Browsing by Author "Medical Humanities and Health Studies, School of Liberal Arts"

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    How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
    (BMJ, 2018) Kirkman, Anna Obergfell; Hartsock, Jane A.; Torke, Alexia M.; Medical Humanities and Health Studies, School of Liberal Arts
    Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent’s preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.
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    Voices from the Newspaper Club: Patient Life at a State Psychiatric Hospital (1988-1992)
    (Springer, 2020-05-21) Beckman, Emily; Nelson, Elizabeth; Labode, Modupe; Medical Humanities and Health Studies, School of Liberal Arts
    The authors conducted a qualitative analysis of thirty-seven issues of The DDU Review, a newsletter produced by residents of the Dual Diagnosis Unit, a residential unit for people who had diagnoses of developmental disability and serious mental illness in the Central State Hospital (Indiana, USA). The analysis of the newsletters produced between September 1988 and June 1992 revealed three major themes: 1) the mundane; 2) good behavior; and 3) advocacy. Contrary to the authors’ expectations, the discourse of medicalization—such as relations with physicians, diagnoses, and medications—receive little attention. Instead, the patient-journalists focus on prosaic aspects of institutional life. The patients used their writing as a form self-definition and advocacy. The authors argue that even though it is tempting to consider the patients’ emphasis on good behavior as evidence of institutional control, internalized discipline, and medicalization, a more nuanced interpretation, which focuses on how the patients’ understood their own experiences, is warranted. Researchers must also recognize the ways in which The DDU Review reveals the patient-journalists’ experience of an institutional life that includes non-medical staff (attendants, secretaries, and therapists), varied social relationships among patients, and negotiated freedoms.