Meeting the health care needs of people with chronic conditions presents one of the greatest challenges for 21st century health care system renewal. Appropriate redesign of health care delivery with this complex patient population in mind requires information from many sources. Although much is known about the patient experience of chronic illness much less is understood about how patients navigate their health care delivery context. The purpose of this qualitative study was to examine the point of view of patients dealing with multi-morbidity. These people have a unique understanding of how health care delivery links across time, place, and settings because of the care they require for their multiple chronic conditions. An interpretive descriptive design was used to examine patient navigation from the perspective of 20 adult patients with chronic kidney disease, and co-existing diagnoses of diabetes mellitus and/or cardiovascular disease. The findings generated from iterative, constant comparative analysis add important patient perspectives about health care system navigation. From the consumer perspective health care navigation is challenging, requiring (a) ongoing discovery about the complex social structures that make up the health care system, and (b) learning how to strategically use this knowledge to manage the health care system. The findings highlight the disjunctures and misalignments in the health care delivery system, the cumulative health care-related burden of multiple chronic conditions for consumers, and consumer concerns about subtle inequities in the health care system. As health care renewal efforts gain momentum new knowledge from the perspective of consumers, such as that captured in this research, is important. The consumer perspective provides a valuable opportunity for stakeholders in health care policy- and decision-making to contextualize and make greater sense of the information used in making decisions about health care service delivery for vulnerable populations, like patients with multiple chronic conditions.

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Diagnosis with a serious chronic illness is a powerful lived experience that touches all aspects of the individual’s life and which necessitates great adaptation across the lifespan. Ambiguity is a lived dimension of illness that is often expressed in illness stories, capturing the new state between health and illness which has also been described as a ‘liminal’ or in-between state of being (Little, Jordens, Paul, Montgomery & Philipson, 1998). Health care providers hold socially prescribed roles in which they are expected to be professionally competent and immune to personal illness. The lived experiences of health care providers who have been diagnosed with serious chronic illness were explored in this study to better attempt to describe the phenomenon. Six health care providers from various professional backgrounds participated in the research. A semi-structured interview guided the conversation between the researcher and the participant. The participants were encouraged to tell the story of what has happened to them and to reflect on the impact to their lives and practice. Participants were also asked to reflect on their perceived level of support and preparedness via their professional training, and to share any recommendations they might have for others going through this experience. The data gathered were found to be rich in both depth and detail. The data were analyzed using van Manen’s interpretive phenomenological method. Significant statements created formulated meanings or categories, which became organized around eight themes. The themes formed several clusters. The theme clusters were then developed into a recognizable pattern of sub-themes which helped to further 7 describe the essence of the experience of health care providers living with serious, chronic illness. The findings of the research were found to be consistent with the literature that describes the lived experience of seriously ill health care providers as liminal in essence. Based on the research findings recommendations for social work practice, administration and policy, educational training reform and future research were outlined.

This thesis explores the argument that inherent in medical treatment interventions for chronic hepatitis C, there are certain implicit ontological assumptions about the relationship between the body, disease, and society. Focusing primarily on biomedical practices, it is argued that these assumptions might have a profound effect on the world-views of patients undergoing them. This in turn, might have far-reaching sociological implications. Using a methodology specifically developed for the purpose of explicating the ontological assumptions inherent in medical treatment, the visual and narrative texts produced by thirteen hepatitis C positive participants are examined. A deconstructive analytical approach is then applied to these texts as they relate to the treatment interventions pursued by participants. An exploration of the way participants engage with, negotiate, and/or resist the discourses and assumptions inherent in biomedicine, traditional Chinese medicine, and to some extent naturopathy, is conducted. Two broad ways in which the participants visualise the relationship between disease and their bodies, relating to treatment undertaken, are identified. The possible social implications of these are then suggested. The first, and predominant view, is aligned with biomedicine. The relationship between disease and the body is antagonistic in this view. It is suggested that this way of seeing might naturalise xenophobic attitudes and perpetuate social conflict. The marginal view is related to non-biomedical treatments for hepatitis C. The relationship in this case is the result of a negotiated accommodation with the disease. It is suggested that such a view might allow for non-resistant social tolerance of that which is perceived of as new and different. This qualitative study contributes to the body of knowledge in the field of the sociology of health and illness in two ways: Firstly, it proposes a methodology that may be taken up or adapted for future sociological research, and secondly, it suggests something of the social and political nature of treatment decisions made by people living with chronic hepatitis C.

In a culture that values independence and productivity, non-normative bodies are understood as broken and useless. Disability is framed in medical terms, as a problem that should be resolved with prevention or cure. In response to this ableist perception of disability, the disability community has long argued that disability is not a medical issue but a social one, and its focus has been on increasing physical access and ending discrimination. Though the disability rights movement has made gains for some disabled people with this approach, they have excluded many others, including the chronically ill, who are disabled both by society and by their bodies themselves. Thus, chronically ill young adults in America face social exclusion and isolation, living in a culture where neither the mainstream nor the primary counter-narratives surrounding disability encompass their experiences. This thesis uses interviews conducted with chronically ill young adults to explore these issues, touching on disability identity, success narratives, and the Tumblr chronic illness community, ultimately arguing that the disability community needs to base its understanding of disability on a relational/political model that is politicized and inclusive.

