Over the past two decades there has been an explosion in the number of cases of Kaposi’s sarcoma (KS) in parts of sub-Saharan Africa, where Kaposi’s sarcoma associated-herpesvirus (KSHV) and HIV are relatively prevalent. Currently KS is the most commonly reported cancer in Uganda causing significant morbidity and mortality. Limiting KSHV transmission or halting disease progression could prevent KS. Here, I describe an investigation of factors that might impact on transmission of KSHV and report the first prospective study of antibody titre to KSHV to determine risk of KS from Africa. Stored samples from Medical Research Council, Uganda cohorts were tested using an ELISA to KSHV antigens. Results from a birth cohort found that among both mothers and children malaria parasitaemia was identified as a novel association with KSHV seropositivity. Among children HIV exposure and HIV infection was associated with antibodies to KSHV. A random effects meta-analysis conducted to clarify wider evidence of an association between KSHV and HIV found that HIV was associated with an increased prevalence of antibodies to KSHV in mothers and children. A case-control study nested within a longitudinal HIV cohort found among individuals who develop KS, antibody titres to KSHV are higher and increased over time compared to adults who did not. It is plausible that control of malaria may also reduce the spread of KSHV. How malaria may interact with KSHV and if malaria control will reduce transmission are key future questions. Prevention and treatment of HIV with anti-retroviral therapy may lower KSHV transmission between mothers and children. For individuals with HIV-KSHV co-infection, increasing antibody titre to KSHV precedes development of KS. Research is required to elucidate co-factors driving progression to cancer. A clinically valid tool to screen for risk of HIV-associated KS is urgently needed.

Background Poverty drives TB rates but the current TB control approach is disproportionately biomedical. In 2015, the World Health Organisation's End TB Strategy explicitly identified the need to address the social determinants of TB through socioeconomic interventions. However, evidence concerning poverty-reduction and costs-mitigation strategies is limited. My PhD research aimed to address this knowledge gap. Methods During this PhD, I aimed to develop as an independent researcher while addressing the social determinants of TB in impoverished shantytown communities of Callao, Peru, through integrated projects. The research was divided into two phases: 1) Final follow-up, data collection, analysis, and write-up of: a case-control study defining the TB-poverty association; an ecological study assessing poverty-related risk factors for TB infection and disease; and a cohort study identifying TB-related costs of TB-affected families and creating a clinically-relevant catastrophic costs threshold. 2) Conception, design, implementation, data collection, analysis, and write-up of a household-randomized controlled study of a socioeconomic intervention to improve TB cure and prevention. Results The first phase showed that TB remains a disease of people living in poverty, that 'free' TB care was expensive for impoverished TB-affected families to afford, and that incurring catastrophic costs explained as many adverse outcomes as multi-drug resistant (MDR) TB. The second phase showed that, in households receiving the TB-specific socioeconomic intervention, TB-affected households were less likely to incur catastrophic costs, household contacts were more likely to start and adhere to TB preventive therapy, and TB patients were more likely to be cured. Conclusion In impoverished Peruvian shantytowns, poverty remains associated with TB and incurring catastrophic TB-related costs predicted adverse TB outcome. A novel TB-specific socioeconomic intervention reduced catastrophic costs and improved TB preventive therapy uptake and TB cure. The impact of the intervention on TB control will now be evaluated during the Community Randomized Evaluation of a Socioeconomic Intervention to Prevent TB (CRESIPT) study.

A systematic review with narrative systhesis focusing on the psychological factors for patients and carers which have been shown to effect the level of pain expereinced by individuals with adavanced cancer cared for at home. Large scale project: Secondary data analysis focusing on the relationship between illness perceptions and coping srategies and the impact of both on psychological distress for individuals with Oesphageal Cancer and Barretts Oesphagus. Testing the utility of both Leventhal's Common Sense model and the Transactional Model of Stress.

