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The notion of “invisibility” in people’s experiences of the symptoms of multiple sclerosis: a systematic meta-synthesis

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Pages 3276-3290 | Received 22 Aug 2019, Accepted 08 Mar 2020, Published online: 24 Mar 2020

References

  • National MS Society: What is MS? [Internet]. National MS Society; 2018 [cited 2018 Aug 1]. Available from: https://www.nationalmssociety.org/What-is-MS.
  • Yorkston KM, Klasner ER, Swanson KM. Communication in context: a qualitative study of the experiences of individuals with multiple sclerosis. Am J Speech Lang Pathol. 2001;10(2):126–137.
  • Fenu G, Lorefice L, Arru M, et al. Cognition in multiple sclerosis: between cognitive reserve and brain volume. J Neurol Sci. 2018;386:19–22.
  • National MS Society. Research matters-the invisible symptoms of MS [Internet]. National MS Society; 2017 [cited 2018 Aug 17]. Available from: https://www.mssociety.org.uk/research/explore-our-research/research-matters-magazine/research-matters-winter-2017.
  • MS Trust: Invisible symptoms: the unseen side of MS [Internet]. MS Trust; 2016 [cited 2018 Aug 1]. Available from: https://www.mstrust.org.uk/news/views-and-comments/invisible-symptoms-unseen-side-ms.
  • Kratz AL, Ehde DM, Hanley MA, et al. Cross-sectional examination of the associations between symptoms, community integration, and mental health in multiple sclerosis. Arch Phys Med Rehabil. 2016;97(3):386–394.
  • Green R, Cutter G, Friendly M, et al. Which symptoms contribute the most to patients’ perception of health in multiple sclerosis? Multiple Scler J Exp Transl Clin. 2017;3(3):1–6.
  • White CP, White MB, Russell CS. Invisible and visible symptoms of multiple sclerosis: which are more predictive of health distress? J Neuroscience Nurs. 2008;40(2):85–95.
  • National MS Society. But you look so good! [Internet]. National MS Society; 2016 [cited 2018 Aug 17]. Available from: https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Brochure-But-You-Look-So-Good.pdf.
  • MS Society: Signs and symptoms [Internet]. MS Society; 2018 [cited 2018 Aug 1]. Available from: https://www.mssociety.org.uk/about-ms/signs-and-symptoms.
  • Amato M, Langdon D, Montalban X, et al. Treatment of cognitive impairment in multiple sclerosis: position paper. J Neurol. 2013;260(6):1452–1468.
  • Krupp LB, Christodoulou C, Schombert H. Multiple sclerosis and fatigue. In: Deluca J, editor. Issues in clinical and cognitive neuropsychology. Fatigue as a window to the brain. Cambridge (MA): MIT press; 2005. p. 61–71.
  • Mollaoglu M, Ustun E. Fatigue in multiple sclerosis patients. J Clin Nurs. 2009;18(9):1231–1238.
  • Svendsen KB, Jensen TS, Hansen HJ, et al. Sensory function and quality of life in patients with multiple sclerosis and pain. Pain. 2005;114(3):473–481.
  • National MS Society: Bowel Problems [Internet]. National MS Society; 2018 [cited 2018 Aug 1]. Available from: https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Bowel-Problems.
  • Norton C, Chelvanayagam S. Bowel problems and coping strategies in people with multiple sclerosis. Br J Nurs. 2010;19(4):220–226.
  • Dibley L, Coggrave M, McClurg D, et al. “It’s just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis. J Neurol. 2017;264(7):1354–1361.
  • Marrie RA, Cutter GR, Tyry T. Substantial burden of dizziness in multiple sclerosis. Multiple Scler Relat Disord. 2013;2(1):21–28.
  • Archibald CJ, McGrath PJ, Ritvo PG, et al. Pain prevalence, severity and impact in a clinic sample of multiple sclerosis patients. Pain. 1994;58(1):89–93.
  • Kalia LV, OConnor PW. Severity of chronic pain and its relationship to quality of life in multiple sclerosis. Mult Scler. 2005;11(3):322–327.
