Yes / The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia - like our participants - being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.

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.

The purpose of this thesis is to identify common themes presented in several illness narratives with specific attention paid to the relationship between patients and their physicians and patients and their families. Only illness narratives written in America and Western Europe were used for this thesis so the topic could be narrowed to the experience within the western biomedical field. While most research on illness narratives focuses on defining illness and illustrating the importance of introspective work, this thesis identifies patterns in a way that can shape the future treatment of chronically ill patients. This thesis also allows me to creatively explore a personal illness narrative, reinforcing these themes and contributing to the discussion of what physicians and families can do to make the illness experience more bearable for the patient.

This study involves listening to illness narratives embedded in in-depth life review processes. The method of multiple interview and multi-modal analysis and reflective responding utilised in the study aims to add to the existing field of research by expanding the understanding of what it is like to be heard or not heard, for people who are either patients, or family members. The study also aims to demonstrate how self-aware ,compassionate and reflective listening, particularly in healthcare relationships, can allow meaning to emerge from within the illness experience, thus enriching the wellbeing of patients, family members and their various healthcare professionals. / Stories of disruption arising within healthcare settings often confronted me during more than forty years of nursing experience and also resonated within my personal experiences. These stories express a gulf between patients, family members, or residents in healthcare institutions, and the healthcare organization and its staff. A recurring theme was that these people felt that they had not been listened to by those they trusted to give them care, with a lasting sense of disruption to their wellbeing. In focusing on the dimensions of reflective listening and intersubjective responding, the implications of being heard on the well being of both narrator and listener can be elucidated. An objective of the research became to articulate the attributes and values of compassionate, reflective listening and elucidate the complex nature of the narrating and listening relationship. (For complete abstract open document)

This study involves listening to illness narratives embedded in in-depth life review processes. The method of multiple interview and multi-modal analysis and reflective responding utilised in the study aims to add to the existing field of research by expanding the understanding of what it is like to be heard or not heard, for people who are either patients, or family members. The study also aims to demonstrate how self-aware ,compassionate and reflective listening, particularly in healthcare relationships, can allow meaning to emerge from within the illness experience, thus enriching the wellbeing of patients, family members and their various healthcare professionals. / Stories of disruption arising within healthcare settings often confronted me during more than forty years of nursing experience and also resonated within my personal experiences. These stories express a gulf between patients, family members, or residents in healthcare institutions, and the healthcare organization and its staff. A recurring theme was that these people felt that they had not been listened to by those they trusted to give them care, with a lasting sense of disruption to their wellbeing. In focusing on the dimensions of reflective listening and intersubjective responding, the implications of being heard on the well being of both narrator and listener can be elucidated. An objective of the research became to articulate the attributes and values of compassionate, reflective listening and elucidate the complex nature of the narrating and listening relationship. (For complete abstract open document)

Due to medical advances, there has been an increased number of burn survivors, thus creating a dire need for research on burn recovery. As 70% of burn-injured patients are male, it is especially important to examine how men understand healing from a burn injury. One way to explore this is by investigating men’s stories of healing because it is through and by the experiential space of narrative that individuals are provided with the tools to reflect on and find meaning from their experiences of burn injuries. This thesis examined narratives men constructed about healing from a burn injury. Adult men with 0.5 – 30% total body surface area burned were recruited for an in-depth semi-structured interview, two to fifty-two weeks post-injury. Narrative analysis of the transcripts revealed that men principally constructed a dominant narrative that involved wanting to return to a life that was “normal” as soon as possible. I argue that these stories are indicative of a restitution storyline, that is, they follow a plotline in which the men view themselves as being temporarily injured but soon recovered. I then explore how agency, or more specifically, how agentic behaviours facilitate these narratives about men returning to their pre-injury selves. Men also constructed narratives about boredom, grief and regrets at the same time as the restitution narratives. These narratives indicated distress because they were counter to the stories that the men wanted to construct. The discussion contextualizes the men’s restitution narratives in terms of masculine socialization, and considers the role of agency in informing narrative plotlines. Lastly, recommendations to health care providers who treat men that have survived a burn injury are provided.

The thesis was designed to gain insight into how Alzheimer’s disease influences selfhood from first-personal accounts of illness. The focus of the study was narrowed further by concentrating on the autobiographies of individuals diagnosed with Early-Onset Alzheimer’s disease (EOAD). The purpose of this thesis was to analyze the autobiographies of individuals with EOAD with the aim of understanding their selfhood. In this thesis I argue that, Alzheimer’s disease may influence a change in self, however, the self is not lost entirely. This thesis draws on the philosophical conception of narrated self as it allows for one perpetually constructed self, whereby a change in self does not necessarily mean the self is lost entirely. Through an interpretive analysis of six autobiographical accounts of Alzheimer’s, this thesis demonstrates that Alzheimer’s disease influences a loss of sense of self but that autobiography enables individuals with Alzheimer’s to (re)construct self.

The focus of this research is on the specific relational and particular circumstances that result in an emerging cancer identity expressed through the daily lived- experiences of emerging adults via personal weblogs. Identity, a complex term in its own right, is discussed here under the rubric of social identity as processual, therefore it is expected that an emerging cancer identity will develop as the participants begin to narrativize their daily experiences with cancer on their weblogs. By critically engaging with notions of emerging adulthood theories with theories on the sociology of death and dying and illness narratives, this research seeks to understand the specific psychosocial changes that occur as the participants engage with their illness on their weblogs, which arguably contributes to an emerging cancer identity.

Due to medical advances, there has been an increased number of burn survivors, thus creating a dire need for research on burn recovery. As 70% of burn-injured patients are male, it is especially important to examine how men understand healing from a burn injury. One way to explore this is by investigating men’s stories of healing because it is through and by the experiential space of narrative that individuals are provided with the tools to reflect on and find meaning from their experiences of burn injuries. This thesis examined narratives men constructed about healing from a burn injury. Adult men with 0.5 – 30% total body surface area burned were recruited for an in-depth semi-structured interview, two to fifty-two weeks post-injury. Narrative analysis of the transcripts revealed that men principally constructed a dominant narrative that involved wanting to return to a life that was “normal” as soon as possible. I argue that these stories are indicative of a restitution storyline, that is, they follow a plotline in which the men view themselves as being temporarily injured but soon recovered. I then explore how agency, or more specifically, how agentic behaviours facilitate these narratives about men returning to their pre-injury selves. Men also constructed narratives about boredom, grief and regrets at the same time as the restitution narratives. These narratives indicated distress because they were counter to the stories that the men wanted to construct. The discussion contextualizes the men’s restitution narratives in terms of masculine socialization, and considers the role of agency in informing narrative plotlines. Lastly, recommendations to health care providers who treat men that have survived a burn injury are provided.

The thesis was designed to gain insight into how Alzheimer’s disease influences selfhood from first-personal accounts of illness. The focus of the study was narrowed further by concentrating on the autobiographies of individuals diagnosed with Early-Onset Alzheimer’s disease (EOAD). The purpose of this thesis was to analyze the autobiographies of individuals with EOAD with the aim of understanding their selfhood. In this thesis I argue that, Alzheimer’s disease may influence a change in self, however, the self is not lost entirely. This thesis draws on the philosophical conception of narrated self as it allows for one perpetually constructed self, whereby a change in self does not necessarily mean the self is lost entirely. Through an interpretive analysis of six autobiographical accounts of Alzheimer’s, this thesis demonstrates that Alzheimer’s disease influences a loss of sense of self but that autobiography enables individuals with Alzheimer’s to (re)construct self.