Through a post-colonial narrative turn, scholars created space for alternative illness narratives to be performed; narratives that reflected the fragmented and unpredictable ways of ailing bodies, and allowed for multiple and diverse identities to be constructed. However, even with this post-colonial turn, illness narratives in U.S. culture often depict situations in which individuals overcome their illnesses, and death is somehow avoided (Langellier & Peterson, 2004), which present potential constraints for what narratives individuals at the end-of-life (EOL) are able to tell and what identities they are able to construct. Using post-colonial narrative theory (Frank, 1995) as a framework, I engaged in a thematic narrative analysis of 16 hospice patient narratives, to understand whether narratives and identity constructions are constrained for dying individuals as they attempt to make sense of the end-of-life. Patients constructed the five identities of the experienced individual, the believer, the ailing individual, the good dier, and the individual who is still living, through several themes. Ideals of both post-colonialism and modernism were present in identity constructions, suggesting some acceptance of alternative narratives for individuals at the EOL. However, notably a new type of colonization emerged as patients' identity constructions and themes reflected elements of ars moriendi or the good death (Faust, 2008). Specifically, it appears that end-of-life narratives must reflect that the individual nearing the end-of-life is doing so in a culturally acceptable way which involves acceptance, sacrificial or selfless qualities, dying gladly, and dying not alone. This nuanced type of colonization suggests that specific illness situations might present unique narrative colonization. I end by offering practical implications for health care providers and family. Specifically, these findings might inform traditional practitioners and encourage them to broaden the clinical definition of the good death, with an understanding that elements such as esteem and emotional support or empowerment might be paramount for some patients' good deaths. Additionally, these findings offer awareness to family members regarding cultural expectations of the good death, so that they might consider whether they are adding pressure to their loved ones to achieve such a death.

Although serious illness is often associated with aging in contemporary society, increasing numbers of young adults are being diagnosed with a variety of serious illnesses. In order to learn more about what it is like to be seriously ill during young adulthood, I completed a qualitative study with ten young women who had recently been affected by a life-threatening or chronic illness. The research was informed by a theoretical approach based on social constructionist and phenomenological principles that recognize that physiological processes such as illness are socially mediated and given meaning within a certain socio-cultural context. Thus,the life course and its corresponding stages are not universal or biologically determined, but rather are social constructions based on socio-cultural factors and the meanings given to certain biological events. This research involved participants between the ages of 20 and 37 from around Saskatchewan who had been affected by a serious illness within the previous three years. The methodological approach that I utilized was interpretive and drew upon phenomenological, feminist, and participatory visual approaches to qualitative research. The young women participated in phenomenological interviews and a photovoice project that explored their lived experiences of serious illness and the specific issues that they faced because of illness. I analyzed the data thematically, incorporating phenomenological concepts of embodiment, temporality, and relationality. Although the interview and photographic data highlighted a range of experiences, the data highlighted several similarities among participants. Foremost, the data revealed that serious illness was highly disruptive for the young women; specifically, participants were required to negotiate disruptions to their sense of embodiment, everyday lives, expectations for the future, and social relationships. Ultimately, serious illness brought about embodied and social experiences that conflicted with how participants had previously envisioned young adulthood and their life course. As such, their experiences of illness had profound implications for their self identity and brought about a complex process of trying to make sense of illness. Based on these findings, I conclude that the young women experienced and made sense of illness within the context of socio-cultural expectations related to age and the life course, as well as gender. I also identify the implications of this research for health care and support services aimed at this population.

Although serious illness is often associated with aging in contemporary society, increasing numbers of young adults are being diagnosed with a variety of serious illnesses. In order to learn more about what it is like to be seriously ill during young adulthood, I completed a qualitative study with ten young women who had recently been affected by a life-threatening or chronic illness. The research was informed by a theoretical approach based on social constructionist and phenomenological principles that recognize that physiological processes such as illness are socially mediated and given meaning within a certain socio-cultural context. Thus,the life course and its corresponding stages are not universal or biologically determined, but rather are social constructions based on socio-cultural factors and the meanings given to certain biological events. This research involved participants between the ages of 20 and 37 from around Saskatchewan who had been affected by a serious illness within the previous three years. The methodological approach that I utilized was interpretive and drew upon phenomenological, feminist, and participatory visual approaches to qualitative research. The young women participated in phenomenological interviews and a photovoice project that explored their lived experiences of serious illness and the specific issues that they faced because of illness. I analyzed the data thematically, incorporating phenomenological concepts of embodiment, temporality, and relationality. Although the interview and photographic data highlighted a range of experiences, the data highlighted several similarities among participants. Foremost, the data revealed that serious illness was highly disruptive for the young women; specifically, participants were required to negotiate disruptions to their sense of embodiment, everyday lives, expectations for the future, and social relationships. Ultimately, serious illness brought about embodied and social experiences that conflicted with how participants had previously envisioned young adulthood and their life course. As such, their experiences of illness had profound implications for their self identity and brought about a complex process of trying to make sense of illness. Based on these findings, I conclude that the young women experienced and made sense of illness within the context of socio-cultural expectations related to age and the life course, as well as gender. I also identify the implications of this research for health care and support services aimed at this population.

