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Ethnographic experiences of HIV-positive nurses in managing stigma at a clinic in rural Uganda Margaret Kyakuwa

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Amsterdam School for Social Science Research , University of Amsterdam , Kloveniersbulgwal 48, 1012 CX, Amsterdam, The Netherlands Published online: 08 Apr 2010.

To cite this article: Margaret Kyakuwa (2009) Ethnographic experiences of HIV-positive nurses in managing stigma at a clinic in rural Uganda, African Journal of AIDS Research, 8:3, 367-378, DOI: 10.2989/AJAR.2009.8.3.13.934 To link to this article: http://dx.doi.org/10.2989/AJAR.2009.8.3.13.934

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African Journal of AIDS Research 2009, 8(3): 367–378 Printed in South Africa — All rights reserved

AJAR

ISSN 1608–5906 EISSN 1727–9445 doi: 10.2989/AJAR.2009.8.3.13.934

Ethnographic experiences of HIV-positive nurses in managing stigma at a clinic in rural Uganda Margaret Kyakuwa

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Amsterdam School for Social Science Research, University of Amsterdam, Kloveniersbulgwal 48, 1012 CX Amsterdam, The Netherlands Author’s e-mail: [email protected] This paper explores the workplace experiences of HIV-positive nurses and their attempts to manage HIV/AIDS stigma. An HIV diagnosis can have a major impact on an individual’s psychological and emotional wellbeing. Moreover, caring for those suffering from chronic HIV-related illnesses comes with additional stress, which makes providing care more complex. Stigma-reduction and assisting with psychosocial support and wellbeing is an integral part of ensuring that care providers who are HIV-positive have good outcomes both for themselves and their patients. An ethnographic study with HIV-positive nurses was conducted from August 2005 to December 2007 at a Health Centre IV HIV clinic in rural Luweero district, Uganda. Data were gathered through clinical participant observation, informal conversations, recorded life histories, open-ended in-depth interviews and topical focus group discussions. Nurses are in a position to help people through negative life events, yet they may personally experience the same types of negative life events. In the absence of a system to provide support for HIV and AIDS clinical care providers, a group of HIV-positive nurses initiated a support process by creating safe spaces for interacting and seeking psychosocial support among themselves in a relatively secretive way. This process provided the nurses with a solid foundation for developing interventions to assist them through difficult times. Keywords: disclosure, ethnography, healthcare professionals, occupational health, perceived stigma, psychosocial support, qualitative research, sub-Saharan Africa

Introduction The impact of HIV and AIDS transcends socio-economic status, gender, social situation, age and cultural background. Irrespective of one’s economic status, social situation or geographical location, an HIV diagnosis can carry a psychosocial burden. Fear, anger, loss of control, helplessness, sadness, grief, and stigma (from within and without) are well documented (e.g. Baguma, 1992; Adelekan & Jolayemi, 1995; Mbanya, Zebaze, Kengne, Minkoulou, Awah & Beure, 2001; Hanna, 2004; Yang & Kleinman, 2008). Nurses play a central role in the care and treatment of individuals with HIV-related illnesses. Although much has been written about nursing care for people who are HIV-infected, less is known about the experience of nurses who are themselves HIV-positive (Jones-Sande, 2004; Dieleman, Bwete, Odaga, Marjam, Namaganda & Gert, 2007). HIV and AIDS continues to be perceived as a stigmatising disease (Yang & Kleinman, 2008). For instance, the International Council of Nurses (ICN) selected the theme ‘Nurses: fighting AIDS stigma, caring for all’ for International Nurses Day in 2003. The ICN noted that “stigma and discrimination block the march forward against HIV and AIDS, fueling the HIV and AIDS epidemic by creating a culture of secrecy, silence, ignorance, blame, shame and victimization.” The 2003 theme denotes that by continuing to resist HIV stigma and

providing care for all, nurses may lead the way in breaking down stigma and silence surrounding HIV disease. In response to this, I conducted an ethnographic study with HIV-positive nurses working at an HIV clinic in a rural district of central Uganda, from August 2005 to December 2007. This article describes how the nurses experienced and managed HIV stigma. Background Several studies have been conducted in sub-Saharan Africa about nurses’ knowledge of HIV and AIDS and their attitudes towards individuals with HIV. Some literature attests to stigma, discrimination, negative attitudes, inadequate knowledge, lack of resources, and fear of contagion as key barriers to the nursing care of people living with HIV (PLHIV) (e.g. Baguma, 1992; Adelekan & Jolayemi, 1995; Uwakwe, 2000; Klewer, Lauschke, Raulinaviciute, Sasnauskaite, Pavilonis & Kugler, 2001; Mbanya et al., 2001; Mill, 2003; Walusimbi & Okonsky, 2004; Dieleman et al., 2007). Adequate knowledge, positive attitude, and feelings of comfort among professional health workers have been shown to be important factors in providing compassionate care to patients with HIV (e.g. Arachu & Farmer, 2005; Adetoyeje, Oyeyemi, Oyeyemi & Bello, 2007).

