Background: Clinical research that has no curative intent involving patients nearing the end of life, presents an ethically challenging situation. Previous research has demonstrated that these patients' understanding of clinical trials can be limited. Aim: This study seeks to understand the decision making process of patients with incurable cancer within the context of clinical research trials and to explore the clinical research teams' perspective on patients' decision making. Method: A modified grounded theory approach was used. This approach combined classic grounded theory methodology with the symbolic interaction element of Charmaz' grounded theory. Sixteen patients and eighteen research team members were interviewed. Data were analysed using a constant comparative method. Results: Nothing to lose emerged as the core category. Consenting patients made their decision instantly and were influenced by factors including, desire for increased longevity, an expectation to receive better attention, and the persuasive language used by doctors and nurses. They gave little consideration to the side-effects of the trial drug. Patients who declined did so after much deliberation . They were concerned about extra hospital visits and unknown side-effects. Oncologists and clinical research nurses believed that clinical care was highly protocolised and therefore better than care during standard treatment and as a result they thought that patients had nothing to lose by participating in a clinical trial. Conclusion: These findings demonstrate that patients' motivation for trial consent is complex. They perceive themselves in a paternalistic relationship with their doctor and thus are influenced by the emotional context and language used. Patients evaluated the risk of trial participation in the context of a limited lifespan thinking "I have nothing to lose." Consenting patients put significant value on the trial as a vehicle of hope and personalised care from the research team, whereas decliners decided they had more to lose by trial participation and opted for standard treatment.

There is at present a clear paucity of understanding the phenomenon of paternal cancer. A deeper level of knowledge in this area will undoubtedly assist health and social care professionals to provide psycho-social support to fathers and their families, particularly now as fathers' roles diversify in an ever changing social landscape. This study explores the experiences of fathers diagnosed and living with cancer. Methods: A qualitative hermeneutic phenomenological approach was used in the study. Data were generated through multiple in-depth interviews with 10 participants, 22 in total. Findings: This study generates new insights and knowledge of fathers' parental role while ill. Identities are challenged and often reinvented by this experience, this can ignite an improved lifestyle behaviour pattern. Heightened engagement with their children can provide a protective effect from the illness, the opposite is true without this increased involvement and may lead to frustration, even depression. Fathers in non-traditional family settings appear more vulnerable in terms of social support and disjointed relationships with their children. Conclusions: This study contributes to our understanding of the sociology of health and illness and of the impact of sex-role stereotypes on fathers who are no longer able to fulfil the traditional breadwinner role. The findings also reveal the complexity and diversity of the father's role and family structures in modern society. This study will inform health and social care practitioners of the need to provide gendered sensitive care and of the way gendered responses can shape the cancer experience. Additionally, the study demonstrates that fathers can be targeted at this critical time to adopt healthier behaviours, taking more responsibility for their health. Given the impact of cancer on the entire family structure a family centred approach to cancer care is recommended.

Lung cancer survival is poorer in more socio-economically deprived patient groups. It has been suggested that socio-economic inequalities in receipt of, and time to, treatment may contribute to inequalities in cancer outcome. Unintended variations in outcome that result from the way that interventions are organised and delivered have been described as intervention-generated inequalities. The aim of this thesis was to determine if there are socio-economic inequalities in lung cancer care and, if so, to identify where on the pathway of care these inequalities might occur: looking at receipt of treatment; referral, diagnostic and treatment time intervals; and survival. A systematic review and meta-analysis was conducted in order to examine the published evidence for socio-economic inequalities in lung cancer treatment. A secondary analysis of cancer registry data for 65,210 patients diagnosed between 1999-2010 with a primary diagnosis of lung cancer [ICD10 C33 and C34], linked to Hospital Episode Statistics and lung cancer audit data, was conducted. Logistic regression was used to examine the likelihood of receipt of treatment; of receiving timely referral, diagnosis and treatment within guidelines; and of being alive two years after diagnosis, by socio-economic position [SEP]. Cox regression was used to assess the likelihood of early referral, diagnosis and treatment and hazard of death, by SEP. Socio-economic inequalities in receipt of lung cancer surgery and chemotherapy, but not radiotherapy, were found in the systematic review and meta-analysis, and in the linked-data analysis. Socio-economic inequalities in the GP referral to first hospital appointment time interval were identified. Socio-economic inequalities in survival from lung cancer were statistically explained by socio-economic inequalities in receipt of treatment, but not by inequalities in timeliness of referral and treatment, in this cohort. However high levels of missing stage, performance status and co-morbidity data were a limitation. Research into the unexplained variance in treatment rates is required in order to develop interventions that address socio-economic inequalities in receipt of treatment and reduce socio-economic inequalities in survival.

