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Challenges to ART scale-up in a rural district in Tanzania: stigma and distrust among Tanzanian health care workers, people living with HIV and community members

2010; Wiley; Linguagem: Inglês

10.1111/j.1365-3156.2010.02587.x

1365-3156

Abela Mpobela Agnarson, Honorati Masanja, Anna Mia Ekström, Jaran Eriksen, Göran Tomson, Anna Thorson,

Adolescent Sexual and Reproductive Health

Objective To explore attitudes, perceptions and practices among health care workers, antiretroviral treatment (ART) patients and community members regarding ART care and the social consequences of ART roll-out in rural Tanzania. Methods We performed focus group discussions and in-depth interviews with health care workers, community members, ART patients, religious leaders, as well as social workers. Field observations and ethnographic assessments were conducted in parallel. Results We found widespread negative attitudes and perceptions of ART care HIV testing and the ART programme, a lack of trust in its sustainability, as well as lack of community and health worker involvement in the programme planning and treatment. HIV-positive individuals on ART reported risky behaviours with the aim of revenge and were feared by community members. We also found that the ART availability was seen as an incentive to engage in HIV testing among some community members. Conclusion Our findings underline the importance of involving health workers and the community at a high level and their important role in promoting trust in the ART programme. There is an immense need to adjust interventions focusing on stigma reduction in the direction of ART scale-up and to build awareness among ART patients so they understand how risky behaviours affect their personal well-being and the community at large. Les défis du déploiement de l’ART-up dans un district rural en Tanzanie: stigmatisation et méfiance chez les agents de la santé tanzaniens, les personnes vivant avec le VIH et les membres de la communauté Objectif: Explorer les attitudes, perceptions et pratiques chez les agents de la santé, les patients sous ART et les membres de la communauté concernant les soins ART et les conséquences sociales du déploiement de l’ART dans les régions rurales de la Tanzanie. Méthodes: Nous avons effectué des discussions de groupes focalisées et des interviews détaillées avec les agents des soins de santé, les membres de la communauté, les patients sous ART, les responsables religieux, ainsi que les travailleurs sociaux. Des observations de terrain et des évaluations ethnographiques ont été menées en parallèle. Résultats: Nous avons trouvé des attitudes et perceptions négatives généralisées vis à vis des soins ART, du test VIH et du programme ART, un manque de confiance dans sa pérennité, ainsi que l’absence de la participation de la communauté et des agents de la santé dans la planification du programme et du traitement. Les individus VIH-positif sous ART ont rapporté des comportements à risque dans le but de vengeance et étaient craints des membres de la communauté. Nous avons également constaté que la disponibilité de l’ART était perçue chez certains membres de la communauté comme une incitation à participer au dépistage du VIH Conclusion: Nos résultats soulignent l’importance d’impliquer les agents de la santé et la communautéà un niveau élevé et leur rôle important dans la promotion de la confiance dans le programme ART. Il ya un immense besoin d’ajuster les interventions axées sur la réduction de la stigmatisation dans la direction du déploiement de l’ART et à sensibiliser les patients sous ART afin qu’ils comprennent comment les comportements à risque affectent leur bien-être personnel et la communauté au sens large. Retos para aumentar la escala del TAR en un distrito rural en Tanzania: estigma y desconfianza entre los trabajadores sanitarios tanzanos, personas viviendo con VIH y miembros de la comunidad Objetivo: Explorar las actitudes, percepciones y prácticas entre los trabajadores sanitarios, los pacientes en TAR y los miembros de la comunidad, con respecto al TAR y las consecuencias sociales de desplegar el TAR en zonas rurales de Tanzania. Métodos: Se organizaron grupos de discusión focalizada y se realizaron entrevistas en profundidad a trabajadores sanitarios, miembros de la comunidad, pacientes recibiendo TAR, líderes religiosos, y trabajadores sociales. En paralelo, se realizaron observaciones de campo y evaluaciones etnográficas. Resultados: Encontramos actitudes y percepciones negativas generalizadas con respecto a la atención recibida en el TAR y en el testaje de VIH, así como con respecto al programa de TAR en general, falta de confianza sobre su sostenibilidad, así como falta participación de la comunidad y de los trabajadores sanitarios en la planeación del programa y del tratamiento. Los individuos VIH positivos recibiendo TAR reportaron conductas de riesgo por venganza, y eran temidos por los miembros de la comunidad. También observamos que la disponibilidad del TAR estaba vista, por algunos miembros de la comunidad, como un incentivo para que se realizasen la prueba