The ability to prevent vertical transmission of HIV (where HIV is transmitted from mother to (unborn) baby in utero, at birth or through breastfeeding) is generally considered to be the most successful achievement of HIV biomedicine and care. Indeed if appropriate care and biomedical technologies are available, transmission rates can be reduced to less than 1%. However, there has been very little qualitative research investigating the contingencies and requirements of specialist HIV antenatal care in resource rich settings. Adopting theoretical insights from Science and Technology studies (STS) and anthropology within a broader sociological frame, this research explores the challenges of HIV and the successful prevention of vertical transmission in a specialist antenatal clinic which arguably has access to the most advanced care and biomedical technologies. In doing so, the thesis investigates the way in which the identity of a particular illness — specifically HIV — is maintained in social, clinical and technical domains. Moreover, it explores the requirements of successful specialist HIV antenatal care from the perspective of both practitioner and patient, and it considers how the interests of patients, (unborn) babies and health professionals are reconciled, if at all, within the clinic. The description of specialist HIV and antenatal care provided in this study draws on empirical research conducted in an HIV specialist antenatal clinic housed within an acute National Health Services hospital in London, UK. The research makes a practical contribution to knowledge about specialist HIV antenatal care through theoretically informed reflections on some of the requirements and contingencies of providing and participating in specialist antenatal HIV care in London. Moreover, the research offers an analysis of the clinic that interrogates the relations between social dynamics, (bio)medical practice and technological interventions. In this way, the research also contributes to the social scientific HIV field by explicating how social understandings of HIV and pregnancy are intimately entangled with (bio)medical practice, technological intervention, and what I have called an “HIV diaspora”.

My thesis examines the effectiveness of a range of participatory theatre-based methodologies as tools for enabling young men to examine and interrogate dangerous formulations of masculinity. My hypothesis was that current applications of Theatre for Development in Malawi are woefully inadequate for the purpose of meaningfully engaging with young men in order to help them stay sexually safe and to examine their understandings of Malawian masculinities. Therefore, my study primarily set out to investigate what theatre forms can be impactful for engaging with young men to explore these masculinities that increase their, and their partners, HIV risk and to enable them to define themselves as male in alternative ways that mitigate high-risk sexual behaviours and violence against women. In chapter one, I discuss the history of popular theatre in Malawi. Chapter two analyses the existing problems with the teaching of TfD at Chancellor College and NGO TfD methodologies in contemporary Malawi. In chapter three, I discuss my practical theatre-based experiments on masculinity and HIV with groups of male students from two secondary schools (Mulunguzi and Dzenza) and one university campus (Chancellor), before concluding with the findings of my research. I argue that in Malawi young men are under social pressure to perform masculinities that increase their HIV risk, and that of their partners, in order to affirm themselves as men. They do this by taking on high-risk sexual practices such as not using condoms, having multiple sex partners and being violent towards women. It is my contention that unless young men are engaged to challenge and change these ‘deadly’ constructions of masculine gender identity the disease will continue to spread. My findings show that the methodology I experimented with impacted some participants; however, in order for meaningful change to occur this work needs to be further developed and boys and girls have to be engaged using creative and critical thinking to discuss sexuality, gender and HIV.

No description available.

The aim of this thesis was to identify some of the ethical issues of HIV positive asylum seekers and refugees participating in clinical trials in Britain. While all individuals are to some degree vulnerable in clinical trials, I have shown in this thesis that this group is particularly vulnerable in a number of areas. Many will not have English as a first language and while they may be able to understand everyday language, the participant information sheet (PIS) may be difficult to comprehend both in terms of language and content. Cultural aspects may also influence the individuals’ participation in a clinical trial. Many will have come from a hierarchical culture where it would be unthinkable to refuse to participate if requested to do so by someone of a higher social status, such as physicians. Individuals may also be reluctant to decline an invitation to participate in a clinical trial if asked to do so by their own clinician, if they are reliant on him/her to provide letters of support for the immigration authorities.

