This thesis, 'Living with HIV/AIDS: An ethnography of care in Western Kenya', is based upon 18 months of ethnographic fieldwork carried out in Central Nyanza, Kenya, between 2005-2007. It studies practices of care against the backdrop of the HIV/AIDS epidemic, which has impacted the region severely. The thesis explores how home and hospital are established as domains of care through practice. It draws upon ethnographic material collected from within a District Hospital, a Community-Based Organisation and people's homes. The thesis follows practices of care across divergent domains of social life to consider how practices of care within Luo networks of kinship and relatedness intersect with governmental interventions to manage HIV/AIDS. The thesis describes two governmental projects introduced to administer HIV/AIDS care in this region. It considers Home-Based Care, an HIV/AIDS response in which Community Health Workers are trained to support particular aspects of care at home, focusing on the practices of care employed by Community Health Workers as they visit sick people at home and attend organisational meetings. The thesis also describes the landscape of HIV care in the District Hospital, including the delivery of antiretroviral therapy. The focus here is on the relationships between caring practices in the hospital and at home, and the divergent responsibilities to care experienced by hospital staff and family members. The main argument of the thesis is that care is a particularly useful analytical tool for anthropology because practices of care take place across many different domains of social life, cutting across the boundaries that have formed the traditional focus of anthropological study. Studying practices of care illuminates the production of bounded domains of social life whilst simultaneously drawing attention to similarities of practice across different domains. Care provides a way of understanding the complex social landscape that has developed as people in Western Kenya endeavour to live with HIV/AIDS.

Com o advento da terapia antiretroviral houve um aumento significativo na sobrevida e qualidade de vida dos portadores do HIV/aids. Esta nova realidade traz novas possibilidades de conviver com a aids, sendo a sorodiscordância uma delas. Este estudo teve como finalidade descrever e analisar o impacto da sorodiscordância na vida afetivo-sexual de portadores do HIV/aids que convivem com parceria heterossexual com status sorológico discordante. Como referencial teórico utilizou-se o conceito da vulnerabilidade. O local de estudo foi o ambulatório especializado no atendimento do HIV/aids do Hospital das Clínicas da Faculdade de Medicina da Ribeirão Preto-SP. Os dados foram coletados através de entrevista individual gravada e organizados e analisados com base na Análise de Prosa de André (1983). A partir dos dados emergiram nove temas: A percepção da invulnerabilidade, A descoberta da soropositividade ao HIV, Via de Infecção, Revelação do diagnóstico para o parceiro, A sexualidade, Vulnerabilidade da parceria sexual, Uso do preservativo, Saúde Sexual e Reprodutiva, A convivência. Os casais sorodiscordantes enfrentam inúmeros desafios após a descoberta de soropositividade em um dos parceiros, precisando desenvolver estratégias para o manejo de dificuldades para a vivência da sexualidade, para a manutenção do sexo seguro até a convivência com o parceiro soronegativo. Estas dificuldades não são de responsabilidade exclusiva do casal, cabendo aos profissionais de saúde assumirem a sua responsabilidade social no enfrentamento destes desafios impostos pela sorodiscordância. Ficou evidente que a necessidade de acolher também o parceiro soronegativo no atendimento e que os casais sorodiscordantes merecem atenção específica dos serviços de saúde. A falta de serviços de saúde específicos a casais sorodiscordantes é um dos fatores que aumenta a vulnerabilidade do parceiro soronegativo, quando este não é evidenciado no atendimento e quando as questões trazidas pela sorodiscordância não são abordadas adequadamente. Apontamos a necessidade de alternativas assistenciais, promovendo uma mudança na prática assistencial vigente, centrada no modelo biológico. A assistência a estes indivíduos deve ser realizada por equipes interdisciplinares que contemple os aspectos da dimensão afetivo-sexual trazidos pela sorodiscordância, sendo necessária capacitação e sensibilização dos profissionais de saúde envolvidos no atendimento. A equipe de enfermagem ocupa um importante papel na assistência ao portador do HIV/aids e suas ações devem transcender os aspectos clínicos e terapêuticos, incluindo a sexualidade, a prevenção e manutenção de sexo seguro, que se apresentam como expressivos componentes de risco entre parceiros sorodiscordantes. / The appearance of antiretroviral therapy brought about a significant increase in the survival and quality of life of HIV/aids patients. This new reality entails new possibilities for living with aids, one of which is serodiscordance. This study aimed to describe and analyze the impact of serodiscordance on the affective and sexual life of HIV/aids patients whose heterosexual partner has a different HIV status. The concept of vulnerability was used