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This thesis explores the lives of middle-class women who have had breast cancer and are charity volunteers for small associative patient groups in urban India. It is through their activities and experiences as ‘post-cancer volunteers’ that the thesis attends to the notion of breast cancer ‘survivorship’ in relation to emergent forms of solidarity, belonging and personhood. The thesis has three main areas of concern. The first explores the role of survivorship in generating a novel form of lay expertise that gives rise to emergent forms of grassroots patient activism within the interstices of different spheres of care in a distinct urban oncological health landscape. This is described in relation to novel forms of disease affiliation such as practices of therapeutic mediation, the creation of pragmatic and sentimental solidarities, and the reconfiguration of novel forms of gendered self-care. The activities of the voluntary groups are explored as a particular form of spiritual humanitarianism conceptualised as sevā (selfless service) and are discussed in relation to recent anthropological studies on biosocial patient mobilisation around biological affiliation and emergent forms of health citizenship. The second area attends to the post-cancer volunteers’ individual experiences of recovering from breast cancer as initiating the cultivation of certain practices of self-care and attempts to harness the self in a more singular mode of personhood. These experiences are considered in light of recent ethnographic research on contemporary forms of Hindu devotion and longstanding anthropological debates on Indian personhood, gender and the individual in anthropology more generally. Finally, the thesis explores these novel forms of personhood and patterns of philanthropic care at the intersection of particular visions of Indian modernity that are seen to unfold in complex ways in urban India today.

The purpose of this qualitative study was to explore the major areas of psychosocial concerns, individual anxieties and coping responses for fathers with testicular cancer. While numerous studies have been carried out with mothers with cancer, research from the perspective of fathers with cancer is sparse. This study attempts to identify and explore their specific concerns and priorities. The study was approved by the Royal Marsden Hospital (RMH) Committee for Clinical Research (CCR) and the Local Research Ethics Committee (LREC). Men were recruited from the RMH Testicular Clinic. All of the men had two or three school age children and were from a range of ethnic backgrounds, professions and education levels. The Biographical Narrative Interpretive Method (BNIM) of interviewing was used and the Interpretative Phenomenological Analysis (IPA) method was employed to analyze the data. Psychodynamic concepts were utilized as the theoretical framework to develop interpretations for each participant. Theories of masculinity were also incorporated. A set of themes emerged which was supported by the current literature. The psychosocial concerns included: lack of adequate medical information, concerns for children and wife and work concerns. The individual anxieties included: concerns around self concepts and masculinity, physical changes and self-image, challenges to faith and finding meaning, fear of recurrence, fear of death and annihilation. The participants employed specific coping responses including: intellectualization, minimizing, maintaining stoic façade and idealization which helped them to cope with the impact of their disease AND allowed them to maintain their sense of masculinity. This phenomenon was labeled “The Masculine Way of Handling Illness”. Additionally, the men split their cancer into the “good one to get”. The findings suggest that men need more reliable information, preferably on a reputable UK site, about talking to their children, the physical effects of treatment and the options of having a prosthesis.

An increasing number of people with terminal cancer are being cared for at home, often by their partner. This study explores the identity, experiences and relationships of people caring for their partner at the end of life and how they construct their experience through personal and couple narratives. It draws upon dialogical approaches to narrative analysis to focus on caring partners and the care relationship. Six participants were recruited for the study. Two methods of data collection are used: narrative interviews and journals. Following individual case analysis, two methods of cross-narrative analysis are used: an analysis of narrative themes and an identification of narrative types. The key findings can be summarised as follows. First, in the period since their partner's terminal prognosis, participants sustained and reconstructed self and couple relationship narratives. These narratives aided the construction of meaning and coherence at a time of major biographical disruption: the anticipated loss of a partner. Second, the study highlights the complexity of spoken and unspoken narratives in terminal cancer and how these relate to individual and couple identities. Third, a typology of archetypal narratives based upon the data is identified. The blow-by-blow narratives illustrate how participants sought to construct coherence and meaning in the illness story, while champion and resilience narratives demonstrate how participants utilised positive self and relational narratives to manage a time of biographical disruption. The study highlights how this narrative approach can enhance understanding of the experiences and identities of people caring for a terminally ill partner.

Introduction: Regular assessment of patients’ health related quality of life (HRQoL) with feedback to clinicians can play an important role in patient-doctor communication, problem detection and monitoring. Many cancer specific HRQoL instruments are available but their clinical utility in routine practice has not been systematically evaluated. The aim was to develop a HRQoL questionnaire for patients with advanced colorectal cancer (CRC) for use in routine practice and to explore ways to increase its’ clinical utility. Methods and results: A comprehensive development strategy was used to create CRC specific questionnaire for clinical practice. The strategy involved exploration of issues discussed in consultations of 17 CRC patients (68 consultations), review of literature, interviews with 7 oncologists and 10 patients, validation of the questionnaire in a sample of 155 CRC patients and validation in 448 patients as part of a wider study. A 55 item questionnaire, QuEST-Cr was created. Exploratory work was performed to examine the longitudinal impact of patient reported HRQoL collection with feedback using data from 198 patients’ oncology consultations over 4 consecutive visits. Impact of intervention on consultation content and communication preferences of patients and doctors were examined. Findings highlight lack of discussions about psychosocial issues even when patients reported poor functioning. Repeated assessment helped to maintain discussions of patients’ symptoms over time but not psychosocial issues. Training oncologists was considered a way of increasing the impact of patient reported HRQoL intervention. Review of literature identified barriers that needed to overcome. Conceptual models of adult learning guided the choice of teaching methods. Development of trigger DVDs provided valuable experiential learning opportunity. Conclusion: I developed and evaluated an instrument for screening and identifying the needs of CRC patients in routine clinical practice. I developed a training programme for oncologists which may help increase the clinical utility of patient reported HRQoL data.