This thesis is concerned with understanding the patient flow from diagnosis of HIV infection to initiation of antiretroviral therapy (ART). Untreated HIV-infected individuals have a high risk of progression to AIDS and death, and of transmitting infection to others. Interventions to ensure prompt linkage into HIV care and ART could have substantial individual and public health benefits. At the turn of the millennium, very few HIV-infected individuals in sub-Saharan Africa had access to lifesaving ART. Since then, national HIV care programmes, supported by international funding, have driven impressive achievements in scaling up ART delivery, with over 9 million people having initiated ART by the end of 2012. Despite these achievements, the majority of HIV infected adults in sub-Saharan Africa remain unaware of their HIV status, meaning that they do not have the opportunity to access ART. Additionally, concerning reports have arisen from a number of HIV care programmes about high rates of patient drop-out and death between diagnosis of HIV and ART initiation. Together, these factors could significantly hinder efforts to achieve universal knowledge of HIV status and coverage of ART. The uptake of HIV testing, and magnitude of and reasons for drop-out of care between HIV diagnosis and initiation of ART were investigated in a prospective cohort study and linked qualitative study at primary care level in Blantyre, Malawi. The main findings were of extremely low uptake of provider-initiated HIV testing and counselling (completed on only 13% of adult facility attendances) and high rates of patient loss to care before ART initiation. Difficulties in completing ART eligibility assessments (WHO clinical staging assessments and measurement of CD4 count) were the major barrier to successful initiation of ART, with over-busy clinics, rushed providers, as well as high patient care- seeking expenses being significant contributory factors. Other sub-Saharan African countries that have implemented the public health approaches to HIV care delivery are likely to face similar problems. To attempt to improve uptake of HTC and linkage into ART care, two novel interventions were investigated. A community-based cluster-randomised trial compared two approaches to improve linkage into HIV care: facility-based initiation of HIV care following home HIV self-testing (HIVST), or optional home initiation of HIV care following HIVST. Uptake of ART, completion of HIVST, reporting of positive HIVST results and retention on and adherence to ART were the outcomes of interest. Over 6-months of HIVST availability, there was a highly significant 3-fold increase in the proportion of the adult population initiating ART, and a doubling of the proportion of adults reporting positive HIVST results to community counsellors where home initiation of HIV care was available, indicating increased willingness to access home-based HIV care. Having identified substantial problems with the use of the WHO clinical staging system for identifying ART eligibility, the accuracy of a brief novel community health worker (CHW) ART eligibility assessment tool was compared against a gold standard of CD4 count. The CWH tool significantly outperformed the WHO clinical staging system in identifying CD4 count of <350 cells/mm3 in terms of sensitivity, positive predictive value, negative predictive value and area under the receiver operator characteristic curve. Nevertheless, overall performance of the CHW tool was still suboptimal with nearly half of ART eligible participants missed, and was worse when compared against the new WHO-recommended ART eligibility threshold of CD4<500 cell/mm3. In conclusion, suboptimal rates of facility-based HTC and subsequent linkage into care are potential major stumbling blocks in efforts to achieve universal access to ART. Current ART eligibility tools are either not widely available (CD4 count measurement), or are insensitive, overly-complex and time-consuming (WHO clinical staging system). Home initiation of HIV care following community-based HIVST overcomes these barriers, with high uptake of HIVST achieved over short time-frame and substantial and significantly increased population-level rates of ART initiation. In an era where “test-and- treat” is increasingly being seen as a strategy to impact upon the HIV epidemic, interventions that improve uptake of testing and linkage into care, such as home HIVST and initiation of HIV care, will be required.