  • Vitkova M, Rosenberger J, Krokavcova M, et al. Health-related quality of life in multiple sclerosis patients with bladder, bowel and sexual dysfunction. Disabil Rehabil. 2014;36(12):987–992.
  • Rao SM, Leo RG, Ellington L, et al. Cognitive dysfunction in multiple sclerosis. II. Impact on employment and social functioning. Neurol. 1991;41(5):692–696.
  • Janardhan V, Bakshi R. Quality of life in patients with multiple sclerosis: the impact of fatigue and depression. J Neurol Sci. 2002;205(1):51–58.
  • Shaw RL, Booth A, Sutton A, et al. Finding qualitative research: an evaluation of search strategies. BMC Med Res Methodol. 2004;4(1):5.
  • RefWorks [Internet]. Michigan: ProQuest; [cited 2019 May 3]. Available from: https://www.refworks.com/
  • Harper D. Choosing a qualitative research method. In: Harper, D, Thompson AR, editors. Qualitative research methods in mental health and psychotherapy. Oxford (UK): Wiley; 2012. p. 9–22.
  • Malpass A, Shaw A, Sharp D, et al. “Medication career” or “Moral career”? The two sides of managing antidepressants: a meta-ethnography of patients’ experience of antidepressants. Soc Sci Med. 2009;68(1):154–168.
  • Spencer L, Ritchie J. In pursuit of quality. In: Harper, D, Thompson AR, editors. Qualitative research methods in mental health and psychotherapy. Oxford (UK): Wiley; 2012. p. 9–22.
  • Critical Appraisal Skills Programme: 10 questions to help you make sense of qualitative research. Oxford: Public Health Resource Unit; 2018 [cited 2018 Aug 2]. Available from: www.phru.nhs.uk/Doc_Links/Qualitative_Appraisal_Tool.pdf
  • Dixon-Woods M, Shaw RL, Agarwal S, et al. The problem of appraising qualitative research. Quality Saf Healthc. 2004;13(3):223–225.
  • Sandelowski M, Docherty S, Emden C. Focus on qualitative methods qualitative metasynthesis: issues and techniques. Res Nurs Health. 1997;20(4):365–371.
  • Levitt HM, Wertz FJ, Motulsky SL, et al. Recommendations for designing and reviewing qualitative research in psychology: promoting methodological integrity. Qual Psychol. 2017;4(1):2–22.
  • Schutz A. Collected papers 1. The Hague: Martinus Nijhoff; 1962.
  • Levitt H. How to conduct a qualitative meta-analysis: tailoring methods to enhance methodological integrity. Psychother Res. 2018;28(3):367–378.
  • Noyes J, Lewin S, et al. Extracting qualitative evidence. In: Noyes J, Booth A, Hannes K, editors. Supplementary guidance for inclusion of qualitative research in Cochrane systematic reviews of interventions. London (UK): Cochrane collaboration qualitative methods group; 2011 Aug 18 [cited 2018 Aug 15]. Available from: http://cqrmg.cochrane.org/supplemental-handbook-guidance
  • Ring N, Ritchie K, Mandava L, et al. A guide to synthesising qualitative research for researchers undertaking health technology assessments and systematic reviews [Internet]. NHS Quality Improvement Scotland (NHS QIS). 2010 [cited 2018 Aug 17]. Available from: http://www.nhshealthquality.org/nhsqis/8837.html
  • Noblit GW, Hare RD. Meta-ethnography: synthesising qualitative studies. London (UK): Sage; 1988.
  • Timulak L. Meta-analysis of qualitative studies: a tool for reviewing qualitative research findings in psychotherapy. Psychother Res. 2009;19(4-5):591–600.
  • Britten N, Campbell R, Pope C, et al. Using meta ethnography to synthesise qualitative research: a worked example. J Health Serv Res Policy. 2002;7(4):209–215.
  • Dixon-Woods M, Cavers D, Agarwal S, et al. Conducting a critical interpretive synthesis of the literature on access to healthcare by vulnerable groups. BMC Med Res Methodol. 2006;6:35.