Background: TB is a growing public health problem. Most research focuses on secondary care. This, the largest study of TB in primary care to date, aims to investigate aspects of TB epidemiology by examining the role of primary care in case detection, management and outcomes. Methods: Using data from the General Practice Research Database a case-control and a self-controlled study were undertaken to investigate TB pre-diagnosis and a self-controlled and cohort study to describe and quantify TB morbidity and mortality post-diagnosis. Results: 3032 TB cases and 15,160 matched controls were analysed. The pre-TB studies showed that cases had higher consultation rates, consulted on multiple occasions often with recurrent respiratory infections and experienced a diagnostic delay of up-to-4months. Strengths of association between symptoms, respiratory diseases and TB were also noted. The case-control study also showed that male gender, smoking and chronic disease were independent risk factors for TB. Post-TB, patients who survived at least 18months had no increase in morbidity but TB led to a slight increase in all-cause mortality (adjusted HR:1.53) and a case fatality rate at one year of 6.5%. Mortality was highest in the first year post-diagnosis. Undiagnosed pulmonary TB, older age, male gender, malignancy and chronic disease were all associated with a worse prognosis. At 10 years, TB cases had a 70% chance of survival compared to 79% for patients’ without-TB. Conclusions: Diagnosing TB in primary care remains a challenge due to its variable and non-specific nature but a window of opportunity exists from 4months following first presentation. Combining knowledge of the strength of association between TB, its symptoms and respiratory diagnoses, TB risk factors and raising awareness of newer investigations and local referral processes could help GPs make an earlier diagnosis. This research indicates a need for improved patient and professional awareness of TB and emphasises the need for earlier diagnosis.

This thesis offers an ethnographic account of the work of a research institute called the South African Tuberculosis Vaccines Initiative (SATVI), which has been running tuberculosis (TB) vaccine trials in the Western Cape since 2001. The chapters show that SATVI has become deeply embedded in the local socioeconomic and healthcare landscape through the ground-level conduct of its vaccine trials. However, the significance of the trials in people’s lives goes beyond providing access to resources against the backdrop of withdrawing state structures. The focus is on how the trials have become entangled in people’s attempts to craft lives that they consider to be valuable, moral and respectable in conditions that have been rendered precarious by centuries of racialised domination, control and stereotyping. The thesis firstly shows that that the post-apartheid health system has retained residues of authoritarianism through the democratic transition and that TB control focuses attention upon individual behaviour and lifestyles through the neoliberal language of ‘responsibility’. Against this backdrop, SATVI’s trials generated novel relationships and possibilities gravitating around the pursuit of the ‘greater good’ of a new TB vaccine and the bioethical ideal of the autonomous, rights-bearing ‘human subject’. Within these research relationships, participants not only felt valued, respected and included. Participants and research staff also engaged with health and wellbeing in ways that contest the common perception in the government clinics that residents are unwilling or unable to ‘take responsibly’ in matters of personal and community health. What emerges from this thesis is a moral economy surrounding trial participation that, firstly, challenges the bioethical construction of ‘vulnerability’. Secondly, it unsettles a tendency in social science research to emphasise the material dimensions of trial participation at the expense of a broader spectrum of imperatives and subject positions from which people approach and interpret medical science.

The purpose of this study was to understand TB patients' experiential accounts of access to TB diagnosis and treatment and more specifically about their experiences of medical help from health care professionals. METHOD: This narrative enquiry was undertaken in three boroughs of London, including two boroughs with the highest TB notification rates in the UK. The study involved pilot interviews with ten patients to develop the research question. In-depth narrative interviews with 32 additional patients were then undertaken. All participants were over eighteen years of age. The analysis of narratives involved descriptive; holistic-form and categorical content (themes) approaches to identify story 'plot' and 'subplots' and themes covering the whole of the patients' journeys to treatment. RESULTS: Seven narrative plots and thirty subplots were grouped into six categories of medical help and specific themes embedded in them were grouped in three stages of patients' pathways 'before' 'during' and 'after' diagnosis. These themes are listed below sequentially to illustrate these patients' pathways. 1. Symptoms were misinterpreted and misdiagnosed. 2. Kept on ineffective antibiotics/painkillers for many visits. 3. Referred quickly for suspected TB or other serious illnesses. 4. Referred only when critically ill. 5. Referred when antibiotics and pain killers not helping. 6. Referred only after pushing for referral. 7. Sought help from A&E. 8. Diagnosed immediately after TB testing. 9. Referred to wrong specialist and waited too long. 10. Had to fight for TB test. 11. Had lots of tests but no results. 12. Doubts about diagnosis. 13. Felt ignored and had no information. 14. Felt listened and cared for. 15. Quickly began my treatment. 16. Felt better after treatment, no side-effects. 17. Felt better after treatment with side-effects. 18. Felt needed longer treatment. CONCLUSIONS: The accounts of two thirds of the study participants suggest that their doctors' misunderstanding of their illness and miscommunication with them contributed to delayed diagnosis and treatment ranging from one month to twelve months. TB service providers and commissioners need to raise clinical staff awareness about TB and review the factors hindering doctor-patient communication about TB care. The findings in this research indicate that health service related delay is likely to contribute to increased TB transmission rates in the two research settings in London.

