’inoculation’. Si la contamination volontaire
est qualifiée de ‘activités dangereuses’ au regard de la
loi, elle tombe sous le coup de l’article 260 du code
pénal qui traite de la propagation des maladies
contagieuses en ces termes:‘... est puni d’un
emprisonnement de trois ans celui qui par sa
conduite, facilite la communication d’une maladie
contagieuse et dangereuse’. La pratique officielle tend à
retenir et à reconnaître la tentative d’assassinat. Ce que
confirme le professeur Joseph Mbede (1992), ministre
de la santé publique à l’époque, lorsqu’il déclarait dans
le quotidien national:‘Nous pouvons néanmoins être
amené à appliquer l’article 260(1) du code pénal pour
les sujets séropositifs a fortiori les sidéens qui, informés
de leur état continuent sciemment de disséminer la
maladie aux autres.’ (Cameroon tribune n°4277 du 02
décembre 1992, p.14).
Toutefois, pour que l’infraction suppose un acte
ARTICLE ORIGINAL
facilitant la contagion, il faut encore que l’individu en
soit conscient, qu’il ait eu connaissance de la maladie
au moment de l’acte et que sciemment, il continue à
avoir des rapports non protégés. Mais il s’agit d’une
infraction de résultat. En effet, il n’est pas moralement
indispensable que la volonté soit d’atteindre ce résultat.
Il suffit qu’elle y tende par la connaissance de la nature
du danger. Or la transmission du SIDA n’est pas simple
contagion de la maladie. La répression s’avère donc
insuffisante pour une maladie qui donne la mort.
Enfin, comment établir la preuve de l’acte volontaire
de contamination si les partenaires sont nombreux et
infectés? La preuve de la connaissance de la séropositivité au moment de l’acte est nécessaire. Comment
débusquer le délinquant si le médecin évoque le secret
professionnel auquel il est tenu ? La complexité des
aspects juridiques et judiciaires du VIH/SIDA est si
dense qu’à ce jour aucun procès n’a été intenté en la
matière. Il faut dire que l’urgence est ailleurs. Quand
bien même le Cameroun disposerait d’une loi
satisfaisante en la matière il faudrait encore qu’elle soit
appliquée.
CONCLUSION
A travers l’expérience camerounaise, nous avons voulu
montrer comment un pays africain entreprend de lutter
contre le SIDA et tente de résoudre les problèmes que
génère une telle entreprise. Moyennant quoi, nous
avons fait apparaître les problèmes spécifiques d’une
société dont la complexité et la diversité sont des
caractéristiques majeures. Les représentations sociales de
la maladie — de cette nouvelle maladie, de la vie et de
la mort, les croyances, les cultures locales, les
comportements sexuels, les différents statuts de la
femme, le rapport du citoyen à l’État républicain et
aux autorités traditionnelles, les religions sont autant de
‘partenaires’ avec lesquels tous les programmes doivent
entrer en négociation s’ils veulent être assurés d’un
minimum d’efficience. Mais l’efficacité de la lutte passe
aussi par la segmentation des cibles en fonction des
difficultés rencontrées.
Comme nous l’avons signalé, le Cameroun s’est doté
d’une structure et d’une organisation sérieuses et
cohérentes pour étendre la prévention et la lutte contre
le VIH/SIDA sur toute l’étendue du territoire. Si
l’action du CNLS est importante, elle rencontre de
nombreuses difficultés liées d’une part à une
communication apparemment peu adaptée et
insuffisante, et d’autre part, à la résistance des structures
traditionnelles qui se voient menacées dans leurs
fondements par un discours égalisateur donc
irrévérencieux.Toutes choses qui nous font penser que
la lutte contre les VIH/SIDA au Cameroun prend
l’escalier alors que le VIH/SIDA a résolument pris
l’ascenseur. D’où notre titre.
Pourtant, l’heure n’est pas au découragement. Nous
n’aurons pas la prétention irraisonnée d’apporter des
solutions radieuses à toutes les limites que nous venons
d’évoquer. Nous voulons contribuer à une réflexion et
à une praxis qui pourraient aider les décideurs à
redoubler de courage politique pour combattre une
pandémie qui prend aujourd’hui des allures de
catastrophe protéiforme.
Certes, la prévention sollicite le changement de
comportement individuel et communautaire. Ce
dernier gagnera à être renforcé par la modification des
structures de la lutte en cours. Comment pourrait-on
continuer à lutter contre le VIH/SIDA au Cameroun
en ignorant la perpétuelle asymétrie des rapports de
genre et en contournant ou en ménageant les
structures sociales traditionnelles toujours si influentes
sur l'orientation des comportements individuels et
communautaires? Les participants aux derniers ateliers
provinciaux de plaidoyer et de sensibilisation
gagneraient à faire des propositions courageuses non
politiciennes qui puisent leur efficacité dans un souci
équitable de santé publique. Le cas que nous avons
analysé peut à maints égards rejoindre les observations
valables ou faites dans d'autres pays africains. Mais il
rend compte de la manière particulière dont le
Cameroun s’attaque au défi que constitue la pandémie
du VIH/SIDA compte tenu de son histoire et de ses
ressources actuelles. Quand bien même le combat,
l’adversaire et les armes seraient les mêmes pour tous,
chaque gladiateur a son style, ses appréhensions, ses
rythmes, ses tactiques, ses limites et ses fantasmes. Ce
qui fait de son combat une épreuve toujours
particulière. Ce dont l’ensemble des partenaires et des
sponsors devraient tenir compte s’ils veulent
véritablement lui venir en aide.
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SAHARA
J available online at
www.sahara.org.za
156
ARTICLE ORIGINAL
Stigma, discrimination and the implications for people living with
HIV/AIDS in South Africa
D Skinner, S Mfecane
ABSTRACT
Stigma and discrimination play significant roles in the development and maintenance of the HIV epidemic. It is
well documented that people living with HIV and AIDS experience stigma and discrimination on an ongoing
basis.This impact goes beyond individuals infected with HIV to reach broadly into society, both disrupting the
functioning of communities and complicating prevention and treatment of HIV.This paper reviews the available
scientific literature on HIV/AIDS and stigma in South Africa, as well as press reports on the same subject over a
period of 3 years. Analysis of this material indicates that stigma drives HIV out of the public sight, so reducing
the pressure for behaviour change. Stigma also introduces a desire not to know one's own status, thus delaying
testing and accessing treatment. At an individual level stigma undermines the person's identity and capacity to
cope with the disease. Fear of discrimination limits the possibility of disclosure even to potential important
sources of support such as family and friends. Finally, stigma impacts on behaviour change as it limits the
possibility of using certain safer sexual practices. Behaviour such as wanting to use condoms could be seen as a
marker of HIV, leading to rejection and stigma. All interventions need to address stigma as part of their focus.
However, the difficulty of the task should not be underestimated, as has been shown by the persistence of
discrimination based on factors such as race, gender and sexual orientation.
Keywords: HIV, AIDS, stigma, Africa, discrimination.
RÉSUMÉ
La stigmatisation et la discrimination jouent des rôles importants dans le développement et le maintien de
l'épidémie de VIH. Il existe beaucoup de travaux écrits sur la stigmatisation et la discrimination que subissent, de
manière continue, les personnes vivant avec le VIH/SIDA. Cet impact va au-delà des individus contaminés du
VIH et atteint la société en gros. Cet impact, à la fois bouleverse le fonctionnement de communautés et
complique la prévention et le traitement du VIH. La présente communication a pour but de passer en revue la
littérature scientifique existante sur le VIH/SIDA et la stigmatisation en Afrique du Sud ainsi que les rapports de
presse sur le même sujet au cours d’une période de 3 ans. Une analyse de ce matériel indique que la
stigmatisation cache le VIH du public, de sorte, la pression de changement du comportement est réduite. La
stigmatisation suscite un désir de ne pas vouloir savoir son statut sérologique. De ce fait, le dépistage et l’accès au
traitement sont retardés. Au niveau individuel, la stigmatisation sape l’identité de la personne et sa capacité de
faire face à la maladie. La peur d’être discriminé réduit la possibilité de dévoiler son état sérologique même
auprès des sources de soin importantes comme la famille et des amis. Enfin, la stigmatisation a un impact sur le
changement comportemental étant donné qu’elle réduit la possibilité d’avoir des rapports sexuels sans risque.
Vouloir utiliser un préservatif peut être considéré comme signe de VIH suivi par le rejet et la stigmatisation.
Toutes les interventions doivent mettre l’accent sur la stigmatisation.Toutefois, la difficulté de cette tache ne doit
pas être sous-estimée. Cette difficulté apparaît dans la persistance de discrimination basée sur des facteurs comme
la race, le sexe et l’orientation sexuelle.
Mots clés:VIH, SIDA, stigmatisation, Afrique, discrimination.
Donald Skinner is a chief specialist researcher in the Social Aspects of HIV/AIDS and Health research programme at the HSRC. He holds a PhD in
psychology and an MA in clinical psychology from the University of Cape Town. He has training and experience in both quantitative and qualitative
approaches, with a particular capacity in qualitative methods. Donald has acquired a good understanding of the operations of community-based work and
the operations of NGOs and CBOs. He has written multiple publications and one book in the areas of political violence, AIDS and research methodology.
Sakhumzi Mfecane is a chief researcher on the Social Aspects of HIV/AIDS and Health research programme of the HSRC. He holds a master’s degree
in medical anthropology from the University of the Western Cape. Sakhumzi has extensive training in social science research and in particular qualitative
research, and has conducted research mainly in the field of reproductive health with a specific focus on the role of men in reproductive health issues.
Correspondence to: Dr Donald Skinner, Human Sciences Research Council, Private Bag X9182, Cape Town 8000, South Africa.Tel (021) 467-4442, fax (021) 4674424, e-mail: [email protected]
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Stigma, discrimination and the implications for people living with HIV/AIDS in SA
Introduction
‘If we are to address stigma, we must first understand
it.We should focus our attention on understanding
what causes us as a society to react in this way to
people living with HIV/AIDS — people who are
suffering enough, either physically or mentally to be
challenged yet again by the judgment of others, by the
very people who yesterday were their neighbours and
who should be reaching out to them today. Only
when we understand the cause can we hope to help
our fellow men and women react in a more
compassionate and human way.’ — The Prime Minister
of Tanzania, Hon. F T Sumaye in the Regional
Consultation Report, 2001).
The potential impact of stigma and discrimination has
been of ongoing concern to those involved in
addressing the HIV/AIDS epidemic. Jonathan Mann
spoke of a third epidemic of discrimination that
would follow the HIV and then AIDS epidemics. He
asserted that this third phase would be as central to
the global AIDS challenge as the disease itself (Mann,
1987, quoted in Parker, Aggleton, Attawell, Pulerwits
and Brown, 2001). Sabatier (1988) predicted
discrimination at individual, community and national
levels, which would have major implications for the
epidemic. Divides would be created between those
who are vulnerable to infection and those who are
more distant.That the HIV epidemic has followed in
many respects the trajectory of those who are most
victimised by discrimination anyway has heightened
that divide (Crewe, 1992). Stigma is common when
societies face problems that seem inexplicable or
outside of their control, such as the HIV epidemic
(Panos Institute, 1990).The direct experience of
stigma is terrible when you consider how it impacts
on those who feel the discrimination. However this
paper will argue that the implications of stigma go
even deeper to impact on multiple aspects of the lives
of people living with HIV/AIDS and more broadly
on members of society, creating disruptions in social
functioning, increasing people's vulnerability to
infection and reducing the overall caring capacity of
communities. Stigma has had particular implications
for South Africa (SA) given our history of racism and
other stigmatising beliefs.
Goffman (1963) defined stigma as a deeply
discrediting attribute that reduces a person to
someone who is in some way tainted and can
therefore be denigrated. It is a pervasive problem that
158
affects health globally, threatening an individual's
psychological and physical well-being (Cabe &
Sorkin, 2002). Enacted stigma refers to the real
experience of discrimination (Brown, Macintyre &
Trujillo, 2003). Discrimination constitutes acts or
omissions in which the content of the stigma is
applied, either at an individual or social/community
level. Four components have been identified as being
part of the stigma concept.These include
distinguishing and labelling differences, associating
human differences with negative attributes, separating
‘us’ from ‘them’, and status loss. Ultimately stigma is
entirely dependent on social, economic and political
power, as power is required to be able to introduce
stigmatisation. Stigma removes power from the
stigmatised person, enhancing differences and reducing
the stigmatised group or person's social status and self
worth (Link & Phelan, 2002).
