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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 VOL. 1 NO. 3 NOVEMBRE 2004 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). Journal des Aspects Sociaux du VIH/SIDA 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 Journal of Social Aspects of HIV/AIDS 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. VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL Preventing mother-to-child transmission: factors affecting mothers’ choice of feeding — a case study from Cameroon TABLE I. AGE OF MOTHERS AND CHOICE OF FEEDING Age Number < 18 29 (30%) 3 (11%) 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 Artificial milk Breastfeeding 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%) – – VOL. 1 NO. 3 NOVEMBRE 2004 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%) Journal des Aspects Sociaux du VIH/SIDA 135 ORIGINAL ARTICLE Preventing mother-to-child transmission: factors affecting mothers’ choice of feeding — a case study from Cameroon 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL Preventing mother-to-child transmission: factors affecting mothers’ choice of feeding — a case study from Cameroon 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 VOL. 1 NO. 3 NOVEMBRE 2004 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 Journal des Aspects Sociaux du VIH/SIDA 137 ORIGINAL ARTICLE Preventing mother-to-child transmission: factors affecting mothers’ choice of feeding — a case study from Cameroon 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 Journal of Social Aspects of HIV/AIDS 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. VOL. 1 NO. 3 NOVEMBER 2004 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] VOL. 1 NO. 3 NOVEMBRE 2004 Journal des Aspects Sociaux du VIH/SIDA 139 ORIGINAL ARTICLE L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 Journal of Social Aspects of HIV/AIDS 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, VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 VOL. 1 NO. 3 NOVEMBRE 2004 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 Journal des Aspects Sociaux du VIH/SIDA 141 ORIGINAL ARTICLE L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 Densité de la population au km2 16.4 22.5 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 Journal of Social Aspects of HIV/AIDS 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. VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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. VOL. 1 NO. 3 NOVEMBRE 2004 Journal des Aspects Sociaux du VIH/SIDA 143 ORIGINAL ARTICLE L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 Journal of Social Aspects of HIV/AIDS 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. VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 VOL. 1 NO. 3 NOVEMBRE 2004 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. Journal des Aspects Sociaux du VIH/SIDA 145 ORIGINAL ARTICLE L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 VOL. 1 NO. 3 NOVEMBRE 2004 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 Journal des Aspects Sociaux du VIH/SIDA 147 ORIGINAL ARTICLE L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 Journal of Social Aspects of HIV/AIDS 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). VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 VOL. 1 NO. 3 NOVEMBRE 2004 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 Journal des Aspects Sociaux du VIH/SIDA 149 ORIGINAL ARTICLE L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 VOL. 1 NO. 3 NOVEMBRE 2004 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 Journal des Aspects Sociaux du VIH/SIDA 151 ORIGINAL ARTICLE L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 VOL. 1 NO. 3 NOVEMBRE 2004 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. Journal des Aspects Sociaux du VIH/SIDA 153 ORIGINAL ARTICLE L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun 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 VOL. 1 NO. 3 NOVEMBRE 2004 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. RÉFÉRENCES BIBLIOGRAPHIQUES Akam, E & Arroga (1992). Analyse de l’enquête sur les connaissances, attitudes, pratiques et croyances relatives au SIDA dans les provinces du Nord-ouest et du Sudouest, (rapport d'étude),Yaoundé: IFORD. BUCREP (1998). Enquête démographique et de santé. Cameroun. EDS 98 (Bureau Central des Recensements et des Etudes de Population. Ministère des Investissements Publics et de l’aménagement du territoire). Calves, A. (1999). Condom use and risk perceptions among male and female adolescents in Cameroon. Qualitative evidence from Edéa. Paper presented at the annual meeting of Population Association of America held in New York. Cameroon Tribune, n° 4277du 02-12-1988 (déclaration du ministre de la Santé Publique MBEDE Joseph). CNLS (2000a). Rapport technique: enquête nationale sur la séroprévalence du VIH et Journal des Aspects Sociaux du VIH/SIDA 155 ORIGINAL ARTICLE L’ascenseur et l’escalier — la lutte contre le SIDA au Cameroun de la syphilis,Yaoundé: CNLS/GTC, Unité épidémiologique. CNLS (2000b). Plan stratégique de lutte contre le SIDA au Cameroun.Yaoundé : CNLS/GTC: Septembre. Mbarga, E. (1966). Quelques réflexions sur le projet de loi organisant l’état civil au Cameroun oriental et portant diverses dispositions relatives au mariage. Penant, 7-12: 285-307. CNLS (2001a). Programme multisectoriel de lutte contre le SIDA. Manuel d’exécution.Yaoundé. Mbella Mbappe, R. (1970). A propos de deux lois sur le mariage au Cameroun. Penant, 730: 410 -440. CNLS (2001b). Programme multisectoriel de lutte contre le VIH/SIDA. Manuel d'exécution des appuis aux communautés de base.Yaoundé : CNLS/GTC: (draft). Février. Mbembe, A. (2000). De la postcolonie. Essai sur l'imagination politique en Afrique contemporaine, Paris: Karthala. CNLS (2002). Mise en œuvre du processus participatif de lutte contre le VIH/SIDA par les communautés de base. Guide méthodologique de formation des formateurs. Yaoundé : CNLS/GTC. CNLS (2004). Stratégie de communication du Programme Nationale de Lutte contre le VIH/SIDA du Cameroun (doc. élaboré par J.