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Other studies have shown that the presence of HIV and AIDS has an impact on the healthcare workforce, for example in terms of increased/changed tasks, fear of occupational HIV infection, and increased emotional burdens and stress levels among health workers (Tawfik & Kinoti, 2001; Chen & Hangvaravongchai, 2005; Marchal, De Brouwere & Kegels, 2005; Dieleman et al., 2007). For health workers who are themselves HIV-positive, these burdens can become enormous. Many reports have described how individuals are stigmatised and discriminated against by the healthcare system (UNAIDS, 2000). However, there is little ethnographic evidence revealing how health workers who are themselves HIV-positive may cope with HIV stigma in the workplace. Moreover, research on the efficacy of addressing the consequences of stigma for stigmatised persons is scanty (LeBel, 2008a). A study in South Africa found an alarming level of HIV seroprevalence (i.e. 15.7%) among professional healthcare workers (Shishana, Hall, Maluleke, Stoker, Schwabe & Colvin, 2002); the study also noted loss of staff due to illness, increased absenteeism, low staff morale, and the burden of an increased patient load. The nursing profession was identified as the one most HIV-affected — yet secrecy, stigma and silence continued to prevent evidence of the extent of this from becoming known (Shishana et al., 2002). In the wake of scaling up HIV treatment and care, organisational responses in Uganda were implemented haphazardly and were limited to providing protective materials and HIV/AIDS-related services for patients, while the healthcare workforce was left without due attention (Dieleman et al., 2007). Fournier, Kipp & Mill (2007) found that nurses caring for HIV/AIDS patients in Uganda were suffering emotional anguish. A study conducted in four rural hospitals in Uganda reported that HIV-positive staff essentially remained in hiding, and most staff did not want to get tested, as they feared stigmatisation, while there was no system in place to assist staff when they faced emotional difficulties (Dieleman et al., 2007). As the main provider of HIV/AIDS-related services, the healthcare sector in Uganda faces staff shortages (Ministry of Health, 2005a), where approximately 88% of more than 29 million people live in rural areas. Countrywide, there are less than 550 nurses specially trained in HIV and AIDS care and the use of antiretroviral therapy (ART) in both the public and NGO health sector (Wendo, 2005; Ministry of Health, 2007). Uganda has 6.7% HIV prevalence (UNAIDS, 2007) and most healthcare staff are nursing assistants, a cadre with minimal professional qualifications; moreover, by July 2008, the number of people on ART had risen to 132 000 (including 8 690 children) — but far less than half of those in need (approximately 300 000 people), while about 1 000 new patients are put on antiretroviral medicines (ARVs) per month, with most of this workload carried out by nurses (World Health Organization, 2008). Like many other resource-poor settings, Uganda experiences difficulties with the motivation and retention of healthcare staff (Ministry of Health, 2005b). There is a weak sub-national public and private capacity in implementing the health-sector’s response to HIV prevention. This leads to slower scale up of activities at the lower levels of service delivery (The AIDS Support Organisation [TASO], 2007).

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According to the national ARV roll-out policy document, rural hospitals —although closer to the majority of the population — are still not within easy reach for most poor (who are the majority of the rural population). This segment of the population consequently utilises smaller care units, such as for the sake of accessibility and more affordable cost. These smaller units are referred to as health centres, which are categorised as IV, III, II and I, according to administrative levels within the county, sub-county, parish and village, respectively. A Health Centre IV is a referral centre for all the smaller health centres within the sub-district, and a district will have several health sub-districts (Ministry of Health, 2003). In Uganda, these health centres are more rural, less resourced and less researched than hospitals. The topic of this article is limited to one rural HIV clinic situated within one such rural (sub-district) Health Centre IV. I do not dwell on a discussion of the HIV-positive nurses in and of themselves per se, but seek to explore and limit myself to a discussion the strategies that the nurses used to manage encounters related to HIV and AIDS stigma. Thus, the discussion largely concerns the nurses’ strategies concerning stigma rather than the persona of the individual nurses. My intention is to showcase the plight of HIV-positive nurses in resource-limited settings and how they manage HIV and AIDS stigma in the absence of structures in place to care for clinical carers. Defining stigma HIV-related stigma is prevalent in many parts of the world (Shisana et al., 2002; Mill, 2003; Heijnders & Van der Meij, 2006; Horizons, 2006; Li, Zunyou, Sheng, Yu, Manhong & Zhihua, 2007; UNAIDS, 2008). Goffman (1963) conceptualised stigma in society on the basis of what constitutes ‘deviance,’ meaning a stigmatised individual as someone with ‘an undesirable difference’; that author also stated that stigma is a highly discrediting attribute. Over the years this definition has been expanded to define stigma both in terms of the social identity and specific social contexts within which it occurs (Crocker, Major & Steel, 1998). Stigma associated with HIV and AIDS is also a process of devaluation, often used to produce social inequality (LeBel, 2008a). Pescosolido, Martin, Lang & Olafsdottir (2008) suggest a new framework of defining and analysing stigma, which starts with Goffman’s (1963) notion that understanding stigma requires a language of social relationships, but which also acknowledges that individuals do not come to social interaction devoid of affect and motivation. Furthermore, social interactions take place in a context in which organisations, media, and the larger culture will structure normative expectations, which creates the possibility of marking ‘difference.’ For instance, HIV-related stigma in a healthcare setting discourages PLHIV from seeking care if they previously experienced unwelcoming treatment or if their confidentiality was not respected (Dieleman et al., 2007). As a result, fears of stigma and discrimination have created a silence that threatens the public health (Bayer, 2008). Many theories have contributed to an understanding of the complex web of expectations shaping stigma (Wim, 2006). In this paper I focus on understanding the effects of

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stigma on the lives of HIV-positive nurses and the resources devoted to combating that stigma. My emphasis is mainly on perceived (internalised or felt) stigma (for a classification of stigma, see Wim, 2006). Perceived stigma involves shame, secrecy, and withdrawal triggered by applying negative stereotypes to oneself or the fear of being discriminated against.

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Methods A qualitative descriptive design (Sandelowski, 2000) was deemed appropriate for this study as the objective is to provide an in-depth analysis of the everyday experiences of a sample of nurses. The article reports on data from a sub-study within a larger qualitative longitudinal study involving 20 health workers and 40 HIV-positive patients using ART administered by a mobile NGO-run health facility and a static public health facility, located in two different rural districts in Uganda. The case study data reported here were drawn from six of 11 participants, who were professional health workers at the public static HIV clinic at a sub-district Health Centre IV. The research site was an HIV clinic within such a health centre located in rural Luweero, one of four rural districts within central Uganda, a region with 9.4% HIV prevalence — one of the highest levels in the country (Ministry of Health, 2005a). The study site was purposively selected following the criteria that it provided a static ART programme, was rural, and one of the very first sub-district level public health centres after the district-level regional hospitals, where the government ART roll-out programme started in 2004 — therefore, there is a wealth of experience to draw from. The HIV clinic is housed in a separate building in the backyard of the health centre; it is government-funded and had 510 ART clients. The clinic provides voluntary counselling and testing for HIV (VCT), ARVs, treatment for sexually transmitted infections (STIs), treatment for opportunistic infections, and health education services. At the time of the study, the ART programme was run every Monday, while Wednesday and Friday were for VCT. During these days as well as the rest of the week, all the staff at the clinic attend to care of other patients across different departments at the health centre (e.g. maternity and labour section where prevention of mother-to-child transmission of HIV [PMTCT] is run as a separate programme from the HIV clinic, theatre, general ward rounds, out-patient department, child nutrition ward). The research was more specific in terms of the study population: it was conducted among HIV-positive nurses working in a lower-level Health Centre IV HIV clinic providing HIV and AIDS care and ART. Considering that the nurses were treating a largely stigmatised disease with fairly stigmatised treatment, how did HIV-positive nurses go about managing this stigma in their everyday workplace activities? What were the nurses’ perceptions about the workplace? What were the outcomes of their own stigma-related encounters? Thus, the focus of the study provides insights into the dynamics and impact of HIV and AIDS on healthcare workers in more profound and specific terms.