Stigma and discrimination have a shameful history
internationally. In South Africa they took a particularly
horrendous form in the apartheid system. A major role
that stigma plays in society is to create ‘difference’ and
social hierarchy, and then in turn legitimising and
perpetuating this social inequality (Parker, Aggleton,
Attawell, et al., 2001). Discrimination arises out of any
point of difference that can be consistently labelled:
for example physical deformity or disfigurement, racial
differences or any other factors that set up the person
as different to the perceived norm. In this case the
norm is generally defined in terms of who is powerful
in the community (Goffman, 1963). Major focuses for
discrimination have been on race, gender, sexual
orientation, handicap, religion and age, amongst
others.The attachment of discrimination to illness has
a long history, with it impacting on people with
mental illness and physical disorders such as cancer,
TB, STDs and leprosy (Sontag, 1988).The nature of
stigma and discrimination is complex, varying across
time, person and context, making analysis and
especially intervention very difficult.
Stigma and discrimination are cruel social processes
that offer some feeling of protection to the powerful,
while increasing the load on the individual or group
who is victimised in the process. Stigma can be seen as
a tool used by more powerful groups to protect
themselves as people. It is in turn constructed as only
impacting on directed recipients who are seen to be at
blame anyway, so deserve this discrimination (Douglas,
1995).The argument can be challenged immediately
ARTICLE ORIGINAL
at a human rights level. However, this paper argues
that stigma has a far more insidious influence, going
well beyond the individual and potentially impacting
on all sectors of society.
Information sources
The material for this paper was drawn principally
from two literature searches. A formal search was made
of Medline, Psychinfo and Anthropological Abstracts,
using the keywords HIV/AIDS, stigma, discrimination
and Africa. An additional manual review was conducted of newspaper clippings for the period 2002
and 2003, to extract important articles on experiences
of stigma as noted in the mass media. Unpublished
reports and reports that do not appear on the above
databases were identified and incorporated where
possible.The list of references covers only those papers
cited in the text and not the full collection of papers
read and reviewed.
AIDS and stigma
HIV-related stigma has its own unique qualities, and is
‘heightened as it is layered upon other stigmas
associated with race, gender, homosexuality, drug use,
promiscuity etc.’ (Lee, Kochman & Sikkema, 2002, p.
310) Discrimination is perpetrated against communities which are perceived to be more affected by
HIV, be these physical criteria, such as skin colour
(Erwin & Peters, 1999; Parker, Aggleton, Attawell et al.,
2002); gender (Gollub, 1999; Parker, Aggleton,
Attawell, et al., 2002); sexual orientation (Crewe, 1991;
Walpin, 1997); type of work, such as prostitution
(Wojcicki & Malala, 2001); or geography, and even an
entire continent, such as Africa (Sabatier 1988; van der
Vliet, 1996). So stigma not only affects the individual
who is carrying the virus, but also increases the
exclusion of already stigmatised groups associated with
HIV, such as gay men and black people (Aggleton,
Hart & Davies, 1989; Sabatier, 1988). In the early
period of the AIDS epidemic in the USA the apparent
connection of the epidemic solely to the gay community lead to fears of the isolation of this community being extended and the hard-won battles
against discrimination turned around (Shilts, 1987).
Attempts were made to dismiss HIV as a gay-only
disease, and thus not requiring a large-scale intervention (Parker, Aggleton, Attawell, et al., 2002; Shilts,
1987).
By extension, in the case of AIDS the threat of
multiple stigmatisations exists. A person could fall into
more than one category of stigma and so feel multiple
burdens (Gilmore & Somerville, 1994). Examples
would be of a black gay HIV-positive man, or a
physically handicapped HIV-positive woman. Each of
these would feel stigma in all areas of difference from
the norm, with each point of stigma isolating them
from different sectors of their community. So work
against HIV-based stigmatisation should interact with
other stigmas that people experience (Hospers &
Blom, 1998).
Anger and fear contribute to the development of
discrimination both in those who are HIV-positive or
HIV-negative (Kok, Kolker, de Vroome & Dijker,
1998). Morality had also become a key factor in the
development of stigma in AIDS (Das, 2002; Golden,
1994). A judgemental discourse has distinguished
sharply between those ‘innocents’ who contract HIV
via organ or blood transfusions, the children of
women with HIV, and women whose partners are
unfaithful; and those who are considered guilty and
almost ‘deserve it’ (Schellenberg, Keil & Bem, 1995).
Religious groups may intentionally or inadvertently
contribute to discrimination by making explicit or
implicit judgements against those who are infected
with HIV (Paterson, 1996). Attempts to label the
epidemic as God’s punishment for sinners, especially
gays, prostitutes and drug users, have often been
documented (Crawrod, Allison, Robinson, Hughes &
Samaryk, 1992; Johnson, 1995).
To be able to blame others is psychologically
reassuring as it divides the society into ‘us’ and ‘them’.
‘Others’ are guilty as a result of their behaviour.They
are guilty not only of getting themselves ill, but also of
infecting ‘innocents’.This increases the stigma load
borne by those groups seen as responsible (Crewe,
1992).The attachment of gender discrimination to
HIV stigma has led to women being blamed for
spreading the epidemic.Thus women are contradictorily expected to provide sexual services to men
generally, be chaste and pure, and take on the
responsibility of preventing pregnancy and disease
(Crewe, 1992; Leclerc-Madlala, 2002). A further
difficulty is not knowing how to relate to someone
with HIV (Kok, Kolker, de Vroome & Dijker, 1998).
There are many examples at a national level of
discrimination introduced by socially conservative
governments, including policies of restriction of
admissions, deportation of foreigners, mandatory
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ORIGINAL ARTICLE
testing for those seeking work permits or tourist visas
(Parker, Aggleton, Attawell, et al., 2002), and Cuba
with its policy of restricting those with HIV to
sanatoria (Hansen & Groce, 2001; Scheper-Hughes,
1993).
Discrimination in South Africa
As with most other countries worldwide, South Africa
has reported a large number of incidents of stigma.
These include the murder of Gugu Dlamini in
December 1998 for openly stating that she was HIVpositive (Baleta, 1999; Kortjaas & Msomo 1998;
Nicodemus 1999; Rusnak 1998); the murder of Mpho
Mtloung together with her mother by her husband,
who then also committed suicide (TAC, 2000); not
allowing HIV-positive children into schools (Sapa,
2002; Streak, 2001a); exclusions or attempted
exclusions from the work place (Ngqalaza, 2000a;Viol,
2000), within the military services (Ngqalaza, 2000b),
and in home communities (Gosling, 2000; Smetheram,
2001); and rejection from families (Altenroxel, 2000).
A recent case, in 2004, is that of Lorna Mlofane who
was raped and later murdered after her three rapists
had learned that she was HIV positive (Mbamato &
Huisman, 2004).These and many other scenarios are
well known and have been covered in the mass media.
Many published papers also document stigma as an
aspect of their findings, for example among university
students (Strebel & Perkel, 1991), school pupils
(Mathews, Kuhn, Metcalf, Joubert & Cameron, 1990),
youth (Leclerc-Madlala, 1997; Skinner 2001), in the
workplace (Miller & Mastrantonis, 1992) and in
couples and families (Strebel, 1993).
The connection of stigma around HIV to historical
racism and gender has developed a particular form of
discrimination. Blame is often assigned to black people
or to women. Men blame women for infecting them
and spreading the virus (Leclerc-Madlala, 1997, 2002;
Shefer, 1999). In couples, it can lead to violence
against the woman or her exclusion from the household (Strebel, 1993). Stigma around disease often
attaches itself to existing stigmatising frameworks
(Sontag, 1988; van der Vliet, 1996), for example in
South Africa AIDS has been associated mainly with
black people and women.
Many research studies have found a significant number
of respondents who want people living with HIV
(PLWH) to be clearly identifiable, to be separated
from the rest of the population, or excluded from
160
contact in schools, work and social institutions
(Mathews, Kuhn, Metcalf, et al., 1990; Strebel &
Perkel, 1991). Conflicting views around people living
with HIV are sometimes found. For example in a
workplace study it was found that there was enormous
compassion for colleagues who were HIV-positive,
together with a wish to know who did have HIV,
implying a need to keep separate from those who
were infected (Miller & Mastrantonis, 1992). It appears
that knowing the person who is HIV-positive
encourages greater feelings of compassion, but fear
remains both of the disease and the associated stigma.
Reports of stigma are pervasive, extending even to the
health professions.The AIDS Law Project reported
that the Health Professions Council of SA did not act
against 28 doctors who breached patient confidentiality.The patients were mostly domestic workers
whose employers had been told of their diagnosis and
many of whom were subsequently dismissed
(Altenroxel, 2001). Some health professionals have
refused to treat people with AIDS, on the grounds of
possible risk of infection (Krautkramer, 2000).
Children orphaned or rendered vulnerable by AIDS
are likely to experience increasing stigmatisation.
Recently 90 children affected by HIV/AIDS spoke of
their experiences of discrimination.They faced verbal
and physical discrimination at schools and in the
community (Streak, 2001b). Orphans have also been
identified as a major security threat for the future
(Schönteich, 2002).While this may be a rational call
for resources and intervention, it does also lay the basis
for them to be identified as a special group for
discrimination. Stigma would clearly worsen the
situation of orphaned and vulnerable children,
excluding them even further from resources and
support.
Implications of discrimination
The extensive nature of the stigma against people with
AIDS is well established.This has significant impacts
on those immediately affected, but also has a number
of implications for the epidemic and broader society.
These insidious impacts must be acknowledged, if the
work to eradicate stigma is to be taken seriously.
Making the epidemic invisible
A prime impact of discrimination is that it pushes the
epidemic underground, forcing people who have
contracted HIV, and anything else associated with the
ARTICLE ORIGINAL
disease, into hiding. An acknowledgement of HIV
becomes difficult if not impossible. Likewise any
association with the disease or people with HIV can
be a basis for that person being excluded from their
community, so is denied.The disease itself then
remains hidden so its perceived threat is reduced. It
also makes the disease someone else’s problem.The
stigmatising beliefs then facilitate the use by
individuals and communities of denial and distancing
as defensive processes against the epidemic, again
reducing the need to adapt (Skinner, 2001). Distancing
or creating barriers between those infected and the
rest of the population consumes considerable energy
that could be more profitably used, and robs the
intervention of some of the best advocates for
behaviour change, namely those who are directly
affected.
Thus the epidemic disappears, or at least has few
public faces, leaving the space open for scapegoating
of any person or group associated with the disease.
These scapegoating processes can be dangerous, as
they pin the blame on a small section of the
population, leaving the rest with the mistaken belief
that they are safe (Douglas, 1995; van der Vliet, 1996).
A greater problem arises when those with the power
to construct interventions use discrimination as a basis
for not implementing such programmes. For
communities as a whole, or for those responsible for
structuring interventions, blaming infected people can
be a substitute for tackling the problem itself. So even
when interventions are developed from this basis, they
are constructed in such a way as to discriminate
against those in affected groups and to reinforce a false
sense of safety in the majority of the population.
Limiting access to treatment
Discrimination has significant impacts on diagnosis
and treatment. For the individual it can delay diagnosis
and therefore also delay entry into treatment and
adoption of a healthy lifestyle.There is no motivation
to be tested, as the person sees no benefit when the
diagnosis of HV is seen as equivalent to death, and
they are likely to experience discrimination (Abdool
Karim,Tarantola, Sy & Moodie, 1992). In certain
contexts research respondents have been shown to be
more fearful of the stigma than of the disease itself, so
even with treatment, stigma may be a block to access
(Lie & Biswalo, 1994).This has already been shown to
be a problem in the case of PMTCT, where women
have expressed fear of being tested (Grange, Story &
Zumla, 2001). In the same way the use of formula
feeding rather than breastfeeding can become a
problem. Many women feel restricted from being able
to breastfeed for fear of family observation and
questions.
Even for those who are aware of their status,
discrimination can limit access to care and treatment
(Grange, Story & Zumla, 2001; Rehm & Franck,
2000). Many are not able to acknowledge even to
their families that they are infected, so are denied that
level of care (Wiener, Battles, Heilman, Sigelman &
Pizzo, 1996;Yoshika & Schustack, 2001). If some level
of general acceptance and support can be obtained for
the person who is HIV-positive, this can facilitate
better results (Aranda-Naranjo & Davis, 2000).The
benefits of testing need to be openly acknowledged.
Even minor modifications of behaviour can improve
life (Department of Health, 2001; Feinberg & Maenza,
2000), and the introduction of ARVs can considerably
extend a person's life, even in resource-poor settings
(Cheever, 2000).
