Browsing by Subject "Illness"

Now showing 1 - 4 of 4
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    Alzheimer's Disease Narratives and the Myth of Human Being
    (2012-12-11) Rieske, Tegan Echo; Schultz, Jane E.; Johnson, Karen Ramsay; Tilley, John J.
    The ‘loss of self’ trope is a pervasive shorthand for the prototypical process of Alzheimer's disease (AD) in the popular imagination. Turned into an effect of disease, the disappearance of the self accommodates a biomedical story of progressive deterioration and the further medicalization of AD, a process which has been storied as an organic pathology affecting the brain or, more recently, a matter of genetic calamity. This biomedical discourse of AD provides a generic framework for the disease and is reproduced in its illness narratives. The disappearance of self is a mythic element in AD narratives; it necessarily assumes the existence of a singular and coherent entity which, from the outside, can be counted as both belonging to and representing an individual person. The loss of self, as the rhetorical locus of AD narrative, limits the privatization of the experience and reinscribes cultural storylines---storylines about what it means to be a human person. The loss of self as it occurs in AD narratives functions most effectively in reasserting the presence of the human self, in contrast to an anonymous, inhuman nonself; as AD discourse details a loss of self, it necessarily follows that the thing which is lost (the self) always already existed. The private, narrative self of individual experience thus functions as proxy to a collective human identity predicated upon exceptionalism: an escape from nature and the conditions of the corporeal environment.
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    Association Between Quality of Life and Depression in Dyads of Older Primary Care Patients and Family Members
    (Oxford University Press, 2022-12-20) Fowler, Nicole; Perkins, Anthony; Park, Seho; Schroeder, Matthew; Boustani, Malaz; School of Nursing
    Familial dyads experience illness as an interdependent unit. We evaluate the association of quality of life (QOL), as measured by physical (PCS) and mental health component (MCS) scores, with depression in dyads of older primary care patients and a family member. This is a cross sectional, descriptive study where QOL and depression were measured concurrently in the dyad using baseline data from 1809 dyads enrolled in a trial testing the benefits and harms of Alzheimer’s disease and related dementias (ADRD) screening. QOL was measured with the SF-36, depression was measured with the PHQ-9, and the association of depression with QOL was examined using an actor-partner interdependence model with distinguishable dyads. Patient mean (SD) age was 73.7 (5.7) years; 53.1% women; 85.1% white; 13.4% black. Family member mean (SD) age was 64.2 (13) years; 67.7% women; 13.4% black. A patient’s spouse/partner were 64.8% of family members. After controlling for dyadic relationship and gender, significant actor effects of depression on PCS for patient (β= -1.39; p< 0.001) and family member (β =-0.954; p< 0.001), and significant partner effects of depression on PCS for patient (β=-0.15, p< 0.05) and family member (β =-0.18; p< 0.01). There were significant actor effects of depression on MCS for patient (β =-1.2; p< 0.001) and family member (β=-1.2; p< 0.001), but depression had a significant partner effect on MCS only for patient (β = -0.08; p< 0.05). Among dyads participating in an ADRD screening trial, dyads with higher depression had lower QOL. Family member depression was associated with decreased family member and patient QOL.
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    Impact of personal experiences on career path, clinical practice, and professional endurance among hospice nurses caring for dying children
    (Sciedu, 2022) Porter, Amy S.; Reeves, Tegan J.; Zalud, Kristina; Applegarth, Jacob; Woods, Cameka; Gattas, Melanie; Rutt, Emily; Williams, Karen; Baker, Justin N.; Kaye, Erica C.; Cameka; Medicine, School of Medicine
    Context and objective: The multifaceted demands of pediatric hospice work often discourage nurses from pursuing the career route and may overwhelm nurses who choose to do the work, risking burnout. The relationship between nurses’ personal experiences and their decisions to pursue this difficult work, as well as their ability to sustain it, has not been studied previously. The study objective was to explore the influences of pediatric hospice nurses’ personal experiences on their career trajectories, their clinical approaches to caring for dying children, and their endurance in doing so. Methods: From the 551 community hospice nurses in Tennessee, Mississppi, and Arkansas who completed a survey as part of a previous study, purposive sampling was used to select a cohort of 41 nurses. Semi-structured interviews were conducted, recorded, and transcribed. Content analysis of interview transcripts was performed. Results: Nurses described three types of personal experiences that shaped their professional practice: 1) personal illness, 2) personal loss, and 3) parenthood. We identified two major themes characterizing how personal experiences influence their work: 1) leading them into the hospice field (“career trajectory”) and 2) strengthening their clinical practice (“clinical approach”) through four mechanisms: a) identifying tools for patient care, b) connecting with pediatric patients, c) connecting with bereaved families, and d) finding balance between competing priorities. Conclusions: Personal experiences of illness, loss, and parenthood influence hospice nurses’ career trajectories and how they care for dying children. Normalizing these influences and integrating reflection on them into hospice training may empower nurses to pursue pediatric hospice nursing, find meaning in the work, and build professional endurance.
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