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Articles

Adjustment modes in the trajectory of progressive multiple sclerosis: a qualitative study and conceptual model

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Pages 343-360 | Received 04 Jun 2016, Accepted 21 Nov 2016, Published online: 27 Dec 2016

References

  • Ahlgren, C., Oden, A., & Lycke, J. (2011). High nationwide prevalence of multiple sclerosis in Sweden. Multiple Sclerosis Journal, 17, 901–908. doi:10.1177/1352458511403794
  • Arnett, P. A., Higginson, C. I., Voss, W. D., Randolph, J. J., & Grandey, A. A. (2002). Relationship between coping, cognitive dysfunction and depression in multiple sclerosis. The Clinical Neuropsychologist, 16, 341–355.10.1076/clin.16.3.341.13852
  • Blundell Jones, J., Walsh, S., & Isaac, C. (2014). ‘Putting one foot in front of the other’: A qualitative study of emotional experiences and help-seeking in women with multiple sclerosis. Journal of Clinical Psychology in Medical Settings, 21, 356–373. doi:10.1007/s10880-014-9408-1
  • Carver, C. S., & Scheier, M.F. (1999). Themes and issues in the self regulation of behaviour. In R. S. Wyer, (Ed.), Perspectives on behavioral self-regulation (Vol. XII, pp. 1–106). Mahwah, NJ: Lawrence Erlbaum Associates.
  • Carver, C. S., & Scheier, M. F. (2000). Scaling back goals and recalibration of the affect system are processes in normal adaptive self-regulation: Understanding ‘response shift’ phenomena. Social Science & Medicine, 50, 1715–1722. doi:10.1016/s0277-9536(99)00412-8
  • Charmaz, K. (2006). Constructing grounded theory. London: Sage.
  • Charmaz, K. (1990). ‘Discovering’chronic illness: Using grounded theory. Social Science & Medicine, 30, 1161–1172. doi:10.1016/0277-9536(90)90256-R
  • Compston, A., & Coles, A. (2008). Multiple sclerosis. The Lancet, 372, 1502–1517. doi:10.1016/S0140-6736(08)61620-7
  • Deibel, F., Edwards, E., & Edwards, A. (2013). Patients’, carers’ and providers’ experiences and requirements for support in self-management of multiple sclerosis: A qualitative study. European Journal for Person Centered Healthcare, 1, 457–467. doi:10.5750/ejpch.v1i2.687
  • Demirkiran, M., Sarica, Y., Uguz, S., Yerdelen, D., & Aslan, K. (2006). Multiple sclerosis patients with and without sexual dysfunction: Are there any differences? Multiple Sclerosis, 12, 209–214. doi:10.1191/135248506ms1253oa
  • Denney, D. R., Sworowski, L. A., & Lynch, S. G. (2005). Cognitive impairment in three subtypes of multiple sclerosis. Archives of Clinical Neuropsychology, 20, 967–981. doi:10.1016/j.acn.2005.04.012
  • Dennison, L., Yardley, L., Devereux, A., & Moss-Morris, R. (2011). Experiences of adjusting to early stage Multiple Sclerosis. Journal of Health Psychology, 16, 478–488. doi:10.1177/1359105310384299
  • Finlayson, M., & van Denend, T. (2003). Experiencing the loss of mobility: Perspectives of older adults with MS. Disability and Rehabilitation, 25, 1168–1180. doi:10.1080/09638280310001596180
  • Fisniku, L. K., Brex, P. A., Altmann, D. R., Miszkiel, K. A., Benton, C. E., Lanyon, R., … Miller, D. H. (2008). Disability and T2 MRI lesions: A 20-year follow-up of patients with relapse onset of multiple sclerosis. Brain, 131, 808–817.
  • Fong, T., Finlayson, M., & Peacock, N. (2006). The social experience of aging with a chronic illness: Perspectives of older adults with multiple sclerosis. Disability and Rehabilitation, 28, 695–705. doi:10.1080/09638280500277495
  • Ford, L., Gerry, E., Johnson, M. H., & Tennant, A. (2001). Health status and quality of life of people with multiple sclerosis. Disability and Rehabilitation, 23, 516–521. doi:10.1080/09638280010022090
  • Fox, R. J., Thompson, A., Baker, D., Baneke, P., Brown, D., Browne, P., … Zuidwijk, K. (2012). Setting a research agenda for progressive multiple sclerosis: The International Collaborative on Progressive MS. Multiple Sclerosis Journal, 18, 1534–1540. doi:10.1177/1352458512458169
  • Galushko, M., Golla, H., Strupp, J., Karbach, U., Kaiser, C., Ernstmann, N., … Voltz, R. (2014). Unmet needs of patients feeling severely affected by multiple sclerosis in Germany: A qualitative study. Journal of Palliative Medicine, 17, 274–281. doi:10.1089/jpm.2013.0497
  • Gaudino, E. A., Chiaravalloti, N. D., DeLuca, J., & Diamond, B. J. (2001). A comparison of memory performance in relapsing-remitting, primary progressive and secondary progressive, multiple sclerosis. Neuropsychiatry Neuropsychology, and Behavioral Neurology, 14, 32–44.
