Understanding unexpected courses of multiple sclerosis among patients using complementary and alternative medicine: A travel from recipient to explorer

References

• Aikens J. E. Fischer J. S. Namey M. Rudick R. A. A replicated prospective investigation of life stress, coping, and depressive symptoms in multiple sclerosis. Journal of Behavioral Medicine. 1997; 20(5): 433–445.
   PubMed Web of Science ®Google Scholar
• Anaf S. Drummond C. Sheppard L. A. Combining case study research and systems theory as a heuristic model. Qualitative Health Research. 2007; 17(10): 1309–1315.
   PubMed Web of Science ®Google Scholar
• Antonak R. F. Livneh H. Psychosocial adaptation to disability and its investigation among persons with multiple sclerosis. Social Science & Medicine. 1995; 40(8): 1099–1108.
   Web of Science ®Google Scholar
• Antonovsky A. Health, stress, and coping. Jossey-Bass. San Francisco CA, 1979
   Google Scholar
• Antonovsky A. Unraveling the mystery of health: How people manage stress and stay well. Jossey-Bass. San Francisco CA, 1987
   Google Scholar
• Apel A. Greim B. Konig N. Zettl U. K. Frequency of current utilisation of complementary and alternative medicine by patients with multiple sclerosis. Journal of Neurology. 2006; 253(10): 1331–1336.
   PubMed Web of Science ®Google Scholar
• Apel, A., Greim, B. & Zettl, U. K. (2007). Complementary and alternative medicine and coping in neuroimmunological diseases [Erratum appears in J Neurol, 2008; 255(2): 309–10]. Journal of Neurology, 254. (Suppl. 2), II112–II115.
   Google Scholar
• Astin J. A. Why patients use alternative medicine: Results of a national study. JAMA. 1998; 279(19): 1548–1553.
   PubMed Web of Science ®Google Scholar
• Bakal D. A. Minding the body. Clinical use of somatic awareness. Guilford. New York, 2001
   Google Scholar
• Bishop M. Frain M. P. Tschopp M. K. Self-management, perceived control, and subjective quality of life in multiple sclerosis: An exploratory study. Rehabilitation Counseling Bulletin. 2008; 52(1): 45–56.
   Web of Science ®Google Scholar
• Bjelakovic G. Nikolova D. Gluud L. L. Simonetti R. G. Gluud C. Mortality in randomized trials of antioxidant supplements for primary and secondary prevention: Systematic review and meta-analysis. JAMA. 2007; 297(8): 842–857.
   PubMed Web of Science ®Google Scholar
• Blaikie N. Designing social research: The logic of anticipation. Polity Press. Cambridge, 2000
   Google Scholar
• Bodeker G. Kronenberg F. Burford G. Policy and public health perspectives in traditional, complementary and alternative medicine: An overview. Traditional, complementary and alternative medicine. Policy and public health perspectives. Bodeker G. Burford G. Imperial College Press. London, 2007; 9–40.
   Google Scholar
• Bourdieu P. Outline of a theory of practice. Cambridge University Press. Cambridge, 1977
   Google Scholar
• Bourdieu P. The forms of capital. Handbook of theory of research for the sociology of education. Richardson J. E. Greenword Press. New York, 1986; 241–258.
   Google Scholar
• Broom A. ‘I'd forgotten about me in all of this’: Discourses of self-healing, positivity and vulnerability in cancer patients’ experiences of complementary and alternative medicine. Journal of Sociology. 2009; 45(1): 71–87.
   Web of Science ®Google Scholar
• Büschel, G., Kaiser, G., Weigner, M., Weigang, K., Birkmann, J. & Gallmeier, J. (1998). Best-case analyses of 4 current unconventional therapies in oncology. Forschende Komplementärmedizin. 5((Suppl. I)):, 68–71.
   Google Scholar
• Callahan, L. F., Wiley-Exley, E. K., Mielenz, T. J., Brady, T. J., Xiao, C., Currey, S. S, et al.. (2009). Use of complementary and alternative medicine among patients with arthritis. Preventing Chronic Disease. , 6 (2). Retrieved May 18, 2009 from http://www.cdc.gov/pcd/issues/2009/apr/08_0070.htm.
   Google Scholar
• Cartwright T. Torr R. Making sense of illness: The experiences of users of complementary medicine. Journal of Health Psychology. 2005; 10(4): 559–572.
   Web of Science ®Google Scholar
• Clayton D. K. Rogers S. Stuifbergen A. Answers to unasked questions. Writing in the margins. Research in Nursing & Health. 1999; 22(6): 512–522.