-Ph.Tsala Tsala, Misse Misse & P. J. Bikanda).Yaoundé : CNLS/GTC: Eboko, F. (1999). Logiques et contradictions internationales dans le champ du Sida au Cameroun. Autre part, le sida des autres. Paris: Editions de l’Aube-IRD, 12: 123-140. Eboko, F. (2000). Risque -Sida, pouvoir et sexualité. La puissance de l’Etat en question au Cameroun (235-262). In G. Courade (dir.) Le désarroi camerounais. L’épreuve de l'économie monde. Paris: Karthala. Eboko, F. (2002). Pouvoirs, jeunesses et sida au Cameroun. Politique publique, dynamiques sociales et constructions des sujets.Thèse de science politique. IEPCEAN, Université de Bordeaux. Mburano Rwenge. (1998). Statut de la femme, comportements sexuels et SIDA en Afrique subsaharienne : le cas du Cameroun. Etude des populations africaines, II, 13: 7-21. MINCOF (2003). Stratégie sectorielle de promotion féminine.Yaoundé : Ministère de la Condition Féminine. MINCOF/PNUD (2001). Etude du milieu en vue de l'identification des problèmes de genre dans les zones pilotes (Adamaoua, Nord-Ouest, Ouest, Littoral). Etude réalisée par le Cabinet SEPCEP Consultants (J.-Ph.Tsala Tsala).Yaoundé: Ministère de la Condition Féminine. MINCOF/UNICEF (2002). Recueil de textes juridiques comportant des dispositions discriminatoires à l’égard des femmes.Yaoundé : Ministère de la Condition Féminine. MINEFI (2003). Document de Stratégie de Réduction de la Pauvreté (DSRP), Yaoundé: Ministère de l’Economie et des Finances. Minkoa She, A. (2002). SIDA. Le droit camerounais à l'épreuve. Les Cahiers de Mutations, 9: 6 (janvier). Njikam, S. (1998). Adolescents beliefs and perceptions toward sexuality (217-232), In: Defo Kuate (sous la direction de), Sexuality and Reproductive Health during Adolescence in Africa, (with special reference to Cameroon): Ottawa: University of Ottawa Press. Eboko, F. (2003). Institutionnaliser l’action publique en Afrique. Le cas de la lutte contre le sida au Cameroun (texte provisoire) http://www.cean.ubordeaux.fr/eboko.pdf Nkouenjin-Yotnda (1977). Du droit de boxer sa femme. Penant, 755: 5 - 9. Enquête Camerounaise sur les Ménages (ECAM II) (2002). Ministère de l’Economie et des finances/Direction de la statistique et de la Comptabilité nationale (MINEFI/DSCN).Yaoundé. Pinay, P, Hyda J, Siransy L et al. (1997) Lutte contre le risque résiduel de VIH par les produits sanguins au CNTS d’Abidjan. Xème Conférence Internationale sur le SIDA et les MST en Afrique, Abidjan, Côte d'Ivoire, 7-11 décembre. Enquête Démographique et de Santé du Cameroun (EDSC 1998). Ministère de l’Economie et des finances. Direction de la Statistique et de la Comptabilité nationale (MINEFI/DSCN).Yaoundé. Piot, P. (2001). Discours (extrait). Conférence Mondiale des Nations Unies contre le Racisme, la discrimination raciale, la xénophobie et l'intolérance. Durban du 31 août au 7 septembre 2001. FOCAP (1995). Etude des connaissances, attitudes et pratiques des filles mères de Yaoundé vis-à-vis du planning familial, (rapport d’étude),Yaoundé: FOCAP. Songue, B. (1993). SIDA et prostitution au Cameroun. Paris: L’Harmattan. Fotso, M., Ndonou, R., Libite, P.R., et al., (1999). Enquête Démographique et de Santé, Cameroun 1998. Calverton, Maryland, USA : Bureau Central des Recensements et des Etudes de Population et Macro International Inc. Garcia, C.J. et al. (1992). HIV Seroprevalence Study among Commercial Sexual Workers in Yaoundé and Douala. Rapport d’étude.Yaoundé, doc. ined GTZ/PSR/JA (2001). Statistiques du SIDA,Yaoundé. GTZ/PSR/JA, Mars 2001. Gruénais, M.-E. (1999). Organiser la lutte contre le Sida en Afrique. Une étude comparative Etat/société civile. Paris: ANRS-IRD. Gruénais, M.E. Delaunay, K., Eboko, F. & Gauvrit, E. (1999). Le sida en Afrique. Un objet politique ? Bulletin de l’APAD. Anthropologie de la santé, 17: 19-36. Houehougbe, A, Akam, E, Rafa U. H. (1990). Enquête sur les connaissances, attitudes, pratiques et croyances relatives au SIDA (provinces du Nord-ouest et du Sud-ouest), rapport d’étude préliminaire,Yaoundé. CNLS/ GTZ/IFORD, p. 89. IRESCO (1998). Le phénomène de la prostitution au Cameroun. Programme Régional SIDA en Afrique Occidentale et Centrale.Yaoundé: GTZ. IRESCO (1997). Etude des facteurs de résistance à l'acceptabilité des condoms dans les provinces septentrionales du Cameroun. (Rapport d’étude).Yaoundé. Kuate Defo (sous la direction de) (1998). Sexuality and Reproductive Health during adolescence in Africa, (with special reference to Cameroon). Ottawa: University of Ottawa Press. Salla Ntounga, R. (1993). Processus du deuxième plan à moyen terme de lutte contre le sida (1994-1998) en république du Cameroun. Bulletin de liaison de l’OCEAC, 26(4): 163. Tsala Tsala, J.-Ph. (1986). Du côté de la femme africaine. Mariage à double tour et ouvertures. Nouvelle Revue de Psychologie, 6/7: 175-193. Tsala Tsala, J.-Ph. (1989). Divorce et culpabilité chez la femme camerounaise. La médiation inachevée. Dialogue, Recherches Cliniques et Sociologiques sur le Couple et la Famille, 105: 111-123. Tsala Tsala, J.