Impact on identity and coping of the person with HIV
Stigma impacts on the PLWH themselves, as it is
internalised into their self-perception and sense of
identity, impacting on the person’s perceptions and
how they interact in the world. Research has found
that people with HIV feel isolated, guilty, dirty and
full of shame, which is then often incorporated into
identity (Kalichman, 2004). General participation in
the activities of life is therefore restricted by stigmatisation (Sowell, Seals, Moneyham, Demi, Cohen &
Brake, 1997). Isaacs (1993) found that among gay men
the rejection experienced by the person who was
HIV-positive fed into their sense of self, causing them
to feel compromised and to blame for their situation.
Similar results were found with a sample of HIVpositive women (Strebel, 1993).When this stigma is
internalised it might influence the ways affected
individuals look at themselves and how they interact
with others, including health care providers (Lee,
Kochman & Sikkema, 2002).This again impacts on a
person with AIDS coming to terms with their illness.
Examples of exclusion in South Africa have been
described in the incidents of stigma outlined in a
earlier part of this paper.
Disclosure, support and protection of those close to the
infected person
In all relationships discrimination counteracts trust.
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ORIGINAL ARTICLE
This often leaves those infected alone and distanced
from the rest of their communities, colleagues and
even family.The fear of discrimination has been
shown to create problems for disclosure, since
disclosure has the common reaction of rejection,
leaving the person living with HIV alone (Maman,
Mbwambo, Hogan, Kilonza, Sweat & Weiss, 2001).
This also increases the risk of infection for the sexual
partner of the HIV-positive person. Studies focusing
on disclosure have also begun to explore the processes
of dealing with negative reactions and the
empowerment of the person who is disclosing their
status (Maman, Mbwambo, Hogan, et al., 2001). Social
contacts and family members may also resist being
informed, as they too may become vulnerable to
exclusion, by being associated with a person with
HIV.This in turn can lead to breakdown in the social
commitments to care as these is a fear of asking for
care and a fear of offering care, both regarding the fear
of disease and of association.
Impact on behaviour change
Discrimination and stigma have implications for the
implementation of prevention efforts and have
reduced the possible impact of these interventions
(Grundlingh, 1999). Certain behaviours such as the
use of condoms have become signifiers of the
epidemic, leading to the possible rejection of those
who initiate their use (Link & Phelan, 2002).Thus
many youth in South Africa are scared to use
condoms due to the felt implications (LeclercMadlala, 1997). Even the option of being faithful can
be stigmatised. In a community where multiple
partners are seen as an indicator of success or
manhood, a person who has one partner may be
marginalised.
The intersection of these different points of
discrimination can become a vicious circle of stigma
with sex workers, gay men, the poor, black women
etc. being seen as responsible for HIV/AIDS. However
these are also the groups most vulnerable to infection,
so they are more likely to contract the disease and
thus increase the stigma again (Parker, Aggleton,
Attawell, et al., 2002). Stigmatisation of ‘at risk groups’
or other stigmatisation based on race, gender, class,
occupation or sexual preference also puts people at
greater risk of infection (Zierler & Krieger, 1997).
There is pressure to deny being part of these groups in
order to reduce the felt stigma, including refusing to
user safer sexual practices that act as markers for HIV
162
(Leclerc-Madlala, 1997). People who can define
themselves outside of these groups are also able to
reject the need for safer sexual practices (Crewe, 1992;
Ross & Levine, 2002).
In South Africa the attachment of AIDS to the poor,
especially poor black women, has created additional
risk-associated beliefs.Thus a sample of students at the
University of Cape Town believed that their educated
status protected them and that it was others who were
at risk (Ross & Levine, 2002). In research done in
Natal, youth stated that they did not want to know
whether they were infected.This was felt so strongly
that medical personnel were seen as the worst culprits
in the HIV epidemic, as they gave out the diagnoses.
At the same time, many infected teenagers were
stating that since they would be facing rejection, they
would try to spread the infection as far as possible so
that they would not die alone (Leclerc-Madlala, 1997).
Stigma and associated beliefs can also impact on how
people receive educational inputs. At the level of
providing education and getting people to listen, there
are many taboos about sex from traditional culture,
religion, morality, as well as the hidden nature and
sensitive role sex plays in interpersonal relationships.
The addition of information on a stigmatised disease
like AIDS makes intervention all the more
complicated (Crewe, 1992). It can also paralyse
educational efforts. Moreover, while AIDS remains a
stigmatised disease it is more difficult for the
government to take up the issue.This is particularly so
when battles for power are being fought both on a
national basis and within the party (Taitz, 2000).
Conclusion
Stigma impacts beyond the individual infected with
HIV, to affect all those associated with the disease. It
can also impact on society more generally, by
extending the epidemic and undermining whatever
behaviour and treatment interventions are already in
place.Thus interventions need to be introduced to
reduce stigma and encourage acceptance.There are
different political and social forces that come to bear
when considering interventions against stigma, and
there needs to be an openness by leadership figures to
such issues.Working to reduce or end stigma is also
not a short-term undertaking. As has been shown in
attempts to end racism, stigma can be highly resistant
to change (Foster, 1991).The popular notion that
provision of information is sufficient to change stigma
ARTICLE ORIGINAL
is clearly insufficient (Deacon, Prosalendis & Stephney,
2004).The link of information to beliefs and
behaviour has been shown to be insufficient in
changing sexual behaviour in relation to HIV, and has
also proved insufficient in addressing racism and
sexism.
Stigma towards people with AIDS is related to the
incidence of all other kinds of stigma. So campaigns
need to address or make space for changes of attitudes
and beliefs about stigma based on race, gender, sexual
orientation, physical illness or disability and class,
amongst others.This was supported by a call from
Kofi Annan, UN Secretary General, at the World
Conference Against Racism, where he made a
combined call to end racism and discrimination
against people living with AIDS: racism and HIV
stigma support and uphold each other so were in
reality part of the same campaign with racism
boosting the AIDS epidemic (Trengrove-Jones, 2001).
There is a clear need to establish a research agenda for
stigma related to HIV in South Africa. An initial
priority is the development of a greater understanding
of the nature and practice of stigma against HIVpositive people in South Africa. Stigma is a social
phenomenon so needs to be understood at both
individual and social levels.This work can lay the basis
for directed campaigns and interventions against the
practice of discrimination.This is a real and centrally
important challenge for harnessing the HIV epidemic
that needs to be taken seriously.
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SAHARA
J available online at
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Managing AIDS stigma
W L Holzemer, L R Uys
ABSTRACT
According to anecdotal reports, AIDS stigma and discrimination continue to influence people living with and
affected by HIV disease as well as their health care providers, particularly in southern Africa where the burden of
AIDS is so significant. Stigma is perceived as a major limiting factor in primary and secondary HIV/AIDS
prevention and care. It reportedly interferes with voluntary testing and counselling, and with accessing care and
treatments, thereby increasing suffering and shortening lives. Many health care workers in southern Africa have
come to the conclusion that unless stigma is conquered, the illness will not be defeated.While there is substantial
anecdotal evidence of the impact of stigma on AIDS care, very little rigorous research has been conducted.This
article explores three questions: What is AIDS stigma? What is the impact of AIDS stigma? How can health
care providers help to manage AIDS stigma?
Keywords: HIV/AIDS stigma, management, measurement.
RÉSUMÉ
D’après des rapports anecdotiques, la stigmatisation et la discrimination liées au SIDA continuent à influencer les
personnes vivant avec la maladie du VIH, ceux qui en sont affectés ainsi que leurs fournisseurs de soins
particulièrement en Afrique Australe où le fardeau du SIDA est très prononcé. La stigmatisation est perçue
comme un facteur majeur qui restreint la prévention et les soins primaires et secondaires du VIH/SIDA. Il est dit
que la stigmatisation entrave la Consultation et le Dépistage Volontaires (VCT) et l’accès au soin et au
traitement. Pour cette raison, la stigmatisation augmente la souffrance et raccourcit la vie. Beaucoup de personnel
de soin, en Afrique Australe, ont tiré la conclusion qu’à moins que la stigmatisation soit conquise, la maladie ne
sera jamais vaincue. Pendant qu’il y a une évidence anecdotique importante de l’impact de la stigmatisation sur
le soin du SIDA, très peu de recherche rigoureuse a été faite. Cette présente communication étudie trois
questions: Qu’est-ce que la stigmatisation? Quel est l’impact de la stigmatisation liée au SIDA? Comment est-ce
que les fournisseurs de soin peuvent aider dans la gestion de la stigmatisation associée au SIDA?
Mots clés:VIH/SIDA, soigner, stigmatisation.
William L Holzemer (RN, PhD, FAAN) is Professor of Nursing, University of California, San Francisco. His work focuses upon care for people living
with HIV/AIDS in the areas of medication adherence, symptom management, stigma, and quality of life. Together with Leana Uys, he is co-directing a
5-year project Perceived AIDS Stigma: A Multinational African Study, NIH R01 TW006395, in Lesotho, Malawi,Tanzania, South Africa, and Swaziland
exploring and measuring the contribution of stigma to quality of life for people living with HIV/AIDS and to quality of work life for nurses.
Leana R Uys (RN, RM, D Soc Sc) is Interim Deputy Vice-Chancellor and Head of the College of Health Sciences at the University of KwaZulu-Natal.
Her research in the past has focused on home-based HIV/AIDS care, and she is co-author of the book Home-based HIV/AIDS Care, published in 2003 by
Oxford University Press.
Correspondence to: William Holzemer, School of Nursing, University of California San Francisco, 2 Koret Way, San Francisco, CA, 94143-0608 USA. E-mail:
[email protected].
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There is an extensive literature on the medical
management of HIV/AIDS which often makes the
assumption that people living with HIV infection
want to be tested and, if found to be positive, want to
engage with care. In the United States (USA),
however, it is estimated that as many as one-third of
the HIV-positive population do not know their HIV
status (Kaiser Family Foundation, 2004). Even in
countries where studies have documented high rates
of HIV infection, many individuals are reluctant to get
tested and often slow to access care (Newman, Grusky,
Roberts & Rivkin, 2002).The stigma of HIV/AIDS is
one factor affecting people's decisions to get HIV
tested and seek care.
AIDS stigma and discrimination have a considerable
influence on people living with and affected by HIV,
as well as on their health care providers, particularly in
southern Africa where the burden of AIDS is so
significant (African Development Forum, 2000).
Stigma has emerged as a major limiting factor in
primary and secondary HIV/AIDS prevention and
care (Weiss & Ramakrishna, 2001). It interferes with
voluntary testing and counselling, and access to care
and treatment, increasing suffering and shortening life
(Newman et al., 2002). Many health care workers in
southern Africa have come to the conclusion that
unless stigma is conquered, the illness will not be
defeated (Uys, 2000).
This paper reviews the literature on the definitions of
stigma, the impact of stigma on the lives of people
living with and affected by HIV/AIDS, and proposes
care strategies to help health care workers to support
clients living with HIV in stigmatising environments.
The article explores three questions:What is HIV/
AIDS stigma? What is the impact of HIV/AIDS
stigma? How can health care workers address stigma in
ways that help clients manage their HIV in a
stigmatising environment?
What is AIDS stigma?
‘Stigma’ is a Greek term denoting a mark that, in
ancient times, was burned or cut into the flesh of an
unsavoury character — a traitor, criminal, or slave
(Harvey, 2001). Goffman (1963, p. 3) defined it as ‘an
attribute that is deeply discrediting within a particular
social interaction’, as a ‘spoiled social identity’ and ‘a
deviation from the attributes considered normal and
acceptable by society’ (Harvey, 2001, p. 175).
According to Alonzo and Reynolds (1995, p. 304),
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stigma is ‘a construction of deviation from some ideal
or expectation’. Stigmatised groups in the US include
women; minorities, such as people of colour, homosexuals, and substance abusers, and people who are
physically and/or mentally disabled (Corrigan et al.,
2003; Harvey, 2001).Today, Goffman’s concept of
stigma is the one most widely accept (Harvey, 2001).