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Characteristics of the study participants and scope of the article The six case study participants included three female nurses who also had midwifery training, two female nurse counsellors, and one male clinical nurse. Three of the study participants had a university degree in nursing while the others had a diploma in nursing and clinical care. Their clinical working experience varied between 6 and 20 years, and their age range was 26 to 48 years. Only two of these care providers had disclosed their HIV status at their workplace. The HIV status of the other respondents was identified based on the care provider’s self-report after an extended period of building rapport. This was later verified by observing the care providers taking their ARVs on various occasions. Interviews were conducted in English as some of the nurses were not fluent in the local language and they were more comfortable with English. For all these care providers, much like everyone else, ART was introduced into their daily life as multiple, strictly timed doses of several drugs (some having a bad taste). Moreover, adherence of more than 95% seemed necessary to achieve viral suppression and to avoid development of viral resistance. But the information reported during my early interactions with the two care providers who had disclosed their HIV status seemed to provide broader insights into the problems these carers faced — beyond the problems they faced with taking their medication, as they continually related this beyond self and more so, to their work relations. These insights helped me to generate and ask new questions regarding how these health workers coped with the pressures described in the introduction. Thus, the scope of the article is not to delve into the kinetics of ART but the social dynamics of how HIV-positive nurses experience and cope with the experience of enduring a stigmatised disease while working in an environment that they perceived as stigmatising. Data collection I conducted clinical participant observations, informal conversations, recorded life histories, analysed nurses’ diaries, and held open-ended in-depth interviews and topical focused group discussions. For such a sensitive topic, participant observation became key, as this allows for an understanding of symbolic representations (e.g. through metaphorical expressions as well as other life concerns relating to relations in caring: for example, bodily gestures and facial expressions, general expression of feelings and emotions). These are not quantifiable aspects but are qualitative experiences of everyday life which people have learned to attend to. Statistical sampling or applying a structured questionnaire may not give in-depth insights. Data from in-depth interviews and focus group discussions was collected using a topic guide. Being a female who has learned to attend to caring for chronically ill members of my family, added to my volunteer clinical experience in providing treatment for chronic illnesses (similar to the nurses I was studying), gave me an advantage in this area. This awareness established a foundation on which I could socially relate with my study participants (see Barth, 2000). I took on the role of volunteer

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counsellor at the HIV clinic. So, in addition to an enhanced foundational level of sociality, Barth (2000) highlights that immersion in joint action during fieldwork also establishes some of the pre-conceptual, experiential bases that local people may use to construct their cognitive categories and pathways of thought and reason. Thus, writes Barth (2000): nhanced sociality and pre-conceptual sharing is the full harvest of a serious practice of our famed ‘participant observation.’” Recording life histories and the experiences of the nurses illuminated the picture of how they manage their lives both in and outside their workplace. In-depth interviews and focus group discussions were handy techniques as they helped me cross check against the verbal expressions (governable aspects) of my informants by using the expressions they gave off (ungovernable aspects): that is, being able to penetrate into the backstage. In particular, I engaged in a long period of rapport building and had to establish an intimate trust with a limited number of respondents as to be able to penetrate their backstage. Ethical considerations Approval of the study was gained from the Uganda National Council of Science and Technology and from the ethics committee at the HIV clinic. The participants were given detailed information about the study during the exploratory fieldwork visit (lasting three months) and they gave verbal consent. To ensure the confidentiality of the study participants, I use the pseudonyms to which they agreed. All six HIV-positive medical providers verbally consented to their views being written out in the report of the research. Data analysis I used the guide analysis of Attride-Stirling (2001) for qualitative descriptive studies (see Kenny & Duckett, 2004). I designed a coding framework and dissected the texts line by line. Basic themes explicit enough to encapsulate an idea as well as expansive enough to include varying text segments from the transcripts were identified. The basic themes generated clusters of organising themes (i.e. those summarising the principle assumptions of a group of basic themes) that were more abstract and revealing in regard to the text (see Attride-Stirling, 2001). The organising themes were explored for commonalities and relationships with each other. I further clustered the organising themes into a macrotheme — ‘managing stigma’ — which encompasses the principle metaphors in the data. I returned the transcribed material to the participants, who confirmed that the themes were an accurate reflection of the discussions held. The data analysis ran concurrently with the data collection, and coding was on-going until the data were saturated. As I was interested in the specific experiences of HIV-positive nurses in the workplace, a small sample size was deemed appropriate to produce the kind of in-depth knowledge necessary to understand the structures and all the processes within which the individuals or situations were located. Because the study was conducted with a specific group of chronic care providers within a specific rural context, I took the approach of maximising information and not facilitating generalisations. In other words, the aim was to produce findings that could be potentially

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transferable rather than generalised to every setting. The validity of the data was assured by triangulation, by using different methods of data collection and asking the same questions during focus group discussions and in-depth interviews, by exploring the same topics among all study participants at different times and places, and by comparing and contrasting the information gathered from interviews with information collected through informal conversations and observations. Findings The findings are organised under the global theme of managing stigma, which includes two organising themes: i) experiences (perceived or real) in the workplace (including contradictory norms), and ii) coping with related stresses in the workplace. In real-life interactions however these two themes appeared continually interrelated and highly intertwined. The following subsections describe the organising themes, which are illustrated by selected narratives and quotes from the case study data. Experiences and contradictory care norms in the workplace By attentively listening in to everyday conversations, I soon found out that all the HIV-positive nurses were not receiving ART from the HIV clinic where they worked. When I asked them why they were not receiving the treatment from their workplace, they often immediately responded with facial expressions denoting both surprise and shock, as aptly stated below: ‘Ah, Margaret [researcher], you think I can line up here with my patients to be seen and have fingers pointed at me? I have witnessed enough drama here already and I don’t want to be the next on the list of those being acted out or talked about.’ (Prim, age 27) ‘For me, even if it were not for the line, to tell colleagues and gossip starts of whom you loved or didn’t love, never!’ (Peter) ‘To receive my ART from here is to tell me to disclose to everyone, even those I don’t want to know my status. Remember the principle of confidentiality still holds!’ (Florence, age 31) A fear of stigma was high among the HIV-positive nurses. This was manifest for instance in the fact that all of them received ART from elsewhere other than the clinic where they worked and provided care. To receive care at the workplace would mean to disclose to those whom one never intended to and this could lead to new forms of stigma, real and perceived. So the workplace environment did not provide security against what the nurses viewed as stigmatising attitudes, situations and incidents — like being pointed at or talked about, both by colleagues and the patients that one was caring for. The actual underlying problem seemed to be not just a fear of stigma, but the fear of judgment being passed against one’s person and sexuality because of the moral judgments with which HIV and AIDS has been imbued as a mostly sexually transmitted disease tied to ‘looseness’ in character (as described by Peter, above). Disclosing

