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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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