Study rationale. While household socioeconomic position (SEP) may be clearly a root cause of tuberculosis (TB), it is more challenging to understand how household SEP affects the risk of TB, how this effect is mediated by risk factors that are on the causal pathway, how this effect differs at different level of analysis and different pathogenic stages of TB, and how this evidence can inform control strategies. Objectives. The aim of this study was to: 1) explore the ecological correlation between community living conditions and TB prevalence rates; 2) quantify the association between household SEP and TB disease and TB infection and, 3) explore the causal mechanism underlying these associations. Methods. This research project was nested within a population-based HIV-TB prevalence survey conducted in 2005-2006 in two Zambian communities, one rural and one urban. Each community is divided into smaller tracts called Census Advisory Areas (CSA). Prevalent TB was diagnosed through culture and molecular testing of sputum samples collected from the prevalence survey participants. The correlation between community living conditions and TB prevalence was assessed through an ecological analysis conducted at CSA level. The association between household SEP and TB disease and infection was assessed respectively through a case-control and a cross-sectional study. CSA living conditions were explored through poverty mapping. Variables accounting for four different domains of household SEP were recorded (human resources; food availability; housing quality; and access to services) and combined into a composite index using principal component analysis. In addition four more SEP indices were developed: one for each household SEP dimension considered. The analysis of the mediation pathway between household SEP and TB (disease and infection) was driven by a pre-defined conceptual framework, including household SEP and individuallevel risk factors. Adjusted Population Attributable Fractions (PAF) were estimated. Main findings. Ecological analysis - The overall cluster-adjusted TB prevalence rates was 870/100,000 (95%Cl: 570-1160/100,000) Urban CSA had both significantly higher TB prevalence rates and wealthier living conditions compared to rural CSA. Although not significantly, TB prevalence rates tended to increase with the worsening of urban CSA living conditions. Case control study - At household level, prevalent TB was significantly associated with lower household SEP [aOR = 6.2,95%Cl: 2.0-19.2 and aOR = 3.4,95%Cl: 1.8-7.6 respectively for low and medium household SEP compared to the baseline]. The food availability domain was more strongly associated with prevalent TB than the other domains considered [aOR = 4.2,95%Cl: 1.8-9.2]. At individual level, TB prevalent cases were significantly more likely to have a diet poor in proteins [aOR= 3.1,95%Cl: 1.1-8.7], to be not BCG vaccinated [aOR = 7.7,95%CI: 2.8-20.8], to be HIV positive [aOR= 3.1,95%Cl: 1.7-5.8], and to have migrated [aOR = 5.2,95%CI: 2.7-10.2] than controls. These associations all persisted after controlling for household SEP. The association between household SEP and TB appeared to be mainly mediated by inadequate nutrition. Before mediation, PAF for household SEP was equal to 30%. The adjusted PAF for inadequate nutrition and HIV infection was equal to 42% and 36%, respectively. Cross sectional study - TB infection was associated with higher, rather than lower, household SEP [aOR = 0.4,95%Cl: 0.2-0.9 and aOR= 0.4,95%Cl: 0.2-0.8 for high and medium household SEP compared to low SEP]. This association was driven by the household SEP domain on access to community services [aOR = 2.7,95% Cl: 1.0-7.1 ]. None of the investigated risk factors appear to mediate the association between household SEP and TB infection. Conclusions. In this setting, urban communities were wealthier but also had greater prevalence of TB. The low power of the ecological analysis does not allow any conclusions; however - as for other health indicators, even for TB it seems that the apparent advantage of living in an urban setting can mask severe TB inequalities across smaller urban communities. This study revealed an unexpected and counterintuitive result: low household SEP was significantly associated with a higher risk of TB disease, but with a lower risk TB infection. Higher household SEP may be associated with lifestyles increasing social mixing and thus the risk of infection. Among the infected people, poorer individuals may be more likely to progress to TB disease and, therefore, are more likely to be identified in prevalence surveys. In the association with TB disease, household SEP seems to operate mainly through inadequate nutrition. While both 11V and inadequate nutrition were important social determinants of prevalent TB, these findings suggest that interventions addressing food insecurity may prevent more TB cases in this setting. Because of low study power and possible selection biases results this interpretation will have to be confirmed by more powered and better designed studies. In the meantime, this study suggests that interventions addressing household SEP, through food and financial support, may effectively reduce TB prevalence and complement currently control strategies mainly targeted to HIV positive people. To evaluate the impact and cost-effectiveness of this approach is a priority.

