'It struck at the heart of who I thought I was': A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

Jane Desborough; Crystal Brunoro; Anne Parkinson; Katrina Chisholm; Mark Elisha; Janet Drew; Vanessa Fanning; Christian Lueck; Anne Bruestle; Matthew Cook; Hanna Suominen; Antonio Tricoli; Adam Henschke; Christine Phillips

doi:10.1111/hex.13093

'It struck at the heart of who I thought I was': A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis

Health Expect. 2020 Oct;23(5):1007-1027. doi: 10.1111/hex.13093. Epub 2020 Jun 24.

Authors

Affiliations

¹ Department of Health Services Research and Policy, Research School of Population Health, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
² Australian National University Medical School, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
³ John Curtin School of Medical Research, College of Health and Medicine, Australian National University, Canberra, ACT, Australia.
⁴ School of Computer Science, College of Engineering and Computer Science, Australian National University, Canberra, ACT, Australia.
⁵ Research School of Electrical Energy & Materials Engineering, College of Engineering and Computer Science, Australian National University, Canberra, ACT, Australia.
⁶ National Security College, College of Asia and the Pacific, Australian National University, Canberra, ACT, Australia.

Abstract

Background: People with multiple sclerosis (MS) have varied experiences and approaches to self-management. This review aimed to explore the experiences of people with MS, and consider the implications of these experiences for clinical practice and research.

Methods: A meta-synthesis of the qualitative literature examining experiences of people with MS was conducted using systematic searches of ProQuest, PubMed, CINAHL and PsycINFO. We incorporated feedback from team members with MS as expert patient knowledge-users to capture the complex subjectivities of persons with lived experience responding to research on lived experience of the same disease.

Results: Of 1680 unique articles, 77 met the inclusion criteria. We identified five experiential themes: (a) the quest for knowledge, expertise and understanding, (b) uncertain trajectories (c) loss of valued roles and activities, and the threat of a changing identity, (d) managing fatigue and its impacts on life and relationships, and (f) adapting to life with MS. These themes were distributed across three domains related to disease (symptoms; diagnosis; progression and relapse) and two contexts (the health-care sector; and work, social and family life).

Conclusion: The majority of people in the studies included in this review expressed a determination to adapt to MS, indicating a strong motivation for people with MS and clinicians to collaborate in the quest for knowledge. Clinicians caring for people with MS need to consider the experiential and social outcomes of this disease such as fatigue and the preservation of valued social roles, and incorporate this into case management and clinical planning.

Keywords: MS; multiple sclerosis; patient experience; perceptions; review literature.

Publication types

Meta-Analysis
Research Support, Non-U.S. Gov't
Review

MeSH terms

Humans
Multiple Sclerosis*
Qualitative Research