The overall aim of this thesis was to examine the role of social support networks and the significant other in breast cancer survivors. This thesis begins with a scoping review of current scientific literature to assess social support in the breast cancer context. The findings from this review showed that studies which have investigated social support networks in women with breast cancer do not often consider whether the actual support needs of the patient are met. In addition, there is little evidence from the support sources about the support that they may attempt to provide. Past research has attempted to measure social support and coping but is limited when attempting to understand interactions between the woman with breast cancer and their significant other as a dyadic process. Furthermore, the review indicated the lack of relevant research based in the UK. In Study 1, the perceptions held regarding the male partner were explored in five in-depth interviews with breast cancer survivors to answer the research question of “What support do male partners provide?”. Data were thematically analysed and findings indicated that male partners were perceived to provide instrumental support, whereas female support sources were perceived to provide more emotional support. In addition, the male partner was not always perceived to be the significant other as previous literature has suggested. This finding led to Studies 2A and 2B which aimed to find out more about different social support sources, the types of support provided and identify the significant other. Studies 2A and 2B mark one of the first examples of using ecomaps in this research area 1) as an elicitation tool in semi-structured interviews to collect data regarding an individual’s social support network and 2) as a method of visually presenting social support networks. Studies 2A and 2B illustrate the variety of sources and support provided. The final study, Study 3, presents three case studies of dyads, consisting of a breast cancer survivor and their nominated significant other, who they perceived to have provided them with the most support along the illness trajectory. This thesis contributes to the research literature in several ways. First, it outlines the research gaps in the current scientific research. Second, it provides a novel methodology for investigating the social support networks of breast cancer survivors through the use of ecomapping. Third, it contributes to the emerging knowledge on dyadic coping. The new knowledge generated is of importance when considering the post-treatment phase of the breast cancer trajectory. Finally the limitations and strengths of this work are discussed.

Previous research conceptualises posttraumatic growth (PTG) as a phenomenon experienced by some people after breast cancer. In this thesis, I consider an alternative understanding of PTG; as discursive identity performance in the context of breast cancer survivorship. First, a critical review of literature on PTG after cancer is presented, with attention to rigour and methodological diversity and also with regard to the fit between existing research and counselling psychology values. It is concluded that much of the existing research is framed within a realist perspective, and accordingly, accounts of PTG are viewed as stable internal beliefs rather than socially constructed ways of managing identity. The social context in which survivorship occurs has not been adequately explored and there is a paucity of work from within the UK, and especially from amongst counselling psychologists, who, arguably, have a significant contribution to make within the psycho-oncology arena. An area for research is marked out, from the epistemological position of social construction, to explore women's accounts of life after cancer, and how they orient to and make use of PTG in this context. Following consideration of the approach taken (a synthesis of two forms of discourse analysis), I present my research with four women who were interviewed about their experiences of life after breast cancer. The analysis highlights the fine grained features of the women's talk as they manage their post-cancer identities discursively negotiating the social and moral obligation to survive well. A number of discourses, including the ‘PTG discourse’ are drawn upon, making a number of subject positions available. Notably, the PTG discourse closes down talk of troubles. Implications for theory, and for counselling psychology practice within psycho-oncology, are discussed.