This dissertation explores four narrative texts written about AIDS/HIV and evaluates each one by applying Kenneth Burke's redemption drama, consisting of guilt, purification, and redemption. The methodology is a close textual analysis using rhetorical analysis as a way to highlight the use of the redemption drama in language. The first chapter explores the history of AIDS/HIV and makes the argument for using Burke's rhetorical approach. The second chapter briefly highlights the plot of the four narratives and provides background information and context for each book. The third chapter applies the concept of guilt to all four narratives. The fourth chapter uses purification, breaking it down into mortification and victimage. Chapter five explains the way each protagonist and reader has found redemption. Chapter six concludes the research and offers limits and possible areas for future study. This research shows that with illnesses that carry a stigma, like HIV/AIDS, those ill often feel the need to defend themselves and their mode of infection to others. Using Burke's redemption drama, an analyst can study language use to show how these individuals defend their medical status to others, and how this allows them to redefine both themselves and their ailments.

For those living in resource rich countries such as Canada a positive HIV diagnosis no longer means an imminent death. In response to this change, numerous treatment and therapeutic institutions have arisen to assist individuals with managing their illness. Illness narratives then, the stories people tell and retell about their illness experience, are constructed by and within this multiplicity of medical frameworks that can interact in ways that are both complimentary and contradictory. Drawing on ethnographic data obtained through two months of participant observation and seven in-depth interviews at an HIV/AIDS treatment facility in Vancouver, British Columbia I discuss how illness narratives reveal the presence of and an orientation towards the powerful discourses of medicine. Some of the frameworks evident in the narratives I examine include biomedical understandings of health and disease, support group dialogues on self-empowerment, tenets of complementary and alternative medicines, clinical models of low-threshold access to health care, notions of health services as a human right, and addiction treatment concepts. In order to afford a place for the institutional discourses of medicine in my analysis, the subjective experience of illness is contextualized with reference to it’s situatedness amongst the myriad of other voices that both construct and constrain narrative production. Ultimately, I seek to demonstrate how the incorporation of disparate institutional voices into a subjective story of illness reflects the development of a unique orientation to the institutions of medicine an understanding that I conceptualize as medical consciousness.

Emerging conversations within oncology have drawn more attention to cancer among young adults (ages 18-45). Recent research has illuminated many of the psychosocial difficulties young adults face as they go through the many trials and tribulations of chronic illness. However, a subject still understudied, much is unclear about the personal as well as the cultural implications of being diagnosed during this period of time. In a book of cancer stories, performer and young adult cancer patient Kairol Rosenthal (2009) expressed her frustration with what she saw as “stereotypes” promulgated by the limited public discourses that exist on the subject (p. 7). She sought to counterbalance these representations with stories capturing the “complexities of our real daily lives” (p. 7). Indeed, in oncological discourses young adults tend to be cast in oversimplified terms, based upon cultural expectations about what young adulthood should be and pressures to conform to those standards. Intersecting with dominant discourses within narrative identity development, two imperatives are placed upon young adults’ stories: integration of different life experiences and selves into a coherent narrative and developing a sense of self-authorship in the direction of one’s life. What seems to be lost in these imperatives within the existing research is what is at stake for individual lives (a phenomenological perspective) and how those stakes are negotiated or contested with hegemonic trajectories of life (a critical perspective). Receptive to Rosenthal’s critique of dominant discourses around cancer and young adulthood, the purpose of this thesis was to explore the complexity and diversity of young adults living with cancer. More specifically, I intended to interrogate some of their existential and biographical challenges as expressed in their narratives of cancer, as well as their engagements with ideological constructions of young adulthood, namely, the expectations of narrative coherence and self-authorship. This research marked a departure from most studies on the subject in its qualitative methodology (i.e., narrative analysis) and in its explicit evaluation of the effects of cultural discourses on young adults’ attempts to make meaning. More generally, this research shows the importance of language—in discourses, narratives, and metaphors—in constructing and communicating illness experiences. For this project, I gathered a mix of written and oral narratives (through semi-structured interviews) from 21 participants from across Canada. The foci of analyses were on what could be called narrative ‘moments of meaning’ and ‘moments of being,’ that is, situated expressions of how they made sense of their worlds and themselves. Many of these were critical moments in the sense of questioning and resisting dominant discourses of cancer and young adulthood. Their moments of meaning often expressed negotiation of personal desires and innovative intentions with familiar cultural narratives or “prototypical plots” (Good, 1994)—including stories of battling cancer, embarking on a life journey, nearing recovery, encountering unpredictability and mystery, and living with chaos. These moments of meaning served an array of purposes well beyond the expected function of constructing a coherent narrative. When telling of identity disruptions and the liminality of cancer, participants produced both more orderly moments of being (e.g., survivor, patient, or warrior identities) and more liminal moments of non-being (e.g., victim, phoenix, or trickster identities). Self-authorship seemed to be present among the former, while the latter expressed less control and certainty of being—which was not always seen as a problem. These moments of being and non-being were collaborated and contested within the intersubjective spaces of their clinical relationships, local worlds, and cancer patient communities. More specific to their age group, their moments of being and non-being often related to what may be understood as developmental identities, including the ‘traditional milestones’ such as individual autonomy, family (i.e., marriage and parenthood), and vocation (i.e., getting an education and building a career). In their struggles they sometimes reaffirmed these cultural ideals toward identity integration and other times resisted them as “normalizing ideologies” (Becker, 1997) of young adulthood. As part of these larger negotiations of meaning and being, the participants expressed struggles to understand the moral significance of their illnesses. Confronted with what may be called “causal ontologies” of suffering (Shweder, 1997), they spoke of different etiological models of cancer’s origins as well as reconciliatory models for living with cancer in the future. Their narratives sometimes led toward “remoralization” (Kleinman, 1988)—couching experiences of suffering in terms of a moral order (narrative coherence) and personal responsibility (self-authorship)—and sometimes led away from it, depending on whether they believed their illnesses originated from events in their personal and social lives. Overall, the participants in this study communicated complex and potentially chronic existential challenges. In many ways their narratives resisted dominant representations of young adults with cancer—and of cancer patients in general—suggesting that such representations need to be rethought. Their critical moments of meaning and being may serve as counternarratives to the stereotypes of concern to Rosenthal and many other cancer patients. Specifically, their narratives revealed the merits and limits of the ideological construction of young adulthood as a time of narrative coherence and self-authorship. This study has important implications for future health research and psychosocial support in the field of oncology; building upon a “narrative medicine” (Charon, 2006), sensitivity to how language is used among young adult cancer patients may lead toward more inclusive clinical practices.

