The experience of transitioning from relapsing remitting to secondary progressive multiple sclerosis: views of patients and health professionals

References

• Coles A. Multiple sclerosis. Prac Neurol. 2009;9:118–126.
   PubMedGoogle Scholar
• Compston A, Coles A. Multiple sclerosis: seminar. Lancet. 2008;372:1502–1517.
   PubMed Web of Science ®Google Scholar
• Burgess M. Shedding greater light on the natural history and prevalence of multiple sclerosis. Br J Neurosci Nurs. 2010;6:7–11.
   Google Scholar
• Confavreux C. Defining the natural history of MS: the need for complete data and rigorous definitions. Multiple Sclerosis. 2008;14:289–291.
   PubMed Web of Science ®Google Scholar
• Lubin 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
• Sand IK, Krieger S, Farrell C, et al. Diagnostic uncertainty during the transition to secondary progressive multiple sclerosis. Multiple Sclerosis J. 2014;20:1654–1657.
   PubMed Web of Science ®Google Scholar
• McNulty KH, Livneth I, Wilson LM. Perceived uncertainty, spiritual wellbeing, and psychosocial adaptation in individuals with multiple sclerosis. Rehabil Psychol. 2004;49:91–99.
   Web of Science ®Google Scholar
• Mohr DC, Dick LP, Russo D, et al. The psychosocial impact of multiple sclerosis: exploring the patient's perspective. Health Psychol. 1999;18:376–382.
   PubMed Web of Science ®Google Scholar
• Koopman W, Schweitzer A. The journey to multiple sclerosis: a qualitative study. J Neurosci Nurs. 1999;31:17–26.
   PubMedGoogle Scholar
• Johnson J. On receiving the diagnosis of multiple sclerosis: managing the transition. Multiple Sclerosis. 2003;9:82–88.
   PubMed Web of Science ®Google Scholar
• Edwards RG, Barlow JH, Turner AP. Experiences of diagnosis and treatment among people with multiple sclerosis. J Eval Clin Prac. 2008;14:460–464.
   PubMed Web of Science ®Google Scholar
• Miller CM. The lived experience of relapsing multiple sclerosis: a phenomenological study. J Neurosci Nurs. 1997;29:294–304.
   PubMedGoogle Scholar
• Wollin JA, Yates PM, Kristjanson LJ. Supportive and palliative care needs identified by multiple sclerosis patients and their families. Int J Palliat Care Nurs. 2006;12:20–26.
   PubMedGoogle Scholar
• Malcolmson 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
• Kirkpatrick-Pinson DM, Ottens AJ, Fisher T. Women coping successfully with multiple sclerosis and the precursors of change. Qualitat Health Res. 2009;19:181–193.
   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. Qualitat Health Res. 2003;13:1225–1251.
   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. 2010;16:478–488.
   PubMed Web of Science ®Google Scholar
• Solari A, Acquarone N, Pucci E, et al. Communicating the diagnosis of multiple sclerosis: a qualitative study. Multiple Sclerosis. 2007;13:763–769.
   PubMed Web of Science ®Google Scholar
• Pooley CG, Gerrard C, Hollis S, et al. ‘Oh it's a wonderful practice. you can talk to them': a qualitative study of patients' and health professionals' views on the management of type 2 diabetes. Health Social Care Commun. 2001;9:318–326.
   PubMed Web of Science ®Google Scholar
• Lester HE, Tritter JQ, Sorohan H. Patients’ and health professionals’ views on primary care for people with serious mental illness: focus group study. Br Med J. 2005;330:1122–1126.
   PubMed Web of Science ®Google Scholar
• Pinnock H, Kendall M, Murray SA, et al. Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study. Br Med J. 2011;342:268.
   Web of Science ®Google Scholar
• Golla H, Galushko M, Pfaff H, et al. Unmet needs of severely affected multiple sclerosis patients: The health professionals' view. Palliat Med. 2012;26:139–151.
   PubMed Web of Science ®Google Scholar
• Brown FL, Whittingham K, Sofronoff K, et al. Parenting a child with a traumatic brain injury: experiences of parents and health professionals. Brain Injury. 2013;27:1570–1582.
   PubMed Web of Science ®Google Scholar
• Wilkinson S, Joffe H, Yardley L. Qualitative data collection: interviews and focus groups. In Marks D, Yardley L, editors. Research methods for clinical and health psychology. London, UK: Sage; 2004. p. 39–55.
   Google Scholar
• Willig C. Introducing Qualitative Research in Psychology. 3rd ed. New York: Open University Press; 2013.
   Google Scholar
• Braun V, Clarke V. Using thematic analysis in psychology. Qualit Res Psychol. 2006;3:77–101.
   Google Scholar
• Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. London, UK: Sage; 2013.
   Google Scholar
• Fielden AL, Sillence E, Little L. Children's understandings' of obesity, a thematic analysis. Int J Qualitat Stud Health Well-Being. 2011;6. doi: 10.3402/qhw.v6i3.7170.
   PubMedGoogle Scholar
• Wong S, Abdullah N, Abdullah A, et al. Unmet needs of patients with chronic obstructive pulmonary disease (COPD): a qualitative study on patients and doctors. BMC Family Prac. 2014;15:67.
   PubMed Web of Science ®Google Scholar
• Jarrett NJ, Payne SA, Wiles RA. Terminally ill patients' and lay-carers' perceptions and experiences of community-based services. J Adv Nurs. 1999;29:476–483.
   PubMed Web of Science ®Google Scholar
• Mishel MH. Uncertainty in illness. Image J Nurs Sch. 1988;20:225–232.
   PubMedGoogle Scholar
• Kralik D, Brown M, Koch T. Women's experiences of 'being diagnosed' with a long-term illness. J Adv Nurs. 2001;33:594–602.
   PubMed Web of Science ®Google Scholar
• Elian M, Dean G. To tell or not to tell the diagnosis of multiple sclerosis. Lancet. 1985;2:27–28.
   PubMed Web of Science ®Google Scholar
• Mushlin AI, Mooney C, Grow V, et al. The value of diagnostic information to patients with suspected multiple sclerosis. Rochester-Toronto MRI study group. Arch Neurol. 1994;51:67–72.
   PubMedGoogle Scholar
• Charmaz K. The body, identity, and self: adapting to impairment. Sociol Quart. 1995;36:657–680.
   Web of Science ®Google Scholar
• Thorne S, Con A, McGuinness L, et al. Health care communication issues in multiple sclerosis: an interpretive description. Qualitat Health Res. 2004;14:5–22.
   PubMed Web of Science ®Google Scholar
• Ziebland S. The importance of being expert: the quest for cancer information on the internet. Soc Sci Med. 2004;59:1783–1793.
   PubMed Web of Science ®Google Scholar
• Olsson M, Skar L, Soderberg S. Meanings of feeling well for women with multiple sclerosis. Qualitat Health Res. 2010;20:1254–1261.
   PubMed Web of Science ®Google Scholar
• Ptacek JT, Fries EA, Eberhardt TL, et al. Breaking bad news to patients: physicians' perceptions of the process. Support Care Cancer. 1999;7:113–120.
   PubMed Web of Science ®Google Scholar
• Levenstein S. The doctor: a professional under stress. South Afr J Family Practition. 1987;8:5–14.
   Google Scholar
• Fraser DD, Kee CC, Minick P. Living with chronic obstructive pulmonary disease: insiders' perspectives. J Adv Nurs. 2006;55:550–558.
   PubMed Web of Science ®Google Scholar