Chronicity, care and complexity (original) (raw)
Abstract
This book follows from the international Making Sense of Chronicity conference, held at Mansfield College, Oxford in September 2012. This was an interdisciplinary conference in which 26 papers were presented around aspects of chronic illness research and experience. Speakers came from a variety of academic backgrounds, including anthropology, medicine, nursing, occupational therapy, physiotherapy, psychology, public health, sociology and theology. In addition to this, their personal involvement with chronicity possibly deserves a study in itself. They were researchers, clinicians, people with chronic conditions, as well as friends, family and carers, all interacting with, and making sense of, chronicity in their own way.
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- 9 Keri L. Rodriguez, et al., '"They Diagnosed Bad Heart": A Qualitative Exploration of Patients' Knowledge about and Experiences with Heart Failure', Heart & Lung 37, No. 4 (2008): 257-265.
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- Maurice Merleau-Ponty, What is Phenomenology? (Cross-Currents, 1956), 59- 70.
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- Noblit and Hare, Meta-Ethnography, 28.
- Thornhill, et al., Experiences of Living with Congestive Heart Failure: A Qualitative Study, 155-175.
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- Falk, Wahn and Lidell, Keeping the Maintenance of Daily Life in Spite of Chronic Heart Failure, 192-199.
- Ibid.
- Mahoney, An Ethnographic Approach to Understanding the Illness Experiences of Patients with Congestive Heart Failure and their Family Members, 429-436.
- Pihl, Fridlund and Mårtensson, Patients' Experiences of Physical Limitations in Daily Life Activities when Suffering from Chronic Heart Failure: A Phenomenographic Analysis, 3-11.
- Eric H. Erikson, The Life Cycle Completed (New York: W.W, Norton & Company, 1997).
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- Jaarsma, et al., Quality of Life and Symptoms of Depression in Advanced Heart Failure Patients and their Partners, 233-237.
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- Falk, Wahn and Lidell, Keeping the Maintenance of Daily Life in Spite of Chronic Heart Failure, 192-199.
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- Janet Gavin Knecht has practiced as a critical care clinical nurse specialist since 1984. She is currently an assistant professor of Nursing at University of Saint Joseph, West Hartford, CT, where she is responsible for the advanced medical surgical programme content, as well as clinical practicum component. Her primary research focus is the lived experience of heart failure. Notes
- Rose Richards, '"You Look Very Well for a Transplant": Autoethnographic Narrative and Identity in Chronic Kidney Disease, Kidney Failure and the Life Post-Transplant' (PhD diss., Stellenbosch University, 2012), 14.
- Hilde Lindemann Nelson, Damaged Identities, Narrative Repair (New York, NY: Cornell University Press, 2001).
- Kay K. Cook, 'Medical Identity: My DNA/Myself', in Getting a Life: Everyday use of Autobiography, eds. Sidonie Smith and Julia Watson (Minneapolis, Minnesota: University of Minnesota Press, 1996), 62-85; Kathleen McDougall, '"Ag Shame" and Superheroes: Stereotype and the Signification of Disability', in Disability and Social Change: A South African Agenda, eds. Brian Watermeyer, Leslie Swartz, Theresa Lorenzo, Marguerite Schneider and Mark Priestly (Cape Town, South Africa: HSRC Press, 2006), 387-400; Margrit Shildrick, Embodying the Monster: Encounters with the Vulnerable Self (London: Sage, 2002).
- Rosemarie Garland Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York, NY: Columbia University Press, 1997).
- Shildrick, Embodying the Monster, 27.
- National Kidney Disease Education Program, 'Chronic Kidney Disease in the United States', (2005), accessed September 19, 2011, http://www.nkdep.nih.gov/resources/nkdep\_ckd\_presentation.ppt. Of the approximately 100,900 organ transplants done worldwide, approximately 69,300 are kidney transplants (WHO Global observatory on donation and transplantation, 2010).
- Leslie A. Reimer, 'The Power of the Individual's Story', Second Opinion 12 (1989): 40-47.
