This thesis is an ethnographic study of AIDS-related stigma in the work and discourse of healthcare providers in Wamena. Wamena is located in the highlands of Papua, the eastern-most province of Indonesia. HIV/AIDS rates in Papua are dramatically rising and stigma continues to hinder HIV/AIDS programs and initiatives. This thesis looks at assumptions about stigma and shows intersections of stigma with Christianity and racism to be integral aspects of AIDS-related stigma in Wamena. The connection between stigma and HIV/AIDS as a disease is not as strong as intervention programs appear to assume. In 2010, I conducted ethnographic research among health care providers in Wamena. I employed semi-structured interviews, participant observation, and casual interviews to collect materials and assess current practices that contribute to stigma in the healthcare setting. The results of this research challenges current HIV/AIDS-focused approaches to stigma by showing stigma is expressed in subtle ways even among well-trained healthcare providers, that stigma is expressed through Christian values and through assessments of racism, and that some aspects of stigma can also work to protect patients from other forms of discrimination. / Graduate

Colorectal cancer (CRC) is the second leading cause of death in the United States and has the highest death rate among Blacks. Whereas studies have targeted patients to increase CRC adherence in the general population few studies have focused on improving providers’ adherence to screening guidelines. Also, CRC screening studies among HIV-positive patients consistently show lower screening rates compared to screening rates among HIV negative persons. Results of screening colonoscopy studies among HIV positive patients show higher prevalence of neoplastic lesions and colon cancer is diagnosed at advanced cancer stages; these patients have shorter disease-free survival compared to HIV-negative patients. The aim of this transdisciplinary retrospective–prospective and randomized control study is to examine providers’ adherence to screening colonoscopy guidelines before and after screening reminders, evaluate the impact of an educational screening video and review of colonoscopy decisions tree plus usual care on patient adherence compared to usual care only. Results showed that providers’ adherence to screening colonoscopy guidelines significantly increased after reminders to refer patients were placed in medical records. The randomized trial showed that patients in the intervention group were more adherent to screening colonoscopy appointments compared to patients in the usual care arm. Also, patients with little or no social support in the intervention arm were more likely to keep appointments. This is the first reported study of a Transdisciplinary prevention model integrating evidence-based medicine, behavioral medicine and human factors decision support through a multi-faceted intervention to increase screening colonoscopy adherence in the HIV population. We integrated a provider reminder system, patient informed decision support of colonoscopy educational video and decision tree review in addition to patient provider communication to promote increased provider and patient screening behavior. Further studies are needed to elucidate the impact of patient centered intervention strategies and social support on screening colonoscopy behavior.

<p>This study formed part of the broad theme on the impact of HIV and AIDS on school-going learners sponsored by the Dynamics for Building a Better Society programme of the University of the Western Cape and the VLIR Partnership. HIV and AIDS poses a unique challenge to society in that it is a private disease transmitted mainly through unprotected sex that still has no known cure. A challenge to society invariably challenges schools. Primary school principals are obligated to respond because learners in the 5 to 14 year age range provide an opportunity for education, advocacy, prevention, treatment and support. This study aimed to contribute to a better understanding of school leaders and their responsibility towards HIV and AIDS and poverty.</p>

Background: Human immunodeficiency virus (HIV) is a global problem and the total number of people living with HIV is approximately 34 million. Little is known about registered nurses’ experiences of caring for children with HIV/AIDS in South Africa.   Aim: The aim of the study was to describe registered nurses’ experiences of caring for children with HIV/AIDS in South Africa. Method: A qualitative research approach was used. Data was collected by interviews which were analyzed using content analysis. The interviews were conducted at a private hospital in Cape Town, South Africa. Results: The following ten topics were found; self-fulfillment, being supportive, being hopeful, being adaptable, being non-judgmental, helplessness, loneliness, sadness, stress and frustration. Conclusion: There is a constant balance between feelings of powerlessness and the ability of being mentally strong when caring for children with HIV/AIDS.   Keywords: HIV/AIDS, children, registered nurses’ experiences, South Africa

For those living in resource rich countries such as Canada a positive HIV diagnosis no longer means an imminent death. In response to this change, numerous treatment and therapeutic institutions have arisen to assist individuals with managing their illness. Illness narratives then, the stories people tell and retell about their illness experience, are constructed by and within this multiplicity of medical frameworks that can interact in ways that are both complimentary and contradictory. Drawing on ethnographic data obtained through two months of participant observation and seven in-depth interviews at an HIV/AIDS treatment facility in Vancouver, British Columbia I discuss how illness narratives reveal the presence of and an orientation towards the powerful discourses of medicine. Some of the frameworks evident in the narratives I examine include biomedical understandings of health and disease, support group dialogues on self-empowerment, tenets of complementary and alternative medicines, clinical models of low-threshold access to health care, notions of health services as a human right, and addiction treatment concepts. In order to afford a place for the institutional discourses of medicine in my analysis, the subjective experience of illness is contextualized with reference to it’s situatedness amongst the myriad of other voices that both construct and constrain narrative production. Ultimately, I seek to demonstrate how the incorporation of disparate institutional voices into a subjective story of illness reflects the development of a unique orientation to the institutions of medicine an understanding that I conceptualize as medical consciousness.