-Ph. (1990). La dot endettée ou la question du père. Problématique psychologique de la dot au Cameroun. Cahiers de sociologie économique et culturelle. Ethnopsychologie Revue Internationale, 14: 85-96. Tsala Tsala, J.-Ph. (1996). La mère camerounaise et son enfant drépanocytaire (167191), Cl. Herbaut & J-W.Wallet (sous la direction de), Des sociétés. Des enfants. Le regard sur l'enfant dans diverses cultures. Amiens: Licorne et Paris: L’Harmattan (‘Villes plurielles’). Tsala Tsala, J.-Ph. (2001). Medicina tradicional y sistema de salud publica en Camerun. Siso/Saude. 35: 48 -57. UNICEF, ONUSIDA, OMS (2001). Suivi et évaluation (au niveau local) de la prévention intégrée de la transmission mère-enfant du VIH dans les pays à revenus faibles.(doc ined. Projet 03/2001). Full text version of SAHARA J available online at www.sahara.org.za 156 Journal of Social Aspects of HIV/AIDS VOL. 1 NO. 3 NOVEMBER 2004 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] VOL. 1 NO. 3 NOVEMBRE 2004 Journal des Aspects Sociaux du VIH/SIDA 157 ORIGINAL ARTICLE 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL Stigma, discrimination and the implications for people living with HIV/AIDS in SA 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 VOL. 1 NO. 3 NOVEMBRE 2004 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 Journal des Aspects Sociaux du VIH/SIDA 159 ORIGINAL ARTICLE Stigma, discrimination and the implications for people living with HIV/AIDS in SA 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL Stigma, discrimination and the implications for people living with HIV/AIDS in SA 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 & VOL. 1 NO. 3 NOVEMBRE 2004 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. Journal des Aspects Sociaux du VIH/SIDA 161 ORIGINAL ARTICLE Stigma, discrimination and the implications for people living with HIV/AIDS in SA 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 Journal of Social Aspects of HIV/AIDS (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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL Stigma, discrimination and the implications for people living with HIV/AIDS in SA 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. References Abdool Karim, Q.,Tarantola, D., Sy, E. & Moodie, R. (1992). Government responses to HIV/AIDS in Africa:What have we learned. AIDS, 11(suppl. B), S143-S149. Aggleton, P., Hart, G. & Davies, P. (1989). AIDS: social representations, social practices. New York:The Falmer Press. Altenroxel, L. (2000, 5 July).Two epidemics at once. Star. Altenroxel, L. (2001, 6 February). Doctors test and tell about HIV. Star. Aranda-Naranjo, B. & Davis, R. (2000). Psychosocial and cultural considerations. In J. Anderson (Ed.), A guide to the clinical care of women with HIV (pp. 269-282). Washington: US Department of Health and Social Services. Baleta, A. (1999).Widespread horror over killing of AIDS activist in South Africa. Lancet, 353(9147), 130. Brown, L., Macintyre, K. & Trujillo, L. (2003). Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Education and Prevention, 15 (1), 49-69. Cabe, J. & Sorkin, B. (2002). Stigma, global health research explored. Available at http://www.nih.gov/news/NIH-Record/02_19_2002/story02.htm. Cheever, L. (2000). Adherence to HIV therapies. In J. Anderson (Ed.), A guide to the clinical care of women with HIV (pp. 139-148).Washington: US Department of Health and Social Services. Crawrod, I., Allison, K., Robinson,W., Hughes, D. & Samaryk, M. (1992). Attitudes of African American Baptist ministers toward AIDS. Journal of Community Psychology, 20(4), 304-308. Crewe, M. (1992). AIDS in South Africa:The myth and the reality. London: Penguin. Das,V. (2002). Stigma, contagion, defect: Issues in the anthropology of public health. Available at http://www.stigmaconference.nih.gov/DasPaper.htm. VOL. 1 NO. 3 NOVEMBRE 2004 Deacon, H., Prosalendis, S. & Stephney, I. (2004). Understanding AIDS stigma in social and historical context: A literature review. Paper presented at 2nd African Conference on Social Aspects of HIV/AIDS Research Alliance, 9-14 May, Cape Town. Department of Health (2001). South African national guidelines on nutrition for people living with TB, HIV/AIDS and other chronic debilitating conditions. Pretoria: Department of Health. Douglas, M. (1995). Risk and blame: Essays in cultural theory. London: Routledge. Erwin, J. & Peters, B. (1999).Treatment issues for HIV+ Africans in London. Social Science and Medicine, 49(11), 1519-1528. Feinberg, J. & Maenza, J. (2000). Primary medical care. In J. Anderson (Ed.) A guide to the clinical care of women with HIV (pp. 79-138).Washington: US Department of Health and Social Services. Foster, D. (1991). On racism:Virulent mythologies and fragile threads. Inaugural professorial lecture, University of Cape Town. Gilmore, N. & Somerville, M. (1994). Stigmatisation, scapegoating and discrimination in sexually transmitted diseases: Overcoming ‘them’ and ‘us’. Social Science and Medicine, 39(9), 1359-1366. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. England: Penguin. Golden, C. (1994). Stigmatisation and AIDS: Critical issues in public health. Social Science and Medicine, 39(9), 1359-1366. Gollub, E. (1999). Human rights is a US problem too:The case of women and HIV. American Journal of Public Health, 89(10), 1479-1482. Gosling, M. (2000, 20 June). Bad turnout for positive providers and prejudice. Cape Times p.3. Grange, J., Story, A. & Zumla, A. (2001) Tuberculosis in disadvantaged groups. Current Opinion in Pulmonary Medicine, 7(3), 160-164. Grundlingh, L. (1999). HIV/AIDS in South Africa: A case of failed responses because of stigmatization, discrimination and morality, 1983-1994. New Contree, 46, 55-81. Hansen, H. & Groce, N. (2001). From quarantine to condoms: Shifting policies and problems of HIV control in Cuba. Medical Anthropology, 19(3), 259-292. Hospers, H. & Blom, C. (1998). HIV prevention for gay men in the Netherlands, 1983 - 93. In T. Sandfort (Ed.), The Dutch response to HIV: Pragmatism and consensus (pp. 40-60). London: UCL Press. Isaacs, G. (1993). Human sexuality and living with HIV infection. AIDS Bulletin, 2(2), 15-16. Johnson, S. (1995). Model of factors related to tendencies to discriminate against people with AIDS. Psychological Reports, 76(2), 563-572. Kalichman, S. (2004). AIDS stigmas as barriers to HIV prevention, diagnosis and care. Paper presented at 2nd African Conference on Social Aspects of HIV/AIDS Research Alliance, 9-14 May, Cape Town. Kok, G., Kolker, L., de Vroome, E. & Dijker, A. (1998). ‘Safe sex’ and ‘Compassion’: Public campaigns on AIDS in the Netherlands. In T. Sandfort (Ed.), The Dutch response to HIV: Pragmatism and consensus (pp. 19-39). London: UCL Press. Kortjaas, B. & Msomi, S. (1998). Mob kills woman for telling truth. Sunday Times, Available at www.sundaytimes.co.za. Krautkramer, R. (2000, 3 May). Can doctors refuse to treat HIV patients. Cape Times. Leclerc-Madlala, S. (1997). Infect one, infect all. Zulu youth response to the AIDS epidemic in South Africa. Medical Anthropology, 17(4), 363-380. Leclerc-Madlala, S. (2002).Youth, HIV/AIDS, youth and the importance of sexual culture and context. Social Dynamics, 28 (1), 20-41. Lee, R., Kochman, A. & Sikkema, K. (2002). Internalised stigma among people living with HIV-AIDS. Aids and Behaviour, 6 (4), 309-319. Lie, G. & Biswalo, P. (1994). Perceptions of the appropriate HIV/AIDS counsellor in Arusha and Kilimanjaro regions of Tanzania: Implications for hospital counselling. AIDS Care, 6(2), 139-151. Link, B. & Phelan, J. (2002). On stigma and its public health implications. Available at http://www.stigmaconference.nih.gov/LinkPaper.htm. Maman, S., Mbwambo, J., Hogan, M., Kilonza, G., Sweat, M. & Weiss, E. (2001). HIV and partner violence: Implications for HIV Voluntary Counselling and Testing Programmes in Dar es Salaam,Tanzania. New York: Population Council. Mathews, C., Kuhn, L., Metcalf, C., Joubert, G. & Cameron, N. (1990). Knowledge, attitudes and beliefs about AIDS in township school students in Cape Town. South African Medical Journal, 78, 511-516. Mbambato, S. & Huisman, B. (2004, 18 January).Township mourns activist attacked and killed for revealing her HIV status. Sunday Times. Available at www.sundaytimes.co.za/2004/01/18/news/cape/nct01/asp Miller, K. & Mastrantonis, H. (1992). AIDS in the workplace:White collar employees' perceptions. Paper presented at the 10th Annual Congress of the Psychological Association of South Africa, Stellenbosch. Ngqalaza, B. (2000a, 9 May). Lawyers criticise SAA hiring. Business Day. Ngqalaza, B. (2000b, 8 May). Soldiers fear virus more than bullets. Business Day. Journal des Aspects Sociaux du VIH/SIDA 163 ORIGINAL ARTICLE Stigma, discrimination and the implications for people living with HIV/AIDS in SA Nicodemus, A. (1999, May 7). Africa stigmatises HIV positive. Mail and Guardian. Available at www.mg.co.za. Panos Institute (1990). The third epidemic: Repercussions of the fear of AIDS. London: Panos. Parker, R., Aggleton, P., Attawell, K., Pulerwits, J. & Brown,L. (2002). HIV/AIDSrelated stigma and discrimination: A conceptual framework and an agenda for action. Washington: Horizons Report, Horizons Project. Paterson, G. (1996). Women in the time of AIDS. New York: Orbis Books. Rusnak, M. (1998). Article from today’s New York. Health Net Medical Discussions. Available at http://www.healthnet.sk/discussion/messages/11.html Sontag, S. (1988). AIDS ands its metaphors. London: Penguin Press. Sowell, R., Seals, B., Moneyham, L., Demi, A., Cohen, L. & Brake, S. (1997). Quality of life in HIV infected women in the south eastern United States. AIDS Care, 9(5), 501-512. Strebel, A. (1993). Women and AIDS: A study of issues in the prevention of HIV infection. Unpublished PhD thesis, University of Cape Town. Strebel, A. & Perkel, A. (1991). ‘Not Our Problem’: AIDS knowledge, attitudes, practices and psychological factors at UWC. Psychology Resource Centre Occasional Papers Series No 4. Bellville: University of the Western Cape. Streak, B. (2001a, 2 November). HIV positive kids must go to school. Cape Argus. Regional Consultation Report (2001). Stigma and HIV/AIDS in Africa: Setting the operational research agenda. Available at http://[email protected]/home2.htm. Streak, B. (2001b, 26 October - 1 November) They don't love you like before. Mail and Guardian. Rehm, R. & Franck, L. (2000). Long-term goals and normalisation strategies of children and families affected by HIV/AIDS. Advances in Nursing Science, 23(1), 69-82. Taitz, L. (2000, 23 January). A dingy start to another dingy AIDS initiative. Sunday Times. Ross, F. & Levine, S. (2002). Perceptions of and attitudes to HIV/AIDS among young adults at UCT. CSSR Working Paper, No. 11, Cape Town. Sabatier, R. (1988). Blaming others: Prejudice, race and world-wide AIDS. London: Panos. Treatment Action Campaign (TAC) (2000). Mourn Mpho Motloung! Change HIV/AIDS messages to show hope now! False message