  • Moher D, Liberati A, Tetzlaff J, et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med. 2009;6:e1000097.
  • Fitzgerald MH, Paterson KA. The hidden disability dilemma for the preservation of self. J Occup Sci. 1995;2(1):13–21.
  • Dyck I, Jongbloed L. Women with multiple sclerosis and employment issues: a focus on social and institutional environments. Can J Occup Ther. 2000;67(5):337–346.
  • Olsson M, Lexell J, Soderberg S. The meaning of fatigue for women with multiple sclerosis. J Adv Nurs. 2005;49(1):7–15.
  • Shevil E, Finlayson M. Perceptions of persons with multiple sclerosis on cognitive changes and their impact on daily life. Disabil Rehabil. 2006;28(12):779–788.
  • Douglas C, Windsor C, Wollin J. Understanding chronic pain complicating disability: finding meaning through focus group methodology. J Neurosci Nurs. 2008;40(3):158–168.
  • Vickers MH. Life and work with multiple sclerosis (MS): the role of unseen experiential phenomena on unreliable bodies and uncertain lives. Illn Crisis Loss. 2009;17(1):7–21.
  • Lohne V, Aasgaard T, Caspari S, et al. The lonely battle for dignity: individuals struggling with multiple sclerosis. Nurs Ethics. 2010;17(3):301–311.
  • Moriya R, Kutsumi M. Fatigue in Japanese people with multiple sclerosis. Nurs Health Sci. 2010;12(4):421–428.
  • Yorkston KM, Johnson K, Boesflug E, et al. Communicating about the experience of pain and fatigue in disability. Qual Life Res. 2010;19(2):243–251.
  • Olsson M, Skar L, Soderberg S. Meanings of being received and met by others as experienced by women with MS. Int J Qual Stud Health Well-Being. 2011;6:8.
  • Smith C, Olson K, Hale LA, et al. How does fatigue influence community-based exercise participation in people with multiple sclerosis? Disabil Rehabil. 2011;33(23–24):2362–2671.
  • 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. 2014;12(4):356–373.
  • Pretorius C, Joubert N. The experiences of individuals with multiple sclerosis in the Western Cape, South Africa. Health SA Gesondheid. 2014;19(1):12.
  • Wendebourg WJ, Feddersen LK, Lau S, et al. Development and feasibility of an evidence-based patient education program for managing fatigue in multiple sclerosis: the Fatigue Management in MS program (FatiMa). Int J MS Care. 2016;18(3):129–137.
  • Turpin M, Kerr G, Gullo H, et al. Understanding and living with multiple sclerosis fatigue. Br J Occup Ther. 2018;81(2):82–89.
  • van der Meide H, van Gorp D, van der Hiele K, et al. “Always looking for a new balance”: toward an understanding of what it takes to continue working while being diagnosed with relapsing-remitting multiple sclerosis. Disabil Rehabil. 2018;40(21):2545–2552.
  • van der Meide H, Teunissen T, Collard P, et al. The mindful body: a phenomenology of the body with multiple sclerosis. Qual Health Res. 2018;28(14):2239–2249.
  • Goffman E. Stigma.: Notes on the management of spoiled identity. New York (NY): Simon and Schuster; 1963.
  • Charmaz K. Loss of self: a fundamental form of suffering in the chronically ill. Soc Health Illn. 1983;5(2):168–195.
  • Parsons T. The Social System. London (UK): Routledge; 1951.
  • Bolam B, Gleeson K, Murphy S. “Lay Person” or “Health Expert”? Exploring theoretical and practical aspects of reflexivity in qualitative health research. Forum: Qual Soc Res. 2003;4(2):Art 26.
  • Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: a critical review. BMC Med Red Methodol. 2009;9:59.
  • Atkins S, Lewin S, Smith H, et al. Conducting a meta-ethnography of qualitative literature: lessons learnt. BMC Med Red Methodol. 2008;8:21.
  • Barbour RS. Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? Br Med J. 2001;322(7294):1115–1117.

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