No description available.

Survival rates for breast cancer have improved over the recent decades, and increasing numbers of women in midlife are coming to terms with the consequences of the disease and its treatment. Among the various side-effects associated with treatment are appearance and bodily alterations, which can elicit body image concerns and subsequently impose long-lasting adverse impacts upon psychological and physical health. Governments, health services, and support organisations have stressed the importance of the development, evaluation, and dissemination of psychosocial interventions that provide support for women adjusting to the residual consequences of the diagnosis and treatment of cancer, including body image distress. The overall aim of this thesis was to develop and assess the acceptability of an evidence-informed psychosocial intervention targeting body image among women in midlife who have undergone treatment for breast cancer. The thesis adopted a mixed-method pragmatic approach, and followed the Medical Research Council’s framework for the development and evaluation of complex interventions (Craig et al., 2008). First, a systematic review of existing body image interventions for women in midlife, including those treated for breast cancer, was conducted to assess the current status of the literature and identify existing effective interventions. Interventions targeting women in midlife (n=11) were found to have longer-lasting and larger effects on body image at post-test and were evaluated in studies of greater methodological rigour, compared with interventions targeting women who had undergone treatment for breast cancer (n=22). Second, an online survey tested and compared an established sociocultural model of body image (Tripartite Influence Model; Thompson, Heinberg, Altabe, & Tantleff-Dunn, 1999) between women in midlife who were treated (n=169), and not treated (n=323), for breast cancer, in order to assess potential targets for body image interventions and the applicability of research and interventions among women in midlife for use with women treated for breast cancer. This study revealed a similar pattern of risk factors among both groups, whereby sociocultural and psychological factors proposed within the model influenced body image. Next, an integration of findings from the systematic review and online survey informed the adaptation of an existing evidence-based and rigorously evaluated body image intervention for women in midlife (McLean, Paxton, & Wertheim, 2011) for use among women treated for breast cancer. Finally, the adapted intervention was evaluated for its acceptability through focus groups and interviews with women who had undergone treatment for breast cancer (n=22) and health professionals involved in their psychosocial care (n=5). The adapted intervention was found to be acceptable to both participant groups, pending some further amendments. In addition to informing the adaptation of an existing body image intervention for use with women who have undergone treatment for breast cancer, the findings also provide important implications for practice, theory, and research. The present research has identified previously unexplored sociocultural and psychological influences on the body image of women who have undergone treatment for breast cancer and reveals the value of a theoretical model developed within the wider body image field for a group with an altered appearance.

This is the first study to apply an analytical framework based on service-dominant logic (S-D logic) to a UK specialist health care context. The primary aim is to investigate how value, when framed as value that is perceived and determined on the basis of use (i.e. ‘value-in-use’, Vargo and Lusch 2004a) is conceptualised by service users (patients) and service providers (health care staff) in a specialist cancer service setting. Factors influencing the trajectories of ‘value’ (creation and destruction) in micro-level health service encounters are also analysed. This work is transdisciplinary in nature and combines scholarship from fields including services marketing and public management regarding value, value co-creation and patient and public participation in public services (specifically patient engagement in direct health care). In doing so, this work focuses on the S-D logic framework and the recent application of this approach in public management research (Osborne et al 2013). This study adopts an interpretive approach (using semi-structured interviews and observational data) to the investigation of these focal study phenomena. This study responds to calls for research regarding the empirical application of S-D logic (Ostrom et al 2015). Study findings reveal that ‘value’ is a temporal concept, which varies over time and is experienced ‘in context’. The S-D logic framework usefully focuses attention on the service user and interactions between patients and health care staff during service encounters. S-D logic does not, however, neatly map into a health care context. The findings show that value can be created and destroyed both within single encounters, and across multiple health service encounters. Four main themes are identified which contribute to the creation and destruction of value in the UK specialist cancer care context: access to resources (includes specialist knowledge and skills and physical resources); the quality of interactions; resource use and organisational factors.