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the information would also bring into question their honour and respect. Moreover, the nurses reported that their fear of stigma was exacerbated by the notion that healthcare providers are expected to not get sick and to generally be in control. Therefore, to be seen receiving the same treatment as their patients would mean a display of their own vulnerability, as they wanted to be and were expected to be in control. The nurses’ experiences were packed with a kind of bitterness for a lack of attention to healthcare providers, where stigma and prejudice seemed to run in a vicious circle, creating a culture of silence and psychological detriment, as reflected in these statements: ‘I can tell you I know many of my colleagues in different places whom I meet when we go for our drugs at the Kamwokya Christian Caring Community Clinic who are in denial…others simply fear to disclose to anyone at work because the environment at their health centre is so unfriendly and full of stigma, and actually it is worse in a non-HIV/AIDS care setting.’ (Harriet, age 48, July 2006) ‘With what I have gone through, witnessed and heard, I have learnt that with such a stigmatised disease and complex treatment, we need to go beyond that logo that says Treat the people, so that we first treat ourselves within the profession, because we seem to have more sick attitudes than even those we call our patients…then we can treat others…charity begins at home you know!’ (Harriet, December 2007) It was striking to learn that among people who were trained in a profession to provide specialised care for others, care for self — for medical healthcare providers who found themselves in a situation similar to those they cared for — was poorly attended to. This is clear from Prim’s statement questioning her friends: ‘What can you do when nobody teaches you how to treat a complex stigmatised disease with a complex stigmatised therapy, and more so, when you yourself are its number one entangled culprit…?’ (Prim, September 2007). Stigma and disclosure: contradictory practices in care I asked the nurses if they ever faced contradictions in their work, given their HIV serostatus and the fact that they were dealing with a disease that had acquired general rules about disclosing and living positively. The issue of stigma and disclosure were particularly singled out by the nurses: Prim: ‘The issue of stigma among us health workers is rather a complex one because we spend a lot of time trying hard to convince patients to disclose, live positively and so on, so as to fight stigma, yet we ourselves find it so hard to even just tell each other at work about our status.’ Peter: ‘We require a workplace policy to be implemented to increase safety and to fight stigma, but it is going to be extremely difficult because health worker attitudes simply don’t permit this. We still hold double standards in this respect…in fact, sometimes I feel we are asking for so much from

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our patients — that which we ourselves in the same situation we cannot do — we are not practicing what we preach in many respects; and for us who are HIV-positive, these contradictions do affect us in some way because we have to struggle to live with them.’ The nurses also identified and were aware of deep running contradictions within the HIV/AIDS care movement, where to disclose is considered virtuous. The nurses highlighted that the healthcare system advocates for patients to disclose their serostatus and live positively, for instance through different forms of advocacy, such as giving testimonials. However, the nurses noted that they themselves, as the health system’s number one advocates, could not live up to the disclosure norms. Thus, the HIV-positive nurses were constantly confounded by the real need for acting amid the prevalence of double standards. The study participants identified another contradiction: that contrary to ART guidelines and protocols, they sometimes self-prescribed this complex treatment. They typically got their drugs at the end of day when all other staff had left the clinic or else on days or during hours other than those when the clinic was open to the general public. Self-prescription without proper diagnosis may be dangerous in relation to complex chronic disease care. It is also a disservice to one as a patient because the individual can miss out on the comprehensive package of ART care. This kind of behaviour may in a sense perpetuate stigma, by creating a vicious cycle of secrecy in response to the individual’s fear of stigma. Coping with stigma-related stresses in the workplace How did the nurses cope considering that they did not dare receive ART from their workplace for fear of stigma (especially perceived stigma), albeit in a workplace environment that was not conducive to disclosure, and where they were confronted with contradictions that made their HIV-care work more difficult beyond the usual workload stresses? Creation of safe spaces within the workplace My observations at the clinic revealed that the nurses who had not disclosed their HIV-positive status in the workplace had instead selectively chosen who they intimately interacted with among their fellow staff members lest their intimate emotions give them away and inadvertently disclose their HIV-positive status to persons they never wished to: ‘I don’t relate with everyone here in the same way, because not everyone understands my situation. Whom can you trust here? I just have to keep my secret in all ways possible.’ (Peter) ‘I have to be strategic because I need to remain positive about myself and to remain active. I need to be psychologically and socially stable, and as of now I must figure that out only by myself.’ (Harriet) ‘When I tested positive and started on ART, I had to learn to get by here at work. Now am very reserved with many colleagues here at the clinic — am very reserved — and for some I simply avoid