del VIH. Conclusión: Nuestros hallazgos subrayan la importancia de involucrar activamente a los trabajadores sanitarios y a la comunidad, siendo crucial su rol en la promoción de confianza en el programa de TAR. Hay una necesidad inmensa de ajustar las intervenciones, enfocándose en la reducción del estigma para llevar el TAR a gran escala, así como de que los pacientes en TAR entiendan como los comportamientos de riesgo pueden afectar su bienestar personal y el de la comunidad en general. Thus far, 44% of 6.7 million HIV-infected patients get antiretroviral treatment (ART) in sub-Saharan Africa, which is lower than anticipated (UNAIDS 2009). The slow uptake of ART might partly be explained by weak health systems and staff deficiencies (Kober & Van Damme 2004; Ojikutu et al. 2008; Meena 2009). HIV prevalence in Tanzania seems to have levelled on 6% in 2009 (UNAIDS 2009), but recruitment of people living with HIV in need of HIV/AIDS care is still low. Although ART has been offered at selected hospitals in Tanzania since early 2005, though only 28% of the estimated 373 000 seropositive adults in need of treatment did receive it in 2008 (UNGASS 2008). HIV/AIDS-related stigma has been well described as an important barrier to the uptake of HIV prevention and HIV testing (Kalichman & Simbayi 2003; Mschana 2006; Obermeyer & Osborn 2007) although very little is known about ART-related stigma. Earlier studies from Tanzania report community worries about intentional HIV transmission by ART patients (Atuyambe et al. 2008; Roura et al. 2008; Ezekiel et al. 2009). Some claim that ART may result in risky sexual behaviours among HIV-positive people (Gray et al. 2003), and research from South Africa has identified high-risk behaviours among people living with HIV who are aware of their seropositive status (Eisele et al. 2008; Kalichman et al. 2009). No evidence exists, on the other hand, from low-income, high-prevalence settings like Tanzania. Health workers’ discrimination against HIV-positive patients prior to ART roll-out has been studied (Horsman & Sheeran 1995; Banteyerga et al. 2005; Letamo 2005; Reis et al. 2005). However, very few studies address health worker attitudes, perspectives and practices in ART programmes, despite their potentially crucial role in ART scale-up (Delobelle et al. 2009; Sadoh et al. 2009). When aiming to increase access to ART in resource-poor settings, understanding of barriers that could hamper the pace and sustainability of increased provision to those in need is crucial (Castro & Farmer 2005). This study aimed to explore the attitudes, perceptions and practices among health care workers, ART patients and community members in relation to ART care, as well as the social consequences of ART roll-out in rural Tanzania. Rufiji district is a rural coastal area in the Pwani region of Tanzania, with a population of approximately 200 000 (NBS 2002). The main language is Swahili. The regional adult HIV prevalence in Rufiji district was 7.0% in 2008, and sexually transmitted infections including HIV/AIDS constituted 22% of the burden of disease (MOH 2008). ART treatment began among the first patients in the district in March 2006, and by 2008, approximately 450 people had been recruited to start treatment. For the purpose of roughly estimating district ART coverage, we estimated that there are 100 000 people between the ages of 15 and 45 years, which means 7000 PLHIV. Estimating that 10% of PLHIV would need ART yearly, a crude district coverage estimate would be a yearly programme enrolment of 450/3 divided by 700 in need, or about 21%. Data were collected using focus group discussions (FGDs), in-depth interviews (IDIs), field observations and ethnographic assessments (Table 1). FGDs were carried out initially to provide an understanding of community and health worker norms. These were subsequently followed by IDIs where themes as well as individual threads were explored in-depth, allowing for an increased understanding and for the emergence of attitudes and perceptions that deviated from norms. To further enhance our understanding and to enable studies of practices in the community and within the health system, we combined these with an ethnographic data collection. Data collection was ongoing until saturation was achieved. We sought to explore attitudes, perceptions and practices among health care workers, ART patients and community members in relation to ART care and its social consequences, because of their intertwined roles in shaping access and acceptance of ART care in the health system and the community under study. The first author, who is a female doctoral student of Tanzanian origin and a fluent Swahili speaker, along with two female Tanzanian social scientists performed the interviews in Swahili using open-ended interview guides. A thematic interview guide was developed from literature reviews (Greenbaum 1999; Patton 2002; Angrosino 2007) and a review of HIV care records at the district level, plus from formative fieldwork such as attending counselling seminars for people living with HIV/AIDS. The guide was tested on enumerators from the Rufiji demographic