Herek et al. (1998, p. 36) used the term ‘AIDS-related
stigma’ to mean ‘prejudice, discounting, discrediting,
and discrimination that are directed at people perceived as having HIV or AIDS, and at individuals,
groups, and communities with which they are
associated’.Those who experience stigma view it
differently than those who stigmatise (Herek,
Capitanio & Widaman, 2002). In health care, stigma is
often described in the literature in relation to chronic
illness and visible physical disability. One description
of stigma in this context is ‘a factor influencing the
response of others to the chronically ill’ (Jillings &
Alexus, 1991, p. 62). People with HIV/AIDS may not
have any visible signs of the disease, yet they are more
likely to be stigmatised because others may view them
‘as contributors to their own problems and unworthy
of the care directed to more legitimate victims of
illness’ (Jillings & Alexus, 1991, p. 62). Alonzo and
Reynolds (1995, p. 304) defined stigma as a ‘powerful
and discrediting social label that radically changes the
way individuals view themselves and are viewed as
persons’. Insideout Research (2003, p. 5) describes a
large collaborative study on stigma in South Africa and
reports that stigma ‘can be felt (internal stigma),
leading to an unwillingness to seek help and access
resources, or enacted (external stigma), leading to
discrimination on the basis of HIV status or
association with someone who is living with
HIV/AIDS’.
A conceptual model proposed by Weiss et al. (1992)
recognises an insider’s perspective (emic) and an
outsider’s perspective (etic) of the consequences of any
illness studied.They developed an emic interview to
elicit explanatory models of patients in their own
terms, rooted in local cultural concepts and reflecting
the way people think about their world, themselves,
their health and their health problems. Originally
applied to leprosy, this conceptual view of illness
claims to study the relationship between culturally
defined experiences (the emic perspective) and
professionally defined outcomes/consequences (the
etic perspective) related to the coping strategy of
ARTICLE ORIGINAL
denial, emotional sequelae, and compliance with
treatment. Health care workers quickly see the
consequences (the etic view) of perceived stigma (the
emic view), such as the decision not to be tested or
not to visit an AIDS clinic. However, such workers
cannot assume they understand their patients’
perceived views of stigma and discrimination unless
they ask.
In August 2001, staff at the US National Institutes of
Health commissioned a series of papers that reviewed
the significance of stigma on health status and access
to care and offered suggestions on how to manage
stigma. Link and Phelan (2001) proposed that stigma
contains five elements. First, differences are identified
and labelled. Second, differences (labels) are linked to
undesirable attributes.Third, a separation of ‘them’
and ‘us’ occurs. Fourth, the resulting discrimination
and loss of status lead to devaluation, rejection,
exclusion, and blame, which Fife and Wright (2000)
described as social rejection, financial insecurity,
internalised shame, and social isolation. Fifth, this
process can take place only if a group is able to
enforce the stigma. Breaking down the process of
stigmatisation into these steps provides a framework
for a better understanding of the concept and target
interventions to reduce stigma.
Link and Phelan (2001) articulate three mechanisms of
stigma. One is direct discrimination at a person-toperson level, where activities devalue, reject, exclude
or blame the other person. A second is structural
discrimination in which social contexts, such as a sign
identifying an HIV/AIDS clinic, enforce stigma
without person-to-person actions.The third
mechanism is self-stigmatisation, a socio-psychological
process that operates through the stigmatised person.
Stigmatised persons apply labels to themselves, believe
in these labels, and live accordingly. Evidence of stigma
appears in three forms in nursing and patient care,
according to Jillings and Alexus (1991, p. 62-63): ‘(1)
the labels and stereotypes attached by society to
particular illnesses; (2) the patient’s behaviors toward
others as a result of feeling stigmatised; and (3) the
values and assumptions of nurses themselves in relation
to selected illnesses’. Nurses and other health workers
who care for persons living with HIV/AIDS have
their own emic view of stigma that may lead them to
promulgate prejudice and discrimination toward their
patients.The impact of this type of stigma on patients
is unclear. At the same time, nurses and health care
workers are the recipients of stigma from their
families, friends and patients. It is unclear how such
received stigma affects the quality of work life for
HIV/AIDS care providers.
The HIV/AIDS literature in recent years has devoted
considerable attention to the concept of AIDS stigma,
particularly after the XIII International AIDS
Conference in Durban, South Africa in 2000. Herek et
al. (2002) traced the prevalence of AIDS stigma in the
US for the period 1991 - 1999.They concluded that
although support for extreme, punitive measures —
such as putting HIV-positive persons in camps — had
decreased, AIDS remained a significantly stigmatised
condition. Apparently, similar studies have not been
done in southern Africa.
De Bruyn (1999) identified factors contributing to
HIV/AIDS stigma.These include the fact that AIDS is
life-threatening, that people fear it, that it is associated
with behaviours (for example drug use) already stigmatised by many societies, and that people with
HIV/AIDS are viewed by others as responsible for
contracting the disease.What is stigmatised and how
stigma is manifested may vary among different cultures
(Weiss & Ramakrishna, 2001). Some authors have
noted that stigma may also be different for men and
women (Bunting, 1996;Vlassoff et al., 2000). In
addition, the degree to which a person with HIV or
AIDS actually feels stigmatised may depend on
individual differences.
Although stigmatisation is associated with membership
of a group, not all members of the group necessarily
feel stigmatised (Harvey, 2001). Fife and Wright (2000)
explored the difference between the impact of stigma
on persons with cancer and on persons with
HIV/AIDS, and found that HIV+ people experienced
significantly more stigma. A study of stigma against
persons with HIV/AIDS in Uganda demonstrated a
strong gender bias (women were more stigmatised
than men), rejection by their families, increased
suspicion and gossip, and isolation in communities
(Aggleton, 2000; Monico,Tanga & Nuwagaba, 2001).
The Siyam’kela Project (Insideout Research, 2003)
recently completed a series of interviews and focus
groups in South Africa with persons living with
HIV/AIDS, faith-based organisations and leaders, and
governmental groups. They reported several stigma
factors based upon a content analysis of their
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ORIGINAL ARTICLE
interview and focus group data. The themes related
to external or enacted stigma included: avoidance,
rejection, moral judgment, stigma by association,
unwillingness to invest in persons living with
HIV/AIDS, discrimination, and abuse. The themes
related to internal or felt stigma included: selfexclusion from services and opportunities, perception
of self, social withdrawal, overcompensation, and fear
of disclosure.
Sandelowski, Lambe and Barroso (2004) reported on a
metasynthesis of 93 qualitative reports on stigma
among women living with HIV/AIDS in the USA.
They stated that none of the reports were excluded
for reasons of methodological quality, a strategy that
may significantly have limited their observations.
Extractable stigma findings were defined as ‘any
interpretation pertaining to stigma that could be
separated from other elements of the research report
(p.123). Using Herek and Capitano’s (1993) definition
of stigma, these were databased events pertaining to
prejudice, discounting, discrediting, and discrimination.They organised their key findings into a
taxonomy based upon some 2 000 statements of
stigma findings. Their taxonomy focuses upon
information management, principally related to the
data elements and outcomes of disclosure of HIV
status. Because it focuses primarily upon an
individually received view of stigma, this taxonomy
provides some insight into the issues related to
disclosure but little help regarding the issues of stigma
in high-prevalence countries, the context of stigma or
community-based stigma. They suggest their results
support a gender-linked intensification of stigma yet
they only reviewed studies of women so it is unclear
how such a conclusion could be drawn.
Nyblade (2003) recently reported on the results of 700
interviews with community members, persons living
with HIV/AIDS, youth, caregivers, religious leaders,
NGOs, and employers in Ethiopia,Tanzania and
Zambia. Their objective was to disentangle stigma and
thus provide a four-part framework based upon the
content analysis of their interviews. They suggested
that stigma could be best understood from the
perspective of (i) causes of stigma; (ii) context of
stigma; (iii) experiences of stigma; and (iv) effect of
stigma on programmatic efforts. This macro-level
framework is helpful to begin an understanding of the
complexity of stigma.
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Five instruments have been reported in the literature
designed to measure HIV/AIDS stigma.
• Herek and Capitanio (1993) developed a 10-item
instrument to measure the USA public’s stigma
regarding HIV/AIDS.The instrument measures
four factors: negative feelings toward persons with
AIDS (three items); support for coercive AIDSrelated policies (two items); blame of persons with
AIDS (one item); and intentions to avoid a person
with AIDS (four items). It enables calculation of a
single stigma score. No item analysis was reported.
Subsequent studies (Herek et al., 2002) used this
instrument to monitor changes in attitudes towards
stigma and results showed significant AIDS-related
stigma among a notable minority of the USA
public.
• Sowell, Lowenstein, Moneyham, Demi, Mizuna and
Seals (1997) reported on a 13-item scale used with
rural HIV-positive women in the southern USA.
The report provides little background information
on the scale, number of items, or its psychometric
properties.They reported a significant difference
between older and younger respondents with
respect to two items: younger participants perceived
a higher level of stigma regarding being blamed and
for losing friends, and African Americans felt more
afraid of rejection by their families than did
Caucasians.There were no differences by level of
income.
• Fife and Wright (2000) reported on the development of a 24-item, Likert scaled instrument based
on labelling theory that expresses stigma in terms of
four dimensions: social rejection, financial
insecurity, internalised shame, and isolation or
anomie. Scales for the four factors had Cronbach
alpha reliability coefficients ranging from 0.85 to
0.90. Using this scale, Fife and Wright (2000)
compared stigma associated with HIV/AIDS versus
stigma associated with cancer and found that the
aggregate stigma of AIDS was significantly higher
than that of cancer for all four dimensions.This
difference was true even when the background of
respondents and the severity of illness were
controlled.Very few demographic variables were
significantly related to overall measure of stigma,
although some subtle patterns emerged. Older
people, for example, showed more internalised
ARTICLE ORIGINAL
blame than younger participants, while women felt
more social isolation and anomie than men.
groups they belong to - usually the poor and minority
or those seen as morally deficient’.
• Berger, Ferrans and Lashley (2001) reported on the
psychometric properties of the 101-item HIV
stigma scale, which was tested on 318 HIV-positive
persons (19% women).The resulting factor analyses
supported four subscales: personalised stigma,
disclosure concerns, negative self-image, and
concern with public attitudes toward persons with
HIV. Cronbach alpha reliability coefficients for the
subscales ranged from 0.90 to 0.93.The instrument
uses a 4-point Likert scale, from ‘strongly disagree’
to ‘strongly agree’. Construct validity was further
supported by significant negative correlations
between stigma and self-esteem and social support,
and by significant positive correlations between
stigma and depression and social conflicts.
This paper hopes to provide a greater understanding
of stigma for nurses and other health care workers and
suggest some strategies for dealing with these
devastating effects.
• Bauman, Silver and Camacho (2000) reported on
use of the perceived stigma scale. Its two factors —
personal view and public view — measured stigma
among 237 mothers with HIV/AIDS.The
instrument has 48 items (24 per factor) and uses a
4-point Likert scale to assess participants’ level of
agreement with items measuring attitudes toward
stigma and discrimination.The personal view
portion of the scale (Cronbach alpha = 0.87)
purports to measure respondents’ personal beliefs
and attitudes about HIV. Items reflect shame, guilt,
blame, embarrassment, self-worth, and attitudes
about self.The public view portion of the scale
(Cronbach alpha = 0.90) targets respondents’
perceptions of others’ beliefs and attitudes about HIV.
Researchers have not used these scales to measure
stigma as an outcome measure in intervention studies
designed to reduce stigma. Also, none of these scales
have been used in countries with very high HIV
prevalence data such as South Africa, where stigma has
a significant impact on people’s lives. It is not clear if
the scales would be culturally appropriate for this
region because issues of sexuality, gender, race and
ethnicity, and class are intimately linked to HIV/AIDS
stigma (Parker & Aggleton, 2002). Madru (2003, p. 48)
recently reviewed the theory and historical background of stigma, and concluded that: ‘Perhaps the
most devastating effect of stigma on the HIV epidemic
is the willingness and ease with which societies use it
to assign blame to individuals, their behaviors, and the
What is the impact of HIV/AIDS stigma?
Few articles have investigated the impact of AIDS
stigma on quality of care.While limited data are
available, numerous testimonials from several countries
document the effect that stigma has on reducing
access to care. In a study of women who refused to be
tested for HIV at Ethiopian antenatal clinics, Kumbi,
Bedri, Abashawl, Isehak, Coberly and Ruff (2002)
concluded that fear of, and the stigma associated with,
HIV were significantly related to the women’s
decision. Munhenga, Chiwara, Jena, et al. (2002)
reported similar results regarding antenatal clinics in
Zimbabwe. At an Indian clinic that focused on men
who have sex with men (MSM), fear and stigma were
the reasons MSM cited for not using the clinic’s
services (Chakrapani, Govindan, Joseph &
Balasubramaniam, 2002). Donini,Tunala, Castanheira,
Melchior, Basso and Brittoe Alves (2002) explored
quality of care issues in focus groups at an HIV/AIDS
health clinic in Brazil. Patients as well as doctors
identified client-provider communication as a priority
in determining quality of care.The authors wrote:
‘Open lines of communication improve adherence to
treatment and facilitate patients' acceptance of the
disease as well as coping skills with the stigma of being
HIV-positive’.