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them because once they know am HIV-positive, I can become their breakfast, lunch and dinner menu. So I strive to create a safe space for myself lest I am hurt.’ (Prim) ‘I am more intimate with those with whom we have a similar HIV status because they understand my situation and my problems the same way I do. When I am with them I am not ashamed or even fearful of what they think or say because they understand.’ (Dorothy, age 26) Among the mechanisms employed to create safe spaces and to manage or evade stigmatising encounters in their workplace were: selective disclosure, selective interaction, avoidance and concealment. The findings show that assistance with coping with HIV stigma requires not only that medicines are available, but it should also entail creating a better environment in terms of healthcare and psychosocial support, where people are less afraid and more willing to share their thoughts about HIV and treatment, and where they may become willing to share their status and seek care without shame or the fear of being stigmatised or discredited. Halfway into the study period, when I again asked the nurses why they remained secretive about their serostatus, their responses went beyond just describing a fear of stigma. The participants were also concerned with keeping their job (even though there were no reported cases of loss of employment due to an individual’s HIV-positive status) and they also desired to remain active and healthy. The nurses often asked me: ‘What is the point in disclosing to everyone at the workplace where there is so much prejudice, fear and no psychosocial support for staff in the workplace?’ The nurses weighed the benefits versus costs, and if they did not see benefits that outweighed the cost of disclosing, then they simply did not disclose in their workplace: ‘I tell my problems to the open-up group members because I simply have nobody to tell at my workplace who will understand, other than these friends of mine with whom we share the same fate. It’s true disclosing at the workplace would be useful to ease work-related stresses, but the so-what attitude is still high.’ (Dorothy) ‘I see no point in telling colleagues at work because they won’t help me other than make me an object of sympathy, which I don’t like, because to me that is more stigmatising!’ (Prim) Negotiating access to psychosocial support: safe spaces transcending the workplace When I requested a focus group discussion with the four female nurses in April 2006, they were enthusiastic; later, this enthusiasm turned into emotional outbursts and sobs as the women talked about pressing issues within their workplace and their individual experiences. The discussion became a moment of emotional release and it lasted over four hours. During this time two nurses who had not disclosed to anyone in the workplace suddenly mentioned their HIV status to the other two who had already shared their status with colleagues at the clinic. However, the two made it categorically clear that they did not want anyone

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else at the clinic to know their HIV status. At the end of the discussion, the four nurses opted to adopt and modify the focus group into something more personal for them. Hence, in May 2006, the four female nurses decided to form a secret support network, and so began the ‘open-up group.’ They decided to have rather secretive, sporadic meetings in the form of visits to each other’s homes, in order to share their experiences and offer each other much-needed psychosocial support in an environment they called ‘open-up meetings.’ The phrase ‘open-up’ came from a well-known television talk show in Uganda, where people expressed usually very painful experiences in their lives (e.g. the hope of finding a lost loved one or the need to overcome a traumatic experience, like defilement or rape, as well as adverse issues in their everyday family life, like domestic violence). During the open-up meetings, the HIV-positive care providers described their experiences and advised each other on how to deal with challenges related to work and their daily lives. They saw the group as a coping mechanism and a place where they could relieve their emotions and feelings: ‘We talk a lot beyond our experiences at work. We usually discuss from specific to general issues. Ah! It is interesting and it’s always important stuff for us and sometimes very intimate stuff.’ (Florence) ‘We learn a lot from each others’ experiences while in the group, which boosts our morale and confidence. It’s a self-help group. Over time we have learnt to share and to trust and assist each in intimate ways.’ (Harriet) ‘In the open-up group we learn ways to cope in simultaneous ways at our workplace and in our work of caring…here I learnt diplomatic ways of avoiding people and keeping my distance while working with them at the same time and covering the secret of my status…so you see, I carry the experience of open-up with me in the workplace and continually draw on it in multiple ways.’ (Prim) ‘When we meet, we openly take care of each others’ psychosocial needs, which are often never talked about even in what one calls ART counselling. I remember two of us — even after having been through all the routine counseling at some NGO-run clinic — still had so many painful emotions, which we had never let out simply because we are too busy or never found someone to listen to us. Some of us used to get very emotional and even burst out crying like babies during the open-up meetings, as we shared very personal experiences related to ourselves, our work, or our patients. This shows how much pain we kept in our hearts…pain related to many things; and that can slowly kill you.’ (Dorothy) In the open-up meetings these nurses had created for themselves a space outside the clinic, where they shared and expressed the emotions caused by experiences both within and outside their workplace. They were convinced it was a safe space to talk about their health condition without fear of being discriminated against or facing shaming comments. In this sense, these nurses tried to circumvent stigma (whether

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real or perceived) and its related consequences in the workplace. Unlike the clinic workplace, which was seen as a potentially threatening space, the secret open-up meetings were considered a safe space for disclosure. These sessions of sharing had become moments to look forward to in the lives of these health workers. The group’s open-up meetings became a powerful and treasured form of social support, which the individual care providers appeared unable to find elsewhere. It was clear that the health workers had interests beyond being ART medical care workers. They were HIV-positive medical care workers facing the challenges related to being a patient on ART as well as a caregiver of patients on ART. Not only did the nurses perceive the meetings as sharing sessions but they rationalised the group as something that worked well to relieve their stress by empowering their expression without fear of prejudice, discrimination or stigma from others: ‘This group is a safe space; we cannot be stigmatised here. This space became our kibegabega [shoulder] to cry on. It is a real invaluable de-stressor. I always look forward to these moments…these are moments when I experience care and feel cared for, moments when I really learn to get by anything at work.’ (Prim) ‘Opening up means sharing a lot. Sometimes, it’s quite intimate stuff. We find ourselves advising each other on how to deal with a rowdy child, a drunkard boyfriend, the school fees loan, the rotational NIGINA [a women’s cash and property-giving cycle], the demanding boss at work, the prejudiced colleague at work, the non-adherent patient, the upcoming family function, the side effects of ART. In the open-up group, these are moments of truth and reality for us.’ (Harriet) Negotiating stigma in order to access ART All the study participants preferred to receive their ARV treatment from care centres far away from their workplace even if similar services were offered at the clinic where they worked. Thus, the nurses were accessing ART through NGO-based facilities in Kampala on a monthly basis. When I asked why they did not receive ART from the clinic where they worked, their answers pointed to fear of stigma within their workplace, while three also suggested self-stigma. On the other hand, they felt welcome and less stigmatised in the NGO-run care settings, as can be read in some of their statements: ‘In Kamwokya Christian Caring Community [KCCC] the environment is more friendly; medical care workers are friendly, they make you feel at home and welcome, they really take time to listen; but most importantly, there is a way I feel confident out there.’ (Peter, November 2006) ‘I feel loved and cared for…a feeling you cannot find elsewhere except at KCCC AIDS clinic. These guys practice what they preach among Catholics, that is do to others what you want them to do to you.’ (Prim, February 2007) ‘At Mbuya AIDS Outreach Clinic, you know it feels like you have gone home because everyone is so

