Abstract
Treatments for depression and anxiety in multiple sclerosis (MS) are effective but evidence suggests that individuals do not always seek help for emotional difficulties. This study explored how ten women with MS (aged 30–64), recruited via a hospital based MS clinic, coped with and understood their emotions. The semi-structured interviews were analysed using interpretative phenomenological analysis. Eight participants discussed the analytic process and themes. Four overarching themes emerged: Disclosure stress, Uncomfortable dependence, Facing deterioration and One step at a time. The women struggled emotionally with many aspects of living with MS yet coping alone provided a way of defying MS and maintaining independence and control. The women needed emotional support but reported thinking others either did not notice or understand; their emotions often felt invisible. More holistic care from services was desired. Non help-seeking for distress was partially influenced by a desire to keep things “normal” and a lack of knowledge regarding service provision.
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Ahern, K. J. (1999). Ten tips for reflexive bracketing. Qualitative Health Research, 9, 407–411. doi:10.1177/104973239900900309.
Barney, L. J., Griffiths, K. M., Jorm, A. F., & Christensen, H. (2006). Stigma about depression and its impact on help-seeking intentions. Australian and New Zealand Journal of Psychiatry, 40, 51–54. doi:10.1080/j.1440-1614.2006.01741.x.
Beiske, A. G., Svensson, E., Sandanger, I., Czujko, B., Pedersen, E. D., Aarseth, J. H., & Myhr, K. M. (2008). Depression and anxiety amongst multiple sclerosis patients. European Journal of Neurology, 15, 239–245. doi:10.1111/j.1468-1331.2007.02041.x.
Biddle, L., Donovan, J., & Gunnell, D. (2007). Explaining non-help-seeking amongst young adults with mental distress: A dynamic interpretive model of illness behaviour. Sociology of Health and Illness, 29, 983–1002. doi:10.1111/j.1467-9566.2007.01030.x.
Biggerstaff, D., & Thompson, A. (2008). interpretative phenomenological analysis (IPA): A qualitative methodology of choice in healthcare research. Qualitative Research in Psychology, 5, 214–224. doi:10.1080/14780880802314304.
Bjelland, I., Dahl, A. A., Haug, T. T., & Necklemann, D. (2002). The validity of the hospital anxiety and depression scale. An updated literature review. Journal of Psychosomatic Research, 52, 69–77. doi:10.1016/S0022-3999(01)00296-3.
Bruce, J. M., Hancock, L. M., Arnett, P., & Lynch, S. (2010). Treatment adherence in multiple sclerosis: Association with emotional status, personality, and cognition. Journal of Behavioral Medicine, 33, 219–227. doi:10.1007/s10865-010-9247-y.
Cameron, L., Leventhal, E. A., & Leventhal, H. (1993). Symptom representations and affect as determinants of care seeking in a community-dwelling, adult sample population. Health Psychology, 12, 171–179. doi:10.1037/0278-6133.12.3.171.
Chwastiak, L., & Ehde, D. M. (2007). Psychiatric issues in multiple sclerosis. Psychiatric Clinics of North America, 30, 803–817. doi:10.1016/j.psc.2007.07.003.
Corrigan, P. (2004). How stigma interferes with mental health care. American Psychologist, 59, 614–625. doi:10.1037/0003-066X.59.7.614.
Dahl, O., Stordal, E., Lydersen, S., & Midgard, R. (2009). Anxiety and depression in multiple sclerosis. A comparative population-based study in Nord-Trøndelag County, Norway. Multiple Sclerosis, 15, 1495–1501. doi:10.1177/1352458509351542.
Elliott, R., Fischer, C. T., & Rennie, D. L. (1999). Evolving guidelines for publication of qualitative research studies in psychology and related fields. British Journal of Clinical Psychology, 38, 215–229. doi:10.1348/014466599162782.
Feinstein, A. (2011). Multiple sclerosis and depression. Multiple Sclerosis, 17, 1276–1281. doi:10.1177/1352458511417835.
Fruehwald, S., Loeffler-Stastka, H., Eher, R., Saletu, B., & Baumhackl, U. (2001). Depression and quality of life in multiple sclerosis. Acta Neurologica Scandinavica, 104(5), 257–261. doi:10.1034/j.1600-0404.2001.00022.x.
Green, J., Willis, K., Hughes, E., Small, R., Welch, N., Gibbs, L., & Daly, J. (2007). Generating best evidence from qualitative research: the role of data analysis. Australian and New Zealand Journal of Public Health, 31, 545–550. doi:10.1111/j.1753-6405.2007.00141.x.
Grossman, P., Kappos, L., Gensicke, H., D’Souza, M., Mohr, D. C., Penner, I. K., et al. (2010). MS quality of life, depression, and fatigue improve after mindfulness training: A randomized trial. Neurology, 75, 1141–1149. doi:10.1212/WNL.0b013e3181f4d80d.
Honarmand, K., & Feinstein, A. (2009). Validation of the hospital anxiety and depression scale for use with multiple sclerosis patients. Multiple Sclerosis, 15, 1518–1524. doi:10.1177/1352458509347150.
Kessler, R. C., Berglund, P., Demler, O., Jin, R., Merikangas, K. R., & Walters, E. E. (2005). Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62, 593–602. doi:10.1001/archpsyc.62.6.593.