For persons living with HIV/AIDS, stigma is one of
the most insidious barriers affecting access to and
provision of health services, particularly in southern
Africa and India (AIDS Alert, 2002). According to
Aggleton and Parker (2002, p. 9), ‘[t]he real battle
against AIDS in Africa is being played out in the
families and villages of Africa, where the authority of
government rarely extends.This sort of discrimination
is intensely personal and it takes many forms’. Personal
testimonies (Integrated Regional Information Networks [IRIN] 2002), support this: ‘Even doctors and
nurses don’t know about AIDS and treat us badly,’ said
Paula (22), who learned she was HIV-positive when
her baby died 6 months ago.
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ORIGINAL ARTICLE
Care for patients living with HIV/AIDS might be
substandard because caregivers often fail to comply
with universal precautions, perhaps due to perceived
stigma (Horsman & Sheeran, 1995). Among health
care workers in Kampala, Uganda, 29% indicated they
had never talked with patients about how to prevent
AIDS and 26% had not referred any patients for HIV
counselling (Mungherera et al., 1997). Other
researchers have reported that health care personnel
knew very little about the potential for HIV
contamination in the workplace (Hossini et al., 2000).
In Kuwait, some family doctors knew less than they
should have about HIV and looked upon AIDS
patients negatively, even in the third decade of the
AIDS pandemic (Fido & Kazemi, 2002). Similar to the
findings of Adebajo, Bamgbala and Oyediran (2003) in
Nigeria, the results in Kuwait showed that nurses and
laboratory technicians also had negative attitudes
toward AIDS patients. Health care workers’ poor
attitudes and inadequate care in these anecdotal
reports could be related to stigma.
2002). In Italy, researchers found a significant
correlation between lipodystrophy and lower quality
of life among 175 AIDS patients (Orlando et al.,
2002). Although investigators did not measure stigma,
they reported that lower role functioning, as measured
by their quality of life scale, was attributable to
perceived stigma.These studies illustrate the lack of
empirical information about the relationship between
stigma and quality of life. In summary, no empirical
studies have been located that explore the impact of
stigma on quality of care or quality of life for persons
living with or affected by HIV/AIDS. In addition, no
empirical studies have documented the impact of
stigma on quality of work life for nurses and other
health care workers.
As with quality of care issues, few empirical studies
explored stigma’s relationship to quality of life, and
most information about stigma’s negative impact on
quality of life as perceived by persons with HIV/AIDS
is in the form of testimonials: ‘It’s so hard,’ said a
tearful Rita. ‘The moment people learn I’m HIVpositive, they treat me differently. Neighbours shun
me. Children avoid touching me.The landlord finds
an excuse to kick me out of my room.’ (IRIN, 2002).
How can health care workers address stigma in
a way that helps clients manage their HIV in a
stigmatising environment?
Understanding the attitudes of nurses and other health
care workers toward AIDS patients is important in
order to plan how to use health care workers to
intervene against stigma. Health care workers
themselves are the recipients of stigma because they
care for people living with HIV/AIDS and are also
often the source of stigma from the perspective of
many people living with HIV/AIDS. Horsman and
Sheeran (1995) found a lack of information when
they conducted an extensive literature review of the
impact of HIV/AIDS on such workers in relation to
three major themes — their fear of becoming
infected, their perceived rights in refusing to care for
patients with HIV/AIDS, and the stresses they
experienced in providing HIV care.The researchers
offered these suggestions: (i) in order to compare
results from various studies about the attitudes and
knowledge of health care workers, investigators should
consistently use instruments that have been validated;
and (ii) investigators should study effects at the cultural
level rather than focus exclusively on individuals.
Elsewhere in the world, Ayarza and Reyes (2002)
described the traumatic effect that stigmatisation and
lack of pretest counselling had on the quality of life of
persons with HIV/AIDS in Ecuador. Studies by Castle
et al. (2002) and Ortega, Gonzales and Liwanag (2002)
found that such persons had both positive and
negative experiences when they became involved in
community-based programmes. According to these
researchers, access to services that offer peer support
ends self-isolation and reduces stigma, and thus
enhances quality of life.
The International HIV/AIDS Alliance links HIV and
tuberculosis (TB) care programmes in Cambodia,
India, and east and southern Africa. Stigma and
discrimination at community and institutional levels
were significant barriers to quality of life for persons
living with HIV/AIDS and to the Alliance’s efforts to
improve HIV and TB services (Cornu & Dhaliwal,
170
Testimonials also support the contention that AIDS
stigma gravely affects the quality of work life for
nurses in southern Africa (South Africa Development
Community AIDS Network of Nurses and Midwives,
2000), yet no studies have documented its impact.
Some health care workers feel reluctance or
discomfort about having direct contact with AIDS
patients (Adebajo et al., 2003; Adelekan et al., 1995;
Hossini et al., 2000; Mungherera et al., 1997;Wiley,
ARTICLE ORIGINAL
Heath, Acklin, Earl & Barnard, 1990). According to a
study at the University of Ilorin Teaching Hospital in
Nigeria, about one-third of nurses hesitated to care for
AIDS patients and half refused to help with births
(Adelekan et al. 1995). In another study, which looked
at health workers who cared for HIV-positive
haemophiliac patients, the high stress associated with
the workers’ demanding jobs was significantly related
to lower retention and job satisfaction (Brown et al.,
2002). Nurses in Argentina experienced high levels of
symptoms, such as depression and burnout, related to
working with AIDS patients (Martearena &
Celentano, 2002).
Unger,Welz and Haran (2002) studied the workload
and job satisfaction of 200 nurses working in a rural
KwaZulu-Natal hospital in South Africa where the
incidence of AIDS was very high. Between 1995 and
2000, nursing staff increased 10% (from 620 to 683)
yet annual absenteeism shot up 310% (from 316 total
days per year to 981 days per year). The number of
nurses who died during any one year rose from 2 per
year to 13 nurses per year.Working conditions, the
authors concluded, caused high rates of sick leave and
job dissatisfaction. HIV/AIDS had a major impact on
nurses’ capacity to respond to patient care needs in
that setting.
Although nurses and social workers in Canada were
concerned about becoming infected by HIV, Olivier
and Dykeman (2003, p. 649) found that ‘they
demonstrated shared professional values such as the
importance of self-awareness and professional
knowledge, positive and non-judgmental attitudes, and
non-discriminatory treatment of client groups’.
Far less research has been done to assess the impact of
AIDS stigma on HIV-positive nurses. Published data
on the HIV status of various levels of nursing
personnel are almost nonexistent. One exception is a
study that focused on 26 HIV-positive health care
providers in Cameroon, including physicians (N = 4,
15.4%), nurses (N = 6, 23.1%), nurse aides (N = 7,
26.9%), and ‘other’ (N = 9, 34.6%) (Mbanya, Pollaa &
Kaptue, 2002). O’Keeffe and Frankham (2002)
followed 15 HIV-positive health care providers (type
not specified) in Uganda, noting that these providers
needed support for their fear of disclosure and stigma.
There is little empirical information about the effect
that stigma and discrimination might have on the
quality of work life for nurses and other health care
workers in southern Africa.Testimonials by nurses
support the perception that their families and
community members stigmatise them. Testimonial
data also suggest that patients with HIV/AIDS report
that nurses and other health care workers stigmatise
them. Educational interventions are needed to address
this duality and might include role-playing, case
studies, and visits with persons who have HIV/AIDS.
There are numerous reports about nursing curricula
and continuing education programmes that build
nurses’ capacity to respond effectively to the
HIV/AIDS pandemic. Lalloo et al. (2002) cited a
continuing education programme for 912 health care
workers in KwaZulu-Natal, which emphasises the
continuum of care.The Baylor College of Medicine in
Houston and the South African Development Community AIDS Network for Nurses and Midwives
(SANNAM) have co-developed an HIV/AIDS
Nursing Curriculum for use in southern Africa (Kline
et al., 2002). Zengwa, Msiska and Anderson (2002)
described how SANNAM seeks to 'make a significant
impact on HIV/AIDS care and prevention by
strengthening the role of nurses and midwives in the
region.The network shares information, promotes best
practices, and builds capacity', by linking nurse leaders
so they can work and consult with each other. In
Uganda, nurses and midwives need broad education
about HIV/AIDS prevention and care (Walusimibi,
Okonsky, Colagreco, Kirton & Fitzpatrick, 2002).
Although some curricula address the basics of AIDS
care, the attitudes and behaviours related to stigma
receive little attention.Three training guides are
currently available to address HIV/AIDS stigma:
• Combating HIV/AIDS stigma, A manual for nurses.
(Uys, 2003).This is a guide consisting of seven
units, aimed at health workers, mainly nurses. It was
developed and tested for the SADC AIDS Network
of Nurses and Midwives (SANNAM).
• Understanding and challenging HIV stigma.Toolkit for
action. (Kidd & Clay, 2003).This is also a seven-unit
guide, and has a unit specifically dealing with
stigma faced by children.
• Reducing stigma and discrimination related to HIV and
AIDS.Training for health care workers.
(EngenderHealth, 2004).This guide is organised
into 16 sessions, and deals very thoroughly with
risk of infection faced by health workers, using an
infection control approach to reducing provider
stigma.They tested the impact of the package in
171
ORIGINAL ARTICLE
Nigeria, and initial results indicate that the training
greatly reduced stigmatising by providers (Nwando
& Enuga, 2004).
All three guides are available on the web.
Various authors have tried, through community
support, to reduce stigma by improving quality of care
and adherence to medication, and by enhancing
quality of life. One of the more creative efforts in the
Dominican Republic used a national song contest
focused on the stigma and discrimination associated
with HIV/AIDS (Brito, 2004). While such efforts
seem to have lowered the perception of stigma, actual
changes in stigma have not been measured. Brown,
Trujillo and Macintyre (2001) reviewed 21 studies of
interventions explicitly designed to decrease AIDS
stigma in developed and developing countries.
Overall, they concluded that there was agreement that
stigma could be reduced.When any two interventions
were compared, both were usually somewhat
successful. Interventions in developing countries
tended to be at the community level, while those in
developed countries tended to be at the individual
level. According to the authors, most intervention
studies in developing countries were not rigorously
evaluated and usually lacked validated measures of
stigma. Furthermore, few of the studies explored
changes in stigma scores over time.
In Thailand, villagers reported less stigma toward
persons with AIDS if health volunteers in the villages
had undergone training (Mashimo et al., 2001).
Buhendwa, Zachariah and Labana (2002) examined
the role of communities in caring for and supporting
persons with AIDS in Malawi. Two nurses and a
doctor there supervised 160 volunteers working with
nearly 1 000 AIDS patients who received home-based
care. As a result, the morbidity rate fell from 50% to
15%, and the mortality rate dropped from 35% to 8%.
‘The stigma begins to disappear and the much-needed
solidarity for [persons living with AIDS] begin[s] to
emerge,’ the authors reported. However, they did not
present any data measuring change in stigma. Lack of
measurement is common in other studies of stigma
interventions (Carneiro-da-Cunha et al. 2002; Garda,
Rao, Bopardekar & Rout, 2002; Green, Chum, Moth,
Suon & Ma, 2002; Kiguli, Batusa, Mayanja &
Ssebikejje, 2002; Mutissa & Lingani, 2002; Omondi,
Auka, Kimanzi & Mangira, 2002; Schimmer, 2002).
172
A small number of empirical studies have looked at
the impact of stigma on the quality of health care for
persons with HIV/AIDS. But most published research
lacks rigorous qualitative or quantitative methods and
relies instead on testimonials.Thus, to better
understand how stigma truly affects patients and their
families, there is a need for rigorous qualitative studies.
Also needed is empirical outcomes research on the
quality of care that AIDS patients receive when health
care workers highly fearful HIV will infect them on
the job, are reluctant to treat such patients. Other
studies should explore the effect on patients of nurses’
stigma — including nurses’ care-giving behaviours —
and the extent to which nurses contribute to the
stigma perceived by patients and their families.
Psychometric studies to develop valid and reliable
scales for measuring stigma are necessary for a better
understanding of the extent of stigma, its correlates
(e.g. gender and class), how stigma changes over time,
the impact of interventions, and stigma’s impact on
quality of care and patient outcomes.
Based on this review of the work related to stigma,
Table 1 suggests some strategies that nurses and other
health care workers could use to assist people living
with HIV/AIDS to manage the stigma associated with
their illness. They are offered as a beginning point for
discussion about using a decision-making process, such
as the nursing process, to assess, diagnose, manage and
evaluate the impact of perceived stigma on the lives of
people living with and affected by AIDS stigma.