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welcoming. In other words, they are glad to see you…can you imagine they even take time to thank me for coming…coming to pick up my pills as if I were doing them a favour! It’s not good to have HIV, but on the other hand I thank God for the unique lessons he has given me through my illness…many of these I would never have known…I have learnt that to care is to love.’ (Florence, June 2007) ‘I get my ARVs from TASO in Kampala and I always look forward to my clinic visits because at least I know that once a month I am welcome somewhere; I can even go to exchange notes — I really feel supported and loved out there…you know from the receptionist, secretary, sweeper, nurse, to the doctor you are treated with respect and love… those guys simply enjoy what they do and they do it best — they care!’ (Harriet, April 2006) These statements reveal how stigma can affect an individual’s access to health services. The nurses indicated that they preferred to expend more resources travelling to far-away clinics where they believed they would encounter no threat of devaluation to their person. They were also evaluative of the general clinic environment and their experience of it and they believed there were better caring environments beyond the same services in their workplace. Discussion Whereas the HIV-positive health workers in the study by Dieleman et al. (2007) essentially remained in hiding, the findings here show that HIV-positive nurses employed many other strategies to receive care. The findings of this study are more positive, since they reveal that the nurses improvised and circumvented stigma in their workplace by practicing concealment, avoidance and selective disclosure (reactive strategies), selective interaction and affiliation (intermediate strategy) by forming the secretive ‘open-up group’ as well as seeking clinical care elsewhere (proactive coping mechanisms for negotiating stigma). Seeking ART other than from the HIV clinic where they worked was a proactive strategy: in so doing, the nurses rejected the negative, stigmatising environment of their workplace even though they were sometimes a part of it. Much research concerning stigma has been criticised as heavily biased towards the examination of protective and defensive coping strategies (Anspach, 1979; Kitsuse, 1980; Siegel, Howard & Ilan, 1998). In contrast, the findings of this study show that the nurses were not only protective and defensive, they were also proactive. This was so in as far as they tried to keep their HIV status a secret, yet at the same time strove to gain social support from each other. The nurses actively challenged stigma by engaging with each other at a group level as well as by seeking HIV care away from the clinic where they worked. They engaged in forms of social activism by coming out and/or opening up to emotion and self-expression, at least with each other. However, the nurses’ actions can also be read as displaying a lack of trust in the quality of HIV care they themselves were involved in providing. Such distrust can also be linked to limited skills or to insufficient time to

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handle the large number of patients who needed care. Nevertheless, in all their coping strategies, these nurses showed a strong resilience and willingness to stick to their caring roles at the clinic, even when they experienced tough situations that threatened their identity, psychosocial wellbeing or care-providing role. The nurses recognised a great need for social support as a result of their own HIV infection coupled with the stress of caring for other HIV or AIDS patients. Since psychosocial support was lacking in their workplace environment, they sought self-help through the secret open-up group. Due to its association with behaviours that may be considered socially unacceptable by many people, HIV infection is widely stigmatised. The findings show that the HIV-positive nurses viewed their workplace HIV-clinic environment as unfavourable as they felt likely to encounter stigma in the context of their everyday caring practices by virtue of their HIV infection. As a result, they devised mechanisms to create a more favourable workplace environment for themselves through the creation of ‘safe spaces.’ These safe spaces were both physical and imagined areas where the nurses felt free to express themselves with regard to their HIV serostatus, without necessarily creating suspicion or inviting negative attitudes from their audiences. The findings show that stigma constitutes one of the greatest barriers to receiving HIV care effectively at a local clinic. Fear of real or perceived stigma inhibited the nurses from sharing their HIV diagnosis and sometimes from seeking treatment and care for themselves. One interpretation of the findings is that the nurses were helping to perpetuate stigma in new ways, given that they generally remained secretive about their HIV status and their open-up group’s activities. To say that the nurses engaged in concealment may seem reactive, yet this agrees with the finding of Dieleman et al. (2007) that other HIV-positive staff in Uganda remained essentially in hiding for fear of stigma. However, an alternative interpretation to the nurses’ behaviour and actions is that despite the work-related stresses they faced, these HIV-positive health workers actively (consciously or subconsciously) engaged in circumventing stigmas in order to sustain their presence in the clinical space and so to provide much-needed HIV care to others. And this can be read as proactive. The nurses saw the NGO-run clinics (where they accessed their own ART) as safe spaces where they could expect to encounter less stigma. These were also seen as places for self-expression and areas of better care in terms of the attitudes of the health workers there towards patients. They noted that their own colleagues often made references to the undesirable attitudes of some health workers towards patients in the public clinic (where they worked) and this too was a reference point to justify the choice made by the nurses. So their ‘flight’ to receive HIV care elsewhere could be read as another way of circumventing the negative attitudes of some health workers towards PLHIV, which the nurses did not want to fall victim to, and such attitudes have been well documented in literature (see Mbanya et al., 2001; Mill, 2003; Walusimbi & Okonsky, 2004; Dieleman et al., 2007), while the nurses also desired to seek better care.

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The nurses’ search for ARV treatment outside their own clinic was not simply a form of defense or protection against stigma. It also seemed a powerful form of rejection and social activism in regard to the negative self-identity of these nurses as well as a response to a somewhat unfriendly workplace environment. Hence, the nurses sought a more positive and viable concept of the self by seeking treatment in a friendlier environment where they felt cared for as a patient. For instance, they described the care environment at the other clinics as welcoming, as a place where they felt more loved and cared for — qualities denoting a less stigmatised and less stigmatising environment. Internalised stigma can lead to an evaluation and attribution of the attitudes elsewhere (e.g. here, within the NGO-run facilities) as actually less stigmatising, however. Characteristic of what the participants described as better care attitudes at the other facilities were issues related to counselling, the provider–patient relationship, and social support. Safe spaces were created when going about their daily chores in the workplace, when accessing psychosocial support through their private open-up group, and by accessing ART elsewhere. The nurses’ process of negotiation to create safe spaces took place in relation to oneself (mentally) but also in terms of social interactions and within social relationships (with individuals and in the group). Their desire to be in a place where one could feel safe was characterised by a conscious decision and action to create this space. This process was characterised by relations denoting trust and secrecy (as in the open-up group), taking flight to seek care elsewhere, and concealment, avoidance and selective disclosure. Whereas trust acted as the ground rule (to establish safety) in the open-up group — secrecy, concealment and selective disclosure were the rules when the nurses were outside the group. In regard to the creation of safe spaces by these nurses, the experience of stigma was on one hand useful in that they were able to temporarily create a more favourable working environment. By choosing who, when, where and how to tell their status to, or else to avoid, disclose or interact, the nurses had created imagined spaces about and around themselves — where, even if for only a moment, they could feel free from prejudicial attitudes. This also meant that they could speak and interact openly about their personal and professional problems. Also, in these safe spaces the nurses felt that their honour and respect was maintained and that they were valued as patients. Their safe spaces helped them to manage or circumvent what they often referred to as an unfavourable workplace environment, which they described as stigmatising, unsupportive and/or uncaring. Safe spaces were often described as the opposite of the unfavourable environment. There, the nurses solicited emotional satisfaction, support and care, especially in terms of their psychosocial needs resulting from their challenging clinical environment and roles. As much as ‘safe spaces’ may have protected the nurses against stigma, safe spaces may also inadvertently promote avoidance and concealment. For instance, avoiding a colleague at work may lead to a missed instructive opportunity, and thus for that moment a gap in understanding is upheld. Moreover, concealment may result in actions by