The Dr. Peter Centre (DPC), an HIV care facility, provides integrated health care services incorporating harm reduction strategies as part of service provision. These services include a “Harm Reduction Room” for those members who inject drugs, to do so in a supervised environment. In this thesis, I explore the perspectives of DPC members on the harm reduction approach as part of a larger study titled A mixed Method Evaluation of the Impact of the Dr. Peter Centre on Health Care Access and Outcomes for Persons Living with HIV/AIDS who use Illicit Drugs. Thirty DPC members were recruited as part of the qualitative portion of the larger mixed-method study. One-on-one in depth interviews were conducted with each participant and audio-recorded and then transcribed verbatim. Participant narratives reflected positive experiences with nurses and other staff, and with the harm reduction philosophy at the DPC. Narratives from both participants who inject drugs and participants who do not inject drugs indicated support for the harm reduction room because of the safety it provides. Safety was related to reducing the direct harmful effects of injection drugs such as infection and overdose, and also to the refuge from the street and freedom from stigma of drug use that the DPC provides. Participant accounts expressed a sense of acceptance and belonging as a part of the community at the DPC highlighting the role of DPC in shifting drug use patterns. This thesis emphasizes that the harm reduction philosophy and the provision of harm reduction services at the DPC contributes to the overall health and well being of participants. / Graduate

<b>Background:</b> This is the first epidemiological study of internalised stigma among adolescents living with the human immunodeficiency virus (HIV) in Sub-Saharan Africa. It aims to establish predictors of internalized HIV-stigma among people living with HIV in Sub-Saharan Africa (Paper 1), develop an HIV-stigma scale for use with adolescents (Paper 2) and build and test a model of risk pathways for internalised stigma (Paper 3). The data used for papers 2 and 3 is part of the world's largest social science study of adolescents living with HIV (n=1060). <b>Paper One</b> systematically reviews evidence on the prevalence and predictors of internalised HIV stigma amongst people living with HIV in Sub-Saharan Africa. PRISMA guidelines were followed. An adapted version of the Cambridge Quality Checklist was used to assess the quality of the findings. A total of 18 papers were included. The prevalence of internalised stigma among adults living with HIV was 27% - 66%. The longitudinal predictors for internalised HIV stigma were poor HIV-related health and psychological distress. The review identifies two critical limitations of the literature. First, no studies on adolescents were found. One of the reasons for this may be the lack of a scale for measuring internalised HIV stigma in this population. Second, only individual-level risk factors for internalised stigma were examined. Papers 2 and 3 aim to address these limitations. <b>Paper Two</b> develops an HIV stigma scale with and for adolescents living with HIV. First, a multidimensional stigma scale previously used with adolescents in the US was cross-culturally adapted using semi-structured cognitive interviews with nine South African adolescents living with HIV. These data were interpreted through thematic analysis, and items were adapted in consultation with interviewees. Second, the revised version of the scale was administered to 1060 adolescents living with HIV. Confirmatory factor analysis confirmed the predicted 3-factor structure, and associations with hypothesised correlates provided evidence of validity. <b>Paper Three</b> develops and tests a model of risk pathways to internalised HIV stigma among adolescents living with HIV. Drawing on findings from the systematic review (Paper 1) and using the scale developed in Paper 2, both inter and intrapersonal pathways of risk from HIV-related disability to internalised HIV stigma were hypothesized. Following from modified labelling theory, interpersonal mechanisms were hypothesized to occur through maltreatment within power-unequal relationships, i.e. enacted HIV stigma and violence victimization. Hypothesized intrapersonal risks were anticipated HIV stigma and depression. Structural equation modelling enabled the grouping of theoretically related constructs and assessment of multiple, simultaneous pathways of risk. Prevalence of any internalised HIV stigma among adolescents living with HIV was 26.5%. As hypothesized, significant associations between internalised stigma and anticipated stigma, as well as depression were obtained. Unexpectedly, HIV-related disability, violence victimization, and enacted stigma were not directly associated with internalised stigma. Rather, indirect pathways via intrapersonal risks were observed. <b>Conclusions:</b> More than a quarter of adolescents living with HIV in this study reported experiencing some level of internalised stigma. Findings suggest a need to expand programmatic responses to internalised HIV stigma, from individualistic, clinic-based programmes to integrative, community-based approaches. Providing mental health support and reducing the maltreatment of adolescents living with HIV might interrupt pathways from HIV-related disability to internalised stigma. This highlights the potential for interventions that do not necessarily target HIV-positive adolescents but are sensitive to their needs. Such efforts must be coupled with rigorous process and outcome evaluations, and longitudinal data is urgently needed. It is hoped that the adolescent-friendly stigma scale developed within this DPhil will enable further research with this understudied population. Prior to this thesis, there were no known epidemiological studies of internalised HIV stigma among adolescents living with HIV. Moreover, the broader, adult-focused corpus of research has overlooked interpersonal risk factors. This thesis highlights the relevance of power inequalities and domination for the study of internalised HIV stigma.