Diagnosis with a serious chronic illness is a powerful lived experience that touches all aspects of the individual’s life and which necessitates great adaptation across the lifespan. Ambiguity is a lived dimension of illness that is often expressed in illness stories, capturing the new state between health and illness which has also been described as a ‘liminal’ or in-between state of being (Little, Jordens, Paul, Montgomery & Philipson, 1998). Health care providers hold socially prescribed roles in which they are expected to be professionally competent and immune to personal illness. The lived experiences of health care providers who have been diagnosed with serious chronic illness were explored in this study to better attempt to describe the phenomenon. Six health care providers from various professional backgrounds participated in the research. A semi-structured interview guided the conversation between the researcher and the participant. The participants were encouraged to tell the story of what has happened to them and to reflect on the impact to their lives and practice. Participants were also asked to reflect on their perceived level of support and preparedness via their professional training, and to share any recommendations they might have for others going through this experience. The data gathered were found to be rich in both depth and detail. The data were analyzed using van Manen’s interpretive phenomenological method. Significant statements created formulated meanings or categories, which became organized around eight themes. The themes formed several clusters. The theme clusters were then developed into a recognizable pattern of sub-themes which helped to further 7 describe the essence of the experience of health care providers living with serious, chronic illness. The findings of the research were found to be consistent with the literature that describes the lived experience of seriously ill health care providers as liminal in essence. Based on the research findings recommendations for social work practice, administration and policy, educational training reform and future research were outlined.

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Adolescents with cystic fibrosis (CF) face unique stressors that require effective coping strategies. Although research suggests that coping may be an important moderator of adjustment to stress, previous studies have utilized generic coping measures that are not specific to the disease or context. Using the Role-Play Inventory of Situations and Coping Strategies (RISCS), a context-specific coping measure for adolescents with CF, the current study examined whether coping efficacy moderated the relationship between disease-related stress and health-related quality of life. Additionally, this study investigated the impact of two family-based behavioral interventions on adolescents’ coping skills: Behavioral Family Systems Therapy (BFST) and the Family Education Program (FEP). Although no direct effects of coping on HRQOL at baseline were found, resulted showed that effective coping buffered the negative effects of disease severity and stressor frequency on HRQOL in several domains. In addition, some evidence indicated that at the most severe end of the severity continuum, there may be thresholds at which effective coping strategies no longer exert their beneficial effects. Longitudinal models revealed that improvements in coping skills were associated with positive changes in HRQOL in different domains, depending upon treatment group. These findings highlighted the utility of using context-specific, sensitive coping measures when examining the moderating effects of coping, and the importance of identifying adolescents with poor coping skills and providing tailored interventions.

Chronic disease is the largest cause of death in the world. Yet little is known about how globalization forces affect the body and the experience of someone who is chronically ill. The need for specialized knowledge of subjective data is significant as it will assist us to improve our understanding and develop stronger nursing practices for people who are chronically ill. The purpose of this research is to understand the effect that globalization forces have on the personal experience of people living with chronic illnesses. People living with chronic illness from Canada and Colombia are participants in the study. The following research questions guided the study “What is it like to live with a chronic illness in the context of contemporary globalization forces? How do these political, economical and social forces affect the body of the chronically ill? Are experienced difficulties similar or different in a middle-income country as compared to a high-income country? The methodology for the study follows an interpretive inquiry approach using a critical hermeneutic phenomenological method. Hermeneutic phenomenology explores the various dimensions of human experience in human situations such as embodiment, spatiality, relationality and temporality. Critical pedagogy as a theoretical perspective invoking the work of Paulo Freire and Enrique Dussel is used to examine emerging findings in the context of globalization and resulting global inequities. This dissertation presents the experience of people who are chronically ill including access to health care, respect, compassion, social, political and legal exclusion, and calls for understanding and action on the part of health care professionals, policy makers and society. The findings urge us to move from merely acknowledging the difficulties people living with chronic illness endure in an age of globalization to action to bring about health care, social, and political reform through a process of conscientization and mutual transformation.

Background: Inflammatory bowel disease (IBD) is an umbrella term for ulcerative colitis and Crohn's disease. These are characterized by a chronic inflammation of the intestinal mucosa. Living with chronic illness meant that life changed significantly. Quality of life was affected for these individuals and was stressful in their lives.   Aim: The aim was to describe the experiences of living with inflammatory bowel disease.   Method: A qualitative literature review was chosen to analyze articles that were related to the aim of this study.   Results: Based on the chosen articles five themes were created; Commuting between hope and fear, symptoms of the disease and medication become everyday focus, struggling with  the new identity, desire to control the disease- do I control my illness or does it control me and social relationships are affected.   Conclusion: Inflammatory bowel disease is a distressing disease and can cause limitations in social life due to lack of knowledge by others about the disease. The affected felt a loss of control in their life due to the difficulty in managing the symptoms. They experienced a constant struggle and mixed emotions, such as anxiety, depression, stress, and denial of the disease, trying to feel like a healthy person.