For those living in resource rich countries such as Canada a positive HIV diagnosis no longer means an imminent death. In response to this change, numerous treatment and therapeutic institutions have arisen to assist individuals with managing their illness. Illness narratives then, the stories people tell and retell about their illness experience, are constructed by and within this multiplicity of medical frameworks that can interact in ways that are both complimentary and contradictory. Drawing on ethnographic data obtained through two months of participant observation and seven in-depth interviews at an HIV/AIDS treatment facility in Vancouver, British Columbia I discuss how illness narratives reveal the presence of and an orientation towards the powerful discourses of medicine. Some of the frameworks evident in the narratives I examine include biomedical understandings of health and disease, support group dialogues on self-empowerment, tenets of complementary and alternative medicines, clinical models of low-threshold access to health care, notions of health services as a human right, and addiction treatment concepts. In order to afford a place for the institutional discourses of medicine in my analysis, the subjective experience of illness is contextualized with reference to it’s situatedness amongst the myriad of other voices that both construct and constrain narrative production. Ultimately, I seek to demonstrate how the incorporation of disparate institutional voices into a subjective story of illness reflects the development of a unique orientation to the institutions of medicine an understanding that I conceptualize as medical consciousness.

For those living in resource rich countries such as Canada a positive HIV diagnosis no longer means an imminent death. In response to this change, numerous treatment and therapeutic institutions have arisen to assist individuals with managing their illness. Illness narratives then, the stories people tell and retell about their illness experience, are constructed by and within this multiplicity of medical frameworks that can interact in ways that are both complimentary and contradictory. Drawing on ethnographic data obtained through two months of participant observation and seven in-depth interviews at an HIV/AIDS treatment facility in Vancouver, British Columbia I discuss how illness narratives reveal the presence of and an orientation towards the powerful discourses of medicine. Some of the frameworks evident in the narratives I examine include biomedical understandings of health and disease, support group dialogues on self-empowerment, tenets of complementary and alternative medicines, clinical models of low-threshold access to health care, notions of health services as a human right, and addiction treatment concepts. In order to afford a place for the institutional discourses of medicine in my analysis, the subjective experience of illness is contextualized with reference to it’s situatedness amongst the myriad of other voices that both construct and constrain narrative production. Ultimately, I seek to demonstrate how the incorporation of disparate institutional voices into a subjective story of illness reflects the development of a unique orientation to the institutions of medicine an understanding that I conceptualize as medical consciousness. / Arts, Faculty of / Anthropology, Department of / Graduate

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京都大学 / 新制・課程博士 / 博士(医学) / 甲第24793号 / 医博第4985号 / 新制||医||1066(附属図書館) / 京都大学大学院医学研究科医学専攻 / (主査)教授 阪上 優, 教授 松村 由美, 教授 佐藤 俊哉 / 学位規則第4条第1項該当 / Doctor of Medical Science / Kyoto University / DFAM