Mozo-Dutton, L., Simpson, J., & Boot, J. (2012). MS and me: Exploring the impact of multiple sclerosis on perceptions of self. Disability and Rehabilitation, 34, 1208–1217. doi:10.3109/09638288.2011.638032.
Olsson, M., Lexell, J., & Söderberg, S. (2008). The meaning of women’s experiences of living with multiple sclerosis. Health Care for Women International, 29(4), 416–430. doi:10.1080/07399330701876646.
Olsson, M., Skär, L., & Söderberg, S. (2011). Meanings of being received and met by others as experienced by women with MS. International Journal of Qualitative Studies on Health and Well-Being, 6, 5769–5776. doi:10.3402/qhw.v6i1.5769.
Patten, S. B., Newman, S., Becker, M., Riddell, C., & Metz, L. (2007). Disease management for depression in an MS clinic. International Journal of Psychiatry in Medicine, 37, 459–473. doi:10.2190/PM.37.4.h.
Rintell, D. J., Frankel, D., Minden, S. L., & Glanz, B. I. (2012). Patients’ perspectives on quality of mental health care for people with MS. General Hospital Psychiatry, 34, 604–610. doi:10.1016/j.genhosppsych.2012.04.001.
Rossier, P., & Wade, D. T. (2002). The Guy’s neurological disability scale in patients with multiple sclerosis: A clinical evaluation of its reliability and validity. Clinical Rehabilitation, 16, 75–95. doi:10.1191/0269215502cr447oa.
Sharrack, B., & Hughes, R. A. C. (1999). The Guy’s neurological disability scale (GNDS): A new disability measure for multiple sclerosis. Multiple Sclerosis, 5, 223–233. doi:10.1177/135245859900500406.
Shaw, R. L. (2001). Why use interpretative phenomenological analysis in health psychology?. Health Psychology Update, 10, 48–52.
Shaw, R. (2010). Embedding reflexivity within experiential qualitative psychology. Qualitative Research in Psychology, 7, 233–243. doi:10.1080/14780880802699092.
Smith, B. A. (1999). Ethical and methodologic benefits of using a reflexive journal in hermeneutic-phenomenologic research. Journal of Nursing Scholarship, 31, 359–363. doi:10.1111/j.1547-5069.1999.tb00520.x.
Smith, J. A., Flowers, P., & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London: Sage.
Smith, J. A., Jarman, M., & Obsorne, M. (1999). Doing interpretative phenomenological analysis. In M. Murray & K. Chamberlain (Eds.), Qualitative health psychology: Theories and methods. London: Sage.
Sollom, A. C., & Kneebone, I. I. (2007). Treatment of depression in people who have multiple sclerosis. Multiple Sclerosis, 13, 632–635. doi:10.1177/1352458507072384.
Stiles, W. B. (1993). Quality control in qualitative research. Clinical Psychology Review, 13, 593–618. doi:10.1016/0272-7358(93)90048-Q.
Walsh, S., Hagan, T., & Gamsu, D. (2000). Rescuer and rescued: Applying a cognitive analytic perspective to explore the ‘mis-management’ of asthma. British Journal of Medical Psychology, 73, 151–168. doi:10.1348/000711200160390.
Willig, C. (2004). Introducing qualitative research in psychology: Adventure in theory and method. Berkshire: Open University Press.
Yardley, L. (2000). Dilemmas in qualitative health research. Psychology and Health, 15, 215–228. doi:10.1080/08870440008400302.
Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica, 67, 361–370. doi:10.1111/j.1600-0447.1983.tb09716.x.
Acknowledgments
Contributors: Thank you to the women who so honestly and willingly opened up their lives and shared their experiences. It was a privilege to hear their narratives of struggle and triumph. JBJ, SW, CI and L Martin contributed to the design of the study. CI identified potential participants. Consultant Neurologists B Sharrack, S Price, S Howell and R Lindert assisted in patient recruitment. JBJ conducted all interviews and participant feedback discussions. JBJ analysed the data for themes. SW supported further data analysis. SW, CI, E Lam, E Roberts, H Swan, L Turner, and S Wonders audited the analytic process. All authors contributed substantially to conception and design, or analysis and interpretation of data, and to drafting the article or revising it critically for important intellectual content. JBJ is the guarantor. The authors are indebted to the Journal Editors and Reviewers for their invaluable comments.
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Conflict of Interest
Authors Joanna Blundell Jones, Sue Walsh and Claire Isaac declare that they have no conflict of interest.
Human and Animal Rights and Informed Consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (University of Sheffield; Yorkshire and the Humber NRES Committee, reference: 11/YH/0263) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from all patients for being included in the study. Additional informed consent was obtained from all patients for the use of their anonymised quotations in this article.
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Blundell Jones, J., Walsh, S. & Isaac, C. “Putting One Foot in Front of the Other”: A Qualitative Study of Emotional Experiences and Help-Seeking in Women with Multiple Sclerosis. J Clin Psychol Med Settings 21, 356–373 (2014). https://doi.org/10.1007/s10880-014-9408-1
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DOI: https://doi.org/10.1007/s10880-014-9408-1