   PubMed Web of Science ®Google Scholar
• Cohen R. J. Ek K. Pan C. X. Complementary and alternative medicine (CAM) use by older adults. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences. 2002; 57(4): M223–M227.
   PubMed Web of Science ®Google Scholar
• Davidhizar R. The orthopedic patient's special need for wholistic caring. Journal of Practical Nursing. 2001; 51(3): 18–24.
   Google Scholar
• Denzin N. K. Lincoln Y. S. The Landscape of qualitative research: Theories and issues. Sage. Thousand Oaks CA, 2003
   Google Scholar
• Ellis L. B. Illuminative case study design: A new approach to the evaluation of continuing professional education. Nurse Researcher. 2003; 10(3): 48–59.
   PubMedGoogle Scholar
• Flyvbjerg B. Five misunderstandings about case-study research. Qualitative research practice. Seale C. Gobo G. Gubrium J. Silverman D. Sage. London, 2004; 420–434.
   Google Scholar
• Foote-Ardah C. E. The meaning of complementary and alternative medicine practices among people with HIV in the United States: Strategies for managing everyday life. Sociology of Health & Illness. 2003; 25(5): 481–500.
   PubMed Web of Science ®Google Scholar
• Fox N. Ward K. Health identities: From expert patient to resisting consumer. Health: An Interdisciplinary Journal for the Social Study of Health. Illness & Medicine. 2006; 10(4): 461–479.
   Google Scholar
• Fraser C. Polito S. A Comparative study of self-efficacy in men and women with multiple sclerosis. Journal of Neuroscience Nursing. 2007; 39(2): 102–106.
   Google Scholar
• Freeman J. A. Thompson A. J. Fitzpatrick R. Hutchinson M. Miltenburger C. Beckmann K, et al.. Interferon-{beta}1b in the treatment of secondary progressive MS: Impact on quality of life. Neurology. 2001; 57(10): 1870–1875.
   Web of Science ®Google Scholar
• Fønnebø V. Launsø L. High use of complementary and alternative medicine inside and outside of the government-funded health care system in Norway. The Journal of Alternative and Complementary Medicine. 2009; 15(10): 1061–1066.
   Web of Science ®Google Scholar
• Gobo G. Re-conceptualizing generalization: Old issues in a new frame. The SAGE handbook of social research methods. Alasuutari P. Bickman L. Brannen J. Sage. London, 2004; 193–213.
   Google Scholar
• Gobo G. Doing ethnography. Sage. Los Angeles CA, 2008
   Google Scholar
• Goldstein M. S. Complementary and alternative medicine. Journal of Psychosocial Oncology. 2003; 21(2): 1–21.
   Web of Science ®Google Scholar
• Guba E. Lincoln Y. S. Fourth generation evaluation. Sage. Newbury Park CA, 1989
   Google Scholar
• Hanssen B. Grimsgaard S. Launsø L. Fønnebø V. Falkenberg T. Rasmussen N. K. Use of complementary and alternative medicine in the Scandinavian countries. Scandinavian Journal of Primary Health Care. 2005; 23(1): 57–62.
   PubMed Web of Science ®Google Scholar
• Hughner R. S. Kleine S. S. Variations in lay health theories: Implications for consumer health care decision making. Qualitative Health Research. 2008; 18(12): 1687–1703.
   PubMed Web of Science ®Google Scholar
• Hök J. Use of complementary and alternative medicine in the context of cancer. Perspectives on exceptional experiences. Karolinska Institute. Stockholm, 2009
   Google Scholar
• Jacobson J. S. Grann V. R. Gnatt M. A. Hibshoosh H. Austin J. H. M. Millar W. S, et al.. Cancer outcomes at the Hufeland (Complementary/Alternative Medicine) Klinik: A best-case series review. Integrative Cancer Therapies. 2005; 4(2): 156–167.
   Google Scholar
• Kelly-Powell M. L. Personalizing choices: Patients’ experiences with making treatment decisions. Research in Nursing & Health. 1997; 20(3): 219–227.
   Web of Science ®Google Scholar
• Kessler R. C. Davis R. B. Foster D. F. Van Rompay M. I. Walters E. E. Wilkey S. A, et al.. Long-term trends in the use of complementary and alternative medical therapies in the United States. Annals of Internal Medicine. 2001; 135(4): 262–268.
