This thesis examines the role of missionaries, the colonial government, and leprosy patients in the formation of leprosy settlements in Uganda, from the first inception of the settlements in 1927, until 1951 when the nature of leprosy control in Uganda changed, with the government appointment of a Protectorate leprologist and the creation of more treatment centres. It focuses on four leprosy settlements opened between 1930 and 1934 by the Anglican Church Missionary Society (CMS) and the British and Irish Catholic Franciscan Missionary Sisters for Africa (FMSA) and Mill Hill Mission (MHM). Firstly, this thesis explores the ways in which the differing goals, ideologies, and resources of the Protestant CMS and the Catholic FMSA and MHM shaped the formation of and social environment within leprosy settlements in a highly Christianised and denominationally divided Uganda. Secondly, it examines the relationship between the CMS and Franciscan leprosy missions and the government, exploring the cooperation and conflict that their spiritual and medical priorities had upon the social lives of patients within Uganda’s leprosy settlements. Thirdly, this thesis assesses the extent to which missionaries consciously endeavoured to engineer a social environment for leprosy patients within settlements that conformed to their ideal of Christianised, modern African communities, as well the roles that healthy and leprous Ugandans chose to play in response to these attempts at social engineering. Missionaries and Ugandan leprosy patients had different priorities, but far from being passive receptacles of the ‘civilising’ mission, most leprosy patients were active agents in pursuing their own medical, social, and economic priorities through life in the settlements.

This thesis is based on 18 months ethnographic fieldwork in and around the National Heath Service (NHS) in Greater Manchester, UK, between 2011 and 2012. The fieldwork focused on practices and experiences of cancer care and the care of other related diseases (e.g. brain tumour, post surgical pain and cancer related mental illnesses) and primarily involved in-depth interview-based case studies with patients, carers and clinicians, as well as participant observation at hospital outpatient clinics and a local cancer centre. Over the past thirty years, the English NHS has been through numerous market- based structural reorganisation programmes broadly aimed at increasing provider competition and patient choice within the health service. At the same time, various new ways of configuring medical knowledge and reforming the ‘traditional clinical interaction’ have grown in influence in NHS care practices. This thesis seeks to record the ways in which new managerial technologies, clinical tools and medical and healthcare rationalities (e.g. risk medicine, patient pathways, diagnostic categories and the logic of patient choice) introduce new ways to experience disease and treatment. Following Das (2015), among others (see Biehl and Moran- Thomas 2009), I do not treat these abstract forms as dominating forces that over-determine experience and practice. But instead, I attend to how broad structures and rationalities become embedded in practices, experiences and biographies of illness and care. In particular, I focus on what is required for care to be accessed (or ‘activated’) in a context permeated by these competing systems of value and meaning.

Background: Providing unpaid care for a spouse, partner, relative or friend is a day-to-day reality. Carers in the context of cancer have a similar profile to carers in the UK. Lung Cancer is a low profile cancer but yet is the second most common cancer in Scotland associated with social deprivation, poverty, therapeutic nihilism, and stigma. The significant contribution by carers of people affected by cancer has resulted in their recognition as “partners in the delivery of care”.   Aim: To explore the experiences of the diagnosis and treatment of lung cancer from a carer’s perspective.   Methods: Unstructured interviews were undertaken with 15 carers of relatives with a lung cancer diagnosis. The individual with lung cancer identified carers. Data were analysed using a qualitative design and analysis in the grounded theory tradition.  Findings: Analysis of data from the carers indicated that whilst carers are engulfed by the cancer experience and face barriers and deficits of care, they have illustrated and demonstrated that they have their own assets, which are further enhanced by community and societal resources. Five categories were identified and a sense of carer resilience emerged. Subsequently the theory developed was fostering carer resilience in lung cancer care.     Discussion: Resilience emerged in carers at a time of increasing interest within the wider context of health and social care. Although resilience is not a new concept there are a lack of studies including carers in a cancer context and until now none in lung cancer. Resilience cannot and should not be fostered by one professional group and therefore an opportunity exists for collaboration between agencies involved in the provision of services for carers of relatives with cancer. The limitations of the study are acknowledged.   Conclusion: The findings from this study have implications for practice beyond healthcare and as Scotland embarks upon health and social care integration it is perhaps an opportune time to develop that. Findings highlighted the potential, strengths, interests, abilities and capacity of carers rather than their limitations. Future research could look specifically at resilience in carers of relatives with lung cancer in addition to testing interventions to enhance carers’ resilience.

Due to changes in UK and Scottish policy and NHS directives, there have been many changes and improvements in the way information is provided to patients affected by cancer and their families over the last decade. The information provided should be accurate, detailed and tailored to the individual’s needs across the whole of their cancer trajectory. People affected by laryngeal cancer could be classed as a “Cinderella” group as there is a lack of research with this group of patients and their families, in comparison to other types of cancer, even though the impact of treatment can have a profound and debilitating effect on the individual and their family’s quality of life. How this group of patients and their families use and source information to help them make sense of their experiences across their trajectory is unknown, therefore this study explored the role of information based on the experiences of people affected by laryngeal cancer across their cancer trajectory. The study adopted an interpretive prospective longitudinal approach, using two in-depth qualitative interviews with twenty patients and eighteen carers from across the main treatment pathways associated with this type of cancer. The data were analysed using Framework Analysis and influenced by Dingwall’s Illness Action Model. Four broad thematic headings were developed to explain the role of information: “Search for Normality”, “Illusion of Certainty”, “Reality of Uncertainty” and “Culture of Caring”. Relationships were identified between these headings at four key stages across the cancer trajectory. The ii broad theme “Search for Normality” overarched the whole of the cancer trajectory explaining how information was sourced and used to help this group understand their experience of symptoms. The main findings from the study show that two broad categories of information are used: information from health professionals and experiential information from one’s own and others’ experiential knowledge of health and illness. Both categories of information are sourced and used in different ways at different stages over the course of the trajectory and become inextricably linked over time. The study shows that information is not an entity that can be studied on its own but needs to be studied and explained in the ways it is situated, used and experienced within the context of the complex needs and experiences of this group of patients and their families. This study is the first longitudinal study to provide an explanation of the role of information with people affected by laryngeal cancer across their cancer trajectory. The findings show how the different types of information used from the various sources influence how people affected by laryngeal cancer perceive and understand their diagnosis, treatment and the outcome of treatment. The study findings suggest that health professionals need to situate information in the context of the individual’s understanding and prior knowledge of health and illness to ensure that it does not set unrealistic expectations, with a clear need for continuity and supportive care identified in the post-treatment and follow-up phases.