- 9 Instances of debates about the ethics of organ transplantation include: Nancy Scheper-Hughes, 'The Tyranny of the Gift: Sacrificial Violence in Living Donor Transplants', American Journal of Transplantation 7 (2007): 507-511; Magi Sque, Sheila Payne and Jill McLeod Clark, 'Gift of Life or Sacrifice?: Key Discourses for Understanding Organ Donors' Decision-Making by Families', Mortality 11 (2006): 117-132. Researchers who draw attention to the paucity of qualitative research about kidney disease: David B. Nicholas, Gail Picone and Enid K. Selkirk, 'The Lived Experiences of Children and Adolescents with End-Stage Renal Disease', Qualitative Health Research 21 (2011): 162-173; Rose Richards, 'Writing the Othered Self: Autoethnography and the Problem of Objectification in Writing about Illness and Disability', Qualitative Health Research 18 (2008): 1717-1728. Researchers who carry out renal research against a context of larger social issues include: Shawna Faber, Suzanne de Castell and Mary Bryson, 'Renal Failure: Towards a Sociocultural Investigation of an Illness', Mind, Culture, and Activity 10 (2003): 143-167;
- Renée C. Fox and Judith P Swazey, The Courage to Fail: A Social View of Organ Transplants and Dialysis (Chicago, IL: University of Chicago Press, 1978);
- Renée C. Fox and Judith P. Swazey, Spare Parts: Organ Replacement in American Society (Oxford: Oxford University Press, 1992);
- Kristine Martin-McDonald, 'Dialysis-Dependency: The Reformulated or Remnant Person', Contemporary Nurse 16 (2003/4): 151-160; Yvonne White and Brin F. S. Grenyer 'The Biopsychosocial Impact of End-Stage Renal Disease: The Experience of Dialysis Patients and Their Partners', Journal of Advanced Nursing 30 (1999): 1312-1320.
- Jerry McCauley. 'Long-Term Graft Survival in Kidney Transplant Recipients', (2004), accessed September 19, 2011, http://www.medscape.com/viewarticle/474429;
- M. D. Stegall, W. D. Park, T. S. Larson, J. M. Gloor, L. D. Cornell, F.G. Cosio, et al., 'The Histology of Solitary Renal Allografts at 1 and 5 Years after Transplantation', American Journal of Transplantation 11 (2011): 698-707.
- Two stories by transplant recipients that end not long after transplant: Steven Cojocaru, Glamour, Interrupted: How I Became the Best-Dressed Patient in Hollywood (New York, NY: Collins, 2007);
- Janet Hermans, Perfect Match: A Kidney Transplant Reveals the Ultimate Second Chance (Longwood, Florida: Xulon Press, 2006).
- Reimer, 'The Power of the Individual's Story', 40-47.
- Mary Louise Pratt. 'Modernity and Periphery: Toward a Global and Relational Analysis', in Beyond Dichotomies: Histories, Identities, Cultures and the Challenge of Globalization, ed. Elisabeth Mudimbe-Boyi (Albany, NY: State University of New York Press, 2002), 21-47.
- Richard A. Carson, 'The Hyphenated Space: Liminality in the Doctor-Patient Relationship', in Stories Matter: The Role of Narrative in Medical Ethics, eds. Rita Charon and Martha Montello (New York, NY: Routledge, 2002), 180. 15 Even if one positions oneself as an outsider to challenge dominant ideologies as Pratt and Reed-Danahay suggest, one can overlook one's own ideologies and might inadvertently set up a new binary such as 'non-medical is good, while medical is bad'. Pratt, 'Modernity and Periphery', 21-47; Deborah E. Reed-Danahay, 'Introduction', in Auto/Ethnography: Rewriting the Self and the Social, ed. Deborah E. Reed-Danahay (Oxford: Berg, 1997), 1-17.
- Both Mudimbe-Boyi and Pratt allude to this space. Pratt, 'Modernity and Periphery', 32, uses Santiago's expression 'space between' for it. This in-between space can have its own identity under certain circumstances as Glissant, and Lionnet, describe, using ideas such as 'métissage' and 'braiding genres'. Françoise Lionnet, Autobiographical Voices: Race, Gender, Self-Portraiture (Ithaca, NY: Cornell University Press, 1989);
- Edouard Glissant, 'Conclusion: The Unforeseeable Diversity of the World', in Beyond Dichotomies: Histories, Identities, Cultures and the Challenge of Globalization, ed. Elisabeth Mudimbe- Boyi (Albany, NY: State University of New York Press, 2002), 287-296.
- Lionnet, Autobiographical Voices, 99.
- Richards, 'Writing the Othered Self'.
- Reed-Danahay, Auto/Ethnography.