as a theoretical reference framework. This study was carried out at the specialized HIV/aids care clinic of the University of São Paulo at Ribeirão Preto Medical School Hospital das Clínicas, Brazil. Data were collected through individual interviews, which were recorded. Data organization and analysis was based on Prose Analysis by André (1983), which gave rise to nine themes: perception of the invulnerability, the discovery of HIV seropositivity, infection way, revealing the diagnosis, sexuality in mixed-status couples after discovering HIV/aids infection, vulnerability of the seronegative partner, use the condom; reproductive health, relationship. After discovering seropositivity in one of the partners, mixed-status couples face countless challenges and need to develop coping strategies for difficulties related to sexual activities, maintaining safe sex and living with a seronegative partner. Not only the couple is responsible for these difficulties. Health professionals should assume their social responsibility in facing the challenges imposed by serodiscordance. We observed that seronegative partners have to be included in care activities, and that mixed-status couples deserve specific attention from health services. The lack of specific health services for mixed-status couples is one of the factors responsible for increased vulnerability of the seronegative partner, when (s)he does not appear in care and no adequate treatment is given to serodiscordance-related issues. We point towards the need for care alternatives with a view to promoting a change in current care practices, which focus on the biological model. Care for these persons has to be realized by interdisciplary teams and consider the affective and sexual aspects caused by serodiscordance, which leads to the need for increased training and awareness of the health professionals involved. The nursing team plays an important role in HIV/aids care and its actions have to go beyond clinical and therapeutic aspects and including sexuality, prevention and safe sex maintenance, which reveal to be important risk components in mixed-status couples.

Com o advento da terapia antiretroviral houve um aumento significativo na sobrevida e qualidade de vida dos portadores do HIV/aids. Esta nova realidade traz novas possibilidades de conviver com a aids, sendo a sorodiscordância uma delas. Este estudo teve como finalidade descrever e analisar o impacto da sorodiscordância na vida afetivo-sexual de portadores do HIV/aids que convivem com parceria heterossexual com status sorológico discordante. Como referencial teórico utilizou-se o conceito da vulnerabilidade. O local de estudo foi o ambulatório especializado no atendimento do HIV/aids do Hospital das Clínicas da Faculdade de Medicina da Ribeirão Preto-SP. Os dados foram coletados através de entrevista individual gravada e organizados e analisados com base na Análise de Prosa de André (1983). A partir dos dados emergiram nove temas: A percepção da invulnerabilidade, A descoberta da soropositividade ao HIV, Via de Infecção, Revelação do diagnóstico para o parceiro, A sexualidade, Vulnerabilidade da parceria sexual, Uso do preservativo, Saúde Sexual e Reprodutiva, A convivência. Os casais sorodiscordantes enfrentam inúmeros desafios após a descoberta de soropositividade em um dos parceiros, precisando desenvolver estratégias para o manejo de dificuldades para a vivência da sexualidade, para a manutenção do sexo seguro até a convivência com o parceiro soronegativo. Estas dificuldades não são de responsabilidade exclusiva do casal, cabendo aos profissionais de saúde assumirem a sua responsabilidade social no enfrentamento destes desafios impostos pela sorodiscordância. Ficou evidente que a necessidade de acolher também o parceiro soronegativo no atendimento e que os casais sorodiscordantes merecem atenção específica dos serviços de saúde. A falta de serviços de saúde específicos a casais sorodiscordantes é um dos fatores que aumenta a vulnerabilidade do parceiro soronegativo, quando este não é evidenciado no atendimento e quando as questões trazidas pela sorodiscordância não são abordadas adequadamente. Apontamos a necessidade de alternativas assistenciais, promovendo uma mudança na prática assistencial vigente, centrada no modelo biológico. A assistência a estes indivíduos deve ser realizada por equipes interdisciplinares que contemple os aspectos da dimensão afetivo-sexual trazidos pela sorodiscordância, sendo necessária capacitação e sensibilização dos profissionais de saúde envolvidos no atendimento. A equipe de enfermagem ocupa um importante papel na assistência ao portador do HIV/aids e suas ações devem transcender os aspectos clínicos e terapêuticos, incluindo a sexualidade, a prevenção e manutenção de sexo seguro, que se apresentam como expressivos componentes de risco entre parceiros sorodiscordantes. / The appearance of antiretroviral therapy brought about a significant increase in the survival and quality of life of HIV/aids patients. This new reality entails new possibilities for living with aids, one of which is serodiscordance. This study aimed to describe and analyze the impact of serodiscordance on the affective and sexual life of HIV/aids patients whose