MS and me: exploring the impact of multiple sclerosis on perceptions of self

References

• Charmaz K. Loss of self: A fundamental form of suffering in the chronically ill. Sociol Health Illn 1983;5:168–195.
   PubMedGoogle Scholar
• Kelly MP, Field D. Medical sociology: Chronic illness and the body. Sociol Health Illn 1996;18:241–257.
   Web of Science ®Google Scholar
• Toombs SK. Disability and the self. In: Brinthapt T, Lupka R, editors. Changing the self: philosophies, techniques and experiences. Albony: State University of New York; 1994. pp 337–357.
   Google Scholar
• Goffman E. Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice-Hall; 1963.
   Google Scholar
• Charmaz K. The body, identity, and self: Adapting to impairment. Sociol Quart 1995;36:657–680.
   Web of Science ®Google Scholar
• Bury M. Chronic illness as biographical disruption. Sociol Health Illn 1982;4:167–182.
   PubMedGoogle Scholar
• Neumann H. Molecular mechanisms of axonal damage in inflammatory central nervous system diseases. Curr Opin Neurol 2003;16:267–273.
   PubMed Web of Science ®Google Scholar
• Lublin FD, Reingold SC. Defining the clinical course of multiple sclerosis: Results of an international survey. National Multiple Sclerosis Society (USA) Advisory Committee on Clinical Trials of New Agents in Multiple Sclerosis. Neurology 1996;46:907–911.
   PubMed Web of Science ®Google Scholar
• Dupont S. Multiple sclerosis. In: Baum B, Newman S, Weinmen J, West R, McMamus C, editors. Cambridge handbook of psychology, health and medicine. Cambridge: Cambridge University press; 1997. pp 538–542.
   Google Scholar
• Jones C. Multiple sclerosis update. Prim Health Care 2004;14:26–32.
   Google Scholar
• Pugliatti M, Sotgiu S, Rosati G. The worldwide prevalence of multiple sclerosis. Clin Neurol Neurosurg 2002;104:182–191.
   PubMed Web of Science ®Google Scholar
• McCabe MP, McKern S. Quality of life and multiple sclerosis: Comparison between people with multiple sclerosis and people from the general population. J Clin Psychol Med Set 2002;9:287–295.
   Web of Science ®Google Scholar
• Hermann BP, Vickrey B, Hays RD, Cramer J, Devinsky O, Meador K, Perrine K, et al. A comparison of health-related quality of life in patients with epilepsy, diabetes and multiple sclerosis. Epilepsy Res 1996;25:113–118.
   PubMed Web of Science ®Google Scholar
• Murray TJ. The psychosocial aspects of multiple sclerosis. Neurol Clin 1995;13:197–223.
   PubMed Web of Science ®Google Scholar
• Mohr DC, Dick LP, Russo D, Pinn J, Boudewyn AC, Likosky W, Goodkin DE. The psychosocial impact of multiple sclerosis: Exploring the patient’s perspective. Health Psychol 1999;18:376–382.
   PubMed Web of Science ®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. Qual Health Res 2003;13:1225–1251.
   PubMed Web of Science ®Google Scholar
• Pakenham KI. The nature of benefit finding in multiple sclerosis (MS). Psychol Health Med 2007;12:190–196.
   PubMedGoogle Scholar
• Ritvo PG, Fisk JD, Archibald CJ, Murray TJ, Field C. Psychosocial and neurological predictors of mental health in multiple sclerosis patients. J Clin Epidemiol 1996;49:467–472.
   PubMed Web of Science ®Google Scholar
• McCabe MP. Mood and self-esteem of persons with multiple sclerosis following an exacerbation. J Psychosom Res 2005;59:161–166.
   PubMed Web of Science ®Google Scholar
• Minden SL, Schiffer RB. Affective disorders in multiple sclerosis. Review and recommendations for clinical research. Arch Neurol 1990;47:98–104.