- Lionnet, Autobiographical Voices; Mary Louise Pratt, Under Imperial Eyes: Travel Writing and Transculturation (New York, NY: Routledge, 1992).
- Siyabulela K and Madeleine Duncan, 'Psychiatric Disability and Social Change: An Insider Perspective', in Disability and Social Change: A South African Agenda, eds. Brian Watermeyer, Leslie Swartz, Theresa Lorenzo, Marguerite Schneider and Mark Priestly (Cape Town, South Africa: HSRC Press, 2006), 291-310.
- Richards, 'You Look Very Well for a Transplant'.
- Pratt, Under Imperial Eyes. The way my dissertation was written became its epistemology (See also Ellis and Bochner, Goodall, Hollway and Jefferson, Poulos, Richardson and St Pierre), instead of a means of collecting data.
- Richards, 'You Look Very Well for a Transplant', 18.
- Pratt, Under Imperial Eyes.
- Jacques Derrida, Writing and Difference, trans. Alan Bass (London: Routledge and Paul, 1978).
- For instance my literature review and methodology chapters could have been a conventional academic chapter with no references to myself or my story, but I constructed them so that they contained not only my often personal response to the literature and theory, but also the development of my own ideas in this regard. 28 This is a concept borrowed from Turner and Van Gennep's studies of ritual in anthropology about how people make the transition from one social role to another. Victor Turner, The Ritual Process: Structure and Anti-Structure (London: Routledge and Kegan Paul, 1969);
- Arnold van Gennep, The Rites of Passage, trans.
- M. B. Visedom and G. L. Caffee (London: Routledge and Paul, 1960).
- Talcott Parsons, The Social System (London: Routledge and Kegan Paul, 1951);
- Talcott Parsons and Renée C Fox, 'Illness, Therapy and the Modern Urban Family', Journal of Social Issues 8 (1952): 31-44.
- Arthur W. Frank, The Wounded Storyteller: Body, Illness and Ethics (London: University of Chicago Press, 1995), 8.
- Miles Little, Christopher F. C. Jordens, Kim Paul, Kathleen Montgomery and Bertil Philipson, 'Liminality: A Major Category of the Experience of Cancer Illness', Social Science and Medicine 47 (1998): 1485-1494.
- Megan Crowley-Matoka, 'Desperately Seeking Normal: The Promise and Perils of Living with Kidney Transplantation', Social Science and Medicine 61 (2005): 821-831.
- Ibid., 7.
- Carson, 'The Hyphenated Space'; Arthur Kleinman, The Illness Narratives: Suffering, Healing and the Human Condition (New York, NY: Basic Books, 1988).
- Stuart Murray, 'Autism and the Contemporary Sentimental: Fiction and the Narrative Fascination of the Present', Literature and Medicine 25 (2006): 24-45.
- Richards, 'You Look Very Well for a Transplant', 10: 'My state of liminality on dialysis can only be read through my state of liminality in end-stage renal disease or even post-transplant. My state of liminality post-transplant can only be understood in the light of the others. I am well and ill simultaneously and in different ways.' Sometimes the different narratives of health/illness obscure each other.
- I experience(d) these as events that made me feel other: several doctors' visits a year to a specialist, daily medication, damaged immune system, failing to get the scholarship, failing to get certain types of insurance, etc.
- Shildrick, Embodying the Monster, 17.
- Marjorie Garber, Vested Interests: Cross-Dressing and Cultural Anxiety (London: Routledge, 1997).
- Richards, 'You Look Very Well for a Transplant', 25.
- Kristi Kirschner, 'Liminal States: The Challenge of New-Onset Disability', Atrium: The Report of the Northwestern Medical Humanities and Bioethics Program 2 (2006): 1-3.
- Reed-Danahay, Auto/Ethnography. Bibliography
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- American Psychiatrist Association, Diagnostic and Statistic Manual of Mental Disorders (Washington, DC: American Psychiatric Association, 1994), 458. 5 Ibid.
- Mark D. Sullivan, 'DSM-IV Pain Disorder: A Case against the Diagnosis', International Review of Psychiatry 12 (2000): 91.
- DSM-III category for 'psychogenic pain' was Persistent Somatoform Disorder.
- Steven A. King and James A. Strain, 'Somatoform Pain Disorder', in DSM-IV Sourcebook, Volume 2, eds. Thomas Widiger and American Psychiatric Association (Washington DC: American Psychiatric Association, 1996), 922.
