Remodelling the Life Course: Making the Most of Life with Multiple Sclerosis
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Abstract
The aim of the study was to develop a substantive grounded theory on how to live a life as good as possible with multiple sclerosis (MS). The question of how to improve the quality of life is of key importance when speaking of a chronic illness like MS. We still have little knowledge of this important question from the patients’ perspective. Classic grounded theory was used to explore patients’ experiences of living with MS. The aim was to identify their main concern and how they process this concern at different phases in their life course. Twenty-one interviews were conducted with 17 participants diagnosedwith multiple sclerosis. Participant observation at five courses for people with a multiple sclerosis diagnosis generated field notes. The participants’ main concern was how to live a life as good as possible in spite of their deteriorating health. The participants met this challenge through a process of remodelling the life course, in four phases: postponing (keeping up a normal life), adjusting (moving on to a changed life), restructuring (doing the best of it in a changed life), and transforming (preventing illness from controlling life). The remodelling process is influenced by the individual context, like the current health situation, biography, relations, and structural conditions. The process of remodelling helps us understand what facilitates and what hinders patients with MS from living a good life.
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References
Audulv, Å. (2013). The overtime development of chronic illness self-management patterns: a longitudinal qualitative study. BMC Public Health, 13(1), 1-15. http://dx.doi:10.1186/1471-2458-13-452
Benito-Len, J., Manuel Morales, J., Rivera-Navarro, J., & Mitchell, A. J. (2003). A review about the impact of multiple sclerosis on health-related quality of life. Disability & Rehabilitation, 25(23), 1291-1303. doi:10.1080/09638280310001608591
Coleman, K., Austin, B., Brach, C., & Wagner, E. (2009). Evidence on the chronic care model in the new millennium. Health Affairs, 28(1), 75.
Dubouloz, C., King, J., & Paterson, B. (2010). A model of the process of transformation in primary care for people living with chronic illnesses. Chronic Illness, 6(4), 282-293.
Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. Chicago, IL: Aldine Pub. Co.
Glaser, B. G.(1978). Theoretical sensitivity: Advances in the methodology of grounded theory. Mill Valley, CA.: Sociology Press.
Henderson, V., Styles, G., & Clark, D. (2006). The concept of nursing*/30th anniversary commentary on Henderson V. (1978) The concept of nursing. Journal of Advanced Nursing 3, 113-130. Journal of Advanced Nursing, 53(1), 21-34.
Maloni, H. W. (2013). Multiple sclerosis: Managing patients in primary care. Nurse Practitioner, 38, 24-35. doi:10.1097/01.NPR.0000427606.09444.c6
McCabe, M. P., & De Judicibus, M. (2005). The Effects of Economic Disadvantage on Psychological Well-being and Quality of Life among People with Multiple Sclerosis. Journal of Health Psychology, 10(1), 163-173. doi:10.1177/1359105305048562
McCabe M. P., Stokes M., McDonald, E. ( 2009). Changes in quality of life and coping among people with multiple sclerosis over a 2 year period. Psychology, Health & Medicine, 14(1), 86-96.
Mikula, P., Nagyova, I., Krokavcova, M. Vitkova, M., Rosenberger, J. Szilasiova, J. Gdovinova, Z.. Groothoff, J. W. & van Dijk J.P. (2014) Coping and its importance for quality of life in patients with multiple sclerosis, Disability and Rehabilitation, 36(9), 732-736. doi:10.3109/09638288.2013.808274
Nortvedt, M. W., & Riise, M. W. (2003). The use of quality of life measures in multiple sclerosis research. Multiple Sclerosis, 9(1), 63-72. http://dx.doi:10.1191/1352458503ms871oa
Oprea, L., Braunack-Mayer A., Rogers W. A. ,& Stocks, N.(2010). An ethical justification for the Chronic Care Model (CCM), Health Expectations, 13(1), 55-64.
Paterson, B. L. (2001). Myth of empowerment in chronic illness. Journal of Advanced Nursing, 34(5),574-81.
Paterson, B. L. (2003). The koala has claws: Applications of the shifting perspectives model in research of chronic illness. Qualitative Health Research, 13(7), 987-994. Ploughman, M., Austin, M. W., Murdoch, M., Kearney, A., Fisk, J. D., Godwin, M. &
Stefanelli, M. (2012) Factors influencing healthy aging with multiple sclerosis: A qualitative study. Disability and Rehabilitation, 34, 26-33. http://dx.doi.org/10.3109/09638288.2011.585212
Reynolds, F., & Prior, S. (2003). "Sticking jewels in your life": Exploring women's strategies for negotiating an acceptable quality of life with multiple sclerosis. Qualitative Health Research, 13(9), 1225-1251.
Russell, C. S. W., Mark, B., White, C. P. (2006). Why me? Why now? Why multiple sclerosis?: Making meaning and perceived quality of life in a Midwestern sample of patients with multiple sclerosis. Families, Systems, & Health, 24(1), 65-81.
Satinovic, M. (2009). An intervention program using remodelling the course of life theory among persons with multiple sclerosis. In Barbara M., Artinian, T. G. , Cone, P. H. Cone (eds). Glaserian grounded theory in nursing research: trusting emergence New York, NY: Springer p. 329-36.
Somerset, M., Sharp, D., & Campbell, R. (2002). Multiple sclerosis and quality of life: A qualitative investigation. Journal of Health Services Research and Policy, 7(3),151-159.
Thorne, S., & Paterson, B. C. (1998). Shifting images of chronic illness. Image - the Journal of Nursing Scholarship, 30(2), 173-8. Retrieved from http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=med4&NEWS=N&AN=9775561
Thorne, S., & Paterson, B. C. ( 2000) Two decades of insider research: what do we know and don't about chronic illness experience. Annual Review of Nursing Research, 18, 3-25.
Topcu, G., Buchanan, H., Aubeeluck, A., & Garip G. (2016) Caregiving in multiple sclerosis and quality of life: A meta-synthesis of qualitative research, Psychology & Health, 31(6), 693-710. doi:10.1080/08870446.2016.1139112
Årestedt, L., Benzein, L., E., Persson, C., Rämgård, M. (2016) A shared respite - The meaning of place for family well-being in families living with chronic illness. International Journal of Qualitative Studies on Health and Well-Being, 11. doi:10.3402/qhw.v11.30308