Background Despite recent progress in enhancing the accessibility of HIV-related health services worldwide, opportunities to diagnose patients are often missed due to genuine barriers at different levels. The aim of this study is to explore the factors that affect the uptake of HIV testing by young people in Saudi Arabia. Methods A sequential mixed methods design was used to reveal the factors that influenced HIV testing among young people aged 17-25 years. In terms of the quantitative strand of the study, a descriptive cross-sectional design was applied to identify the relevant and context-specific factors that influenced HIV testing among Umm- Al Qura University students. The students were selected using a convenience sampling technique. Self-completed online questionnaire was used. The questionnaire consisted of 52 items: 12 items for HIV/AIDS-related knowledge, 3 items for risk perception, and 37 items for attitudes toward HIV testing. For the qualitative strand of the study, semi-structured interviews were used to gather the perspectives of healthcare professionals working in the field of HIV/AIDS in the country. Results Three hundred and ninety four participants completed the questionnaire: 116 (29.4%) male and 278 (70%) female. 50.5% of the participants were aged from 20 to 22 years, 34.8% were 17-19 years and 14.7% were aged between 23-25 years. Only 20 (6%) participants had previously been tested for HIV. The main reasons for not being tested for HIV were: exposure to HIV was considered unlikely (48%), the HIV test was not offered (36%), and a lack of awareness of the locations of HIV testing centres (16%). With regard to HIV/AIDS-related knowledge, the male participants scored higher than the females as the mean score for males was (M = 6.4, SD = 2.4) while for females it was (M = 5.7, SD = 2.5); however, this difference was not significant. In terms of risk perception, female participants had lower levels of risk perception than male participants, with the mean score for males being (M = 11.7, SD = 2.5) and (M = 10.5, SD = 2.4) for females; this difference was statistically significant p < 0.01. The female participants showed slightly more positive attitudes towards HIV testing than male participants: the mean score for males was (M = 108.14, SD = 17.9) and was (M = 111.32, SD = 17.3) for females. However, this difference was not significant. Healthcare professionals who were interviewed indicated stigma, an HIV/AIDS knowledge gap and fear of the consequences of a positive result as the main factors hindering the uptake of the HIV test. Conclusions Knowledge, attitudes and HIV risk perception are critical factors that inform the decision to undertake HIV testing. However, socio-cultural constraints constitute a significant additional burden that hinders the efforts to scale up the HIV testing uptake in Saudi Arabia.

Background: After three decades, Human Immunodeficiency Virus (HIV) continues to pose significant threats globally. The efforts to curb the HIV epidemic have required investment in research, with clinical trials being a major focus, to develop HIV prevention, treatment, and cure interventions. A large portion of such research has been undertaken within low income settings, due to the high burden of HIV and the availability of willing volunteers within this setting. HIV research calls for the implementation of ethical research practice which is informed by policy guidelines. However, current policies are largely informed by inputs from high income countries, and lack the voices of those closely involved in research implementation. In order to contribute to ethics policy development in HIV research, it is essential to involve different stakeholders by exploring their experiences/views on the issue. Existing research in this field has mainly explored experience of recruitment and trial conduct, while very little has been done on trial closure, indicating a significant evidence gap worth exploring. This research therefore sought to illuminate, explore and understand the significant issues regarding the care of HIV positive drug trial participants during closure of HIV clinical trials, within a low income setting, specifically, Uganda. Study aim: The study aimed to explore how care is perceived and enacted in HIV drug trial closure in Uganda, by addressing the following specific objectives: 1. From the perspective of research participants and research staff, to explore the views, opinions and understandings of the ethical/legal/moral post-trial obligations in HIV drug trials. 2. From the perspective of research staff, to explore the experiences, practices and processes related to care for HIV drug post-trial participants in a low income setting. 3. From the perspective of research participants, to explore the experiences of care at trial closure. 