The lived experience of uncertainty in everyday life with MS

References

• Lublin FD, Reingold SC, Cohen JA, et al. Defining the clinical course of multiple sclerosis: the 2013 revisions. Neurology. 2014;83(3):278–286.
   PubMed Web of Science ®Google Scholar
• Knaster ES, Yorkston KM, Johnson K, et al. Perspectives on self-management in multiple sclerosis: a focus group study. Int J MS Care. 2011;13(3):146–152.
   PubMedGoogle Scholar
• Kratz AL, Murphy SL, Braley TJ. Ecological momentary assessment of pain, fatigue, depressive, and cognitive symptoms reveals significant daily variability in multiple sclerosis. Arch Phys Med Rehabil. 2017;98(11):2142–2150.
   PubMed Web of Science ®Google Scholar
• Sakellariou D. Enacting varieties of subjectivity through practices of care: a story of living with motor neuron disease. Qual Health Res. 2016;26(14):1902–1910.
   PubMed Web of Science ®Google Scholar
• Dennison L, McCloy Smith E, Bradbury K, et al. How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication? A qualitative study. PLoS One. 2016;11(7):e0158982.
   PubMed Web of Science ®Google Scholar
• Toombs KS. Sufficient onto the day: a life with multiple sclerosis. In: Toombs KS, Barnard D, Carson R, editors. Chronic illness: From experience to policy. Bloomington (IN): Indiana University Press; 1995. p. 3–23.
   Google Scholar
• Barker BA, das Nair R, Lincoln BN, et al. Social identity in people with multiple sclerosis: a meta-synthesis of qualitative research. Soc Care Neurodis. 2014;5(4):256–267.
   Google Scholar
• Davies F, Edwards A, Brain K, et al. ‘You are just left to get on with it’: qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis. BMJ Open. 2015;5(7):e007674.
   PubMed Web of Science ®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(9):662–674.
   PubMed Web of Science ®Google Scholar
• Boeije HR, Duijnstee MS, Grypdonck MH, et al. Encountering the downward phase: biographical work in people with multiple sclerosis living at home. Soc Sci Med. 2002;55(6):881–893.
   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(3):478–488.
   PubMed Web of Science ®Google Scholar
• Hughes N, Locock L, Ziebland S. Personal identity and the role of ‘carer’ among relatives and friends of people with multiple sclerosis. Soc Sci Med. 2013;96:78–85.
   PubMed Web of Science ®Google Scholar
• Warren N, Ayton D. (Re)negotiating normal every day: Phenomenological uncertainty in Parkinson’s disease. In: Gareth GM, Thomas M, Sakellariou D, editors. Disability, normalcy, and the everyday. Abingdon (UK): Routledge; 2018. p. 142–157.
   Google Scholar
• Nissen N. Researching care practices in everyday life with Multiple Sclerosis. REHPA, 2019. Available from: https://portal.findresearcher.sdu.dk/en/publications/briefing-paper-2-researching-care-practices-in-everyday-life-with
   Google Scholar
• Gubrium JF, Holstein JA, editors. Handbook of interview research. Thousand Oaks (CA): SAGE Publications, Inc.; 2001.
   Google Scholar
• Elliott E, Watson AJ, Harries U. Harnessing expertise: involving peer interviewers in qualitative research with hard-to-reach populations. Health Expect. 2002;5(2):172–178.
   PubMedGoogle Scholar
• Abma TA. Patients as partners in a health research agenda setting: the feasibility of a participatory methodology. Eval Health Prof. 2006;29(4):424–439.
   PubMed Web of Science ®Google Scholar
• Miles MB, Huberman MA. Qualitative data analysis - an expanded sourcebook. Thousand Oaks (CA); London (UK); New Delhi (India): Sage Publications; 1994.
   Google Scholar
• Desjarlais R, Throop CJ. Phenomenological approaches in anthropology. Annu Rev Anthropol. 2011;40(1):87–102.
   Web of Science ®Google Scholar
• Riessman CK. Performing identities in illness narrative: masculinity and multiple sclerosis. Qualitative Research. 2003;3(1):5–33.
   Google Scholar
• Charmaz K. Identity dilemmas of chronically ill men. Soc Quarterly. 1994;35(2):269–288.
   Web of Science ®Google Scholar
• Prunty M, Sharpe L, Butow P, et al. The motherhood choice: themes arising in the decision-making process for women with multiple sclerosis. Mult Scler. 2008;14(5):701–704.
   PubMed Web of Science ®Google Scholar
• Toombs KS. The lived experience of disability. Hum Stud. 1995;18(1):9–23.
   Web of Science ®Google Scholar
• Cadden MH, Arnett PA, Tyry TM, et al. Judgment hurts: the psychological consequences of experiencing stigma in multiple sclerosis. Soc Sci Med. 2018;208:158–164.
   PubMed Web of Science ®Google Scholar
• Warren N, Manderson L. Reframing disability and quality of life: a global perspective. Social indicators research series. Vol. 52. Dordrecht (The Netherlands): Springer; 2013.
   Google Scholar
• Van Reenen E, Van Der Borg W, Visse M, et al. Fear, fight, familiarize: the experiences of people living with relapsing-remitting multiple sclerosis and taking oral medication. Int J Qual Stud Health Well-Being. 2019;14(1):1648946.
   PubMed Web of Science ®Google Scholar
• Charmaz K. Good days, bad days: the self in chronic illness and time. New Brunswick (NJ): Rutgers University Press; 1991.
   Google Scholar
• Adam B. Timewatch: the social analysis of time. Oxford (UK): Polity Press; 1995.
   Google Scholar
• Skovgaard L, Pedersen IK, Verhoef M. Exclusive use of alternative medicine as a positive choice: a qualitative study of treatment assumptions among people with multiple sclerosis in Denmark. Int J MS Care. 2014;16(3):124–131.
   PubMedGoogle Scholar
• Skovgaard L, Pedersen IK, Verhoef M. Use of bodily sensations as a risk assessment tool: exploring people with Multiple Sclerosis’ views on risks of negative interactions between herbal medicine and conventional drug therapies. BMC Complement Altern Med. 2014;14:59.
   PubMed Web of Science ®Google Scholar
• Warren N, Manderson L. Credibility and the Inexplicable: Parkinson’s disease and assumed diagnosis in contemporary australia. In: Smith-Morris C, editor. Diagnostic controversy. cultural perspectives on competing knowledge in healthcare. New York (NY); London (UK): Routledge; 2015. p. 127–146.
   Google Scholar
• Andreasen AK, Stenager E, Dalgas U. The effect of exercise therapy on fatigue in multiple sclerosis. Mult Scler. 2011;17(9):1041–1054.
   PubMed Web of Science ®Google Scholar