Introduction: At the core of UK policy for improving outcomes in cancer are goals for a healthcare where patients are empowered through information enabling engagement in shared care decisions with clinicians. Interventions to support patients’ engagement in shared decision making are lacking within colorectal cancer and high grade glioma care despite intensive treatment regimens with uncertain outcomes. Navigation, a communication and decision support intervention, has been successfully piloted with prostate and breast cancer patients who demonstrated significantly more confidence and less uncertainty in their treatment decisions. With healthcare policy advocating patients be educated and engaged in their care, the applicability of this intervention to other cancer settings is required. The Navigation intervention includes: consultation planning with a Navigator, formulation of a consultation plan and recording (summary and CD) of the medical consultation. Objectives: To determine the effectiveness of the Navigation intervention in enhancing decision-making quality over time when compared with usual care, in patients with colorectal cancer. To explore repeated experiences of the Navigation intervention from the perspective of colorectal cancer (CRC) patients, patients with high grade glioma (HGG), and consulting clinicians. Design and Studies: A mixed methods study using a pragmatic randomised controlled trial and qualitative evaluation was undertaken during November 2010 – December 2013. The intervention was trialled separately with two cohorts of cancer patients (CRC and HGG). A longitudinal parallel-group pragmatic randomised controlled trial was conducted. Study 1 consisted of a longitudinal parallel-group pragmatic randomised control trial. Participants with colorectal cancer were openly randomised after completion of baseline measures to receive the intervention or usual care (no intervention). The intervention was administered to patients at three particular time points during first line cancer treatment. Participants completed tools collecting primary outcome (decision self-efficacy) and secondary outcomes (decision conflict, decision regret, anxiety and depression) measured prior to baseline, post consultation and at follow-up. Mean change in scores overtime and between groups were compared using Mixed ANOVAS. Study two was a prospective qualitative study undertaking serial in-depth semi-structured evaluation interviews with patients with High Grade Glioma. Study three undertook interviews with the consulting HGG and CRC clinicians. Framework analysis was undertaken. Setting: Two oncology settings within a tertiary cancer centre in Scotland. Participants: 132 patients with colorectal cancer (65 intervention, 67 control) participated in the randomised controlled trial. For the qualitative study, 17 colorectal trial participants (8 intervention, 9 control), 11 high grade glioma patients and 7 clinicians were interviewed. Evaluation Results: No significant difference was found between the control and Navigation intervention participants over time in the primary outcome of decision self-efficacy, or in the following secondary outcomes; decision conflict or anxiety and depression scores. At follow-up, the intervention group reported significantly less decision regret than the controls (p=0.039). In the qualitative data, Navigated participants reported being well prepared for medical consultations, able to actively engage in information exchange during consultation and enabled to recall and understand information provided. This was in contrast to participants receiving usual care who described being less prepared for medical consultations and experienced barriers to gathering information, such as time pressures, forgetting questions, and gaps in understanding. Clinicians identified that patients benefitted from preparing for, and having a written summary of, the consultation. Whereas neuro-oncology clinicians were supportive of Navigation as a tool to tailor information to patients; colorectal clinicians felt Navigation was a disruption to their normal consultation routine. Concern was expressed regarding the extra resource required by Navigated patients and therefore about the feasibility and sustainability of the intervention. Conclusions: Whilst models of shared decision making remain highly profiled in cancer strategies, information exchange and use of interventions in context is problematic. This evaluation of Navigation has demonstrated more impact on the process of decision making, rather than outcome per se, and has raised questions about its sustainability in clinical practice. A more nuanced understanding of different cancer pathways and the specific decisions to be made, may inform a more targeted use of decision support in cancer care.