4. From the perspective of research participants, to explore the experiences of transitioning from HIV research to care/community. Methodology: The study adopted an interpretive-constructivist approach, and employed a social constructivist grounded theory methodology. The study included a total of 21 trial participants and 22 research staff from three different HIV drug trials, in two Ugandan research institutions. In addition, relevant ethical documents were reviewed from two of the included trials. Data collection and analysis followed the principles of grounded theory, with data collection and preliminary analysis being undertaken concurrently, and earlier data informing subsequent data collection. Data collection strategies included individual interviews, focus group discussions, and key informant interviews. Data was collected over a period of 10 months, from October 2014 to August, 2015. NVivo10 software was used to manage the data. Ethical approval was received from the University of Nottingham UK and The AIDS Support Organization (TASO) Uganda, Research Ethics Committees (RECs). The study was registered with the Uganda National Council for Science and Technology (UNCST), as SS 3608. Permission to conduct the research was granted by the respective research institutions, and written informed consent was received from all respondents. Findings: The findings showed that trial closure was often stressful for HIV positive participants in Uganda, and often resulted in negative psychological, socio-economic and health impacts. The negative effects mainly resulted from being stopped from accessing research related health care, which was of a significantly higher quality, and the inability to find alternative care to match the research standards. The main concerns which arose during the transition process of participants from HIV drug trials to usual care facilities include: the loss of the quality care and valued relationships in research, the need to find and link to alternative care facilities, the need to meet the increased financial needs, and worries about the effects/outcomes of research participation. These concerns demanded a range of additional care and supportive strategies from researchers (and other stakeholders). A conceptual model, the model of ‘Facilitated Transition’ was developed, which summarises the findings of this research and provides a diagrammatic representation of the research findings, showing the links and relationships between the different elements. The research established that the transition of HIV positive trial participants from research to usual care facilities is a process, which appears to consist of three overlapping phases. These phases include: The pre-closure phase which represents events occurring before the actual trial closure but that underpin post-trial care, the trial closure phase which is the active phase of the closure, in which trial participants are prepared and exited from the trials, and the post-trial phase which represents the events occurring after trial participants have been linked to post-trial care facilities until 12 months later. These phases are demarcated by specific time points, which reflect how the transition process evolves, proceeds and concludes. At the various phases of the process, specific concerns (care needs) arise, being influenced by the participants’ previous care experiences and perceptions, plus their health and socio-economic positions. Specific actions are required to proactively facilitate trial participants during these phases. These actions are underpinned by the perceived ethical and moral responsibilities of the researchers, and are principally aimed at establishing a continuum of HIV care and treatment after trial closure, promoting positive care experiences for trial participants during the transition, and enabling the settlement and adaptation of trial participants to care in the public healthcare system. Conclusions: This is the first known study to investigate perspectives on post-trial care among HIV positive trial participants in a low income setting, from those closely engaged in the research process. This study has provided novel contributions in the area of HIV research ethics and post-trial care in general. The study has established that trial closure involving HIV positive participants raises significant ethical, moral and practical concerns in the Ugandan context. The findings further demonstrated that current post-trial care practice does not meet all the care needs of the HIV positive trial participants. Existing ethical recommendations on post-trial care place an emphasis on the need to ensure access to trial drugs and provision of trial results, where as less attention is given to other important aspects, as revealed in this research. To meet the post-trial care needs of HIV positive participants in Uganda, a comprehensive trial closure strategy is required. In addition to the already existing aspects of post-trial care, the new strategy should aim to: (i) address the financial needs of trial participants through financial assessment, support and empowerment, (ii) provide practical support during linkage to post-trial care, and (iii) offer post-trial follow-up to monitor and support the participants. Implementing these recommendations may require involvement of various stakeholders, including researchers, ethics authorities, research funders and donors, public healthcare workers, families, trial participants, and the community. Recommendations for future research: Further research is required to ascertain the rates of linkage to care, and to assess the health outcomes of post-trial participants following trial exit. In addition, a study to target the views of other stakeholders, such as the public healthcare facility workers, the family, and ethics authorities on post-trial care may be essential to understand better the ways in which to support HIV positive trial participants in Uganda. Furthermore, a longitudinal prospective study on a larger sample is required to test the model proposed in this research. And finally, there is need to deliberate more on the ethical and moral implications of financial benefits in HIV research involving HIV positive participants in a low income setting.