heterosexual partner has a different HIV status. The concept of vulnerability was used as a theoretical reference framework. This study was carried out at the specialized HIV/aids care clinic of the University of São Paulo at Ribeirão Preto Medical School Hospital das Clínicas, Brazil. Data were collected through individual interviews, which were recorded. Data organization and analysis was based on Prose Analysis by André (1983), which gave rise to nine themes: perception of the invulnerability, the discovery of HIV seropositivity, infection way, revealing the diagnosis, sexuality in mixed-status couples after discovering HIV/aids infection, vulnerability of the seronegative partner, use the condom; reproductive health, relationship. After discovering seropositivity in one of the partners, mixed-status couples face countless challenges and need to develop coping strategies for difficulties related to sexual activities, maintaining safe sex and living with a seronegative partner. Not only the couple is responsible for these difficulties. Health professionals should assume their social responsibility in facing the challenges imposed by serodiscordance. We observed that seronegative partners have to be included in care activities, and that mixed-status couples deserve specific attention from health services. The lack of specific health services for mixed-status couples is one of the factors responsible for increased vulnerability of the seronegative partner, when (s)he does not appear in care and no adequate treatment is given to serodiscordance-related issues. We point towards the need for care alternatives with a view to promoting a change in current care practices, which focus on the biological model. Care for these persons has to be realized by interdisciplary teams and consider the affective and sexual aspects caused by serodiscordance, which leads to the need for increased training and awareness of the health professionals involved. The nursing team plays an important role in HIV/aids care and its actions have to go beyond clinical and therapeutic aspects and including sexuality, prevention and safe sex maintenance, which reveal to be important risk components in mixed-status couples.

Thesis (MPhil (General Linguistics))--University of Stellenbosch, 2011. / Bibliography / ENGLISH ABSTRACT: This thesis is interested in textual features of websites which cover the same kind of content, but represent different organisations and address different kinds of audiences. Specifically, it investigates how information on HIV/AIDS is multimodally represented on the webpages of two non-governmental organisations (NGOs) and two governmental organisations. First, the websites of the national Department of Health and of a provincial Department of Health (Western Province) are scrutinised. Second, the websites of the Treatment Action Campaign (TAC) and Avert, NGOs with a special interest in the prevention and treatment of HIV/AIDS in southern Africa, are investigated. The aim of the research is to consider aspects of layout, the use of multimodality, and the introduction of selected themes and concerns foregrounded in the selected websites. The focus of the thesis is on the transmission of information, particularly through the electronic media, by investigating multimodal elements (language, images, sound, colours) and the layouts of websites, in order to identify possible interpretations which the intended audiences may afford the various texts. The analysis of the sites relies theoretically on the metafunctions developed by Halliday (1985) in his systemic functional linguistic framework. It also refers to an extension of Halliday’s work developed to allow multimodal discourse analysis that considers aspects of visual design and placement, developed by Kress and van Leeuwen (1996, 1998) and Kress (2003, 2005). These approaches focus on text, multimodal elements, the placements thereof on a page as well as the coherence between design of layouts and communicative modes that intend to send a convincing and meaningful message. The thesis also refers to Critical Discourse Analysis in that it considers matters of language and power in internet based communication. It seems that the governmental sites are set up with an audience in mind who needs to be informed on policy matters, while the NGO sites are set up with a more vulnerable audience in mind. One kind of web-communication is likely to alienate the exact people who should be receiving state support and treatment in the face of HIV/AIDS. Another is aimed more at supporting activism against the perceived lethargy of the state. A third supports various charities that reach out to communities where HIV-infection rates are particularly high. The interpretation of multimodal pages requires knowledge of website design for educational purposes as well as information on usage of the internet to get sufficient information. Further, access of the intended audience to electronic communication needs to be considered as this will determine whether the seriousness of the illness and possible prevention or treatment, is well communicated, especially to those who have been identified as most vulnerable to new infection. The thesis finds that