Breast cancer (BC) is the most common and most lethal cancer among women worldwide. More than a million and a half are diagnosed every year with more than 600,000 deaths among women worldwide. It is estimated than 1 in every 7 women will develop breast cancer in their life time. It is a major public health concern with high economic cost as well. BC is a multidimensional construct. Several dimensions of this construct have never been examined before in the United Arab Emirates (UAE). This study investigated major facets of the Quality of life (QOL) among women with BC in the UAE, compared it with a sample of age matched healthy group of women without any neoplastic background, changes in serum biomarkers of women with BC and to detect the impact of the disease on these biomarkers at the beginning of the disease before treatment started and then again 12 months later following treatment for the cancer and the role of ghrelin hormone in BC and depression at a tissue level and at serum level. In order to examine QOL with its all dimensions among women with BC, an epidemiological case-control study was conducted recruiting a sample of 300 women, 155 women with BC and 145 age-matched healthy women without any neoplastic background as a control group. This was carried out by using a series of standardized psychometric tools in addition to conducting a psychiatric diagnostic interview. Moreover, blood biomarker results were reviewed retrospectively for cases and controls at the beginning and then 12 months following treatment for BC. In relation to the histopathological characteristics and treatment modalities for BC, all pathology, medical and oncology data for 155 women with BC was retrieved from the computer system and analyzed retrospectively. Finally, in relation to ghrelin hormone, all mammary morphological types, normal, benign and malignant were examined with immunohistochemistry for the expression of ghrelin and its functioning receptor (GHS-R1a). Serum of the same women, whose mammary tissue sections were examined by IHC, was tested for ghrelin serum level to find out its link to BC and depression. This was carried out by Enzyme-Linked Immunosorbent Assay (ELISA). The results have demonstrated that women with BC had poor QOL in comparison to the control group. They had poor view of their body image and sexuality and moreover physical disability rate was high. They also tended to suppress negative emotions to a great extent. Anxiety symptoms were also high. Major depressive disorders and post traumatic disorders were lower among women with BC compared to healthy controls. Several risk factors turned to be linked to BC. These included age, having night shift work, hypertension, diabetes mellitus, oral contraceptive pills, hormonal replacement therapy and not breast feeding. In terms of significant traumatic life events, the Arabic version of the CESC English scale showed to have high validity and reliability among women with BC in the UAE. The results also showed that the levels of several serum haematological and biochemical markers seemed to be abnormal among women with BC compared to healthy control. These included elevated levels of platelet, basophils, liver enzymes, lactate dehydrogenase and tumour serum markers. On the other hand, they were low levels of serum magnesium, C-reactive protein and creatinine. Analysis of histopathological characteristics indicated that the aggressive biological nature of the disease was at the late stage and presentation to medical services for treatment. Clinically, women with BC seemed to have all treatment modalities for BC with high rate of mastectomy and axillary clearance. Regarding ghrelin hormone and it relation to BC, the results showed that malignant mammary tissues had an exclusive and differential immune-reactivity to ghrelin hormone, whereas its receptor, the GHS-R1a, was immune-reactive all mammary tissue morphological types. In addition, more metastasis to the lymph nodes was significantly correlated with more immune-reactivity to ghrelin receptor. The results for gene expression for pro-ghrelin, ghrelin and its receptors were inconclusive It is concluded that breast cancer is the most common cancer among women in the UAE. It attacks women at an earlier age than their counterparts in the West. More attention should to be allocated to the QOL and the unmet psychosocial needs of women with BC. This in turn would improve compliance to treatment and prognosis as well. It is also recommended that awareness campaigns and early screening should be applied for early detection of the disease to prevent late presentation to the medical services and other complications.

The main subject matter of this thesis concerns radiotherapy patient scheduling subproblems formulated as four separate shop scheduling problem models (i.e. hybrid flowshop, flowshop, mixed shop and multiple identical parallel machine scheduling problems) based on the characteristics of the intricate real-life treatment processes observed at the Arden Cancer Centre in Coventry, UK. Insight into these processes was gained by developing and using a novel discrete-event simulation (DES) model of the four units of the radiotherapy department. By typifying the subproblems as well-known scheduling problem models, it was intended that methods amenable to them such as heuristics be used in the study. Four novel constructive heuristics based on priority dispatching rules and strategies adapted from some established algorithms have been developed and implemented using the C++ programming language. Further, these heuristics were incorporated into the DES model to create schedules of appointments for the patients generated daily. The effectiveness and efficiency of the constructive heuristics have been tested using the following performance criteria: minimising i) average waiting time to the start of treatment, and ii) average percentage of patients late for their treatment, and iii) the amount of overtime slots used for the patients received in a given period of time. The coordinated constructive heuristics and the DES model have also been tested using possible alternative pathways patients can follow in the treatment unit. The aim of these tests was to compare the efficiency of the radiotherapy department’s current pathway to other possible pathways. Further, strategies for using maximum allowed breaches of targeted due dates, reserved slots for critical treatments and overtime slots was also included in the heuristics. The results of several tests showed that the heuristics created schedules of appointments whose average waiting times for emergency, palliative and radical treatments improved by about 50%, 34% and 41%, respectively, compared to the historical data. However, their major slack was evidenced by the fact that about 13% of the patients needing palliative treatment were expected to be late for treatment compared to about 1% of those requiring radical treatment.

