Psychosocial aspects of the lived experience of multiple sclerosis: personal perspectives

References

• Bates D. Long-term outcomes in patients with multiple sclerosis. Introduction. Neurology. 2011;76:S1–S2.
   PubMed Web of Science ®Google Scholar
• Friese MA, Schattling B, Fugger L. Mechanisms of neurodegeneration and axonal dysfunction in multiple sclerosis. Nat Rev Neurol. 2014;10:225–238.
   PubMed Web of Science ®Google Scholar
• Compston A, Coles A. Multiple sclerosis. Lancet. 2008;372:1502–1517.
   PubMed Web of Science ®Google Scholar
• Beer S, Khan F, Kesselring J. Rehabilitation interventions in multiple sclerosis: an overview. J Neurol. 2012;259:1994–2008.
   PubMed Web of Science ®Google Scholar
• MS Australia. MS: the mystery disease. 7th ed. Sydney, Australia: MS Australia; 2005.
   Google Scholar
• Schapiro R. The symptomatic management of multiple sclerosis. Ann Indian Acad Neurol. 2009;12:291–295.
   PubMed Web of Science ®Google Scholar
• Bishop MR, Timblin R, Rumrill PD. Medical, psychological, and vocational aspects of multiple sclerosis: implications for rehabilitation professionals. J Rehabil. 2016;82:6–13.
   Web of Science ®Google Scholar
• Forbes A, While A, Taylor M. What people with multiple sclerosis perceive to be important to meeting their needs. J Adv Nurs. 2007;58:11–22.
   PubMed Web of Science ®Google Scholar
• D’Amico E, Leone C, Hayrettin T, et al. Can we define a rehabilitation strategy for cognitive impairment in progressive multiple sclerosis? A critical appraisal. Multiple Sclerosis J. 2016;22:581–589.
   PubMedGoogle Scholar
• MS Australia. Understanding MS: an introduction for people living with MS. Sydney, Australia: MS Australia; 2012.
   Google Scholar
• Malcomson KS, Lowe-Strong AS, Dunwoody L. What can we learn from the personal insights of individuals living and coping with multiple sclerosis? Disabil Rehabil. 2008;30:662–674.
   PubMed Web of Science ®Google Scholar
• Dennison L, Yardley L, Devereux A, et al. Experiences of adjusting to early stage multiple sclerosis. J Health Psychol. 2011;16:478–488.
   PubMed Web of Science ®Google Scholar
• Tabuteau-Harrison SL, Haslam C, Mewse AJ. Adjusting to living with multiple sclerosis: the role of social groups. Neuropsychol Rehabil. 2016;26:36–59.
   PubMed Web of Science ®Google Scholar
• Roessler RT, Fitzgerald SM, Rumrill PD, et al. Determinants of employment status among people with multiple sclerosis. Rehabil Counsel Bull. 2001;45:31–39.
   Web of Science ®Google Scholar
• Roessler RT, Rumrill PD, Fitzgerald SM. Predictors of employment status for people with multiple sclerosis. Rehabil Counsel Bull. 2004;47:96.
   Web of Science ®Google Scholar
• Tribe KL, Longley WA, Fulcher G, et al. Living with multiple sclerosis in New South Wales, Australia, at the beginning of the 21st century: impact of mobility disability. Int J MS Care. 2006;8:19–30.
   Google Scholar
• Smith MM, Arnett PA. Factors related to employment status changes in individuals with multiple sclerosis. Mult Scler. 2005;11:602.
   PubMed Web of Science ®Google Scholar
• Simmons RD, Tribe K, McDonald E. Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management. J Neurol. 2010;257:926–936.
   PubMed Web of Science ®Google Scholar
• De Judicibus MA, McCabe MP. The impact of the financial costs of multiple sclerosis on quality of life. Int J Behav Med. 2007;14:3–11.
   PubMed Web of Science ®Google Scholar
• Sweetland J, Howse E, Playford ED. A systematic review of research undertaken in vocational rehabilitation for people with multiple sclerosis. Disabil Rehabil. 2012;34:2031–2038.
   PubMed Web of Science ®Google Scholar
• Ohman A. Qualitative methodology for rehabilitation research. J Rehabil Med. 2005;37:273–280.
   PubMed Web of Science ®Google Scholar
• Liamputtong P. Qualitative research methods. 4th ed. South Melbourne: Oxford University Press; 2013.
   Google Scholar
• Green J, Thorogood N. Qualitative methods for health research. Thousand Oaks (CA): SAGE; 2009.
   Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77–101.
   Google Scholar
• Liamputtong P, Ezzy D. Qualitative research methods. 2nd ed. South Melbourne: Oxford University Press; 2005.
   Google Scholar
• Liamputtong P, Ezzy D. Qualitative research methods: a health focus. Melbourne: Oxford University Press; 1999. ix, 295 p.
   Google Scholar
• Minichiello V, Aroni R, Timewell E, et al. In-depth Interviewing: researching people. South Melbourne: Longman Cheshire; 1991.
   Google Scholar
• Polgar S, Thomas SA. Introduction to research in the health sciences. 5th ed. New York: Elsevier; 2008.
   Google Scholar
• Minichiello V, Aroni RA, Hays TN. In-depth interviewing: principles, techniques, analysis. 3rd ed. Sydney: Pearson Education Australia; 2008.
   Google Scholar
• Carpenter C. Phenomenology and rehabilitation research. In: Liamputtong P, editor. Research methods in health: foundations for evidence-based practice. South Melbourne, Vic.: Oxford University Press; 2013. p. 115–131.