Conclusion
This paper reviewed the literature on stigma and
AIDS care, with a particular focus on understanding
different definitions and conceptual models of stigma,
the impact stigma has on quality of care for, and
quality of life of persons living with AIDS, and
intervention strategies related to the management of
stigma. Nearly all of the research on this subject has
lacked rigorous scientific analysis, relying instead on
testimonials. Few studies have actually measured
stigma or documented how stigma changes over time
or its impact on quality of care or quality of life for
people living with HIV/AIDS. Few authors have
discussed the implications of AIDS stigma for health
care workers, including nurses. Nurses and health care
workers worldwide are committed to providing
quality patient care in a supportive environment. If
health care workers are themselves a reservoir of
ARTICLE ORIGINAL
TABLE I. SUGGESTED STRATEGIES FOR REDUCING AIDS STIGMA
Assessing
Diagnosing
Determine family,
partner and friends’
support
Determine
psychosocial strength
of client
Assess community
support, legal issues
Determine need and
readiness for ART
Determine strength of
the person to cope
with negative attitudes
from others
Diagnose client’s
knowledge, attitudes,
and behaviours related
to stigma and
HIV/AIDS
Assess for mental
health, including
depression, fear
and suicidal ideation
Managing
Evaluating
Link client with social
support services,
including PWA
groups if appropriate
Establish ongoing
care relationship with
client
Assist with
medication and illness
management
Assess adherence to
medications, explore
for stigma-related
non-adherence
behaviour
Assess engagement
with care, keeping
appointments, etc.
Assess adequacy of
social support and
environment for
managing stigma
Assess readiness for
participation in HIV
care, including ART
perceived stigma from the patient's perspective,
research strategies are necessary to better understand
the phenomenon, and intervention strategies are
necessary to eliminate it from practice. Anecdotal
evidence, particularly from southern Africa, suggests
that perceived stigma has a significant negative impact
on the quality of life of persons living with HIV/
AIDS and on the quality of work life of nurses and
other workers who care for them. Part of the
challenge of AIDS stigma is to recognise its impact on
patients and caregivers alike and to develop strategies
for mitigating its effects.
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and midwifery in HIV/AIDS prevention, care, and support.Abstract, XIV International AIDS
Conference, July 7-12, Barcelona, Spain.Abstract Number WePeF6782.
RAPPORT DE CONFÉRENCE
The meaning and challenge of voluntary counselling and testing
(VCT) for counsellors — report of the Kenya Association of
Professional Counsellors (KAPC) conference for sub-Saharan Africa
C O Rachier, E Gikundi, D H Balmer, M Robson, K F Hunt, N Cohen
ABSTRACT
A large number of voluntary counselling and testing (VCT) sites are being opened in sub-Saharan Africa.The
services provided by these sites are playing an increasingly important role in the prevention of HIV/AIDS.The
sites offer many possibilities and it is crucial that they provide the optimum services for clients. Counselling is an
integral part of these services, yet it receives little attention. Counsellors need to be consulted if the optimum
services are to be provided, but they are rarely consulted for their professional opinion. Accordingly, the Kenya
Association of Professional Counsellors (KAPC) organised a 3-day conference in September 2002 to provide
counsellors, drawn from the sub-Saharan region, with a forum to identify VCT-related issues and discuss their
implications.The main aim of the conference was for counsellors to arrive at a consensual position regarding
HIV/AIDS and what improvements they thought could be made for the VCT services to clients.The counsellors
identified the issues that they considered important and this paper presents those issues together with
recommendations regarding improvements.
Keywords:Voluntary counselling and testing (VCT), conference report, sub-Saharan Africa.
RÉSUMÉ
Un grand nombre de sites de consultation et de dépistage volontaires (VCT) sont mis en place en Afrique
subsaharienne. Les services pourvus dans ces sites jouent un rôle encore plus important dans la prévention du
VIH/SIDA. Les sites offrent beaucoup de possibilités et il est crucial qu’ils pourvoient des services les meilleurs
aux clients. La consultation psychologique fait partie intégrante de ces services, malgré qu’elle reçoit très peu
d’attention. Les conseillers psychologiques doivent être consultés si on veut optimiser les services fournis.
Malheureusement, ils sont rarement consultés pour leur opinion professionnelle. En conséquence, l’Association des
Conseillers Professionnels du Kenya (KAPC) a organisé une conférence sur 3 jours, en septembre 2002, afin de
donner aux conseillers, venus de la région subsaharienne, un forum à l’intérieur duquel ils peuvent identifier les
problèmes et discuter leurs implications. Le but principal de cette conférence était de permettre les conseillers à se
mettre d’accord sur le VIH/SIDA d’une manière unanime et de proposer une amélioration de services de VCT
mis à disposition des clients. Les conseillers ont identifié des problèmes considérés primordiaux. Cette
communication présente ces problèmes et les recommandations liées aux améliorations proposées.
Mots clés : Consultation et dépistage volontaires (VCT), rapport de conférence, Afrique subsaharienne.
Cecilia Rachier (MA) is the Executive Director of KAPC. She teaches on the MA and counsellor supervision courses. She has wide experience in subSaharan Africa and has helped to establish professional counselling services in the region.
Elias Gikundi (MA) is the Associate Executive Director of KAPC. He has worked in a number of countries in sub-Saharan Africa helping to develop
counselling services and the provision of counselling supervision.
Don Balmer (PhD) has worked in sub-Saharan Africa helping to develop counselling services. He is a director at KAPC and is a Senior Research Fellow
of the University of Durham, UK.
Maggie Robson (PhD) is Senior Lecturer at the School of Psychology, University of Keele, UK. She teaches counselling on a variety of courses and is
also a trained Play Therapist.
Kathryn Hunt (MA) is a lecturer at the University of Durham UK where she teaches counselling and she is also a trained Play Therapist. She has
research interest in bereavement in adults and children.
Nonie Cohen (MA) is a lecturer at the Centre for Studies in Counselling at the University of Durham, UK. She has worked with international postgraduate
students of counselling in Hong Kong and the University of Durham. She has taught on the MA in Counselling (HIV/AIDS) in conjunction with KAPC.
Copyright of the report remains the property of KAPC.The opinions and views expressed are those of the authors.
Correspondence to: C O Rachier, Executive Director, KAPC, PO Box 55472, Nairobi 00200, Kenya.Tel 254 2 786310, fax 254 2 784254,
e-mail: [email protected].
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CONFERENCE REPORT/RAPPORT CONFÉRENCE
The meaning and challenge of voluntary counselling and testing (VCT) for counsellors
— Report of the Kenya Association of Professional Counsellors (KAPC) Conference for
sub-Saharan Africa
Introduction
Voluntary counselling and testing (VCT) has become a
basic component in the provision of HIV/AIDS
services, and the number of VCT sites in sub-Saharan
Africa is increasing rapidly. Most of these sites are
regulated and controlled by Ministries of Health and
given the present state of the epidemic their primary
concern is prevention (Ministry of Health, 2001).
However, counselling is an important component of
VCT and if counsellors were more directly involved
the service could be more client friendly. Counselling,
as a dedicated profession, is still a relatively new
concept in sub-Saharan Africa. However, given the
geographical and social changes in the region the
demand for counselling services is growing. In response
to this demand the Kenya Association of Professional
Counsellors (KAPC) was formed. It has been active
since 1991 and seeks to promote counselling as a
professional service.These services include counsellor
training, counsellor supervision, personal and
professional development, and research. In addition,
KAPC holds an annual conference to provide an
opportunity for counsellors to meet and discuss issues
of current importance. After consultation with
members, colleagues, organisations and donors a need
was recognised to hold a conference on the theme of
‘The Meaning and Challenge of VCT for
Counsellors’.
The demand for this conference arose from a number
of concerns. HIV/AIDS confronts the region with
some of its greatest challenges and the consequences
are dramatic and far-reaching (De Cock, MboriNgacha & Marum, 2002). Attention needs to be given
to providing adequate and effective HIV/AIDS
services and these needs should include counselling
(Kipp, Kabagambe & Konde-Lule, 2002). Usually the
services are controlled and directed by the Ministries
of Health in the region and the agenda is mainly
prevention. Consequently, the role of counselling is
acquiescent and not given sufficient recognition. But
counselling issues relating to confidentiality, condoms,
orphans, families, cultural beliefs and knowledge are of
critical importance and need to be addressed.
Initially, the aim of HIV testing was to give the client a
sero-status test result and promote behaviour change.
This was done largely through information and
education procedures. However, the critical importance
of counselling as a means of behaviour change has
been acknowledged. One of the research studies in
176
which KAPC participated was to evaluate counselling
and testing (C&T).This was the first randomised
controlled study that showed that C&T helped change
behaviour (Balmer et al., 2000;Voluntary HIV-1
Counselling & Testing Efficacy Study Group, 2000).
Since then few studies have tried to assess the quality
of VCT services (Ginwalla et al., 2002).
Recent developments in HIV testing technology now
provide opportunities to explore new approaches.
These technologies have liberated testing from
laboratory dependence and the new rapid-test methods
no longer have to be medicalised.This provides an
opportunity to evaluate client-centred counselling,
which is a recognised motivator to changing behaviour
(Voluntary HIV-1 Counselling & Testing Efficacy
Study Group, 2000).These changes also provided an
opportunity for counsellors to reflect upon recent
developments and to consider the implications for
counsellors working in VCT sites.
Conference organisation
The conference was organised by the KAPC
Conference Committee, who drew up the official
conference programme. Sponsors were sought and the
Center for Disease Control and Prevention (CDC),
FUTURES Group and the Ford Foundation agreed to
support the conference. It was decided to invite the
Kenyan Minister of Health to officially open the
conference. Keynote speakers were identified and
invited to make seminal presentations and abstracts
were invited. A total of 364 participants registered,
coming from Kenya, Uganda, Somalia, Burundi,
Nigeria, Sudan, Zambia, Zimbabwe, Malawi, Botswana,
the Democratic Republic of Congo, South Africa and
the United Kingdom.The majority of the participants
were from the helping professions, including counsellors,
teachers, social workers and medical workers.
Sixty-five abstracts were submitted, of which 48 were
accepted and categorised into various themes.There
were four sessions per day, three of which were
dedicated to presentations on different topics of VCT
including keynote speakers and paper presentations,
and one session was dedicated to open discussion. In
contrast to many conferences there were no parallel
sessions and as a consequence most participants
attended most sessions.
During the three sessions two rapporteurs kept a
record of the presentations, discussions and questions.
— report of the Kenya Association of Professional Counsellors (KAPC) conference for
sub-Saharan Africa
The rapporteurs were experienced, but as this was not
a research study no attempt was made to track the
inter-rater reliability of their separate observations.
From these observations a list of the main issues was
compiled in consultation with the conference
committee. In the open session the rapporteurs
reported on the main issues that emerged and
conference participants were invited to give their
comments. From these open sessions tentative
recommendations were generated from the conference
discussions. At the end of each day these recommendations were refined and during the final session of the
conference they were presented to the conference
body for validation. Each recommendation was
discussed and a final consensual recommendation
arrived at regarding the position of counsellors in the
area of HIV/AIDS and what improvements could be
made for the services to clients.The validation process
allowed a list of main issues to be ratified by the
conference participants.The list was circulated to all
conference participants and sponsors. A copy was
placed in KAPC's library to be consulted by members
and students.
Themes and recommendations
The following themes were identified and discussed
during the conference:
• training
• supervision
• career structure and job description
• human rights
• young people
• gender
• referrals and outreach
• counselling models in VCT.
Training
It was recognised that there was an urgent need to
increase the number of trained counsellors. However,
the imperative to rapidly expand the number of VCT
centres should not be a justification for reducing the
length or quality of counsellor training.The urgency of
providing effective counselling services should be an
argument for ensuring that professional standards are
maintained.There were presentations from Nigeria
(Yahaya, 2002), Malawi (Kampira, 2002) and Uganda
(Nyanzi, 2002) that stressed the need for professional
training. Examples of counsellors being trained for 1
week were quoted and this was deemed to be
inadequate.
It was also felt that counsellors should hold a minimum
of a certificate in general counselling, before
specialising in VCT counselling. A certificate course
usually required approximately 150 hours and gave a
sufficient grounding in theoretical foundations and
practical skills. General training followed by
specialisation is the norm in medical training and this
model should be adopted for counsellor training. In
Kenya the national VCT counselling guidelines
stipulate that a minimum of 124 hours is required
(NASCOP, 2002).
