HIV in the UK in the 1980s was concentrated within men who have sex with men (MSM) and people who inject drugs (PWID) but heterosexual sex is now the most frequently reported risk behaviour. As these risk groups are associated with different virus populations, this is reflected in the subtype diversification of the UK epidemic, which was historically dominated by subtype B. I have made use of a national database of HIV sequences collected during routine clinical care, which also contains data on age, sex, route of exposure & ethnicity. The 2014 release of the UK HIV Drug Resistance Database contained data from over 60,000 patients. In this thesis, I first describe the development of novel tools that rapidly and automatically identify HIV clusters within phylogenetic trees containing tens of thousands of sequences because they represent transmission chains within the larger infected population. I use these tools to compare the HIV subtype B epidemics in the UK and Switzerland, which had both been described separately but using different approaches. Working with Swiss colleagues, I was able to analyse the epidemics in exactly the same way without having to share sensitive data. I found clustering in the UK to be much higher at relaxed thresholds than in Switzerland (34% vs 16%) indicating that the UK database is more likely to capture transmission chains. Down sampling revealed that this pattern is driven by the larger size of the UK epidemic. At tighter cluster thresholds, the epidemics were very similar. I next use these tools to analyse the spread of emerging subtypes A1, C, D and G in the UK. I found both risk group and cluster size to be predictive of cluster growth, which I tested using simulations and a GLM. Growth of MSM and crossover clusters was significantly higher than expected for subtypes A1 and C, indicating that crossover from heterosexuals to MSM has contributed to their expansion within the UK. Numbers were small for subtypes D and G but the proportion of new diagnoses linking to MSM and crossover clusters was similar to A1 and C, suggesting that the same pattern may be emerging for D and G. I conclude by evaluating the accuracy of a method previously described by our group to generate transmission networks from HIV sequences. The interpretation of clustering patterns from phylogenetic trees is difficult because of the absence of a standardised statistical framework. In contrast, a body of work exists that relates disease transmission to networks. Using large simulated datasets, I developed algorithms which eliminate improbable links. I then reconstructed improved UK transmission networks for subtypes A1, B and C and compare network metrics (such as the degree distribution) between risk groups. Together with other evidence, this thesis demonstrates that the UK HIV epidemic continues to be driven by transmission among MSM. The UK epidemic is no longer compartmentalised and the crossing over of subtypes across risk groups has been facilitated by MSM also having sex with women.

Despite the clinical need for children living with human immunodeficiency virus (HIV) to access and adhere to antiretroviral treatment (ART), rates globally remain roughly half that of adults. Although the structural barriers to accessing HIV and health services are well studied, further research into the psychological and social factors underscoring children’s limited access to HIV care is needed to facilitate scale up amongst health service users and providers. Using a social representations theoretical approach, this thesis examines the interplay between psychological and social factors concerning children’s HIV service uptake in a community setting. A qualitative research study was conducted in Kabarole district, Uganda with 60 adults, including 15 health care workers (HCWs) and 45 adult carers of children, and 82 children (N=142). Methods of data collection were individual interviews, focus groups, a draw-and-write exercise, and participant observation in the main local health clinic setting. A thematic content analysis reveals multiple cross-cutting factors which mediate HIV service usage. For HCWs, despite challenging working conditions, the impact of ART has been positive both professionally and personally. Adult carers, however, continue to be negatively impacted by social stigma against HIV, and fears of potential negative consequences resulting from revealing an HIV-positive status influence their uptake of HIV services. For children, the pervasiveness of HIV in their society, and its negative personal and social impact, has created a sense of fatalism and resignation over potential HIV infection and future suffering. At present, the clinical practice environment does not provide a supportive space for these representations to be openly addressed by health service providers or users. Drawing from these findings, the thesis concludes that in order to increase children’s ART access and adherence, more supportive clinical and social environments will need to be jointly created by health service users and providers, through the building of social capital and increased social trust and cohesion between stakeholder groups. Failing to do so may result in continued low or even decreased HIV service usage for children, particularly in light of recent national legislation which may lead to further entrenchment of HIV stigma against socially vulnerable groups.