   PubMed Web of Science ®Google Scholar
• Kirkpatrick Pinson D. M. Ottens A. J. Fisher T. A. Women coping successfully with multiple sclerosis and the precursors of change. Qualitative Health Research. 2009; 19(2): 181–193.
   PubMed Web of Science ®Google Scholar
• Kleinman A. The illness narratives. Suffering, healing, and the human condition. Basic Books. New York, 1988
   Google Scholar
• Kristoffersen A. E. Fønnebø V. Norheim A. J. Use of complementary and alternative medicine among patients: Classification criteria determine level of use. The Journal of Alternative and Complementary Medicine. 2008; 14(8): 911–919.
   Web of Science ®Google Scholar
• Kvale S. Interviews. An introduction to qualitative research interviewing. Sage. Thousand Oaks CA, 1996
   Google Scholar
• Launsø L. The connection between scope of diagnosis and users’ scope of action. Empirical findings and theoretical perspectives. Studies in alternative therapies 4. Lifestyles and paradigms. Olesen S. G. Odense University Press. OdenseDenmark, 1997; 136–149.
   Google Scholar
• Launsø L. Drageset B. J. Fønnebø V. Jacobson J. S. Haahr N. White J. D, et al.. Exceptional disease courses after the use of CAM: Selection, registration, medical assessment, and research. An international perspective. Journal of Alternative & Complementary Medicine. 2006; 12(7): 607–613.
   Web of Science ®Google Scholar
• Launsø L. Rieper O. Qualitative research methods in complementary and alternative treatment. NAFKAM Serial nr. 3. National Research Center in Complementary and Alternative Medicine. TromsøNorway, 2006
   Google Scholar
• Leckridge B. The future of complementary and alternative medicine— models of integration. The Journal of Alternative and Complementary Medicine. 2004; 10(2): 413–416.
   Web of Science ®Google Scholar
• Ledingham J. G. G. Warrell D. A. Concise Oxford textbook of medicine. Oxford University Press. Oxford, 2000
   Google Scholar
• Lee C. O. Translational research in cancer complementary and alternative medicine: The National Cancer Institute's best case series program. Clinical Journal of Oncology Nursing. 2004; 2(8): 212–214.
   Google Scholar
• Li J. Johansen C. Bronnum-Hansen H. Stenager E. Koch-Henriksen N. Olsen J. The risk of multiple sclerosis in bereaved parents: A nationwide cohort study in Denmark. Neurology. 2004; 62(5): 726–729.
   Web of Science ®Google Scholar
• Lode K. Larsen J. P. Bru E. Klevan G. Myhr K. M. Nyland H. Patient information and coping styles in multiple sclerosis. Multiple Sclerosis. 2007; 13(6): 792–799.
   Web of Science ®Google Scholar
• Lublin, F. D., Reingold, S. C., & National Multiple Sclerosis Society Advisory Committee on Clinical Trials of New Agents in Multiple Sclerosis. (1996). Defining the clinical course of multiple sclerosis: Results of an international survey. Neurology. 46(4), 907–911.
   PubMed Web of Science ®Google Scholar
• Malcomson K. S. Lowe-Strong A. S. Dunwoody L. What can we learn from the personal insights of individuals living and coping with Multiple Sclerosis?. Disability & Rehabilitation. 2008; 30(9): 662–674.
   PubMed Web of Science ®Google Scholar
• Malik I. A. Gopalan S. Use of CAM results in delay in seeking medical advice for breast cancer. European Journal of Epidemiology. 2003; 18(8): 817–822.
   Web of Science ®Google Scholar
• Marrie R. A. Hadjimichael O. Vollmer T. Predictors of alternative medicine use by multiple sclerosis patients. Multiple Sclerosis. 2003; 9(5): 461–466.
   Google Scholar
• McCabe M. P. Stokes M. McDonald E. Changes in quality of life and coping among people with multiple sclerosis over a 2 year period. Psychology, Health & Medicine. 2009; 14(1): 86–96.
   PubMed Web of Science ®Google Scholar
• McClean S. Shaw A. From schism to continuum? The problematic relationship between expert and lay knowledge. An exploratory conceptual synthesis of two qualitative studies. Qualitative Health Research. 2005; 15(6): 729–749.
   PubMed Web of Science ®Google Scholar
• McQuaide M. M. The rise of alternative health care: A sociological account. Social Theory & Health. 2005; 3(4): 286–301.
   Google Scholar
• MedicineNet.com. (2010). Medical dictionary of MedicineNet MedicineNet.com. Retrieved April 6, 2010, from http://www.medterms.com/script/main/art.asp?articlekey = 33490.