- 9 King and Strain, 'Somatoform Pain Disorder', 923.
- Martin Aigner and Michael Bach, 'Clinical Utility of DSM-IV Pain Disorder', Comprehensive Psychiatry 40 (1999): 355.
- Sullivan, 'DSM-IV Pain Disorder: A Case against the Diagnosis', 91.
- Robert J. Boland, 'How Could the Validity of DSM-IV be Improved in Reference to the Concept That It is Supposed to Identify?', Current Pain and Headache Report 6 (2002): 25.
- John D. Loeser is the editor of the 3 rd edition of Bonica's manual. 14 Loeser refers here to the first edition of Bonica's manual (John J. Bonica, 1953)
- Loeser, 'Chronic Pain as a Disease', in Chronic Pain Centers at a Crossroads: A Practical and Conceptual Reappraisal (Seattle: IASP Press, 1996), 101. 16 Ibid.
- Ibid., 101.
- Isabelle Baszanger, Inventing Pain Medicine: From the Laboratory to the Clinic (New Brunswick, NJ: Rutgers, 1998), 89.
- Ann Gamsa, 'The Role of Psychological Factors in Chronic Pain. II. A Critical Appraisal', Pain 57 (1994): 57. 20 Ibid., 23.
- Laurence Kirmayer, 'Mind and Body as Metaphors: Hidden Value in Biomedicine', in Biomedicine Examined, ed. M. Lock, D. Gordon (Dordrecht: Kluwer Academic Publishers, 1988), 57-93.
- In the Introduction of the DSM-IV, the authors claim to be not satisfied with the notion of 'mental disorder;' this concept entails indeed a distinction between mental and physical conditions that is a reductionist anachronism of mind/body dualism. Nevertheless, the authors claim that they could not do otherwise because an appropriate substitute has not been found.
- In pain medicine's debates this allegation is quite common. See Jean Jackson, 'Stigma, Liminality and Chronic Pain', American Ethnologist 32 (2005): 332-353. 25 Kirmayer already remarked it in 1988 by recalling biological explanations of mindful action as 'an emergent property of the hierarchical organization of the nervous system'.
- In a 2000 paper, Duncan argues that the allegation to Descartes, that of having postulated the separation between psyche and soma is false. In Duncan's view, Descartes mental philosophy, in particular his analyses of pain, was meant instead to support the unity of psyche and soma.
- Mark D. Sullivan, 'In What Sense is Contemporary Medicine Dualistic?', Culture, Medicine and Psychiatry 10 (1986): 10.
- Kirmayer, 'Mind and Body as Metaphors: Hidden Value in Biomedicine', 57. 29 Ibid.
- Ibid., 83.
- Here Jackson employs the concept of 'liminality' both in the sense of 'betwixt and between' (Turner, 1969) and in the sense of 'matter out of place' (Douglas, 1966).
- Jean Jackson, 'Stigma, Liminality and Chronic Pain', American Ethnologist 32 (2005): 333.
- Ibid. Bibliography
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- Michel Foucault, The Birth of the Clinic; An Archeology of Medical Perception (New York: Pantheon Books, 1973), xv.
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- Samuel Hahnemann, The Extended Organon of the Remedial Art, 6 th Edition (Heilkunst Publishing, 2004), Adobe Digital edition, 1.
- Ibid.
- Ibid.
- Ibid., 7.
- Ibid.
- Sullivan, 'In What Sense is Contemporary Medicine Dualistic?', 334. 10 Ibid.
- Hahnemann, The Extended Organon, 2. 12 Ibid., 5. 13 Ibid., 23. 14 Ibid.
- Sullivan, 'In What Sense is Contemporary Medicine Dualistic?', 339. 16 Ibid.
- Ibid.
- Ibid., 340.
- Ibid., 346.
- Samuel Hahnemann, The Lesser Writings, trans. R. E. Drudgeon (New Delhi: Jain Publishers, 1990), 266. 21 Ibid., 262.
- Ibid., 265.
- Ibid., 263.
- Hahnemann, The Extended Organon, 118. 25 Ibid., 44.
- Sullivan, 'In What Sense is Contemporary Medicine Dualistic?', 335. 27 Ibid., 336. 28 Ibid.
- Ibid.
- Hahnemann, The Extended Organon, 20. 31 Ibid.