To accommodate these training issues, it was felt that
the client-centred model of counselling was the most
appropriate.This model is rooted in the theoretical
writing of humanistic counselling that focuses on the
person as a unique and singular individual. A distinction needed to be made between the meanings of
‘client-centred’ in counselling parlance as opposed to
medical settings. Instances were given of individualised
risk reduction plans as representing client-centred
counselling.While this is generally accepted in medical
settings it has a different connotation in counselling.
Distinguishing who determines the agenda for the
interaction can best highlight the difference. In
counselling circles it is the client who principally sets
the agenda, but in VCT the agenda is set by the needs
of the medical services. However, it is possible to
address the client agenda and still meet the service
agenda. Studies in counselling and testing show that
clients’ satisfaction is in direct proportion to the extent
that they are able to set the agenda. One presentation
from the UK discussed the possibilities that the clientcentred method brought to VCT and the implications
for training (Robson, 2002).
Recommendations:
• VCT counsellors should be trained to at least certificate
level in general counselling before specialising in VCT.
• VCT counsellor training should incorporate client-centred
approaches where the client's agenda is addressed.
• Special attention should be given by governments,
ministries and parastatels to the selection of responsible and
willing candidates for VCT training.
Supervision
As the numbers of clients seeking VCT counselling
increases so the need to supervise the counsellors is
vital to ensure quality counselling.This supervision is
different to managerial supervision, although it has
been recognised that supervision can improve working
relationships where a supervisory role is concerned.
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CONFERENCE REPORT
sub-Saharan Africa
Supervision in VCT sites can provide a number of
useful functions including: preventing burnout, giving
support, guaranteeing quality assurance, providing
professional self-regulation, and ensuring personal and
professional growth. Consideration was given to the
amount of time devoted to supervision. Most people
felt that supervision should be provided on a weekly
basis. Supervision should be provided by suitably
qualified counsellors using ethical procedures for
helping the counsellors. It was evident that some
countries were further advanced in offering
supervision than others, and all needed to be brought
to par.
Recommendations
• Supervision should be mandatory for all VCT counsellors,
including VCT counsellor-supervisors. It has improved the
quality of the client-counsellor relationship and prevented
counsellor burnout.
• Supervision should be provided on a regular basis and not
less than once every 2 weeks.
Career structure and job description
The issues mentioned above relating to training impact
upon the position and career structure of counsellors.
Counsellors have a professional voice and it should be
recognised. One method of gaining recognition is
through an autonomous and self-regulating professional
status based upon professional training.The Minister
for Public Health commented about the position in
Kenya. He said: 'I am also aware that the Ministry of
Health does not have a professional cadre of HIV
counsellors, which leaves counselling to be done by
other health workers, who are trained as, and perform
the duties of counsellors, in addition to their normal
duties.The Ministry is addressing this anomaly as VCT
is viewed as a major service which should be managed
on its own.’ (Ongeri, 2002, pp. 10-12).
Recommendations
• Counsellors should be included in policy making and
advising on the role of counselling in VCT. Counsellors are
the only people who can adequately and accurately
represent the professional opinion of counsellors.
• Counsellors should be provided with an accurate job
description.
• There is an immediate need for a career structure within
government ministries that permits professional
development and recognition.
178
Human rights
More attention needs to be given to the issue of
human rights and confidentiality in medical settings, as
well as how it is managed and maintained. In VCT the
counsellors are the people who give the result of a test
to the client and this can cause conflict with the rest of
the medical staff. Often clients confide information to
the counsellors that the doctors want to know, but the
counsellors cannot divulge because of confidentiality.
In the region there are many instances where people
are tested in a way that violates human rights.
Examples were cited of immigrants, couples seeking to
marry, children being adopted, military personnel and
people wanting insurance.These examples often
include breaches of confidentiality that reinforce stigma
and increase discrimination. Laws should require
specific informed consent for testing, and failure to
obtain voluntary consent is a violation of personal
liberty and privacy.
The role of the VCT counsellor is critical in protecting
the human rights of clients, and counsellors should
represent clients when policy decisions are being made.
The counsellor should also be offered some protection,
but currently there is no legal definition, in any of the
countries, of who is a counsellor. It would be very
difficult to proscribe a cadre of people who alone were
allowed to conduct counselling. However it would be
possible to regulate those people who can give an HIV
test.
Recommendation
• The client’s human rights should be sacrosanct in all
counselling relationships, not just VCT, and counsellors should
be present at forums when this issue is being discussed.
Young people
Young people are a specific target group for VCT, but
they are notoriously fickle in their attitude toward
adults. An adolescent gave a keynote address on ‘VCT
and the voice of adolescents’ (Aloyo, 2002). He
outlined the concerns, fears and opinions of
adolescents in the face of adult pressures and noted that
adolescents tend to look at adults with suspicion.
It is estimated that in less than 5 years there will be 1.5
million AIDS orphans in Kenya (De Cock, 2002).VCT
services should also be available for them so that they
can address the issue of behaviour change and not just
sub-Saharan Africa
be given information or advice.Young people seek
reassurance that nothing untoward will happen to
them when presenting at VCT sites.The conference
participants thought that it is much easier to make a
stand-alone VCT centre youth friendly than one
integrated into a traditional health care setting.
Providing intermediary services like telephonic, postal,
e-mail or internet channels for VCT should help
adolescents. Currently there is a basic lack of trust on
the part of young people that must be overcome if
they are to present at VCT centres. It may help if
centres provide individual counselling that is specific to
their needs, including sex, drugs and STIs.
Recommendations
• VCT centres need to develop adolescent-friendly policies to
attract young people to come and test. Individual
counselling should always be available for young people.
The centres should also address their specific needs
appropriately, including sex, drugs and STIs.
Gender
Gender inequality was an important topic discussed
during the conference.The position of females in subSaharan Africa is generally a subservient one.This sense
of subservience is present at birth and is reinforced as
the girl-child matures at puberty and eventually is
contracted into marriage.The norms that affect the
expression of female sexuality undermine the position
of women and prevent them from active and positive
decision-making.This subservient position makes
females more likely to be abused than males. Abuse
takes many forms, both physical and psychological:
physical abuse includes rape and violence, while
psychological abuse includes coercion, intimidation and
terrorising.
Client-centred counselling can give females the
opportunities to explore the circumstances of their
lives and to consider alternatives.VCT sites should
actively encourage women by strengthening their selfesteem and giving them assertiveness skills.
Assertiveness skills however should not promote
confrontation, but rather mediation and compromise.
This obviously has consequences for men, who,
wherever possible, should participate in counselling.
Men should recognise that their behaviour can be the
result of rigid and stereotyped roles and they should be
encouraged to engage in mediation and compromise,
and recognise that this is a mark of strength.The aim
of improved gender counselling is for couples to
explore their relationship and arrive at a new
understanding of it and the needs of their partners and
themselves. For this to happen women should become
stronger so that they can engage in dialogue as equals,
and men should become stronger by being empowered
to reduce their rigid authority role.
Recommendations
• Counselling in VCT centres should give special attention
to the needs of the girl-child, young women and married
women.VCT centres should also address the issues of
violence, abuse, rape and family planning.Training in selfesteem and assertiveness should be available for this group
of clients.
Referrals and outreach
As the demand for VCT increases more stand-alone
sites will be established.These stand-alone sites will not
be able to offer the full range of medical services.The
majority of clients who attend stand-alone sites are
healthy, and generally require only knowledge of their
HIV status for behaviour change. In Kenya 85% of the
general population will receive a negative result.
However it is equally important that their behavioural
needs are addressed. In some instances needs are both
dependent and independent of HIV status, for
example, in the case of family planning.These needs
either should be addressed at the site or the client
should be referred. Each site should prepare a list of
referral agencies to which clients can be directed
where necessary. In rural communities, such as Rakai
in Uganda, it is recommended that VCT services be
delivered directly into homes (Ssemanda, 2002).
Clients who receive an HIV+ result should be
supported, together with those who receive an HIVresult and wish to have further counselling. Even if
medical services are not available, psychological means
of support should be on site.This may take the form of
individual or group counselling. Clients should be
helped to address issues such as partner notification.
The aims should be to achieve positive and sustained
behaviour change.
Recommendations
• Referrals and outreach services should be available at the
VCT counselling centre. Particular attention needs to be
given to support groups for people who are HIV+.
Counselling models in VCT
It was agreed that no one model of VCT was
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CONFERENCE REPORT
sub-Saharan Africa
appropriate to all regional settings, but that the type of
model would be determined by the services. It was
clear that counselling focussed on different activities in
different settings, i.e. information, advice and counselling. Counselling was still a relatively new concept in
the sub-Saharan region and people were not sure what
to expect from counsellors. In addition, there was an
element of confusion regarding the nature of services,
particularly in VCT. VCT counselling is most
commonly understood in the context of information
and advice and the services appear on a continuum
ranging from information, advice, to counselling.
The discussions established that from counsellors’
experiences of VCT the most elementary and least
demanding form was information. Generally clients
sought information about the test and its implications.
The relationship of client and counsellor was not so
critical and there was no theoretical foundation that
guided it. Information could be given in pamphlets,
posters, leaflets or books, and such information
campaigns have been remarkably successful.The vast
majority of the population are aware of the pandemic.
However the counsellors could find no correlation
between providing information and changing
behaviour.
Giving advice, as opposed to information, was a
traditional practice in sub-Saharan Africa. People with
problems were used to consulting elders or community
leaders who advised them.The elders or leaders
needed to be trusted and respected if the advice was to
be accepted. If the relationship was nurturing and the
individual accepted the argument, then s/he accepted
the advice and acted upon it. Many VCT counsellors
participating in the conference gave examples of
advising clients about risk reduction strategies. Such
discussions helped clients to understand the
implications for their own behaviour, but there was
little evidence that they actually changed their
behaviour. No doubt different countries would adapt
counselling methods to the prevailing social
circumstances.
Many conference participants reported that they tried
to provide counselling, but while it was appreciated
that the quality of the client/counsellor relationship
was crucial, some found it difficult to achieve. Much of
the VCT literature failed to mention the relationship
and instead stressed information. Counsellors also
found themselves under pressure to add other services
180
for sexually transmitted infections (STI), tuberculosis
(TB), family planning (FP) and mother to child health
(MCH) to their counselling.The very nature of the
added services may make it impossible for the
counsellor to offer quality time to the client for
sufficient self-exploration of their sexual behaviour and
possible options. However in the case of prevention of
mother-to-child transmission (PMTCT) in South
Africa it has been successful (Mokgohloa, 2002).
Many participants gave examples of how the
counselling process led to behaviour change.
Regarding theoretical orientation it was felt that the
client-centred model, with its emphasis on empathy,
genuineness and warmth, was the most appropriate to
govern the client-counsellor relationship.
The graph illustrates that there is a relationship
between the information-advice-counselling axis and
the behaviour change axis, although there is no
evidence to prove that there is a linear relationship.
This relationship emerged from the discussions during
the conference.
FIG. 1. RELATIONSHIP BETWEEN INFORMATION-ADVICECOUNSELLING AND BEHAVIOUR
B
e
h
a
v
i
o
u
r
C
h
a
n
g
e
Information
Advice
Counselling
In his opening remarks Kevin De Cock, Regional
Director, CDC, said that ‘It may be fear of AIDS that
brings clients into your counselling rooms — but they
can leave the counselling session with new knowledge
and skills to empower them to have more fulfilling
personal relationships with their sexual partners and
others, as well as influence the others’ behaviour (De
sub-Saharan Africa
Cock, 2002, p. 6).This is a considerable demand to
place upon counsellors and to satisfy it they need to be
operating at the counselling end of the continuum.
Recommendations
• The counselling model needs to be distinguished from the
medical model in offering help to VCT clients. It is the
basic tenets of the counselling model that should determine
practice in VCT sites.
• VCT centres can operate outside medical centres and
stand-alone sites are welcomed by clients.
• VCT is one method of offering HIV testing that can be
incorporated into the client-centre model of counselling and
this has the potential of improving behaviour change.
Conclusions
Counselling has been gaining acceptance in subSaharan Africa and has a growing professional recognition.This recognition should permit counsellors to
define legitimate counselling activities and how they
can be incorporated into VCT.The conference helped
to define the meanings and challenges that VCT has
for counsellors.
The recommendations from the conference have
identified some of the activities that need to be
introduced or altered in VCT centres.They represent
the consensual opinion of counsellors and are therefore
worthy of consideration.The participants found the
conference an exciting experience, largely because they
had been able to come together and exchange
experiences. Many found that others shared the
isolation that they suffered at work and the exchanges
had been therapeutic.The discussions that took place at
coffee and lunch breaks were also important.There is
evidence that VCT counselling is changing behaviour
and if the above recommendations are addressed it
could be further improved. It is hoped that those
responsible for VCT will implement these
recommendations.