surveillance site (RDSS) (MOH 2003) and developed further. The formative fieldwork revealed extensive ART-related stigma, and we developed the guide with the aim of exploring this among the interview participants. Other themes that were included were HIV-testing practices, challenges with ART roll-out from the community and provider perspectives, ART and changing of sexual behaviours. Field supervisors from the RDSS or the village Executive Secretaries, a trusted social network in the area, identified study participants for nine community FGDs. Fifteen FGDs with 5–10 persons were conducted with health workers and community members, each lasting 30–60 min. Data represent health worker and community norms and perceptions on the given themes (Table 1). The HIV status of the respondents in the FGDs was unknown, except in one session where a male informant disclosed his seropositive status. To follow-up on emerging themes from the FGDs and to further enable exploration of themes that were too sensitive to discuss in a group, 23 IDIs were conducted. Key-informants were health care workers, the district medical officer, the district AIDS co-ordinator, and other local community leaders as well as ART patients (Table 1). Purposive sampling was used to identify interviewees for the IDIs. The clinical officer in charge informed patients about the study; those willing to participate were offered the possibility to approach the team. The interviews were held off the clinic premises, and ART patients were not followed up after the interview was over. To enable further exploration of the study objectives including practices within and outside the health system, we used ethnographic participant observation for a period of 10 months. Through participant observation of daily life in the community and hundreds of informal conversations held with community members from different social strata, leaders and health care professionals, we increased and deepened our understanding of the study aims. Because we lived among those about whom this study takes place, we developed relationships of trust with many people, who opened their lives and talked frankly – even about negative views. We were able to observe people’s behaviour in daily life, and to verify beyond what people could easily articulate. We also participated in the activities of a local HIV-related organization working in the district, and in HIV testing and counselling seminars for newly enrolled health workers within the Rufiji district. Observations from ethnographic fieldwork were recorded through field notes during daily activities (Box 1). The audio-recorded data from the FGDs and the IDIs were transcribed verbatim, and then translated from Swahili into English by the first author and the field assistants. Six transcriptions were checked for consistency by the second author. All interviews and elements of the field notes were read and analysed using latent content analysis (Graneheim & Lundman 2004). Inductive coding and categorization in phases were applied by the first author initially identifying meaning units through elucidating key phrases in the transcripts and then by sorting them in the margins as condensed meaning units. The condensed meanings units were then given codes, and major categories emerged, which were grouped and further analysed for subthemes (Mustone 2007). Finally, the contributing researchers met to discuss and compare the coding and categories. Consensus was reached by using field observations and ethnographic fieldwork to reflect upon what was brought up in interviews in comparison with what was heard and observed, and in relation to how coding and categorization was carried out. Both methodological triangulation and theory triangulation (Dootson 1995; Patton 2002) were used to enhance the validity of the findings. The study was approved by the national ethics committee (Medical Research Coordinating Committee) and the Tanzania Commission for Science and Technology (COSTECH) (NIMR/HQ/R.8a/VolIX/609). Formal permission was also sought from the District Medical Officer prior to fieldwork in health facilities. The informants were provided with detailed, written information and the opportunity to discuss project details with the team prior to starting any FGD or IDI. Consent was sought verbally in the case of FGDs, and written for IDIs. To meet relevant ethical guidelines on confidentiality and protection of informants, locations and individual names have been excluded. Interviews and observations generated a multitude of data, which have been organized into three main analytical themes: (i) Distrust in sustainability of ART care –‘Time to design your coffin’; (ii) Intentional transmission among ART patients? –‘The devil in disguise’; and (iii) Power abuse within the health care system –‘Pointless interrogations’ (Table 2). The majority of information we analysed was critical towards ART. There was occasional evidence of more hopeful information included in the data, which is reflected in some of the categories presented under the three subheadings. Increased access to ART was seen as an incentive to test for