  • Ghafari, S., Khoshknab, M. F., Norouzi, K., & Mohamadi, E. (2014). Spousal support as experienced by people with multiple sclerosis: A qualitative study. Journal of Neuroscience Nursing, 46, E15–E24. doi:10.1097/JNN.0000000000000081
  • Heaton, R. K., Nelson, L. M., Thompson, D. S., Burks, J. S., & Franklin, G. M. (1985). Neuropsychological findings in relapsing-remitting and chronic-progressive multiple sclerosis. Journal of Consulting and Clinical Psychology, 53, 103–110. doi:10.1037/0022-006X.53.1.103
  • Irvine, H., Davidson, C., Hoy, K., & Lowe-Strong, A. (2009). Psychosocial adjustment to multiple sclerosis: Exploration of identity redefinition. Disability and Rehabilitation, 31, 599–606. doi:10.1080/09638280802243286
  • Lexell, E. M., Lund, M. L., & Iwarsson, S. (2009). Constantly changing lives: Experiences of people with multiple sclerosis. American Journal of Occupational Therapy, 63, 772–781. doi:10.5014/ajot.63.6.772
  • Lode, K., Bru, E., Klevan, G., Myhr, K. M., Nyland, H., & Larsen, J. P. (2009). Depressive symptoms and coping in newly diagnosed patients with multiple sclerosis. Multiple Sclerosis, 13, 792–799. doi:10.1177/1352458509102313
  • Lublin, F. D., & Reingold, S. C. (1996). Defining the clinical course of multiple sclerosis: Results of an international survey. Neurology, 46, 907–911.10.1212/WNL.46.4.907
  • Mackenzie, I. S., Morant, S. V., Bloomfield, G. A., MacDonald, T. M., & O’Riordan, J. (2013). Incidence and prevalence of multiple sclerosis in the UK 1990–2010: A descriptive study in the general practice research database. Journal of Neurology, Neurosurgery & Psychiatry, 85, 76–84. doi:10.1136/jnnp-2013-305450
  • McPheters, J. K., & Sandberg, J. G. (2010). The relationship among couple relationship quality, physical functioning, and depression in multiple sclerosis patients and partners. Families, Systems, & Health, 28, 48–68. doi:10.1037/a0018818
  • Miller, D. H., & Leary, S. M. (2007). Primary-progressive multiple sclerosis. The Lancet Neurology, 6, 903–912. doi:10.1016/S1474-4422(07)70243-0
  • Montel, S. R., & Bungener, C. (2007). Coping and quality of life in one hundred and thirty five subjects with multiple sclerosis. Multiple Sclerosis, 13, 393–401. doi:10.1177/1352458506071170
  • Moss-Morris, R. (2013). Adjusting to chronic illness: Time for a unified theory. British Journal of Health Psychology, 18, 681–686. doi:10.1111/bjhp.12072
  • Novick, G. (2008). Is there a bias against telephone interviews in qualitative research? Research in Nursing & Health, 31, 391–398. doi:10.1002/nur.20259
  • Papathanasiou, A., Messinis, L., Georgiou, V. L., & Papathanasopoulos, P. (2014). Cognitive impairment in relapsing remitting and secondary progressive multiple sclerosis patients: Efficacy of a computerized cognitive screening battery. ISRN Neurology, 2014, 151379. doi:10.1155/2014/151379
  • Rabinowitz, A. R., & Arnett, P. A. (2009). A longitudinal analysis of cognitive dysfunction, coping, and depression in multiple sclerosis. Neuropsychology, 23, 581–591. doi:10.1037/a0016064
  • Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks: Sage.
  • Sturges, J. E., & Hanrahan, K. J. (2004). Comparing telephone and face-to-face qualitative interviewing: A research note. Qualitative Research, 4, 107–118. doi:10.1177/1468794104041110
  • Tompkins, S. A., Roeder, J. A., Thomas, J. J., & Koch, K. K. (2013). Effectiveness of a relationship enrichment program for couples living with multiple sclerosis. International Journal of MS Care, 15, 27–34. doi:10.7224/1537-2073.2012-002
  • Vleugels, L., Pfennings, L., Pouwer, F., Cohen, L., Ketelaer, P., Polman, C., … van der Ploeg, H. (1998). Psychological functioning in primary progressive versus secondary progressive multiple sclerosis. British Journal of Medical Psychology, 71 (Pt 1), 99–106. doi:10.1111/j.2044-8341.1998.tb01370.x
  • Wallin, M. T., Culpepper, W.J., Coffman, P., Pulaski, S., Maloni, H., Mahan, C.M., … Veterans Affairs Multiple Sclerosis Centres of Excellence Epidemiology Group. (2012). The Gulf War era multiple sclerosis cohort: Age and incidence rates by race, sex and service. Brain, 135, 1778–1785. doi:10.1093/brain/aws099
  • Wilkinson, H. R., & das Nair, R. (2013). The psychological impact of the unpredictability of multiple sclerosis: A qualitative literature meta-synthesis. British Journal of Neuroscience Nursing, 9, 172–178.10.12968/bjnn.2013.9.4.172

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