Context HIV/AIDS continues to be a global problem; by 2013, there were 35.3 million people infected globally. Sub Saharan Africa (SSA) continues to be disproportionately affected with 70 percent of all cases, 73 percent all deaths, and 70 percent of all new infections. Although some progress has been made in the response to the epidemic, major challenges remain. For example, even though new infections have been declining in some countries, these are being offset by increases in others. Uganda is one of the countries where HIV infection rates have been increasing in the last 15 years, from 6.2 percent in 2000 to 6.4 percent in 2005 to 7.3 percent in 2012. Much as SSA is disproportionately affected by HIV/AIDS, the region has received considerable research attention, including the association between HIV/AIDS and socioeconomic status (SES) and sexual and gender based violence (SGBV). However, there continues to be controversy surrounding the effect of SES and SGBV on the vulnerability of individuals to the risk of HIV infection. Aims and research questions To contribute to the above debates, this research utilises Bourdieu’s Socio-Structural Theory of Practice (STOP) which argues that individuals are born into a field, which structures their habitus or world view but the field in turn is structured by habitus. To operationalize this theory, this research answers the following broad question, what is the influence of social factors on vulnerability and risk to HIV infection in Uganda? And the following specific questions: (1) what is the effect of SES (wealth status & educational attainment) on people’s vulnerability to the risk of HIV infection in Uganda? (2) What is the effect of SGBV on vulnerability to the risk of HIV infection in Uganda? And, (3) what are the effects of social and structural factors on vulnerability to the risk of HIV infection in Uganda? Data and methods This research was based on a nationally representative sample of 22,979 women and 18,418 men of reproductive age from 20,869 households with 33,692 rural and 7,705 urban respondents in Uganda. The analyses were based on the application of Multilevel Logistic regression models to 2004-05 and 2011 Uganda AIDS Indicator Surveys, fitted in MLwiN. Chapter 5 about the influence of SES on HIV infection and Chapter 6 on the influence of community factors on HIV infection are based on pooled data of 2004–05 and 2011 surveys but Chapter 7 on the influence of SGBV on HIV infection is based on only the 2011 data. Key findings The results provide little evidence of a significant overall association between household wealth and HIV infection. However, there is some indication of increased risk among those in wealthier households that is explained by sexual behavior factors. The increased vulnerability of individuals in wealthier households is particularly apparent for women and rural residents. On the other hand, individuals with higher educational attainment have reduced odds of HIV infection. Those with secondary or higher educational attainment have 37 percent lower odds of being HIV-positive compared to those with no education in the general population when other socio-economic, socio-demographic, and socio-sexual factors are controlled for, and secondary or higher education is more effective in reducing vulnerability in urban than rural areas, and in 2011 than 2004–05. However, incomplete or complete primary educational attainment is associated with increased odds of being HIV-positive in both 2004/5 and 2011 and among rural residents, when important socio-demographic and sexual behavior factors are controlled for. Sexual and gender based violence is associated with increased vulnerability to HIV infection by 34 percent at the individual-level. Besides individual-level effects, community-level SES and SGBV are also important determinants of HIV vulnerability. When both community and individual-level factors were controlled for, living in a community with a higher proportion of wealthy households was associated with increased likelihood of being infected with HIV compared to living in communities with a lower proportion of wealthy households. For social factors, living in an area with higher proportions of: formerly married people, and people who were drunk with alcohol before unsafe sex was also associated with an increased likelihood of being infected with HIV compared to living in areas with lower proportions of people with these practices who had similar other characteristics. However, living in communities with a higher proportion of polygamous men was associated with a lower likelihood of being infected with HIV compared to living in communities with a lower proportion of polygamous men. Overall, community factors account for 10 percent of total variation in HIV prevalence. Conclusions and policy implications Individual-level and societal factors are both important in creating vulnerability to the risk of HIV infection in Uganda. These conclusions are largely consistent with Bourdieu’s theoretical and methodological principles and have broad implications for the HIV/AIDS response that presently pays less attention to societal determinants of HIV vulnerability. To effectively prevent HIV infections, HIV/AIDS policies need to recognize the micro, macro, and complex nature of the AIDS epidemic in Uganda. Attention needs to be paid to how household and community wealth, educational attainment and SGBV influence vulnerability to the risk of HIV infection in Uganda and perhaps, similar settings elsewhere.