HIV, however, many community members also expressed worries about ART use leading to a quick death. As a community leader explained: I have seen three people who have used the drugs, it was nice for them, but later on, it [ART] refused to help them, and they died. (IDI, local leader) Community members were also concerned about the sustainability of long-term solutions and were highly aware of the absence of a cure for HIV. In FGDs with these informants, ART was said to have an ‘expiry date’, starting ART treatment was perceived as giving a person respite to sort out their affairs but nothing more. One community member explained: Those medicines you go and get, or that you are given, will not cure, they are just for prolonging life. You have wasted your life already. It gives you time to design your coffin. (community FGD, female informant) The scepticism towards ART as a lifesaver seemed to contribute to the use of discriminatory expressions for HIV-positive people living on ART. Field observations revealed that regardless of age, gender or profession, people tended to hold the same derogatory attitude expressed as ‘the dead to be’ [Marehemu mtarajiwa] or ‘the inadequate’ [si riziki]. Health care workers perceived themselves as disempowered in relation to ART scale-up and its sustainability. They were deliberately holding back optimism and avoided providing hopes for the future to ART patients or the community. The health workers described a sense of being outside the process also meant that they felt they could not take full responsibility for the care they were asked to provide. If ART would stop being supplied at no cost, they feared retributions from the community. Moreover, the guidelines, which were provided to counsellors and the ART clinic health workers alike during their training, actually recommended assisting PLHIV on ART to write their last will and testament. Distrust in the sustainability of the ART programme, as well as the problem of disempowerment versus higher levels of decision-making, is illustrated by a quote from IDIs conducted at the care and treatment clinic (CTC) and with the local leaders: I don’t know if this ART project will continue. Because these projects they have their plans. I don’t know if we will continue to provide this service for free. I don’t know where it will end. (IDIs, CTC nurse). … Every leader has an agenda for his people, one day that leader may come and say: now there is no free medication for those who are [HIV] infected, it is better they disappear. That is possible, because we started with a Malaria programme here, now where is it? These things have its end, when the end comes, it will die. (IDIs, local leader) Prior to the ART era, a person with AIDS was assumed to be easily identifiable, e.g. by having lost weight, and this is said to have changed significantly with the entrance of ART. Community FGDs revealed that both male and female informants believed that ART patients looked deviously healthy, and that the treatment was possibly part of a government plan to secretly and intentionally transmit HIV. This phenomenon was expressed during the community FGDs: … to give him/her [ART] medicine that makes him look healthy is to kill us! Maybe it’s the government, maybe it is their idea. (community FGD, female informant) … They, themselves [people on ART], they tell you, they have their saying, ‘I can not go alone, we die together’. (community FGD, male informant) While some community informants expressed a fear that the government was scaling-up ART access to increase transmission, generally the non-infected informants expressed a wish for the authorities to take action to stop vindictive behaviours. Some suggested ‘marking’ people living with HIV to openly display their status: Could all HIV-infected people be marked so that they cannot infect other people … so as to know that this person I’m dealing with is not safe for me? (community FGD, female informant) People living with HIV (PLHIV) revealed that ART has a threefold function for this group: it improves a persons’ health; it eliminates vital signs that lead to suspicions about someone being HIV-positive and thus protects one from stigma and discrimination; and it functions as a solution to the difficulties connected to status disclosure. IDIs with HIV-positive informants also indicated that some of them engaged in sexual risk behaviours, and that the behaviours tended to be justified as a revenge on the people who infected them. Another important issue was infecting others as a way to escape perceived isolation, discrimination and stigma by ‘not going alone’, an expression that emerged from the ethnographic assessment, from IDIs with PLHIV and, as mentioned earlier, in the community FGDs. The following quotes show examples from IDIs with the ART patients: How do I start telling a man that I’m infected? I would just infect him and let him pass it [HIV] on to other people. (IDI, female PLHIV on ART) … They say [PLHIV on ART engaging in risk behaviour]: ‘We become many, if we are many you know we will not be laughed at; it is good if we are many. Mass death is a celebration’. (IDI, male