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- Carol-Ann Galego is an Interdisciplinary PhD Student at Memorial University in St. John's, Newfoundland. She is in her final year of study at the Hahnemann College of Heilkunst and Homeopathy towards earning her designation as a Doctor of Medical Heilkunst.
- Jake Rance and Suzanne Fraser, 'Accidental Intimacy: Transformative Emotion and the Sydney Medically Supervised Injecting Centre', Contemporary Drug Problems 38 (2011): 121-145.
- Ibid.
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- Norbert Loimer, Peter Hofmann and Haroon Chaudry, 'Nasal Administration of Naloxone is as Effective as the Intravenous Route in Opioid Addicts', International Journal of Addictions 29, No. 6 (1994): 819-827; Debra Kerr, Paul Dietze and Ann-Maree Kelly, 'Intranasal Naloxone for the Treatment of Suspected Heroin Overdose. Review Article', Addiction 103, No. 3 (2008): 379-386.
- Henry R. Costantino, et al., 'Intranasal Delivery: Physicochemical and Therapeutic Aspects', International Journal of Pharmacy 337, Nos. 1-2 (2007): 1- 24;
- Loimer, Hofmann, and Chaudhry, 'Nasal Administration of Naloxone for Detection of Opiate Dependence', Journal of Psychiatric Research 26, No. 1 (1992): 39-43;
- Eric D Barton, et al., 'Efficacy of Intranasal Naloxone as a Needleless Alternative for Treatment of Opioid Overdose in the Prehospital Setting', Journal of Emergency Medine 29, No. 3 (2005): 265-271; Eric D. Barton, et al., 'Intranasal Administration of Naloxone by Paramedics', Prehospital Emergency Care 6, No. 1 (2002): 54-58; Ann-Maree Kelly and Zeff Koutsogiannis, 'Intranasal Naloxone for Life Threatening Opioid Toxicity', Emergency Medicine Journal 19, No. 4 (2002): 375;
- Tania Robertson, et al., 'Prehospital Intranasal Versus Intravenous Administration of Naloxone for Narcotic Overdose', Society for Academic Emergency Medicine (2005): 166-167;
- Ann-Maree Kelly, et al., 'Randomised Trial of Intranasal Versus Intramuscular Naloxone in Prehospital Treatment for Suspected Opioid Overdose', Medical Journal of Australia 182 (2005): 24-27;
- Debra Kerr, et al., 'Randomized Controlled Trial Comparing the Effectiveness and Safety of Intranasal and Intramuscular Naloxone for the Treatment of Suspected Heroin Overdose', Addiction 104 (2009): 2067-2074.
- Kelly, et al., 'Randomised Trial of Intranasal Versus Intramuscular Naloxone', 24-27;
- Kerr, et al., 'Randomized Controlled Trial Comparing the Effectiveness and Safety of Intranasal and Intramuscular Naloxone', 2067-2074.
- Ibid.
- Kelly, et al., 'Randomised Trial of Intranasal Versus Intramuscular Naloxone', 24-27.
- Kerr, et al., 'Randomized Controlled Trial Comparing the Effectiveness and Safety of Intranasal and Intramuscular Naloxone', 2067-2074.
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- Rance and Fraser, 'Accidental Intimacy', 130.
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- Rance and Fraser, 'Accidental Intimacy'.
- Ibid., 131.
- Names have been changed to protect the participants' confidentiality. While Jonathon and Carly are two individuals who participated in the clinical trial, some of their biographical details may represent an amalgam of life-experiences commonly reported by many of the clients of Sydney MSIC.
- As the trial is double-blinded, the researchers are unaware if the intranasal preparation was naloxone or placebo. Jonathon's observation was that the intranasal preparation was naloxone.
- Rance and Fraser, 'Accidental Intimacy'.
- Ibid.
- Sara Ahmed, 'Collective Feelings, or the Impressions Left by Others', Theory, Culture and Society 21, No. 2 (2002): 25-42.
- Ibid.
- Rance and Fraser, 'Accidental Intimacy', 132.
- Ahmed, 'Collective Feelings'.
- Rance and Fraser, 'Accidental Intimacy', 133.
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- Ian Flaherty is the Research Co-ordinator at the Sydney Medically Supervised Injecting Centre. His special interest is in the sociology of intimacy, love and friendship, and the impact drug use may bring to the fulfilment of personal and civic lives. Contact: iflaherty@sydneymsic.com.
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