   PubMed Web of Science ®Google Scholar
• Dennison L, Moss-Morris R, Chalder T. A review of psychological correlates of adjustment in patients with multiple sclerosis. Clin Psychol Rev 2009;29:141–153.
   PubMed Web of Science ®Google Scholar
• Driedger SM, Crooks V, Bennett D. Engaging in the disablement process over space and time: Narratives of persons with multiple sclerosis in Ottawa, Canada. The Canadian Geographer 2004;48:119–136.
   Google Scholar
• Bandura A. Self-efficacy: The exercise of control. New York: Times Books; 1997.
   Google Scholar
• Halberstadt J, Niedenthal P, Setterlund M. Cognitive organisation of different tenses of the self mediates affect and decision making. In: Leonard M, editor. Striving and feeling: Interactions among goals, affect and self regulation. Hillsdale, England: Lawrence Erlbaum Associates; 1996. pp 123–150.
   Google Scholar
• Markus H, Wurf E. The dynamic self-concept: A social psychological perspective. Annu Rev Psychol 1987;38:299–337.
   Web of Science ®Google Scholar
• Block J. Some enduring and consequential structures of personality. In: Rubin A, Aronoff J, Barclay A, Zucker, R, editors. Further explorations in personality. New York: Wiley; 1981. pp 27–43.
   Google Scholar
• Swann W. Self-verification: Bringing social reality into harmony with the self. In: Suls J, Greenwald A, editors. Psychological perspectives on the self, volume 2. Hillsdale NJ: Erlbaum; 1983. pp 33–66.
   Google Scholar
• Brooks NA, Matson RR. Social-psychological adjustment to multiple sclerosis. A longitudinal study. Soc Sci Med 1982;16:2129–2135.
   PubMed Web of Science ®Google Scholar
• Dyck I. Hidden geographies: The changing lifeworlds of women with multiple sclerosis. Soc Sci Med 1995;40:307–320.
   PubMed Web of Science ®Google Scholar
• Erikson EH. Identity: Youth and crisis. New York: Norton; 1968.
   Google Scholar
• Fong T, Finlayson M, Peacock N. The social experience of aging with a chronic illness: Perspectives of older adults with multiple sclerosis. Disabil Rehabil 2006;28:695–705.
   PubMed Web of Science ®Google Scholar
• Fife BL. The conceptualization of meaning in illness. Soc Sci Med 1994;38:309–316.
   PubMed Web of Science ®Google Scholar
• Garro LC. Narrative representations of chronic illness experience: Cultural models of illness, mind, and body in stories concerning the temporomandibular joint (TMJ). Soc Sci Med 1994;38:775–788.
   PubMed Web of Science ®Google Scholar
• Mohr D, Hart S, Vella L. Reduction in disability in a randomised controlled trial of telephone administered cognitive behavioural therapy. America Psychological Association 2007;26:554–563.
   Google Scholar
• Rigby SA, Thornton EW, Young CA. A randomized group intervention trial to enhance mood and self-efficacy in people with multiple sclerosis. Br J Health Psychol 2008;13:619–631.
   PubMed Web of Science ®Google Scholar
• Benedict RH, Hussein S, Englert J, Dwyer MG, Abdelrahman N, Cox JL, Munschauer FE, et al. Cortical atrophy and personality in multiple sclerosis. Neuropsychology 2008;22:432–441.
   PubMed Web of Science ®Google Scholar
• Abma TA, Oeseburg B, Widdershoven GA, Goldsteen M, Verkerk MA. Two women with multiple sclerosis and their caregivers: Conflicting normative expectations. Nurs Ethics 2005;12:479–492.
   PubMed Web of Science ®Google Scholar
• Kralik D, Koch T, Eastwood S. The salience of the body: Transition in sexual self-identity for women living with multiple sclerosis. J Adv Nurs 2003;42:11–20.