electronic communication cannot be the first step to circulating information related to HIV/AIDS. Non-governmental and governmental institutions are still dependent on other forms of media than websites, thus on the printed media, radio and television, and on campaigns or community based projects to communicate with particular audiences. Electronic communication is complex in that it works with various modes (visual, verbal, audial) and requires some technical sophistication from producers and receivers of texts. Theories of communication and discourse analytic methodologies can assist in our understanding of how the internet succeeds or fails in circulating critical health care information. However, to gain a reliable understanding of how the internet functions in transmitting HIV-information to all interest groups, received knowledge of other areas of scholarly interest in health care communication, such as multilingualism, sociology, anthropology, behavioural sciences, cognitive psychology or brain research elaborations, would eventually have to be considered as well. / AFRIKAANSE OPSOMMING: Hierdie tesis stel belang in tekstuele kenmerke van webwerwe wat dieselfde tipe inhoud weergee, maar verskillende organisasies verteenwoordig en verskillende tipes gehore aanspreek. Dit ondersoek spesifiek hoe inligting oor MIV/Vigs multimodaal op die webbladsye van twee nie-regeringsorganisasies (NRO’s) en twee regeringsorganisasies aangebied word. Die webwerwe van die Nasionale Departement van Gesondheid en die Provinsiale Departement van Gesondheid (Wes-Kaap) word eerstens noukeurig ondersoek. Tweedens word die webwerwe van die Treatment Action Campaign (TAC) en Avert, NRO’s met spesiale belang in die voorkoming en behandeling van MIV/Vigs in suidelike Afrika, ondersoek. Die doel van hierdie navorsing is om oor aspekte van uitleg, die gebruik van multimodaliteit en die invoering van spesifieke temas en sake wat op die geselekteerde webwerwe beklemtoon word, na te dink. Die tesis se fokus in op die oordrag van inligting, veral deur die elektroniese media, deur multimodale elemente (taal, beelde, klank, kleur) en die uitleg van webwerwe te ondersoek, om sodoende verskillende moontlike interpretasies wat die bestemde gehoor aan die verskeie tekste mag heg, te identifiseer. Die analise van die webwerwe steun teoreties op die metafunksies wat deur Halliday (1985) ontwikkel is in sy grammatikale raamwerk, Systemic Functional Grammar. Dit verwys ook na ’n uitbreiding op Halliday se werk, wat deur Kress en Van Leeuwen (1996, 2005, 1998) en Kress (2003) ontwikkel is om multimodale diskoersanalise toe te laat wat aspekte van visuele ontwerp en plasing oorweeg. Hierdie benaderings fokus op teks, multimodale elemente, die plasing daarvan op ‘n bladsy en die koherensie tussen die ontwerp, uitleg en kommunikatiewe modusse. Dit kyk na hoe hierdie elemente saamwerk om ’n oortuigende en betekenisvolle boodskap uit te stuur. Hierdie tesis verwys ook na aspekte van Kritiese Diskoersanalise wat betrekking het op kwessies van taal en mag in internetgebaseerde kommunikasie. Dit kom voor asof die regeringswebwerwe ontwerp is met ’n gehoor in gedagte wat oor beleidskwessies ingelig moet word, terwyl die NRO-webwerwe ontwerp is met ’n meer weerlose gehoor in gedagte. Lg. gehoor word ingelig oor die siekte en behandelingsmoontlikhede eerder as beleid. Een soort web-kommunikasie sal waarskynlik dié mense wat juis regeringsondersteuning teen MIV/Vigs behoort te ontvang, vervreem. ’n Ander soort is meer daarop gerig om aktivisme teen die staat se vermeende traagheid te ondersteun. ’n Derde soort kommunikasie ondersteun verskeie liefdadigheidsorganisasies wat uitreik na gemeenskappe waar MIV-infeksiekoerse besonder hoog is. Die interpretasie van multimodale webwerwe vereis kennis van webwerf-ontwerp vir opvoedkundige doeleindes asook inligting oor die gebruik van die internet om voldoende inligting te bekom. Verder moet die bestemde gehoor se toegang tot elektroniese kommunikasie in ag geneem word, aangesien dít sal bepaal of die erns van die siekte en moontlike voorkoming of behandeling, goed weergegee word, veral aan dié wat s besonder blootgestel is en dus hoë risiko loop vir nuwe infeksie. Die tesis bevind dat elektroniese kommunikasie nie die eerste stap kan wees in die proses om inligting oor MIV/Vigs te sirkuleer nie. Nie-regerings- en regeringsorganisasies is steeds afhanklik van ander media as webwerwe, soos drukmedia, radio, televisie en veldtogte of gemeenskapsgebaseerde projekte, om met bepaalde gehore te kommunikeer. Elektroniese kommunikasie is kompleks omdat dit met verskeie modusse (visueel, verbaal, oudio) werk en tegniese sofistikasie van vervaardigers en ontvangers van tekste vereis. Teorieë van kommunikasie en diskoersanalise-metodologieë kan ons insig in hoe die internet daarin slaag (of nie) om belangrike gesondheidsorginligting te versprei. Om egter ’n betroubare begrip vir die werking van die internet as verspreider van MIV-inligting aan alle belange-groepe te verkry, moet kennis van ander areas van belangstelling in gesondheidsorg-kommunikasie, soos veeltaligheid, sosiologie, antropologie, gedragswetenskappe, kognitiewe psigologie of brein-navorsing, ook uiteindelik oorweeg word.