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others (such as clinic administrators) that may outweigh consideration for the health and wellbeing of care providers — which was often manifest in these nurses’ work overloads, or denied treatment or sick leave. (I made the general observation that the nurses often had to lie their way out or stand in for each other.) This was especially the case if one had to be absent from work for treatment appointments or if one were suffering severe side effects from ART. As much as the nurses feared the stigma of being seen or imagined to be receiving HIV care alongside their patients, they feared having to explain where and why they were going for treatment or having to explain why they did not use the treatment at the clinic. Moreover, the health centre’s staff records indicated that they often had to find discrete ways to leave the centre — to seek care or as a result of drug side effects — as those reasons never surfaced on the leave forms. In conversations away from the workplace, the nurses sometimes expressed dread for making an appointment with their personal healthcare provider as they had to state a reason for being off duty. They felt they could not comfortably be truthful as they might be indirectly disclosing their serostatus. Observations revealed that the nurses’ process of creating safe spaces was often a costly endeavor, and their means may have served to protect those outside the nurses’ realm more than actually serving their individual wellbeing or health. Research has consistently found that perceived stigma and discrimination has a negative impact on self-esteem, life satisfaction and quality of life (see Wright, William, Gronfein & Owens, 2000; Berger, Estwing & Fellisa, 2001; Link, Struening, Sara & Jo-Phelan, 2002; Jones-Sande, 2004). LeBel (2008b) found that among prisoners, perceptions of stigma were a strong predictor of lower self-esteem and less satisfaction with life. Likewise, in this study, the nurses expressed frustration about the contradictions in healthcare practices (e.g. having to insist that their patients disclose, whereas they found it extremely difficult to do the same). Other studies have shown that the coping strategy that a stigmatised person choses impacts on behavioural and psychological outcomes. Link et al. (2002) found that using coping strategies that were reactive and defensive (such as avoidance and concealment) harmed individuals’ psychological wellbeing as well as employment status. Alternately, perceptions of stigma need not be viewed as necessarily negative to one’s self-esteem. For these nurses, such perceptions were transformed to proactive strategies, which motivated, empowered and sustained the nurses caring behaviour for their patients. In interviews with patients at the HIV clinic, three of the nurses were often singled out as favourites because of their better caring tactics, and the nurses themselves attributed this to the benefits of being able to share in the open-up meetings. Observing their daily activities revealed that they sometimes went out of their way to help each other with clinical tasks and they easily stood in for another if one felt unwell, simply because they understood each other’s situation. For them, the open-up group had became an intimate friendship group. For instance, the nurses expressed enthusiasm over their membership in the secret open-up group as well as their search for treatment from an NGO faith-based care centre.

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They described the open-up group with phrases such as ‘it’s a shoulder to cry on’ and ‘it’s our self-help,’ and so it became a space of emotional release and self-expression, where they felt relief in regard to their pain and emotional burdens, where they expressed solidarity, ‘shared intimate stuff.’ In the same space, they self-evaluated their experiences and work practices against those of other colleagues. They also shared general knowledge about life, socialised, and learnt and adapted knew techniques for caring by learning from each others’ experiences in and out of the clinic. This resulted in higher self-esteem as they felt more confident and proud to be members of this group, and this in turn contributed to their psychological and general wellbeing. The open-up group was also a place where the nurses received not only social support but built up their confidence and trust in each other by keeping each other’s confidences. For example, they decided to keep the existence of the group a secret as well as keep secret the HIV status of those who did not want to disclose to all the staff in their workplace. In this sense, the open-up group ceased to be just the usual social support group (like the clinic-based post-HIV-test support groups). The idea of a support group in HIV and AIDS care is that the group is known by everyone and people are referred there for social support. Such a group may also take on an active role in challenging negative perceptions through drama and community awareness campaigns about HIV and AIDS treatment. In a sense the members become advocates and ambassadors. In contrast, the nurses’ open-up group became a network of trust relations among these nurses. The group was kept secret for fear of identification of and association with their HIV status. The nurses decided what information to disclose, whom to disclose to, and why, how, when and where to disclose as a result of weighing the costs and benefits. Other research has similarly shown how stigmatised individuals may attempt to pass as ‘normal’ or strive to keep their HIV status from others (Goffman, 1963; Link et al., 2002). However, Siegel et al. (1998) argued that reactive strategies like concealment involve defensive attempts to avoid or reduce the impact of stigma and in effect do not actively challenge it. Scholarly work suggests that proactive approaches to coping with stigma are more effective than reactive approaches — in terms of reducing the negative effects of the perceptions of stigma and improving wellbeing (Shih, 2004; LeBel, 2008a). Whereas this may be true, I argue for a more complementary focus. The configuration of strategies as used by the nurses shows that they re-enforced each other. Experiences from the open-up group were drawn on in caring for patients and dealing at the same time with colleagues from whom HIV-positive nurses concealed their status or avoided to interact with within the clinical space and the nurses acknowledged this as a continuous everyday process. They carried the open-up experience with them, and drew from and used the lessons in multiple ways. The findings suggest that any interventions to tackle stigma should involve both institutional and individual concerns. A recent study in China revealed that a better way to understand and tackle HIV-related discrimination in