Background: It is widely acknowledged that Uganda was the first country in sub-Saharan Africa to experience a significant decline in HIV seroprevalence in the 1990s. Framed as the initial ‘success story’ in the history of the global HIV/AIDS pandemic, the behavioural mechanisms and policies accounting for the Ugandan HIV decline have been extensively debated over the past 25 years. With reference to broader debates about the role of evidence in policy, this thesis aims to examine contested explanations for the decline in HIV prevalence in Uganda and the role of evidence in the development of global HIV prevention policy in the 1990s. The thesis examines diverse explanations for Uganda’s HIV decline and how these came to be framed in the context of the emergence of Second Generation Surveillance (SGS), a global HIV/AIDS surveillance framework introduced by UNAIDS/WHO in 2000. Official accounts describe SGS as having been developed on the basis of Ugandan behavioural evidence presented during a key meeting of HIV/AIDS policymakers which took place in Nairobi in 1997. This meeting provides a focal point for examining the role of evidence in global HIV prevention policy and the relationship between evidence and policy pertaining to low income countries in the 1990s. Methods: A review of UNAIDS/WHO documents and 29 in-depth interviews with HIV/AIDS experts from Uganda and international organisations were analysed. Results: UNAIDS documents present SGS as a technocratic, problem-solving response to limitations in established HIV surveillance approaches, developed at a UNAIDS-sponsored workshop in Nairobi, Kenya, in 1997. These official accounts present the emergence of SGS as evidence-based and reflecting a clear consensus that developed during the Nairobi workshop. While interview data suggest agreement around the need for improved HIV surveillance systems, they indicate a more complex picture in terms of the extent to which SGS was evidence-based and highlight contested interpretations of this evidence among HIV experts. Findings from interviews suggest that the introduction of SGS by UNAIDS/WHO may be understood as serving both technical and broader strategic purposes. As indicated in UNAIDS/WHO policy documentation, SGS was intended to improve older global HIV surveillance methodologies via the triangulation of multiple data sources. The introduction of SGS also appears to have served two broader purposes, functioning as something akin to a marketing tool to help promote the institutional identity of UNAIDS, while also signalling a shift towards a ‘multisectoral’ approach that aimed to unify epidemiological and social scientific disciplinary approaches. While interviewees’ accounts coincide in describing a decline in HIV prevalence during the 1990s, they present divergent interpretations of this evidence which became significant in the development of SGS. One interpretation focused on a reduction in multiple partnerships within the Ugandan population as the key change driving the decline in HIV prevalence, while a contrasting explanation focused on increased use of condoms as the primary cause of this decline. Interviewees’ accounts suggest a process of competition, whereby different actors sought to secure the primacy of their interpretation in institutional understandings of Uganda’s HIV decline and in the development of SGS. Claims of disciplinary bias and institutional marginalisation appear to have contributed to the subordination of explanations focused on a decline in multiple sexual partners, while the policy entrepreneurship of one key actor appears influential in explaining the ascendency of explanations focused on increased condom use. Despite these contestations around the evidence used to inform the development of SGS, UNAIDS documents and peer-reviewed publications from this period emphasise one interpretation (that of increased condom uptake) which thus appears as the official explanation for the success of HIV control in Uganda. The transition from the WHO’s Global Programme on AIDS (GPA) to UNAIDS, and the initiation of a multisectoral HIV prevention approach, appear as important contextual and institutional influences in the interpretation of evidence for Uganda’s HIV decline. The failure of the partnership reduction explanation to align with the evolving institutional and political orthodoxy, and the potential for this explanation to challenge UNAIDS’ new focus on multisectoral HIV prevention, may help to explain why it did not inform subsequent HIV/AIDS policy and does not appear in official accounts of SGS’s development. In contrast, explanations focused on increased condom use were consistent with UNAIDS’ HIV prevention policy agenda (including its emphasis on multisectoral approaches) and appeared to reinforce the organisation’s need for increased financial resources to mitigate HIV/AIDS via the distribution and promotion of condoms. Discussion: This study demonstrates that the development of SGS, and the politics of evidence supporting its introduction, are more complex than existing UNAIDS/WHO accounts describe. Official explanations of the development of SGS provide a simplistic account of how evidence informed policy in a linear and rational way. In contrast, findings from this thesis suggest that SGS served multiple policy functions (i.e. marketing, promotion of institutional credibility, and a demonstration of disciplinary integration) in the context of the recently-formed UNAIDS, and that the role and interpretation of evidence in this context were highly contested. Consistent with the work of Kingdon (1995) and more recently Stevens (2007), this study suggests that personal, political and institutional factors play important roles in shaping how evidence is presented and linked with policy. These findings suggest that more nuanced understandings of the relationship between evidence and policy are needed to explain HIV/AIDS policy development within both sub-Saharan African and at a global level.