PLHIV not yet on ART) Health workers believed that risky sexual behaviour was a widespread problem among their patients on ART and also among patients not yet on ART. Several health care workers explained that after starting ART, patients regained their health and perceived themselves as cured. Health care workers felt they had an important role in guiding the patients to express ‘healthy’ sexual behaviours and made significant efforts to track patients allegedly taking part in high-risk activities. Despite health workers efforts, some patients would continue with risky sexual activity. As explained during an IDI with a home-based care (HBC) clinic officer: There are some of our patients who transmit …, if we hear somebody is practicing that kind of behaviour, we go to his/her house, we educate the patient, but still some continue to engage in risk behaviours. Some patients if they see that they gain weight, they see themselves as cured. (IDIs, HBC clinic officer) Breach of confidentiality was widespread among health care workers. During the ethnographic fieldwork, health care workers from local health centres were observed discussing about HIV-positive patients with community members, and HIV-positive individuals were pointed out to warn people not to engage with them. Further, power abuse was revealed in one observation of a health care worker demanding bribes from a patient in exchange for not disclosing the patient’s HIV status. The health care worker–patient power dynamic seemed to contribute to a general scepticism of HIV services among the patients and in the community. …when you visit the doctor, they [the doctors] are not to be trusted. When they discover that you have HIV, as soon as you leave, [they] will tell whoever comes that ‘the person who just left is infected, he is infected!’ (community FGD, male informant) Health workers felt that they lacked adequate time and training to provide clients with proper counselling and referred to voluntary counselling and testing as a task that must be ticked-off rather than as an opportunity for prevention. Health workers also recognized that some patients became afraid after counselling, and therefore sometimes did not come back for their results. From informal conversations, health workers also revealed that patients who were afraid reacted with denial and did not acknowledge or accept a positive result. Explained below in an IDI with a VCT counsellor: It is not possible to get good results. One ends up with a person who is terrified and who agrees to give blood but who doesn’t come back to collect the results. The requirement for becoming a counsellor is training for more than six weeks; here, a person is trained for five days. (IDIs, VCT counsellor) Health care staff were said to lack empathy, and patients questioned whether staff had received adequate training to carry-out HIV testing. The communication failure between health care workers and patients led to informants feeling pressurized to test as soon as they visited a VCT site, which in turn deterred people from accessing the sites for information, as illustrated below: …when a person wants to be examined, the nurse wants to do HIV testing, so finally she does it by force. (community FGD, male informant) This study found generally negative attitudes and perceptions about ART care in Rufiji rural district of Tanzania. We found a lack of trust in the sustainability of ART care, a lack of community and health worker involvement in the programme planning and treatment, and an ART-related stigma that enhanced the alienation of people living with HIV. ART use also seemingly contributed to an increase in sexual risk taking. Additionally, we found a poor HIV care provider–patient relationship that included breaches of confidentiality by health care staff and pessimistic attitudes towards HIV testing. This study however also revealed encouraging findings in relation to increased ART access as an incentive to test for HIV and health workers devoted to prevention of risk behaviours. Antiretroviral treatment was thought of among the community members as a means to extend life shortly, literally only to be able to plan one’s funeral. Distrust in the ability of ART to sustain life may be well rooted in the fact that the mortality rate among HIV-positive people on ART is high in this setting. A cohort study in Tanzania reports that after 2 years 67% of ART patients had either died, were lost from follow-up or were adhering poorly (Somi et al. 2009). These results highlight the complexity of ART scale-up and the strong need for a local link to build trust so that communities may get the chance to go through the impressive benefits that ART may offer. HIV-positive individuals on ART reported feelings of wanting to take revenge. The fear of intentional HIV transmission from PLHIV on ART that was expressed among community members has been documented previously (Atuyambe et al. 2008; Roura et al. 2008; Ezekiel et al. 2009), but this is the first time such findings emerge from PLHIV on ART in a resource-poor setting. This is to be considered alongside contextual factors in a low-income