O estudo investigou a experiência da maternidade em portadoras do HIV/Aids aos três meses de vida do filho/a. Participaram do estudo seis mães com idades entre 19 e 30 anos, de nível sócio-econômico baixo, recrutadas em uma Unidade de Saúde referência para HIV/Aids da Grande Porto Alegre. Três destas mães engravidaram sabendo que já eram portadoras da doença, enquanto as demais ficaram sabendo apenas na hora do parto ou logo após. Cada mãe respondeu a uma entrevista estruturada, realizada de forma semi-dirigida, e a um questionário sobre sua saúde e acompanhamento médico. Os relatos das participantes sobre a maternidade foram examinados através de uma análise de conteúdo qualitativa baseada em quatro eixos teóricos derivados da literatura: vida-crescimento, relacionar-se primário, matriz de apoio e, reorganização da identidade. Os resultados mostraram que as mães tinham muitas preocupações com a possibilidade de infecção do filho/a e com a saúde do bebê, além de sentimentos de incerteza quanto ao futuro, culpa e medo do preconceito. Estes temores pareciam mais intensos para as três mães que tiveram seu diagnóstico no momento do nascimento do filho/a. O estigma do HIV/Aids, a presença de conflitos familiares, instabilidade na relação com o pai do bebê, dificuldades em assimilar o diagnóstico e o tratamento, além de restrições sócio-econômicas e em sua rede de apoio exigiam um grande esforço emocional e uma reorganização familiar e subjetiva destas mulheres. As mães buscavam sustentar uma identidade forte, centrando suas preocupações na criança, evitando pensamentos negativos para enfrentar a doença e apoiando-se em modelos maternos positivos. Com isso, as mães procuravam assegurar uma relação de afeto e proteção do bebê e garantir seu desenvolvimento físico e psíquico. Discute-se a necessidade de apoio psicológico e de intervenções psicossociais com estas mães que lhes auxiliem a lidar com as preocupações com o filho/a, as dificuldades em aderir ao próprio tratamento e com o impacto do HIV/Aids nas suas relações familiares. / The present study investigated the experience of motherhood in HIV-positive women in the thirtieth month of the baby. Participated in this study six mothers, 19 to 30 years old, from low socioeconomic status, selected from a health center for treatment of HIV/Aids. Three of these mothers got pregnant knowing that they were infected, while the others were informed in the childbirth or soon after. Each mother answered a semi-structured interview, and a questionnaire about her health and medical treatment. Mothers’ accounts about their motherhood were examined through qualitative content analysis based on four themes derived of the literature: life-growth, primary relatedness, support matrix, and identity reorganization. The results showed that mothers were worried about having transmitted HIV to their baby and about his/her health. They reported uncertainty feelings concerning the future, guilt and fear of discrimination. These fears seemed more intense for the three mothers who had their diagnosis in the childbirth. Issues such as HIV/Aids-related stigma, family conflicts, instability in the relationship with the baby’s father, difficulties in assimilating the diagnosis and the treatment, socioeconomic difficulties and lack of support required large emotional strength and family and subjective reorganization of these women. The mothers tried to preserve a strong identity, concentrating their concerns on the child, avoiding negative thoughts about the disease and leaning on positive maternal models. Thus, the mothers tried to assure a relationship of affection and protection of the baby and to assure his/her physical and psychic development. The need for psychological support and psychosocial intervention with these mothers is discussed. This could contribute to deal with baby’s concerns, their treatment adherence, and with the impact of HIV/Aids on their family relationships.

No description available.

This thesis demonstrates that all of the practices which define and produce the Tswana family involve dimensions of risk, conflict, and crisis – glossed as dikgang (sing. kgang) – that also threaten to undo it. Dikgang need constantly to be addressed in the right ways by the right people, in a continuously adaptive process of negotiation. Efforts to negotiate dikgang are also fraught, and often produce further problems in turn. I show that Tswana kinship is experienced, generated, and sustained in a continuous cycle of risk, conflict, and irresolution; and that it creates and thrives on crisis. In a kinship system renowned for its structural fluidity, I demonstrate that these processes chart the limits of family, and define relationships within it. I further suggest that understanding kinship in these terms provides unique insight into the effects of public health and social welfare crises – like the AIDS epidemic – which may work to strengthen Tswana families, rather than simply destroying them. However, governmental and non-governmental interventions responding to such crises operate according to different assumptions about the stability and fragility of the family, and its incapacity to cope with crisis. The thesis argues that the frustrations such interventions typically face may be traced back to divergent understandings about what constitutes and sustains family, and the role of conflict and crisis in that process. The effects of such interventions are linked to the ways in which they enable, invert, disrupt, or bypass everyday practices of kinship among the Tswana, and instantiate practices and ideals of kinship from elsewhere. I argue that holding these intervening agencies and families in the same frame illustrates suggestive links between the spheres of kinship and politics on both national and transnational levels.