Background There will be approximately four million people living with cancer in the United Kingdom (UK) by 2030. The National Health Service faces a major challenge meeting the support needs of this growing population, who commonly report feeling isolated and lacking social support. Approximately 45 million adults in the UK use the internet, and online communities might be a culturally relevant way to connect people affected by cancer, allowing them to support one another. However, internet communication is fraught with challenges such as misleading or untrustworthy information. We have a limited understanding of how people experience these communities and whether they can provide meaningful support for people affected by cancer. Aims To explore and understand the experiences and interactions of people affected by cancer who visit online cancer communities. Methods This was a qualitative study involving 23 people who had visited online cancer communities. Participants were affected by a range of cancers and were a combination of cancer survivors and families members. Semi-structured interviews elicited participants’ experiences, preferences and perceived consequences of using online communities. Data analysis was guided by principles of Constructivist Grounded Theory. Findings Participants used communities to ‘navigate’ the challenges they faced with cancer. This navigation produced three categories of experience in online communities. Firstly, advice from fellow community members set participants on a ‘journey to become informed’. Secondly, participants were cast into a ‘journey to recreate identity’ as they connected and formed friendships online. Thirdly, participants discovered a ‘journey through different online worlds’ to the most relevant and often hidden social communities. Conclusions This was the first qualitative in-depth study exploring how contemporary online cancer communities are used by people affected by cancer. Online communities offered multifaceted opportunities to support the cancer experience, and they may promote self-management in cancer care. These findings can inform and improve the delivery of existing online communities.

Cultural factors affecting the development of an evidence-based information service in a third sector provider of complementary cancer care Matthew Breckons Introduction Many people with cancer access complementary and alternative medicine (CAM) and a need for high quality information was emphasised in reports by the House of Lords and the National Institute for Health and Clinical Excellence. Organisational culture, incorporating people’s underlying assumptions, values and actions, has been highlighted as an important factor when attempting to introduce evidence-based practices. Opinion is divided over the relevance of evidence to CAM practice, although the influence that this has on the cultural context of a CAM organisation is not understood. Aims To identify cultural factors affecting the introduction of an evidence-based information service in a third-sector CAM organisation and, in light of factors identified, to suggest feasible innovations to achieve a more evidenced-based approach. Methods Access to the charity was gained through a Knowledge Transfer Partnership. Soft Systems Methodology, a form of action research, was used to carry out four ‘learning cycles’ in which data was collected and fed back to staff at the organisation to prompt discussion on what could be improved. Learning cycles focused on improving the quality of web-based and printed information and gaining an understanding of how the information service could be improved from staff and service-user perspectives. Results Results suggested that a lack of time and emphasis on marketing values led to difficulties feeding back results and making changes that were perceived to reduce demand for the charity’s services. A lack of management support and a reluctance to implement rules made introducing any form of information policy problematic. Additionally, structural factors such as a large team of part-time staff and a lack of financial resources led to communication difficulties as well as limiting the opportunity for staff development. Conclusions This is the first study to document systematic attempts to make evidence-based changes in a third sector CAM organisation. As such, this study has generated results demonstrating how cultural and structural constraints in this type of organisation may influence attempts to make evidence-based changes. Introduction of an initiative such as the Information Accreditation Scheme (IAS) may provide benefits to an organisation of this type by guiding the development of information production systems at the same time as raising the profile of the organisation. The findings of this study strongly suggest that, despite demands from policy makers for the provision of evidence-based CAM information, there may be systematic difficulties experienced by organisations responsible for the production of this information. Further research is needed to understand how producers of CAM information can be supported in providing high quality, evidence-based materials.