country as lack of targeted social support, weak health system structure, and high level of HIV/AIDS-related stigma and discrimination (Hargreaves et al. 2002; Kalichman et al. 2009). The struggle not to be identified as HIV-positive may promote sexual risk taking. Despite health workers’ perceived disempowerment in relation to ART scale-up and its sustainability, it is important to point out that health workers made effort to follow-up patients engaging in high-risk behaviour. Our findings suggest that health workers have important roles in emphasizing HIV prevention for ART patients, and it is necessary to engage them inside the scale-up process. Doing so might enhance the image of ART among the non-HIV-infected community. Community informants were thus looking for the government to provide radical sanctions against people living with HIV to stop transmission. These findings are in line with findings from urban dwellers in Uganda (Atuyambe et al. 2008), and also suggest a great frustration with the existing situation among non-HIV-infected community members, who seemingly feel disempowered in relation to possibilities to protect themselves against infection. The preventive effects of voluntary counselling and testing that have been documented seem threatened in this context (Wolfe et al. 2008; Wringe 2008). The personnel who carry-out the testing lack the necessary training and resources (Kober & Van Damme 2004; UNAIDS 2009). As a consequence, patients experienced HIV testing as mandatory and felt unable to decline a test. Although it is worthwhile to acknowledge the initiative taken by global organizations and funding bodies to scale-up HIV treatment in resource-poor settings, this finding should be considered in the light of the push towards the HIV testing of as many as possible. Meanwhile, too little funding is set aside for the training of health personnel to improve ethical conduct and their understanding of counselling (Moszynski 2008). Breach of confidentiality among health workers additionally jeopardizes the acceptability of VCT and enrolment in ART programmes, and creates an environment where care-seeking is feared. Health workers who intimidate patients alienate PLHIV from the health care system and will add to their internalized stigma (Worthington & Myers 2003; Heywood 2005). This was a qualitative explorative study, and our findings cannot necessarily be extrapolated to contexts outside the study setting. We recognize that the number of formal IDIs with ART patients is small (5), although by combining this data with the ethnographic assessment, we managed to receive saturation for the theme presented. Other threads that were perceived as isolated findings where saturation was not achieved are not presented here. The use of different methods for data collection allowed us to triangulate and validate our findings. Given the sensitivity of the issues under study, the ethnographic approach enabled us to explore sensitive and controversial issues that otherwise would not have been revealed. The perception of ART as a non-sustainable strategy and the sexual risk behaviours of HIV-positive people on ART, together with the power abuse of health care providers, contribute to distrust in HIV/AIDS care. Highly stigmatizing characterizations against ART patients by community members also suggest a great frustration in relation to HIV prevention, and may lead to increased risk behaviours and low enrolment of people need of HIV care in the ART programme. In the urgency to scale-up ART delivery, there is a risk of a ‘delivery no matter what’ situation, which ignores the local social context and the needs of communication training of health workers to provide targeted for patients on ART, including risk prevention. The scale-up of ART is potentially a powerful tool in the fight against HIV-related stigma; however, our findings underline the importance of involving health workers and the community at high levels, because they have an important role in promoting trust in the ART programme. We are very grateful to medical anthropologist, Dr Rebecca Popenoe, who provided qualitative expertise during the analyses and writing of this paper. Sida/SAREC is especially appreciated for providing financial support to the study. This research is a part of the Effects of Antiretrovirals for HIV on African Health Systems project, Maternal and Child Health (ARVMAC) and was in part supported by the European Community’s FP6 funding. This publication reflects only the author’s views. The European Community is not liable for any use that may be made of the information contained herein. The ARVMAC consortium includes the following seven partner institutions: Karolinska Institutet (Co-ordinating Institute), Stockholm, Sweden; Centre de Recherche en Sante de Nouna, Kossi, Burkina Faso; Ifakara Health Institute, Dar es Salaam, Tanzania; Institute of Tropical Medicine, Antwerp, Belgium; Makerere University School of Public Health, Kampala, Uganda; Swiss Tropical Institute, Basel, Switzerland; University of Heidelberg, Hygiene Institute, Department of Tropical Hygiene and Public Health, Heidelberg, Germany.