One positive outcome was that a committee to
formulate a scheme of service for counsellors was
constituted, chaired by KAPC and NASCOP and
employed by the Ministry of Health.This committee
has reviewed issues concerning training, selection,
accreditation, employment, and salary and career
structure for counsellors and is finalising its
recommendations.
Carkhuff, a counselling theorist, commented that
‘Counselling is never a neutral intervention, it either
has a positive or negative effect.’ (Carkhuff, 1969,
p. 27). Counsellors in the region are anxious that
counselling in VCT sites should have a positive effect
and they wish to collaborate in ensuring this outcome.
They will actively work in partnership with other
professionals, but feel that they have a unique and
singular contribution to make.
From the discussion of the meanings and challenges of
VCT for counsellors, it is clear that counselling needs
to be grounded in theoretical approaches and not just
in the provision of medical education.The theoretical
approaches need to be refined and tested in VCT sites
and the conference has helped to facilitate that process.
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The Meaning and Challenge of VCT for Counsellors. Report of KAPC 3rd Counselling
Conference (pp. 23-29). Nairobi: KAPC.
Ongeri, S.K. (2002). Speech by the Minister for Public Health, Hon. Prof. S.K. Ongeri.
The Meaning and Challenge of VCT for Counsellors. Report of KAPC 3rd Counselling
Conference (pp. 10-12). Nairobi: Ministry of Health.
Robson, M. (2002). Challenges and possibilities of offering a counsellor training model
rooted in a western humanistic philosophy with client-centred practice in Kenya. The
Meaning and Challenge of VCT for Counsellors. Report of KAPC 3rd Counselling
Conference, (pp. 41-48). Nairobi: KAPC.
Ssemanda, J. (2002). Home delivery of VCT in a rural community cohort. The Meaning
and Challenge of VCT for Counsellors. Report of KAPC 3rd Counselling Conference (pp.
147-149). Nairobi: KAPC.
Voluntary HIV-1 Counselling & Testing Efficacy Study Group (2000). Efficacy of
voluntary HIV-1 counselling and testing in individuals and couples in Kenya,Tanzania
and Trinidad: a randomised trail. Lancet, 356, 103-112.
Yahaya, J.I. (2002). Utilisation of VCT facilities in Nigeria. The Meaning and Challenge of
VCT for Counsellors. Report of KAPC 3rd Counselling Conference (pp. 16-22). Nairobi:
KAPC.
181
NOTICE TO AUTHORS
Submission of papers
The journal publishes contributions in English and French
from all fields of social aspects of HIV/AIDS (care,
support, behaviour change, behavioural surveillance,
counselling, impact, mitigation, stigma, discrimination,
prevention, treatment, adherence, culture, faith-based
approaches, evidence-based intervention, health
communication, structural and environmental intervention,
financing, policy, media, etc.). While the emphasis is on
empirical research (qualitative and quantitative), the journal
also accepts theoretical and methodological papers, and
review articles, which should not be longer than 8 000 to
10 000 words, as well as, short communications, letters,
commentaries and book reviews. Priority is given to articles
which are relevant to Africa and the developing world and
which address social issues related to HIV and AIDS. Special
issues may deal with a specific topic, region or country.
Submission of papers presented at the biannual international
conferences of HIV/AIDS and STI in Africa and biannual
Social Aspects of HIV/AIDS Research Alliance (SAHARA)
conferences are especially invited.
The reference style should follow APA guidelines:
http://humanities.byu.edu/linguistics/Henrichsen/APA/AP
A01.html
Authors are requested to submit their original manuscript
and figures with two copies and a matching disc to the
Editor: Prof Karl Peltzer, Social Aspects of HIV/AIDS and
Health, Human Sciences Research Council, Private Bag
X9182, Cape Town 8 000, South Africa. Manuscripts can
also be submitted by e-mail. Please create one folder (with
the name of the corresponding author) for all word and
figure files, and email this to the editor at
[email protected]
References: All publications cited in the text should be
presented in a list of references following the text of the
manuscript. In the text refer to the author's name (without
initials) and year of publication (e.g. ‘Since Shisana and
Simbayi (2002) have shown that...’ or ‘This is in agreement
with results obtained later (Uys, 2002))’. For 2 - 6 authors
all authors are to be listed at first citation, with ‘&’
separating the last two authors, for more than six authors,
use the first six authors followed by ‘et al.’. In subsequent
citations for three or more authors use ‘et al.’ in the text.
The references should be arranged alphabetically by
authors’ names.The manuscript should be carefully checked
to ensure that the spelling of authors’ names and dates are
exactly the same in the text as in the reference list.
References should be given in the following form:
Shisana, O., & Simbayi, L. (2002) Nelson Mandela/ HRSC
study of HIV/AIDS: South African national HIV prevalence,
behavioural risks and mass media household survey 2002. Cape
Town: Human Sciences Research Council Publishers. (full
text: www.sahara.org.za)
Submissions will be considered on the understanding that
they comprise original unpublished material and are not
under consideration for publication elsewhere (all authors
are to sign on submission of the article), and the study(ies)
on which they have been based have been subject to
appropriate ethical review.
All submissions may be subject to initial assessment by the
editor or appropriate Editorial Board members to
determine their suitability for consideration by the Journal of
Social Aspects of HIV/AIDS. Papers accepted for formal
review will be sent anonymously to at least two
independent referees.
Short biographic details of not more than 10 lines should
be provided at acceptance of the paper for publication.
Manuscript preparation
General: Manuscripts must be typewritten, double-spaced
with wide margins, on one side of white paper. Good
quality print-outs with a font size of 12 are required.The
corresponding author should be identified (include a fax
number and e-mail address).
182
Abstract and keywords: Supply an abstract (without
subheadings) of up to 300 words and up to six keywords.
Text: Follow this order when typing manuscripts:
• On the covering page — author, affiliation, full postal
address, fax number and e-mail address, names and
affiliations of co-authors should be clearly indicated.
Please ensure that these details are printed on the cover
page only, and do not appear on any other separate
sheet.
• References
• Appendix
• Figure captions
• Tables and figures. Do not import figures or tables into
the main text. Footnotes are to be listed separately at the
end of the text and not at the bottom of each page.
Hall, E., & Shisana, O. (2003).The impact of HIVAIDS on
health workers employed in the health sector. In O. Shisana,
& E. Hall (Ed.), The impact of HIV/AIDS on the health sector:
National survey of health personnel, ambulatory and hospitalised
patients and health facilities, 2002 (pp. 57-84). Cape Town:
Human Sciences Research Council Publishers. (full text:
www.sahara.org.za)
Streefland, P.H. (2003). Introduction of HIV vaccine in
developing countries: social and cultural dimensions. Vaccine,
21(13-14), 1303-1309.
AVIS AUX AUTEURS
Soumission d’articles
Le journal publie des communications en Anglais et en
Français de tous les domaines des aspects sociaux du VIH/SIDA
(le soin, le soutien, le changement du comportement, la
surveillance comportementale, la consultation, l’impact, la
réduction, le stigmate, la discrimination, la prévention, le
traitement, l’adhésion, la culture, les approches basées sur la foi,
l’intervention évidence-basée, la communication sur la santé,
l’intervention structurale et de l’environnement, le financement,
la politique, le média, etc).
Bien qu’il mette l’accent sur la recherche empirique (qualitative
et quantitative) le journal accepte des travaux théoriques et
méthodologiques, les articles de revues d’une longueur d’entre
8 000 à 10 000 mots ainsi que des messages courts et des lettres.
Nous donnons priorité aux articles concernant l’Afrique et des
pays en voie de développement et qui abordent des questions
d’ordre social sur le SIDA. Des éditions spéciales pourraient
aborder des sujets, des régions ou des pays particuliers. La
soumission de communications déjà présentées à la conférence
internationale bisannuelle de VIH/SIDA et de MST en Afrique
et aux conférences des Aspects Sociaux de l’Alliance de
Recherches du VIH/SIDA (SAHARA) bisannuelle est la
bienvenue.
Les auteurs sont priés de soumettre leur manuscrit original et
leurs données et deux photocopies et le texte sur disquette au
rédacteur en chef : Prof Karl Peltzer, Social Aspects of
HIV/AIDS and Health, Human Sciences Research Council,
Private Bag X9182, Cape Town 8000, South Africa. Les
manuscrits peuvent également être soumis par courrier
électronique.Veuillez créer un dossier (portant le nom de
l’auteur) pour tous les fichiers textes et chiffres et l’envoyer au
rédacteur en chef: [email protected].
Les communications soumises seront acceptées à condition
qu’elles sont originales et qu’elles ne seront pas publiées ailleurs
(tous les auteurs sont priés de mettre leur signature sur la
communication lors de la soumission) et que l’étude sur
laquelle la communication est basée a subit un examen moral
de recherche.
Toute communication pourrait être évaluée par le rédacteur en
chef ou par des membres du comité de rédaction afin de
s’assurer de son mérite avant d’être publier dans le Journal des
Aspects Sociaux du VIH/SIDA. Les communications déjà
acceptées pour la publication seront soumises à au moins deux
arbitres indépendants pour évaluation.
Veuillez fournir vos détails biographiques en environ 10 lignes
quand votre communication sera acceptée.
Préparation du manuscrit
Les instructions d’ordre général: Les manuscrits devront
être dactylographiés en double interligne avec des larges marges
sur une face de la page.Vous êtes prié de fournir des pages bien
imprimées avec la taille de caractères à 12 points. L’auteur doit
donner ses coordonnées (numéro de télécopie et l’adresse
électronique).Veuillez utiliser le style de référence du APA:
http://humanities.byu.edu/linguistics/
Henrichsen/APA/apa01.html
Le résumé et les mots clés: Préparez un résumé (sans soustitre) d’environ 300 mots et un maximum de six mots clés.
Le texte
Veuillez suivre l’ordre suivant lors de la dactylographie du
manuscrit :
• Sur la page de couverture : le nom de l’auteur, ses
affiliations, l’adresse postale complète, le numéro de
télécopie et l’adresse électronique, les noms et les affiliations
des coauteurs doivent être bien indiqués. Ces détails doivent
figurés uniquement sur la page de couverture et nul part
d’autre.
• Les références
• Les annexes
• Les légendes
• Les tableaux et des chiffres.Vous êtes prié de ne pas mettre
de chiffres ou de tableaux dans le texte principal ni en bas
de chaque page.Veuillez créer une liste séparée de
notes/renvois à la fin du texte.
Les références
Toute référence bibliographique ou source citée dans le texte
doit être présentée sur une liste de références à la fin du texte
manuscrit.A l’intérieur du texte, citez le nom de famille de
l’auteur (sans les initiales) et l’année de publication (par
exemple:‘Comme Shisana et Simbayi (2002) ont démontré
que ...’ ou ‘Cet argument correspond aux résultats obtenus
ultérieurement (Uys, 2002)’. En cas de 2 à 6 auteurs,
mentionnez-les tous à la première citation avec ‘&’ entre les
deux derniers. Dans le cas de plus de six auteurs, citez les six
premiers et utilisez ‘et al’ à la fin. Pour des citations qui suivent,
en cas de trois ou plus d’auteurs, utilisez ‘et al’ dans le texte. Les
références doivent être bien classées dans l’ordre alphabétique
de noms des auteurs.Veuillez vérifier si l’orthographe de noms
des auteurs et les dates cités dans le texte correspondent à la
liste de références.Vous êtes prié de présenter les références de
la manière suivant :
Shisana, O., & Simbayi, L. (2002). Nelson Mandela/HRSC study
of HIV/AIDS: South African national HIV prevalence, behavioural
risks and mass media household survey 2002. Cape Town: Human
Sciences Research Council Publishers. (full text:
www.sahara.org.za)
Hall, E., & Shisana, O. (2003).The impact of HIVAIDS on
health workers employed in the health sector. In O. Shisana, &
E. Hall (Ed.), The impact of HIV/AIDS on the health sector:
National survey of health personnel, ambulatory and hospitalised
patients and health facilities, 2002 (pp. 57-84). Cape Town: Human
Sciences Research Council Publishers. (full text:
www.sahara.org.za)
Streefland, P.H. (2003). Introduction of HIV vaccine in
developing countries: social and cultural dimensions. Vaccine,
21(13-14), 1303-1309.
183

Vol. 4 No. 1, April 2007 - Walter Sisulu University

Transcription

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