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healthcare settings requires tackling of both individual and institutional factors (Li et al., 2007). Coping over time The actions of the nurses can be interpreted as having progressed from the use of reactive strategies (for instance, total concealment or selective disclosure) to more proactive coping strategies (for instance, social activism by seeking care elsewhere). These strategies have been referred to by Siegel et al. (1998) to study stigma and how gay American officers coped in their policing behaviour; however, those authors’ conception of these realities was linear, in a sense that one is assumed to progress from using one strategy to the next in a rather linear manner. Whereas this could hold true in some cases, my observations indicated that the nurses tended to draw variously on one or more strategies at the same time, as the situation warranted: that is, the nurses generally used a configuration of coping strategies. In a sense, these strategies were not mutually exclusive, but overlapped. Concealment and avoidance were strategies that persisted over time, throughout their interactions in the workplace. This finding resonates with those of study done among patients with mental disorders (Wright et al., 2000), where anticipated rejection and actual experiences of discrimination and the use of avoidance and concealment strategies were found to persist over time. Unmet needs and stigma-reduction strategies Some literature reviews have identified stigma-reduction strategies and interventions that might work well among patients (Link et al., 2002; Heijnders & Van der Meij; 2006; Weiss, Jayashree & Daryl, 2006; LeBel, 2008a). The findings of this study suggest that the nurses, as a large and influential group of healthcare workers, have important unmet needs (such as for psychosocial support), yet as a group they have been overlooked by workplace programmes in Uganda. The findings are consistent with research from Zambia and Kenya which has shown that health providers and teachers have unmet HIV-prevention and care needs, and that they can benefit from workplace programmes that include VCT education and promotion (Horizons, 2006). One reason for this is that HIV-programme planners may wrongly assume that care providers as a group are sufficiently knowledgeable about HIV/AIDS-related issues, and that they do not need targeted interventions to address HIV in their personal and professional lives (Horizons, 2006). A report by Uebel, Friedland, Pawinski & Holst (2004) from McCord Hospital, well regarded for its community orientation and as a teaching facility, records how an initiative to reach out and create a supportive work environment for HIV-affected staff (following the death of four staff members in four months) was met with denial, fear, hopelessness, and an unwillingness to be tested or treated for HIV. One reason for much of the failure in stigma-reduction interventions is that the interventions tend to focus entirely on the stigmatised groups or individuals. The question to ask rather is how can the attitudes, knowledge and practices of those who are seen as ‘not understanding’ or who are making others feel or become ‘objects of sympathy’ be harmonised

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with the expectations of those who are HIV-positive? This question requires more exploratory research and concern for the perspectives of those who are the non-stigma targets or the stigmatisers. Experience from studies among homosexuals has taught us that a strong movement of PLHIV which affords mutual support and a voice at the local and national levels is particularly effective in tackling stigma (Brown, Macintyre & Trujillo, 2003). Such approaches are empowerment-oriented and involve proactive and collective responses from stigmatised persons themselves in order to change their own and the public’s perceptions and so help create a positive identity. Such strategies are increasingly being thought of as the targets’ most enduring way to reduce stigma and prejudice (see Parker & Aggleton, 2003; Shih, 2004; Major & Laurie, 2005; LeBel, 2008a). The advantage of proactive strategies — over individualistic reactive strategies — is that any improved treatment will likely spill over across a variety of situations and improve the lives of other stigmatised persons. Thus, the involvement of stigmatised persons in anti-stigma and discrimination campaigns is a topic in need of further exploration. Conclusions This article has emphasised the viewpoint of HIV-positive nurses to examine the experiences and coping strategies used by care providers to deal with HIV stigma. The possible uses and outcomes of these strategies have been discussed. Nurses are in a position to assist people through negative life events, but they may also experience the same types of negative events themselves. In the absence of systems to provide psychosocial support for HIV/AIDS clinical care providers, HIV-positive nurses in Uganda started the process by creating safe spaces for interacting and searching for psychosocial support and care in rather secretive ways. Whereas safe spaces can be useful, they may also disadvantage the ones who use them; more so, their secretive nature may perpetuate the cycle of stigmatisation and non-disclosure. This example, however, provides a solid foundation for the development of interventions to assist nurses through difficult moments while providing HIV or AIDS care. It is important to note that the safe space created to avoid stigma related to HIV infection or AIDS illness is only temporary. If the person does not intentionally and willingly disclose, the body (including emotions and expressions) may essentially disclose through persistent symptoms of illness or show adverse reactions to ART. For one to think to that they are in a ‘safe space’ may potentially do more harm than good to their psychosocial wellbeing in case they face unexpected disclosure. It is important point to consider that in assuming safety through concealment, secrecy, trust or selective disclosure, at what point in the interaction/process does the social relation become a challenge so as to make the caring relation or the safe space environment unsafe? How does one control the way one feels, for instance? And who is responsible, or how does one respond to the reactions of either interacting party when the safe space suddenly becomes unsafe? More research

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would be needed to uncover these nuances. Moreover, because HIV and AIDS affects all people to some degree, and because stigma can take on new forms and likewise take its toll among health workers who are supposed to be advocating against it, a new set of questions ought to be asked: How am I affected when as a health worker I opt not to challenge myself over issues of stigma? And, what factors may influence my decision to challenge myself, and how will this affect my participation in care today? Stigma is a universal topic that bridges many disciplines, such as sociology, psychology, anthropology and public health; thus the insights gained from this group of HIV-positive nurses in a rural Ugandan clinic can be used to inform the formation of other groups in other settings. Acknowledgements — This was a sub-study within postdoctoral research about transformations in healthcare arrangements, which was part of a larger integrated programme on AIDS medicines in resource-poor settings (AMRP). The study was carried out with financial support from the Dutch Ministry of Foreign Affairs, and technical support was provided by the Amsterdam School for Social Science Research (ASSR), University of Amsterdam (The Netherlands), and Makerere University (Uganda). I am greatly indebted to Professor Anita Hardon, Professor Edward Kirumira, and Dr Eileen Moyer for providing guidance throughout the study. I thank the management and health workers at the facility where this study was conducted. Most importantly, I am grateful to the participants who willingly shared their HIV status and their workplace experiences with HIV and AIDS and ART. The author — Margaret Kyakuwa is a NORAD scholar and a PhD researcher at the Amsterdam School for Social Science Research (ASSR), University of Amsterdam. She has worked as a consultant with DANIDA, the Adventist Relief and Development Agency, the Rockefeller Foundation, and the World Health Organization, among others. She is coordinating a three-country study on the sexual and reproductive health of HIV-positive young people and she currently lectures at the Department of Sociology and Anthropology, Makerere University.

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