The availability of antiretroviral treatment (ART) is enabling people living with HIV or AIDS (PLWHA) to reconsider their sexual and reproductive lives. The sexual and reproductive health (SRH) decisions that PLWHA make have implications for HIV transmission and prevention. Yet very little is known about SRH of PLWHA in subSaharan Africa, as studies as well as prevention strategies have historically neglected them and SRH matters are often not part of HIV/AIDS treatment and care services. This study looks at how HIV-positive men and women negotiate their sexual and reproductive lives and the barriers to the realisation of SRH needs in Nairobi slums. This study employs a mixed methods study design involving both quantitative (survey n=513) and qualitative (in-depth interviews n=41 and key informant interviews n=14). Respondents were systematically recruited from the community in two slums in Nairobi for quantitative interviews, a subset of which was followed on for in-depth interviewing. Quantitative analyses include univariate, bivariate and multivariate logistic regression modelling. Qualitative data were transcribed, and coded and thematically analysed. SRH outcomes of the study include sexual activity/inactivity, condom use, multiple sexual partnerships, fertility intentions, contraceptive use and unmet need for family planning. Quantitative and qualitative components of the entire study are integrated throughout both analysis and interpretation. The findings show that the SRH outcomes of PLWHA are somewhat different from the general population, but similar with other PLWHA in similar settings. Condom use at last sex is high although consistent use is an issue. PLWHA exhibit fertility desires and contraceptive behaviour that is more geared towards limiting fertility, but face barriers, and hence the high unmet need for contraception. The SRH outcomes are shaped by demographic (e.g. age, parity), socio-cultural (gender, societal norms)relationship (disclosure, intimacy, pleasure) and health factors (ART use, duration of HIV and side-effects and health concerns). Their SRH outcomes are reflective of their efforts for social approval. However, there is a conflict between social validation and moral pressures for HIV prevention presenting a dilemma to many about “proper” SRH behaviour in the ART era. There is need to include SRH counselling and services as part of the standard HIV treatment and care services for PLWHA.

Due to the improved availability of highly active antiretroviral therapy (HAART) life expectancy amongst people living with HIV has drastically increased. Older people, aged 50 and over now make up the fastest growing group of individuals living with HIV in the UK. Despite this little is known about their experiences of ageing with HIV. In addition, further still is known about older Black African women living with HIV in the UK, despite the complexity of their social and political context. This was, therefore, the first study to explore the lived experiences of this underrepresented group of women. The thesis adopted a phenomenological approach to examining how the intersections of older black African women's identities shaped their experiences of living with HIV in the UK. In addition, it explored the ways in which they coped with the devastating impact HIV appeared to have on their lives. Using interviews with seven women and interpretative phenomenological analysis, the results revealed three master themes. These were 'Spoilt Identities', 'A present without light and a future without hope' and 'Escaping the labyrinth of distress and uncertainty'. A detailed account of these master themes is provided. The findings are discussed in relation to existing literature, implications for clinical practice, methodological limitations and suggestions for future research.