Cancer is a widespread and feared disease and a leading cause of morbidity and mortality worldwide. Those 'affected' by cancer report a range of immediate and long-term supportive care needs and are increasingly turning to a range of health services to address them, including cancer helplines. Cancer helplines are recognised as integral aspects to the delivery of cancer care and are highly valued by the people who use them but there is little empirical evidence about how participants discuss the caller's problems during the calls, despite the well-known communication challenges associated with talking about cancer in other settings. This research examined a large collection (n=99) of 'real-time' audio recorded cancer helpline calls and used Conversation Analysis (CA) to understand the interactional process of seeking and delivering telephone-based cancer care in more detail. I first provide a quantitative overview of caller requests for assistance and the ways in which these requests were managed by call-handlers. This overview shows that callers telephoned the helpline to request information, advice and psychosocial support about a range of medically-related matters; that most callers volunteered two or more concerns throughout the calls; and that some of these concerns were outside the remit of the call-handlers' expertise. Callhandlers typically provided assistance in the form of verbal information and they also signposted callers onto other healthcare professionals. I then qualitatively explored: 1) a subset of problem presentations (n=23) in which troubling symptoms were topicalised by the caller; 2) a collection (n=11) of calls about the patient's prognosis; and 3) the practices used to bring the calls to a close (n=97). Overall, this conversation-analytic examination led to greater understandings about the complex problems discussed on cancer helplines and how they were managed.

Background: Multiple myeloma is an increasingly common disease, but there is little evidence about the change in symptoms and problems in more advanced stages. Aim: To describe the health-related quality of life (QOL) trajectories in multiple myeloma, and to evaluate the longitudinal validity of the Myeloma Patient Outcome Scale (MyPOS), a questionnaire to monitor QOL and palliative care concerns. Methods: A national, multi-centre, observational study comprising (1) a cross-sectional analysis merging data from two studies, and (2) a longitudinal study, recruiting patients at various stages of the disease. Demographic and clinical data was collected alongside QOL measures. Analysis: (i) prevalence of symptoms and independently associated factors with poor quality of life, (ii) latent growth mixture analysis of quality of life trajectories, (iii) longitudinal validity and reliability via Rasch analysis, Generalizability theory and responsiveness to change. Results: (i) Cross-sectional study: 557 patients reported a mean of 7.2 symptoms with the most common symptoms, pain, fatigue and breathlessness, being present in 61-78% of patients. General symptom level, pain, anxiety and depression, physical decline, age and phase of illness had significant independent associations with high palliative care concerns. (ii) Longitudinal study: Four classes of individual QOL trajectories were identified (n=224): declining HRQOL over 8 months, stable moderate to good QOL, improving QOL, and fluctuating poor QOL. Logistic regression analysis revealed general symptom level (OR = 1.28), pain (OR=1.03) and presence of clinically relevant anxiety or depression (OR=1.19) to be predictors for a declining or poor QOL trajectory. (iii) The MyPOS demonstrated good to excellent test-retest reliability. Rasch analysis identified limitations of suboptimal scale-to-sample targeting, resulting in floor effects. Responsiveness analysis yielded an MID of +2.5 for improvement and -4.5 for deterioration. Conclusions: People with myeloma have four main trajectories of QOL which can be predicted by symptoms and psychological concerns. These could be tested as triggers for additional palliative support. The MyPOS is a valid and reliable outcome measure to monitor these indicators in routine clinical practice.