increase violence against women. Available at http://www.tac.org.za. Sapa (2002, 13 June). Nursery schools that refused HIV child in court today. Cape Times. van der Vliet,V. (1996). The politics of AIDS. London: Bowerdean. Schellenberg, E., Keil, J. & Bem, S. (1995). ‘Innocent victims’ of AIDS: Identifying the subtext. Journal of Applied Social Psychology, 25(20), 1790-1800. Viol, J. (2000, 17 July). Prejudiced employers paying off HIV positive workers. Cape Argus. Scheper-Hughes, N. (1993). AIDS, public health and human rights in Cuba. Lancet, 342(8877), 965-967. Walpin, L. (1997). Combating heterosexism: Implications for nursing. Clinical Nurse Specialist, 11(3), 126-132. Schönteich, M. (2002, April). A generation at risk: AIDS orphans, vulnerable children and human security in Africa. Paper presented at the AIDS and Democracy in Southern Africa: Setting the Research Agenda Workshop. Cape Town. Wiener, L., Battles, H., Heilman, N., Sigelman, C. & Pizzo, P. (1996). Factors associated with disclosure of diagnosis to children with HIV/AIDS. Pediatric AIDS and HIV Infection, 7(5), 310-324. Shefer,T. (1999). Discourses of heterosexual subjectivity and negotiation. Unpublished PhD thesis, University of the Western Cape. Shilts, R. (1987). And the band played on. London: Penguin Press. Wojcicki, J. & Malala, J. (2001). Condom use, power and HIV/AIDS risk: Sexworkers bargain for survival in Hillbrow/ Joubert Park/Berea, Johannesburg. Social Science and Medicine, 53(1), 99-121. Skinner, D. (2001). How do the youth in two communities make decisions about using condoms? CSSR Working Paper No. 2, University of Cape Town. Yoshika, M. & Schustack, A. (2001). Disclosure and HIV status: Cultural issues of Asian patients. AIDS Patients Care and STDs, 15(2), 77-82. Smetheram, J. (2001, 21 November). Soaring AIDS death rate is softening blows of prejudice. Cape Times. Zierler, S. & Krieger, N. (1997). Reframing women’s risk: Social inequalities and HIV infection. Annual Review of Public Health, 18, 401-436. Trengrove-Jones,T. (2001, 7 September). AIDS thrives on racism. Sowetan. Full text version of SAHARA J available online at www.sahara.org.za 164 Journal of Social Aspects of HIV/AIDS VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL 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]. VOL. 1 NO. 3 NOVEMBRE 2004 Journal des Aspects Sociaux du VIH/SIDA 165 ORIGINAL ARTICLE Managing AIDS stigma 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), 166 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL Managing AIDS stigma 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 VOL. 1 NO. 3 NOVEMBRE 2004 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 Journal des Aspects Sociaux du VIH/SIDA 167 ORIGINAL ARTICLE Managing AIDS stigma 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. 168 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL Managing AIDS stigma 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 VOL. 1 NO. 3 NOVEMBRE 2004 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. Journal des Aspects Sociaux du VIH/SIDA 169 ORIGINAL ARTICLE Managing AIDS stigma 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 Journal of Social Aspects of HIV/AIDS 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, VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL Managing AIDS stigma 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 VOL. 1 NO. 3 NOVEMBRE 2004 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 Journal des Aspects Sociaux du VIH/SIDA 171 ORIGINAL ARTICLE Managing AIDS stigma 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 ARTICLE ORIGINAL Managing AIDS stigma 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. References Adebajo, S.B., Bamgbala, A.O. & Oyediran, M.A. (2003). Attitudes of health care providers to persons living with HIV/AIDS in Lagos State, Nigeria. African Journal of Reproductive Health, 7(1), 103-112. Adelekan, M.L., Jolayemi, S.O., Ndom, R.J. et al. (1995). Caring for people with AIDS in a Nigerian teaching hospital: staff attitudes and knowledge. AIDS Care, 7 (Suppl. 1), S63-S72. African Development Forum (2000). AIDS in Africa country by country. Geneva: Joint United Nations Programme on HIV/AIDS. Aggleton, P. (2000). Comparative analysis: research studies from India and Uganda. Geneva: Joint United Nations Programme on HIV/AIDS. Aggleton, P. & Parker, R. (2002). A conceptual framework and basis for action: HIV/AIDS stigma and discrimination. Geneva: Joint United Nations Programme on HIV/AIDS. AIDS Alert (2002). AIDS stigma forms an insidious barrier to prevention/care. HIV experts describe problem in India. Sept, 17(9), 111-113. Alonzo, A.A. & Reynolds, N.R. (1995). Stigma, HIV and AIDS: an exploration and elaboration of a stigma trajectory. Social Science and Medicine, 41(3), 303-315. Ayarza, R. & Reyes, B. (2002). Changes in quality of life of people living with HIV/AIDS in Ecuador. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain. Abstract Number:WePeE6460. Bauman, L.J., Silver, E.J. & Camacho, S. (2000). Stigma among mothers with HIV/AIDS. Abstract, XIII International AIDS Conference, July 9-14, Durban, South Africa. Abstract Number: MoPeD2578. VOL. 1 NO. 3 NOVEMBRE 2004 Berger, B.E., Ferrans, C.E. & Lashley, F.R. (2001). Measuring stigma in people with HIV: psychometric assessment of the HIV stigma scale. Research in Nursing and Health, 24(6), 518-529. Brito, C. (2004). National songs contest: A channel to target stigma and discrimination. Abstract, XV International AIDS Conference, July 11-15, Bangkok,Thailand. Abstract Number: MoPeD3931. Brown, K.L., Schultz, J.R., Forsberg, A.D. et al. (2002). Predictors of retention among HIV/hemophilia health care professionals. General Hospital Psychiatry, 24(1), 48-54. Brown, L.,Trujillo, L. & Macintyre, K. (2001). Interventions to reduce HIV/AIDS stigma: What have we learned? Washington, D.C.: Population Council. Buhendwa, L.M., Zachariah, R. & Labana, S. (2002). Role of communities in care and support to people living with AIDS in Thyolo, Malawi. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain. Abstract Number:TuOrF1254. Bunting, S.M. (1996). Sources of stigma association with women with HIV. Advances in Nursing Science, 19(2), 64-73. Canadian HIV/AIDS Legal Network (1998). HIV/AIDS and Discrimination: A Discussion Paper. Ottawa: Canadian HIV/AIDS Legal Network and the Canadian AIDS Society. Carneiro-da-Cunha, C., Kerrigan, D., Malta, M., Fortuna, M., Strathdee, S. & Bastos, F. (2002). Assessing and improving adherence to highly active anti-retroviral therapy among socially disadvantaged persons living with HIV/AIDS in Rio de Janeiro, Brazil. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain. Abstract Number: WeOr1367. Castle, C.J., Cornu, C., Dua, R., Herrera, D., Nadkarni,V., Ouédraogo, A., & Velasco, N. (2002). Meaningful involvement of people living with HIV/AIDS: positive and negative effects of involvement in community-based programs. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain. Abstract Number:WeOrG1292. Chakrapani,V., Govindan, J., Joseph, M. & Balasubramaniam, S. (2002). Establishing an STD clinic for men who have sex with men (MSM): experiences of an Indian communitymanaged organization. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain. Abstract Number: F11847. Cornu, C. & Dhaliwal, M. (2002). Linking HIV and TB services — a strategy for improving the quality of life of PLHA. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain. Abstract Number:TuPeG5646. Corrigan, P.W., Bodenhausen, G., Markowitz, F. et al. (2003). Demonstrating translational research for mental health services: an example from stigma research. Mental Health Services Research, 5(2), 79-88. De Bruyn, M. (1999). Intersecting health risks: adolescent unwanted pregnancy, unsafe abortion, and AIDS. Initiatives in Reproductive Health Policy, 3(1), 4-5. Donini, A.A.,Tunala, L.G., Castanheira, E.R.L., Melchior, R., Basso, C.R. & Britto e Alves, M.T.S. (2002). Quality of care in HIV/AIDS health services in Brazil: a focus group approach. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain. Abstract Number: B10642. Journal des Aspects Sociaux du VIH/SIDA 173 ORIGINAL ARTICLE Managing AIDS stigma EngenderHealth (2004). Reducing stigma and discrimination related to HIV and AIDS. Training for health care workers. Retrieved September 17, 2004, from http://www.engenderhealth.org/res/offc/hiv/stigma/index.html#stigma Fido,A. & Kazemi, R.A. (2002). Survey of HIV/AIDS knowledge and attitudes of Kuwaiti family physicians. Family Practice, 19(6), 682-684. Monico, S.M.,Tanga, E.O. & Nuwagaba,A. (2001). Uganda: HIV and AIDS-related discrimination, stigmatisation and denial. Geneva: Joint United Nations Programme on HIV/AIDS. Fife, B.L. & Wright, E.R. (2000).The dimensionality of stigma: a comparison of its impact on the self of persons with HIV/AIDS and cancer. Journal of Health Social Behavior, 41(1), 50-67. Mungherera, M., van der Straten,A., Hall,T.L., et al. (1997). HIV/AIDS-related attitudes and practices of hospital-based health workers in Kampala, Uganda. AIDS, 11(Suppl. 1), S79-S85. Garda, L.F., Rao,V.N., Bopardekar,A. & Rout, P.B. (2002). A self-help group of HIV-infected or affected women-a care and support initiative in rural India.Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number:WePeF6639. Munhenga,A., Chiwara, S., Jena, S. et al. (2002). Challenges encountered during a clinical trial to prevent mother to child transmission (MTCT) of HIV in urban Zimbabwe: a nurse's perspective. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: F11961. Goffman, E. (1963). Stigma: notes on the management of spoiled identity. Englewood Cliffs, N.J.: Prentice Hall. Green, K.E., Chum, C., Moth, S.K., Suon, B.H. & Ma, S.S. (2002). Home care along the Cambodian-Thai boarder: challenges and successes in delivering quality care to mobile people living with HIV and AIDS.Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain. Harvey, R.D. (2001). Individual differences in the phenomenological impact of social stigma. Journal of Social Psychology, 141(2), 174-189. Mutissa,T. & Lingani,T.V. (2002). A home based care strategy to take care of people living with HIV/AIDS in the community. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: MoPeF4139. Newman, P.A., Grusky, O., Roberts, S.J. & Rivkin, I. (2002). Organizational factors in the early detection of HIV. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number:TuPeE5146. Herek, G.M. & Capitanio, J.P. (1993). Public reactions to AIDS in the United States: a second decade of stigma. American Journal of Public Health, 83(4), 574-577. Nwando, O.