   Google Scholar
• Miller C. M. The lived experience of relapsing multiple sclerosis: A phenomenological study. The Journal of Neuroscience Nursing. 1997; 29(5): 294–304.
   Google Scholar
• Miller D. Leary S. M. Primary-progressive multiple sclerosis. The Lancet Neurology. 2007; 6(10): 903–912.
   PubMed Web of Science ®Google Scholar
• Minichiello V. Aroni R. Timewell E. Alexander L. In-depth interviewing. Researching people. Longman Cheshire. Melbourne VIC, 1990
   Google Scholar
• Molassiotis A. Fernadez-Ortega P. Pud D. Ozden G. Scott J. A. Panteli V, et al.. Use of complementary and alternative medicine in cancer patients: A European survey. Annals of Oncology. 2005; 16(4): 655–663.
   PubMed Web of Science ®Google Scholar
• Montel S. R. Bungener C. Coping and quality of life in one hundred and thirty five subjects with multiple sclerosis. Multiple Sclerosis. 2007; 13(3): 393–401.
   PubMed Web of Science ®Google Scholar
• Myhr K. M. Epidemiological data on multiple sclerosis. [In Norwegian: Epidemiologiske data om multippel sclerose]. Tidsskrift for den norske legeforening. 2005; 125(4): 125.
   Google Scholar
• Nayak S. Matheis R. J. Schoenberger N. E. Shiflett S. C. Use of unconventional therapies by individuals with multiple sclerosis. Clinical Rehabilitation. 2003; 17(2): 181–191.
   Web of Science ®Google Scholar
• Olsen S. A. A review of complementary and alternative medicine (CAM) by people with multiple sclerosis. Occupational Therapy International. 2009; 16(1): 57–70.
   Web of Science ®Google Scholar
• Patton M. Q. Qualitative research & evaluation methods3rd ed. Sage. Thousand Oaks CA, 2002
   Google Scholar
• Pawlikowski J. The history of thinking about miracles in the West. Southern Medical Journal. 2007; 100(12): 1229–1235.
   Web of Science ®Google Scholar
• Prior L. Using documents in social research. Sage. London, 2003
   Google Scholar
• Prior L. Researching documents: Emergent methods. Handbook of emergent methods. Hesse-Biber S. Leavy P. Guilford Press. New York, 2008; XI, 740 s.
   Google Scholar
• Pucci E. Cartechini E. Taus C. Giuliani G. Why physicians need to look more closely at the use of complementary and alternative medicine by multiple sclerosis patients. European Journal of Neurology. 2004; 11(4): 263–267.
   Web of Science ®Google Scholar
• QSR. (2009). NVivo 8 Retrieved November 11, 2009, from http://www.qsrinternational.com/FileResourceHandler.ashx/RelatedDocuments/DocumentFile/456/NVivo_8_brochure.pdf.
   Google Scholar
• Reynolds F. Prior S. “Sticking jewels in your life”: Exploring women's strategies for negotiating an acceptable quality of life with multiple sclerosis. Qualitative Health Research. 2003; 13(9): 1225–1251.
   PubMed Web of Science ®Google Scholar
• Riesman, D., Glazer, N., & Denney, R. (2001). The lonely crowd: A study of the changing American character (Abridged and rev. ed.). New HavenCT: Yale University Press.
   Google Scholar
• Riessman C. K. Strategic uses of narrative in the presentation of self and illness: A research note. Social Science & Medicine. 1990; 30(11): 1195–1200.
   PubMed Web of Science ®Google Scholar
• Riessman C. K. Performing Identities in illness narrative: Masculinity and multiple sclerosis. Qualitative Research. 2003; 3(1): 5–33.
   Google Scholar
• Riise T. Nortvedt M. W. Ascherio A. Smoking is a risk factor for multiple sclerosis [See comment]. Neurology. 2003; 61(8): 1122–1124.
   Web of Science ®Google Scholar
• Rosenzweig R. Thelen D. The presence of the past. Popular uses of history in American life. Columbia University Press. New York, 1998
   Google Scholar
• Rudick R. A. Miller D. Clough J. D. Gragg L. A. Farmer R. G. Quality of life in multiple sclerosis. Comparison with inflammatory bowel disease and rheumatoid arthritis. Archives of Neurology. 1992; 49(12): 1237–1242.