Background Each year, approximately 10% of people diagnosed with tuberculosis (TB) globally have previously received TB treatment, and are prescribed a standardised WHO ‘Category II regimen’ which includes daily intramuscular injections of streptomycin. Treatment success rates on this re-treatment regimen are low, yet reasons for poor outcomes are not well understood. Currently data are lacking about appropriate ways to deliver long term injectable agents used as part of TB treatment. Methods The study was conducted in Malawi, a small country in South-Eastern Africa with a high TB burden and a generalised HIV epidemic. A cohort study prospectively recruited adult patients receiving retreatment regimen. Patients were assessed at baseline, 2 and 8 months. Multivariate logistic regression analysis was used to determine associations between clinical outcome and microbiologically confirmed TB, drug resistance, clinical features at presentation and medical co-morbidities. A pragmatic, individually randomised trial assessed hospital versus community-based care during the intensive phase of TB retreatment. In the community arm guardians were trained to deliver intramuscular injections of streptomycin at home. An economic evaluation was conducted from a societal perspective; and a qualitative evaluation involved in depth interviews with trial participants, key informant interviews, and observations. Results In the cohort study, the prevalence of drug resistance was 9.6%. The prevalence of co-morbidity was high (HIV 82.9%; antiretroviral therapy failure 37.5%; severe anaemia 22.2%; chronic lung disease 88.2%; renal impairment 33.8%). Ototoxicity developed in 35.9% and nephrotoxicity in 14.6%. In multivariate analysis, successful outcome was associated only with hypotension at presentation, but not microbiologically confirmed TB, drug resistance or other co-morbidities. In the trial, 93.2% of patients who received community-based care successfully completed 2 months treatment, compared to 96.0% managed in hospital (RD -0.03; 95%CI -0.09 - 0.03). The mean cost of hospital-based care was US$ 1546 per person, compared to US$ 729.2 in the community. Community-based management reduced risk of catastrophic household costs by 84%. Qualitative data demonstrated social and financial benefits of community-based care. Conclusions This cohort study demonstrated a low prevalence of drug resistant TB but a high burden of medical co-morbidity in patients with recurrent TB in Malawi. Co-morbidity is likely to be contributing to poor outcomes on TB retreatment regimen. A novel community-based model of delivering injectable anti-TB drugs by training guardians to do injections at home is shown to be feasible, acceptable and highly cost effective.

The UK has some of the poorest cancer outcomes in Europe, commonly attributed to diagnostic delays. The patient interval appears to be a substantial contributor to these, with awareness raising campaigns a key strategy for encouraging earlier presentation. However, research has identified a number of barriers to help-seeking beyond awareness, such as fear, concerns about wasting the doctor’s time, personal commitments and access. This research sought to explore social context and help-seeking for people with symptoms of lung or colorectal cancer, comparing the experiences of prompt consulters with those who prolonged presentation. 164 people with symptoms of lung or colorectal cancer completed a questionnaire on symptom experience and social context and 26 of these took part in follow-up semi-structured interviews. People with symptoms of bleeding or pain had shorter patient intervals than those experiencing other symptoms. Those with symptoms which were perceived of as severe body state deviations decided to seek help much quicker than those with general or systemic symptoms, who instead reappraised symptoms over time. Symptom appraisal and help-seeking processes were informed by numerous contributory elements, which were drawn from four contextual domains of a person's life; individual experience, interpersonal relationships, health care system interactions and social and temporal context. They included micro-level elements, such as exposure to carcinogens as well as macro-level factors, like social discourses on morality, calling into question the centrality of awareness-raising campaigns to encourage earlier presentation among the symptomatic population. A novel model The Contextual Model of the Patient Interval, is presented to illustrate this part of the diagnostic pathway. The concept of risk is used to explain how people assess the necessity of help-seeking and the threshold of tolerability is introduced as a means of explaining the timing of help-seeking decision making, based on contextual contributory elements and symptom burden. The assessment of cancer risk is one contributory element which is explored in detail and its incorporation into calculations of the threshold of tolerability is considered. The idea of 'critical incidents' is used to explain the assessment of cancer risk among people who consulted quickly about symptoms, with 'cancer candidacy' being used to explain the cancer risk assessments undertaken by those with prolonged patient intervals. In line with a societal focus on risk generally, public health developments have now resulted in a shift away from contagion and treatment, towards prediction and prevention, under the 'new public health' approach. The focus on risk and prevention has created an environment in which discourses of 'early presentation' and the 'good patient' have emerged. These discourses place moral obligations on people in relation to acceptable responses to symptoms and the need to present oneself as a 'good patient', which are explored through the examples of 'time wasting', the Be Clear on Cancer campaign, and discrepant reports of patient interval length from this study.

Background: Tuberculosis remains an important public health problem especially in sub-Saharan Africa. Nigeria currently ranks 4th among the 22 high Tuberculosis (TB) burden countries with an estimated prevalence of 338/100,000 population. Few studies have utilized spatial data analysis techniques in the understanding of the pattern of distribution and possible correlates of TB especially in Africa. This study examines the spatial distribution of TB and its associated socioeconomic determinants in Nigeria. Methods: The study used an ecological design based on the 774 Local Government Areas (LGAs) in Nigeria as the spatial units. Initial exploratory analysis used measures of spatial autocorrelation (Global and Local Moran’s test statistics). The associations between TB incidence and nine covariates were assessed using a spatial regression analysis in the R statistical package. Result: A total of 100,217 TB cases were notified in 2013. There is significant spatial autocorrelation among case notifications rates (CNR). Spatial regression analysis identifies 138 (17%) of LGAs with high TB risks and finds a significant relationship between household size, urban residence access to transportation, population density, number of TB diagnostic services and TB. An index defining socioeconomic status, living in a single room, TB treatment centres and total health facilities are not significantly associated with TB CNR. Conclusion: The study presents a national picture of TB spatial heterogeneity at the lowest administrative level in Nigeria with the identification of high risk LGAs. This information can assist policy makers to rationally plan targeted specific interventions to effectively control TB while addressing the underlying socioeconomic risk factors in the country.