& Enuga, O. (2004). Reducing stigma and preventing HIV transmission in Nigerian health facilities. Abstract, XV International AIDS Conference, July 11-15, Bangkok,Thailand.Abstract Number: MoOrE1077. Herek, G.M, Capitanio, J.P. & Widaman, K.F. (2002). HIV-related stigma and knowledge in the United States: prevalence and trends, 1991-1999. American Journal of Public Health, 92(3), 371-377. Nyblade, L. (2003). Disentangling HIV and AIDS Stigma. Overview of findings from a two year study in Ethiopia,Tanzania, and Zambia. Retrieved November 10, 2004, from www.icrw.org/docs/stigmaintro.pdf Herek, G.M, Mitnick, L., Burris, S., Chesney, M., Devine, P., Fullilove, M.T., et al. (1998). Workshop report:AIDS and stigma:A conceptual framework and research agenda.AIDS & Public Policy Journal, 13(1), 36-47. O'Keeffe, C.M. & Frankham, J. (2002). HIV positive health care professionals in Uganda: an examination of contributions made to HIV/AIDS and the needs of positive workers for support. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number:ThPeG8299. Horsman, J.M. & Sheeran, P. (1995). Health care workers and HIV/AIDS: a critical review of the literature. Social Sciences and Medicine, 41(11), 1535-1567. Hossini, C.H.,Tripodi, D., Rahhali,A.E. et al. (2000). Knowledge and attitudes of health care professionals with respect to AIDS and the risk of occupational transmission of HIV in 2 Moroccan hospitals. Sante, 10(5), 315-321. Insideout Research (2003). Siyam’kela: A report of the fieldwork leading to the development of HIV/AIDS stigma indicators and guidelines. A research report. Retrieved November 10, 2004, from www.policyproject.com/pubs/countryreports/ SA_Siyam_fieldwork.pdf Integrated Regional Information Networks (IRIN) (2002). Angola:AIDS stigma pervasive. Luanda, 3 July 2002 (IRIN). UN Office for the Coordination of Humanitarian Affairs. Retrieved November 10, 2004, from www.irinnews.org/ report.asp? ReportID=28626&SelectRegion=Southern_Africa&SelectCountry=ANGOLA Jillings, C. & Alexus, L. (1991).The concept of stigma: timely, relevant, and possibly uncomfortable. Critical Care Nurse, 11(1), 62-64. Kaiser Family Foundation (2004). HIV/AIDS Policy Fact Sheet: HIV Testing in the United States. Retrieved November 10, 2004, from www.kff.org/ hivaids/ loader.cfm?url=/commonspot/security/getfile.cfm&PageID=37467 Olivier, C. & Dykeman, M. (2003). Challenges to HIV service provision: the commonalities for nurses and social workers. AIDS Care, 15(5), 649-663. Omondi,A.L.,Auka, E.G., Kimanzi, J.K. & Mangira, C.O. (2002). The impact on community-based HIV/AIDS counselors in HIV/AIDS prevention programs. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: WePeD6290. Orlando, G., Guaraldi, G., Murri, R. et al. (2002). Does lipodystrophy affect quality of life? Abstract. XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number:ThPeB7340. Ortega, N.L., Gonzales, G. & Liwanag, M. (2002). Greater involvement of people living with HIV and AIDS: key to successful AIDS program.Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number:WeOrG1296. Parker, R. & Aggleton, P. (2002). HIV/AIDS-related stigma and discrimination: a conceptual framework and an agenda for action. Washington, D.C.: Population Council. Sandelowski, M., Lambe, C., & Barroso, J. (2004). Sigma in HIV-positive women. Journal of Nursing Scholarship, 36(2), 122-128. Kidd, R. & Clay, S. (2003). Understanding and challenging HIV stigma.Toolkit for action. New York: CHANGE project (AED) International Center for Research on Women. Retrieved September 17, 2004, from http://www.changeproject.org/technical/ hivaids/stigma.html Schimmer, B. (2002). HIV/AIDS and human rights: youth in action.Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: C10796. Kiguli, K.A.R., Batusa, R.J., Mayanja, J. & Ssebikejje, R. (2002). Religious NGOs involvement to enhance HIV prevention and AIDS care. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: MoPeE3765. Sowell, R.L., Lowenstein,A., Moneyham, L., Demi,A., Mizuno,Y. & Seals, B.F. (1997). Resources, stigma, and patterns of disclosure in rural women with HIV infection. Public Health Nursing, 14(5), 302-312. Kline, N.E., Ferris, M.G, Zengwa, S. et al. (2002). Implementation of a comprehensive HIV/AIDS nursing curriculum in Southern Africa.Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: MoPeF4121. Unger,A.,Welz,T. & Haran, D. (2002). The impact of HIV/AIDS on health care staff at a rural South African Hospital, 1995-2000.Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: MoPeE3762. Kumbi, S., Bedri,A.,Abashawl,A., Isehak,A., Coberly, J.S. & Ruff,A.J. (2002). Reasons for refusal of HIV testing in two Ethiopian antenatal clinics. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number:TuPeD4970. Uys, L.R. (2000). Confidentiality and HIV/AIDS in South Africa. Nursing Ethics, 7(2), 158-166. Lalloo, U.G., Pawinski, R.A., Bobat, R. et al. (2002). A comprehensive HIV/AIDS training course to meet the needs of public sector health care workers in the province of KwaZulu Natal (KZN), South Africa.Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: MoPeB3234. Link, B.G. & Phelan, J.C. (2001). On stigma and its public health implications. Retrieved February 21, 2003, from www.stigmaconference.nih.gov/LinkPaper.htm. South Africa Development Community AIDS Network of Nurses and Midwives (August 2000). Minutes from planning meetings. Pretoria, South Africa. Uys, L.R. (2003). Combating HIV/AIDS stigma,A manual for nurses. Pretoria: SANNAM. http://www.go2itech.com Vlassoff, C.,Weiss, M., Ovuga, E.B. et al. (2000). Gender and the stigma of onchocercal skin disease in Africa. Social Sciences and Medicine, 50(10), 1353-1368. Walusimibi, M., Okonsky, J., Colagreco, J.P., Kirton, C. & Fitzpatrick, J.J. (2002). Nursing in Uganda in the realm of HIV/AIDS. Applied Nursing Research, 15(3), 194-195. Madru, N. (2003). Stigma and HIV: Does the social response affect the natural course of the epidemic? Journal of the Association of Nurses in AIDS Care, 14(5), 39-48. Weiss, M.G., Doongaji, D.R., Siddhartha, S. et al. (1992).The Explanatory Model Interview Catalogue (EMIC). Contribution to cross-cultural research methods from a study of leprosy and mental health. British Journal of Psychiatry, 160, 819-830. Martearena, C.R. & Celentano,A. (2002). Burnout and AIDS: a dilemma in mental health. Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: MoPeE3764. Weiss, M.G. & Ramakrishna, J. (2001). Stigma interventions and research for international health. Retrieved February 21, 2003, from http://www.stigmaconference.nih.gov Mashimo,A., Miura, H., Sakano, S. et al. (2001).The role of AIDS volunteers in developing community-based care for people with AIDS in Thailand. Asian Pacific Journal of Public Health, 13(1), 3-8. Mbanya, D.N.S., Pollaa, E.D. & Kaptue, L.N. (2002). Prevalence of HIV-1 among health personnel in semi-urban and urban populations of Yaounde, Cameroon. Abstract, XIV 174 International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number: MoPeC3518. Journal of Social Aspects of HIV/AIDS Wiley, K., Heath, L.,Acklin, M., Earl,A. & Barnard, B. (1990). Care of HIV-infected patients: nurses' concerns, opinions, and precautions. Applied Nursing Research, 3(1), 27-33. Zengwa, S., Msiska, G.M. & Anderson, S.( 2002). Networking for the advancement of nursing and midwifery in HIV/AIDS prevention, care, and support.Abstract, XIV International AIDS Conference, July 7-12, Barcelona, Spain.Abstract Number WePeF6782. VOL. 1 NO. 3 NOVEMBER 2004 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]. VOL. 1 NO. 3 NOVEMBRE 2004 Journal des Aspects Sociaux du VIH/SIDA 175 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 Journal of Social Aspects of HIV/AIDS 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. VOL. 1 NO. 3 NOVEMBER 2004 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 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 VOL. 1 NO. 3 NOVEMBRE 2004 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. Journal des Aspects Sociaux du VIH/SIDA 177 CONFERENCE REPORT 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 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 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 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 VOL. 1 NO. 3 NOVEMBRE 2004 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 Journal des Aspects Sociaux du VIH/SIDA 179 CONFERENCE REPORT 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 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 Journal of Social Aspects of HIV/AIDS 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 VOL. 1 NO. 3 NOVEMBER 2004 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 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. VOL. 1 NO. 3 NOVEMBRE 2004 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. References Aloyo, S. (2002).VCT and the voice of adolescents. The Meaning and Challenge of VCT for Counsellors. Report of KAPC 3rd Counselling Conference (pp. 100-4). Nairobi: KAPC. Balmer, D.H., Grinstead, O.A., Kihuho, F., Gregorich, S.E., Sweat, M.D., Kamenga, M.C., et al. (2000). Characteristics of individuals and couples seeking HIV-1 prevention services in Nairobi, Kenya:The Voluntary HIV-1 Counselling and Testing Efficacy Study. AIDS and Behavior, 4(1), 15-23. Carkhuff, R.B. (1969). Helping and human relations.Vol 1: selection and training. New York: Holt Rinehardt & Winston. De Cock, K.M. (2002). Key Note Address. The Meaning and Challenge of VCT for Counsellors. Report of KAPC 3rd Counselling Conference (pp. 5-9). Nairobi: KAPC. De Cock, K.M., Mbori-Ngacha, D. & Marum, E. (2002). Shadow on the continent: public health and HIV/AIDS in Africa in the 21st century. Lancet, 360, 76-72. Ginwalla, S.K., Grant, A.D., Day, J.H., Dlova,T.W., Macintrye, S., Baggaley, R. & Churchyard, G.J. (2002). Use of UNAIDS tools to evaluate HIV voluntary counselling and testing services for mineworkers in South Africa. AIDS Care, 14(5), 707-726. Kampira, D. (2002).Voluntary counselling and testing: the Malawi experience. The Meaning and Challenge of VCT for Counsellors. Report of KAPC 3rd Counselling Conference (pp. 30-33). Nairobi: KAPC. Kipp,W., Kabagambe, G. & Konde-Lule, J. (2002). HIV counselling and testing in rural Uganda: communties’ attitudes and perceptions towards an HIV counselling and testing programme. AIDS Care, 14(5), 699-706. Ministry of Health (2001). AIDS in Kenya: background. Nairobi: Ministry of Health. Mokgohloa, J. (2002).Voluntary Counselling and Testing in PMTCT Sites. The Meaning and Challenge of VCT for Counsellors. Report of KAPC 3rd Counselling Conference (pp. 155-156). Nairobi: KAPC. NASCOP (2002). Kenya National Manual for Training VCT Counsellors National AIDS and STD Control Programme (NASCOP). Nairobi: Ministry of Health. Nyanzi, B. (2002). Uptake of VCT enhanced by home delivery in rural S.W. Uganda. 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. Journal des Aspects Sociaux du VIH/SIDA 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 Journal of Social Aspects of HIV/AIDS 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. VOL. 1 NO. 3 NOVEMBER 2004 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 VOL. 1 NO. 3 NOVEMBRE 2004 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. 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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. Journal des Aspects Sociaux du VIH/SIDA 183