   PubMed Web of Science ®Google Scholar
• Reissman CK. Performing identities in illness narrative: Masculinity and multiple sclerosis. Qual Res 2003;3:5–33, 40.
   Google Scholar
• Irvine H, Davidson C, Hoy K, Lowe-Strong A. Psychosocial adjustment to multiple sclerosis: Exploration of identity redefinition. Disabil Rehabil 2009;31:599–606.
   PubMed Web of Science ®Google Scholar
• Smith JA. Evolving issues in qualitative psychology. In: Richardson J, editor. Handbook of qualitative research methods for psychology and the social sciences. Leicester: British Psychological Society; 1996. pp 189–202.
   Google Scholar
• Smith JA, Osborn M. Interpretative phenomenological analysis. In: Smith JA, editor. Qualitative Psychology: A practical guide to research methods. London: Sage; 2003.
   Google Scholar
• Brocki J, Wearden A. A critical evaluation of the use of interpretative phenomenological analysis in (IPA) in health psychology. Psychol Health 2006;21:87–108.
   Web of Science ®Google Scholar
• Smith JA, Jarman M, Osborn M. Doing interpretative phenomenological analysis. In: Murray M, Chamberlain, K, editors. Qualitative health psychology: Theories and methods. London: Sage Publications; 1999. pp 53–80.
   Google Scholar
• Smith J, Eatough V. Interpretative phenomenological analysis. In: Lyons E, Coyle, A, editors. Analysing qualitative data in psychology. London: Sage Publications; 2007. pp 35–50.
   Google Scholar
• Brown C, Llyod K. Qualitative methods in psychiatric research. Advances in psychiatric treatment 2001;7:350–356.
   Google Scholar
• Banister P, Burman E, Parker I, Taylor M, Tindall C. Qualitative methods in psychology. Buckingham: Open University Press; 1994.
   Google Scholar
• Lincoln T, Guba E. Naturalistic enquiry. London: Sage Publications; 1985.
   Google Scholar
• Kelly M. Self, identity and radical surgery. Sociol Health Ill 1992;14: 390–415.
   Web of Science ®Google Scholar
• Grytten N, Måseide P. ‘What is expressed is not always what is felt’: Coping with stigma and the embodiment of perceived illegitimacy of multiple sclerosis. Chronic Illn 2005;1:231–243.
   PubMedGoogle Scholar
• Johnson J. ‘Learning to live again: The process of adjustment following a heart attack’. In: Morse JM, Johnson JL, editors. The illness experience. Newbury Park, CA: Sage Publications; 1991. pp 13–88.
   Google Scholar
• Kotarba JA. Chronic pain: Its social dimension. Beverly Hills, CA: Sage Publications; 1983.
   Google Scholar
• Charmaz K. Experiencing chronic illness. In: Albrecht G, Fitzpatrick R, Scrimshaw, S, ediors. The handbook of social studies in health and medicine. London: Sage Publications; 2000. pp 277–292.
   Google Scholar
• Lombaard A, Mouton J. Chronic fatigue syndrome: A qualitative analysis. South African J Psychol 2005;32:286–307.
   Google Scholar
• Osborn M, Smith JA. Living with a body separate from the self. The experience of the body in chronic benign low back pain: An interpretative phenomenological analysis. Scand J Caring Sci 2006;20:216–222.
   PubMed Web of Science ®Google Scholar
• Kayes NM, McPherson KM, Taylor D, Schlüter PJ, Kolt GS. Facilitators and barriers to engagement in physical activity for people with multiple sclerosis: A qualitative investigation. Disabil Rehabil 2011;33:625–642.
   PubMed Web of Science ®Google Scholar
• Higgins ET, Klein R, Strauman T. Self-concept discrepancy theory: A psychological model for distinguishing among different aspects of depression and anxiety. Social Cognition 1985;3:51–76.
   Web of Science ®Google Scholar
• Kelly GA. The psychology of personal constructs. New York: Norton; 1955.