   Google Scholar
• Creswell JW. Qualitative research design: choosing among five approaches. 3rd ed. Thousand Oaks: SAGE; 2013.
   Google Scholar
• Smith JA, Osborn M. Interpretative phenomenological analysis. In: Smith JA, editor. Qualitative psychology: a practical guide to research methods. London: Sage Publications; 2008.
   Google Scholar
• Rohani M, Ghourchian S. Fulminant multiple sclerosis (MS). Neurol Sci. 2011;32:953–957.
   PubMed Web of Science ®Google Scholar
• Corbin JM, Strauss AL. Basics of qualitative research: techniques and procedures for developing grounded theory. 3rd ed. Thousand Oaks, CA: Sage Publications, Inc.; 2008.
   Google Scholar
• Bryman A. Social research methods. 4th ed. Oxford: Oxford University Press; 2012.
   Google Scholar
• Kidd D, Howard RS, Losseff NA, et al. The benefit of inpatient neurorehabilitation in multiple sclerosis. Clin Rehabil. 1995;9:198–203.
   Google Scholar
• Vikman T, Fielding P, Lindmark B, et al. Effects of inpatient rehabilitation in multiple sclerosis patients with moderate disability. Adv Physiother. 2008;10:58–65.
   Google Scholar
• Mills R. Defining and identifying fatigue in MS. In: MS in focus. Cambridge (UK): Multiple Sclerosis International Federation; 2011.
   Google Scholar
• Bakshi R. Fatigue associated with multiple sclerosis: diagnosis, impact and management. Mult Scler. 2003;9:219–227.
   PubMed Web of Science ®Google Scholar
• Penner IK, Calabrese P. Managing fatigue: clinical correlates, assessment procedures and therapeutic strategies. Int MS J. 2010;17:28–34.
   PubMedGoogle Scholar
• Schwid SR, Murray TJ. Treating fatigue in patients with MS: one step forward, one step back. Neurology. 2005;64:1111–1112.
   PubMed Web of Science ®Google Scholar
• Hadjimichael O, Vollmer T, Oleen-Burkey M. Fatigue characteristics in multiple sclerosis: the North American Research Committee on Multiple Sclerosis (NARCOMS) Survey. Health Qual Life Outcomes. 2008;6:100.
   PubMed Web of Science ®Google Scholar
• Hemmett L, Holmes J, Barnes M, et al. What drives quality of life in multiple sclerosis? QJM. 2004;97:671–676.
   PubMed Web of Science ®Google Scholar
• Krupp LB, Alvarez LA, LaRocca NG, et al. Fatigue in multiple sclerosis. Arch Neurol. 1988;45:435–437.
   PubMed Web of Science ®Google Scholar
• Khan F, McPhail T, Brand C, et al. Multiple sclerosis: disability profile and quality of life in an Australian community cohort. Int J Rehabil Res. 2006;29:87–96.
   PubMed Web of Science ®Google Scholar
• Cutrona CE, Russell DW. Type of social support and specific stress: toward a theory of optimal matching. In: Sarason BR, Sarason IG, Pierce GR, editors. Social support: an interactional view. New York: John Wiley & Sons; 1990. p. 319–366.
   Google Scholar
• Dilorenzo TA, Becker-Feigeles J, Halper J, et al. A qualitative investigation of adaptation in older individuals with multiple sclerosis. Disabil Rehabil. 2008;30:1088–1097.
   PubMed Web of Science ®Google Scholar
• Kirkpatrick Pinson DM, Ottens AJ, Fisher TA. Women coping successfully with multiple sclerosis and the precursors of change. Qual Health Res. 2009;19:181–193.
   PubMed Web of Science ®Google Scholar
• Bishop M. Quality of life and psychosocial adaptation to chronic illness and acquired disability: a conceptual and theoretical synthesis. J Rehabil. 2005;71:5–13.
   Web of Science ®Google Scholar
• Van der Hiele K, Middelkoop HAM, Ruimschotel R, et al. A pilot study on factors involved with work participation in the early stages of multiple sclerosis. PLoS One. 2014;9:e105673.
   PubMed Web of Science ®Google Scholar
• Bishop M, Frain MP, Rumrill PD, et al. The relationship of self-management and disease modifying therapy use to employment status among adults with multiple sclerosis. J Vocation Rehabil. 2009;31:119–127.
   Google Scholar
• Chandraratna D. MSIF survey on employment and MS. London (UK): MSIF; 2010.
   Google Scholar
• Larocca N, Kalb R, Scheinberg L, et al. Factors associated with unemployment of patients with multiple sclerosis. J Chron Dis. 1985;38:203–210.
   PubMedGoogle Scholar
• Hakim EA, Bakheit AM, Bryant TN, et al. The social impact of multiple sclerosis-a study of 305 patients and their relatives. Disabil Rehabil. 2000;22:288–293.
   PubMed Web of Science ®Google Scholar
• Green G, Todd J. Restricting choices and limiting independence: social and economic impact of multiple sclerosis upon households by level of disability. Chronic Illn. 2008;4:160–172.
   PubMedGoogle Scholar
• Irvine H, Davidson C, Hoy K, et al. Psychosocial adjustment to multiple sclerosis: exploration of identity redefinition. Disabil Rehabil. 2009;31:599–606.
   PubMed Web of Science ®Google Scholar
• Gedik Z, Sorias O, Idiman E. Do coping styles mediate the relationship between disability status and psychosocial loss in people with relapsing remitting multiple sclerosis? J Health Psychol. 2017;22:707–721.
   PubMed Web of Science ®Google Scholar