Background: HIV has been reconceptualised as a long term chronic health condition due to advances in highly active antiretroviral therapy. Nonetheless it remains a stigmatising and under-recognised condition. One social group that HIV disproportionately affects is the Black African population. However there is a dearth of research into the lived experiences of HIV positive Black African communities in the U.K. specific to parenting. Objectives: This study seeks to explore the lived experience of Black African HIV positive fathers, living in the UK. This is of significance to counselling psychologists because illness representation models typically neglect the interactions of significant others and wider social contexts when conceptualising the impact of illness. Design: This research utilises a qualitative method, Interpretative Phenomenological Analysis (IPA) to examine data. IPA is effectual in new and complex areas of study, concerning identity and meaning making. It enables the researcher to acquire an 'insider perspective' into people's cognitive reasoning as well as the social and cultural context surrounding experiences. Method: Six Black African HIV positive fathers were recruited via HIV charities. Participants were requested to attend a 60-90 minute, semi-structured interview and asked questions about their experiences of living with HIV and how it impacts on their role as fathers. Results: Four super-ordinate themes were identified: 1) Responses to HIV diagnosis-the demise of the physical and social self 2) HIV stigma-'they don't realise that anyone can get it' 3) Re-emergence of the self 4) Fatherhood- a changing identity. The results revealed experiences of living with HIV and the impact that this has on their role as fathers. Participants talked about their initial reactions and responses to receiving a diagnosis of HIV, as well as the challenges of living with HIV within their communities and wider society that impacted on their disclosure decisions. The research highlights the significance of HIV support services that helped participants to accept their HIV status. The participants wished to play a key role in the lives of their children. The findings of this study emphasise the importance of incorporating interventions that help black African men to view themselves in a positive light and to foster their parenting role following a diagnosis of HIV. The results of the analysis are considered in light of existing theory and their clinical implications.

Background Nutrition and food security are important for maintaining a strong immune system and good general heath of People Living with HIV/AIDS (PLHA). The main aim of this study was to survey the nutritional status, habitual diet, dietary knowledge and demographic characteristics of PLHA in Nepal. A second aim of this study was to explore the voices of PLHA and policy level people on the current and possible future nutrition intervention programmes for PLHA in Nepal. Methods Using mixed methods (quantitative and qualitative) research techniques, 601 (M: 314 and F: 287) HIV positive people from the Kathmandu valley and Terai highway regions of Nepal were recruited and completed the study. All participants completed an interviewer administered questionnaire. This questionnaire includes an assessment of habitual food intake using a newly developed and validated 45-item semi-quantitative food frequency questionnaire. The validity of the FFQ was previously assessed against the 24-h multiple pass dietary recall in a sub-sample of the study population. Socio-economic and demographic information, dietary/nutritional knowledge, height, weight, waist circumferences and skinfold thickness were also collected. Finally, reported food intake was converted into energy and selected nutrient intakes (fat, protein, carbohydrate, iron, vitamin A and vitamin C) by linking with a newly compiled nutrient database of 116 food items for Nepal. Nutritional knowledge and perceptions of the current Nepalese nutritional supplementation and possible alternative interventions were explored using qualitative techniques. Four focus group discussions (FDG) and 11 in-depth interviews were carried out with PLHA and key local stakeholders respectively. Results The newly designed semi-quantitative FFQ can retrospectively assess the group mean intake for energy, protein, fat, carbohydrate, iron, carotene and vitamin C as there was no significant difference for reported intakes (all p > 0.2), but mean fat intake was significantly lower when determined by the FFQ than the 24-h recall (p < 0.001). The average age of participants was 33.8±6.4 years (mean ±SD) and 29% were classified as underweight (BMI < 18.5kg/m2). The study population typically ate a plant-based diet and intake of animal products was low, the energy intake of men and women was 1960±195 and 1880±261 kcal/d mean (±SD) respectively. Fat, protein and carbohydrate contributed 12%, 10% and 79% to total energy intake respectively. Iron and vitamin A intakes also tended to be lower than recommended, whereas vitamin C intake was satisfactory. Most participants (82%) believed that PLHA need a special diet but less than half of those reported changing their diet after diagnosis. A major reason for this was restricted income: 46% of participants reported being unable to afford sufficient food for the whole year, and 57% of those reported borrowing food for more than four months a year. Participants from FGD and in-depth interviews were not satisfied with the daily food and nutrient intake by HIV positive people. The Nepalese government currently provides a nutritional supplement for PLHA mainly for those who are on anti-retroviral treatment (ART). However, this was not satisfactory with the majority of volunteers reporting suffering negative health effects, including diarrhoea and vomiting, after consuming the supplement. Similarly, poor quality packaging, storage, delivery and lack of nutritional expertise and education were frequently reported problems for the proper implementation of the existing supplement. The participants suggested a nutrition intervention, based on a locally produced supplement, combined with dietary education and were highly motivated to support the development, implementation and evaluation of a new intervention. Conclusion Food and nutrient intakes by PLHA in Nepal were not adequate and did not meet dietary recommendations. Overall, the quality of the current nutritional supplement is poor and not suitable for ensuring maintenance of PLHA health. A nutrition intervention trial based on locally produced fortified mixed grain flour was favoured by PLHA and key stake holders. However, further research is needed to improve the nutritional status of PLHA in Nepal. Therefore, the evidence identified by this study could be used to inform the design of a new intervention. However, further research is recommended to clarify the issues.