   Google Scholar
• Mead GH. Mind, self and society. Chicago: University of Chicago Press; 1934.
   Google Scholar
• Westen D. The cognitive and psychoanalytic self: Can we put ourselves together? Psychol Inquiry 1992;3:1–13.
   Google Scholar
• Rosenberg M. Conceiving the self. New York: Basic Books; 1979.
   Google Scholar
• Linville PW. Self-complexity and affective extremity: Don’t put all your eggs in one cognitive basket. Social Cognition 1985;3:94–120.
   Web of Science ®Google Scholar
• Linville PW. Self-complexity as a cognitive buffer against stress-related illness and depression. J Pers Soc Psychol 1987;52:663–676.
   PubMed Web of Science ®Google Scholar
• Shaver WA. Suffering and the role of abandonment of self. J Hospice Palliat Nurs 2002;4:46–53.
   Google Scholar
• Strauss AL. Chronic illness and the quality of life, second edition. St Louise: CV Mosby; 1984.
   Google Scholar
• Williams G. The genesis of chronic illness: Narrative re-construction. Sociol Health Illn 1984;6:175–200.
   PubMed Web of Science ®Google Scholar
• Townsend A, Wyke S, Hunt K. Self-managing and managing self: Practical and moral dilemmas in accounts of living with chronic illness. Chronic Illn 2006;2:185–194.
   PubMedGoogle Scholar
• Paterson BL. The shifting perspectives model of chronic illness. J Nurs Scholarsh 2001;33:21–26.
   PubMed Web of Science ®Google Scholar
• Payne D, McPherson KM. Becoming mothers. Multiple sclerosis and motherhood: A qualitative study. Disabil Rehabil 2010;32:629–638.
   PubMed Web of Science ®Google Scholar
• Meyerowitz B, Chaikens S, Clark L. Sex roles and culture: Social and personal reactions to breast cancer. In: Fine M, Asch A, editors. Women with disabilities: Essays in psychology, culture and politics. Philadelphia, PA, US: Temple University Press; 1988. pp 72–89.
   Google Scholar
• Shakespeare T. Disability rights and wrongs. New York: Routledge; 2006.
   Google Scholar
• Willig C. Introducing qualitative research in psychology: Adventures in theory and method. Buckingham: Open University Press; 2001.
   Google Scholar
• Demo DH. (1992). The self-concept over time: Research issues and directions. Annu Rev Sociol 1992;18:303–26.
   Web of Science ®Google Scholar
• Hammersley M, Treseder P. Identity as an analytic problem: Who’s who in ‘pro-ana’ websites. Qualitative Research 2007;7:283–300.
   Google Scholar
• Niedenthal PM, Beike DR. Interrelated and isolated self-concepts. Pers Soc Psychol Rev 1997;1:106–128.
   PubMedGoogle Scholar
• Hart S, Fonareva I, Merluzzi N, Mohr DC. Treatment for depression and its relationship to improvement in quality of life and psychological well-being in multiple sclerosis patients. Qual Life Res 2005;14:695–703.
   PubMed Web of Science ®Google Scholar
• Mohr DC, Boudewyn AC, Goodkin DE, Bostrom A, Epstein L. Comparative outcomes for individual cognitive-behavior therapy, supportive-expressive group psychotherapy, and sertraline for the treatment of depression in multiple sclerosis. J Consult Clin Psychol 2001;69:942–949.
   PubMed Web of Science ®Google Scholar
• Visschedijk MA, Collette EH, Polman CH, Pfennings LE, van der Ploeg HM. Development of a cognitive behavioral group intervention programme for patients with multiple sclerosis: An exploratory study. Psychol Rep 2004;95:735–746.
   PubMed Web of Science ®Google Scholar
• Gadow S. ‘Body and self: A dialectic’. In: Kestenbaum V, editor. The humanity of the ill: Phenomenological perspectives. Knoxville: University of Tennessee Press; 1982. pp 86–100.
   Google Scholar