The research focused on employee wellness and explored and described the role of spirituality in the wellbeing of CHCWs of HIV/AIDS patients. It was important to determine how CHCWs dealt with the stress of caregiving, due to the increasing number of HIV infections and burden on government resources. The approach was a phenomenological qualitative study using faceto- face interviews to collect data from a purposive sample of eight CHCWs from a population of 250 at Temba. The audio-recorded interviews were transcribed verbatim and analysed for emerging themes using thematic analyses. The research findings provided evidence that spirituality impacted positively on the wellbeing of the CHCWs by providing the coping mechanism to deal with stress. The conclusions drawn were that personal and organisational wellbeing operated at an optimal level due to the influence of spirituality. Recommendations were that formalised spiritual programmes were offered as a tool to equip CHCWs in their duties. / Industrial and Organisational Psychology / M. Com.

Enjeux et pratiques de la recherche médicale transnationale en Afrique. Analyse anthropologique d’un centre de recherche clinique sur le VIH à Dakar (Sénégal). Les conditions de faisabilité des recherches cliniques conduites en Afrique (standard de soins, information et niveau de compréhension des participants potentiels, bénéfices de la recherche pour la population, etc.) font l’objet de débats jusqu’à présent limités aux aspects médicaux ou éthiques. Cette thèse apporte un autre éclairage en analysant ces recherches cliniques comme des objets sociaux complexes, supports de représentations socio-culturelles, de normes et d’enjeux (locaux et internationaux). Fondée sur une enquête ethnographique de 20 mois à Dakar (Sénégal), cette thèse documente les conditions de réalisation de l’expérimentation clinique et plus précisément de la recherche sur l’infection à VIH. Pour ce faire, ce travail décrit la mise en place d’un centre dédié à l’accueil et à la réalisation de dispositifs de recherche clinique sur le VIH (le CRCF) et analyse les « cultures organisationnelles » de cinq études cliniques réparties dans trois structures de santé et / ou de recherche. Cette étude permet d’une part, de comprendre les logiques des acteurs impliqués sur le terrain de la recherche clinique VIH au Sénégal ; d’autre part, de restituer le « cadre de la pratique » des projets de recherche (coopération scientifique Nord-Sud, professionnalisation des acteurs de santé locaux aux « métiers de la recherche clinique », application des procédures standard internationales, mise en place d’un environnement éthique, place des PvVIH dans le processus de recherche clinique, etc.). Enfin, la thèse montre la constitution d’une recherche médicale publique et transnationale dans le champ du VIH au Sénégal ainsi que ses spécificités / Issues and Practices of transnational medical research in Africa Anthropological analysis of a clinical research center on HIV in Dakar (Senegal). The feasibility of clinical researches conducted in Africa (standard of care, information and participants' understanding, benefits for the population, and so on...) has been debated but narrowed to medical or ethical aspects until now. This thesis gives another point of view to this debate, showing clinical trials as complex social objects, medium of socio-cultural representations, norms and stakes (both local and international).Based on a 20 months ethnographic study in Dakar (Senegal), this thesis documents the conditions in which clinical experimentation is being conducted and more specifically HIV research. To achieve this, this work describes the establishment of a center dedicated to the reception and the realization of clinical research on HIV (CRCF) and analyzes the « organizational cultures » of five clinical studies spreaded in three different health care or research facilities.This study allows on the one hand, to understand the logic of the actors involved in HIV clinical research in Senegal and on the other hand, to account for the "practice framework” of research projects (North-South scientific cooperation, professionalization of local health actors towards "professions of clinical research", the application of international standard procedures, the set up of an ethical environment, the role of PLWHA in clinical research process, etc..). Finally, the thesis shows the construction of a public and transnational medical research concerning HIV in Senegal both with its specificities