   PubMedGoogle Scholar
• Schwarz S. Knorr C. Geiger H. Flachenecker P. Complementary and alternative medicine for multiple sclerosis. Multiple Sclerosis. 2008; 14(8): 1113–1119.
   PubMed Web of Science ®Google Scholar
• Seale C. Quality in qualitative research. Qualitative research practice. Seale C. Gobo G. Gubrium J. Silverman D. Sage. London, 2004; 409–419.
   Google Scholar
• Siapush M. Postmodern values, dissatisfaction with conventional medicine and popularity of alternative therapies. Journal of Sociology. 1998; 34: 58–70.
   Web of Science ®Google Scholar
• Siegel B. S. Love, medicine and miracles. HarperCollins. New York, 1988
   Google Scholar
• Sirois F. M. Gick M. L. An investigation of the health beliefs and motivations of complementary medicine clients. Social Science & Medicine. 2002; 55(6): 1025–1037.
   Web of Science ®Google Scholar
• Sollner W. Maislinger S. DeVries A. Steixner E. Rumpold G. Lukas P. Use of complementary and alternative medicine by cancer patients is not associated with perceived distress or poor compliance with standard treatment but with active coping behavior: A survey. Cancer. 2000; 89(4): 873–880.
   Web of Science ®Google Scholar
• Spencer L. Ritchie J. O'Connor W. Analysis: Practices, principles and processes. Qualitative research practice: A guide for social science students and researchers. Ritchie J. Lewis J. Sage. London, 2003; 219–262.
   Google Scholar
• Stake R. E. The art of case study research. Sage. Thousand Oaks CA, 1995
   Google Scholar
• Stake R. E. Case studies. The sage handbook of qualitative research. Denzin N. K. Lincoln Y. S. Sage. Thousand Oaks CA, 2005
   Google Scholar
• Stempsey W. E. Miracles and the limits of medical knowledge. Medicine. Health Care and Philosophy. 2002; 5(1): 1–9.
   Google Scholar
• Sørensen, P. S., Ravnborg, M., & Jønsson, A. (2004). Multiple sclerosis. A book for patients, relatives and practitioners [In Danish: Dissemineret sklerose. En bog for patienter, pårørende og behandlere]. KøbehavnDenmark: Munksgaard.
   Google Scholar
• Thorne S. Con A. McGuinness L. McPherson G. Harris S. R. Health care communication issues in multiple sclerosis: An interpretive description. Qualitative Health Research. 2004; 14(1): 5–22.
   PubMed Web of Science ®Google Scholar
• Thorne S. Paterson B. Russell C. The structure of everyday self-care decision making in chronic illness. Qualitative Health Research. 2003; 13(10): 1337–1352.
   PubMed Web of Science ®Google Scholar
• Thorne S. Paterson B. Russell C. Schultz A. Complementary/alternative medicine in chronic illness as informed self-care decision making. International Journal of Nursing Studies. 2002; 39(7): 671–683.
   PubMed Web of Science ®Google Scholar
• Utian, W. (2005). Psychosocial and socioeconomic burden of vasomotor symptoms in menopause: A comprehensive review. Health and Quality of Life Outcomes. , 3 (1), 47. Retrieved from April 22, 2010 http://www.hqlo.com/content/3/1/47.
   Google Scholar
• Wagner E. H. Austin B. T. Davis C. Hindmarsh M. Schaefer J. Bonomi A. Improving chronic illness care: Translating evidence into action. Health Affairs. 2001; 20(6): 64–78.
   PubMed Web of Science ®Google Scholar
• Weiss R. S. Learning from strangers. The art and method of qualitative interview studies. Free Press. New York, 1994
   Google Scholar
• WHO. (2002). WHO traditional medicine strategy 2002–2005. Geneva: World Health Organization.
   Google Scholar
• WHO. (2009). Norway Law No. 64 of 27 June 2003 on the alternative treatment of diseases, etc. Retrieved May 19, 2009, from http://apps.who.int/idhl-rils/results.cfm?language = english&type = ByTopic&strTopicCode = XVB&strRefCode = Norw.
   Google Scholar
• Williams G. The genesis of chronic illness: Narrative re-construction. Sociology of Health & Illness. 1984; 6(2): 175–200.
   PubMed Web of Science ®Google Scholar
• Yin R. K. Case study research. Design and methods. Sage. Thousand Oaks CA, 2003
   Google Scholar
• Zollman C. Vickers A. ABC of complementary medicine: What is complementary medicine? [Clinical review]. British Medical Journal. 1999; 319: 693–696.
   PubMed Web of Science ®Google Scholar