A group multicomponent positive affect intervention for individuals with HIV was conducted with seven participants accessing an inner-city charity providing support for this population. The intervention ran over eight weeks and included a number of skills which have previously been found to improve positive affect. Outcomes were measured using quantitative scales of affect and mindfulness, and qualitative follow-up interviews. Following the intervention, positive affect and mindfulness significantly increased, and a variety of other subjective changes were also reported, although more sessions or booster sessions may have maintained these changes more effectively. These findings are in keeping with previous studies exploring the impact of multicomponent interventions with chronically ill populations. The limitations of these findings are discussed, and suggestions are made for future research, including having a larger number of participants and more carefully controlled studies.

The aim of this study was to explore what it means for London-based, immigrant Black East-African men and their female partners to live with HIV. Few studies have been conducted on this issue with the present study population. The main thrust of existing research has been on preventing new infections, and work on living with HIV has mostly focused on groups in which the disease has a higher prevalence in developed societies, for example men who have sex with men. A modified grounded theory methodology underpinned by a symbolic interactionist theoretical framework was adopted. Data collection involved in-depth interviews with 23 participants, including: one HIV-negative man in a sero-discordant relationship; 11 HIV-positive men; six HIV-positive women, five of whom were partners of an HIV-positive research participant; and five workers from London-based community organisations offering HIV-related services accessed by Black Africans. Most (13/17) of the HIV-positive research participants opted to partially conceal their condition. In consequence, they faced an ongoing dilemma regarding whether to reveal their HIV-positive status to particular individuals. Disclosure could potentially unlock sources of social support, but also created the risk of stigmatization. But concealment meant forfeiting potential social support sources, and created risks of exposure. Four of the 18 research participants had eventually decided to ‘come out’ publicly in order to challenge stereotypes about HIV. They demonstrated that open communication about HIV-positive status can be a viable alternative to selective concealment and disclosure. The findings are used to develop practice and policy recommendations based on recognising social sensitivities around communicating HIV-positive status and other stigmatized attributes. Proposals are offered for developing further research, particularly comparative work which can help to clarify the impact of culture on disclosure of potentially stigmatizing personal information.

There is evidence that some sub-Saharan African individuals suspect that they are HIV positive before diagnosis but delay being tested for HIV. This increases the likelihood of being diagnosed late (with a severely compromised immune system), a phenomenon that has been observed in sub-Saharan Africans diagnosed in the UK. Late diagnosis has negative personal and public health consequences. There is a lack of understanding of the psychological processes associated with delayed HIV-testing. This study used a Grounded Theory methodology. It aimed to produce a theoretical model to explain the psychological processes associated with delayed HIV testing in sub-Saharan Africans in the UK but also how these processes changed over time and contributed to the decision to test. Seven HIV-positive sub-Saharan African individuals from a London HIV clinic and one from a HIV charity were interviewed about their experiences. Analysis led to the development of a theoretical model of delayed HIV testing. This model consisted of three theoretical codes: moving in and out of uncertainty about HIV infection; preferring not to know HIV status; and making the decision to test for HIV. Participants' HIV risk perception fluctuated and was characterised by uncertainty. This, in combination with a preference to not know their HIV status due to a number of feared consequences of being HIV-positive, deterred them from testing. Participants' thoughts and feelings about knowing their HIV status changed over time. These changes were that they: wanted certainty, had hope of being HIV-negative and/or a hope for treatment and life and preparing for and accepting a potentially positive result. The findings can inform interventions to reduce delayed testing and suggest: a) intervening with ambivalence on an individual level and b) promoting awareness of HIV c) promoting the benefits of testing/costs of not testing at a population level. The findings are discussed in relation to existing research and theory. Strengths and limitations of the study are discussed, as are clinical implications and suggestions for future research.