Background: The immunological as well as the psycho-social impact, of living with HIV/AIDS transform HIV/AIDS into a multidimensional process. Stigma and discrimination against people living with HIV/AIDS (PLWHA) are proposed as hostile scenarios increasing hopelessness and reducing perceived and real social support affecting people’s health status. Peer support strategies are proposed as key factors for dealing with this scenario; additionally, socio-cultural variables may determine the provision and perception of social support. Objectives: To enhance the understanding of the process of living with HIV/AIDS and the role played by social support and to suggest cooperative strategies for dealing with stigma and discrimination against PLWHA to improve people’s health. Sample and method: Five studies were conducted studying 37 HIV positive members and non-members of peer support organisations (PSOs) in Chile and England; nine healthcare professionals working with PLWHA; and three spokes persons from PSOs of PLWHA from Romania, England and Chile. Results: PSOs of PLWHA, which reflect a cooperative strategy used by PLWHA to deal with stigma and self-provide social support, appear to play an important and underexplored role in PLWHAs’ health status; this relationship is also affected by socio-cultural characteristics. A measure of PSS was developed and theoretical analysis lead to a linkage with Maslow’s hierarchy of needs. Personality characteristics were found critical for the success of PNI based interventions. Conclusions: Living with HIV/AIDS involves psychological and social complications. PSOs are a powerful cooperative strategy improving quality of life and general health; however, further research is needed to establish the real impact of PSOs over HIV+ people. Implications: The peer-support strategy of PSOs is a powerful but underused clinical strategy. Healthcare teams and PLWHA may benefit from including this strategy if cooperative work is carried out with PSOs.

This thesis discusses the link between men’s HIV treatment seeking behaviour and their masculinity. It is based generally on ethnographic research conducted in Busia district, rural eastern Uganda, and specifically on 26 interviews conducted between 2009 and 2010 with different categories of men: treated for HIV, tested but dropped out of treatment, not tested but suspect HIV infection, and those with other health problems unrelated to HIV. The study explored how masculinity is constructed and discussed among the men from the Iteso ethnic group, how those notions of masculinity influence men’s uptake of HIV treatment, and how HIV diagnosis and/or its treatment, in turn, affects men’s perception of their masculinity. Thematic framework analysis identified recurrent themes and variations across the data. The thesis argues that there are, essentially, two forms of masculinity in rural Uganda, one based on reputation, the other on respectability, and that these emerge in different contexts, and have different effects on men’s behaviours regarding HIV testing and treatment. Respectable masculinities are endorsed largely by the wider society, while reputational masculinities are endorsed predominantly by the men themselves, although some ideals are shared by both. Theoretically, this categorisation is consistent with the distinction between the value systems of respectability and reputation as described by PJ Wilson (1969). Men’s dividuality (Helle-Valle 2004), allowed them to, unproblematically, adopt the different and sometimes contradictory, forms of masculinity, in different social circumstances and phases of life. Individual men can engage in a variety of HIV treatment seeking behaviours that typically correspond with different masculine ideologies and dividualities; some discouraging treatment seeking for HIV, others encouraging it. On the one hand, acknowledging illness is incompatible with men’s notion of strength. Being diagnosed with HIV threatens respectability and ability to work and earn an income, hence treatment is delayed, while couple testing threatens men’s freedom to engage in extramarital sex. On the other hand, HIV treatment may be undertaken and adhered to, in order to regain and maintain health, so as to fulfill family and societal expectations, notably that of provider and being a role model. Through the core themes of ‘dented’ and ‘resuscitated’ masculinities, this study suggests that HIV diagnosis negatively affected masculinity while treatment led to more positive ways to express masculinity.