A narrative exploration of the evolving perception of exercise among people with multiple sclerosis

ABSTRACT

There are numerous physical, social and psychological benefits of exercise for persons with multiple sclerosis (MS), yet fewer than 20% of this population engage in sufficient amounts of exercise for health benefits. This low rate of exercise engagement may be associated with a lack of understanding regarding how persons with MS perceive exercise, and its meanings in the context of their lived experiences. This research explored how perceptions of exercise evolved over the course of living with MS. We conducted a structural narrative analysis on the testimonies of 50 individuals with MS, focusing on perceptions of exercise from pre-diagnosis through onset and diagnosis to future experiences with the illness. Two narratives were crafted reflecting the different evolutions of perceptions of exercise over time. The first, ‘the continuous exerciser’, reflected the experiences of individuals who continued exercise regardless of their MS diagnosis. The second, ‘the long-term non-exerciser’, reflected the experiences regarding individuals who were inactive over a prolonged period including before and after their diagnosis. The intersection of age, however, changed the meaning of exercise for older participants resulting in this behaviour becoming an important part of their lives. The crafting of these narratives sheds light on how and why perceptions of exercise may change over time, and provides a greater appreciation of the cultural, social and personal resources that shape perceptions of exercise. Future studies and interventions may be designed with a greater awareness of the meaning persons with MS ascribe to exercise over the span of living with MS.

KEYWORDS:

• Narrative
• structural analysis
• exercise
• multiple sclerosis
• quality of life

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1. The previous study explored what persons with MS needed and wanted for exercise promotion through healthcare providers. That research reported that persons with MS wanted (1) information and knowledge on the benefits of exercise and exercise prescription, (2) materials to allow home and community exercise and (3) tools for initiating and maintaining exercise behaviour. Only the last author was involved in both studies as all other authors of the original paper have moved on to other institutions and are no longer part of this body of work.

Additional information

Funding

This work was supported by the National Multiple Sclerosis Society [000515602].

Notes on contributors

Emma V. Richardson

Emma V. Richardson is a postdoctoral fellow at the University of Alabama at Birmingham. She received her PhD from Loughborough University, UK in 2017, where she explored the journey of disabled individuals from gym client to gym instructor in her thesis entitled “Resisting Disablism in the Gym: A Narrative Exploration of the Journey from Disabled Client to Disabled Instructor. Still working within the field of disability studies, particularly focusing on inclusion within health and wellness settings, Dr. Richardson is currently part of the Exercise Neuroscience Research Lab at UAB which promotes health and wellness among persons with multiple sclerosis (MS) through exercise. She specializes in qualitative research and utilizes a broad range of data collection and analytical techniques in her work.

Elizabeth A. Barstow

Beth Barstow, Ph.D., OTR/L, SCLV, FAOTA, is an associate professor and director of the Graduate Certificate in Low Vision Rehabilitation program at the University of Alabama at Birmingham. The program received the 2017 Envision Oculus award for excellence in internationally impacting people who have low vision through education. She received the 2017 UAB Provost’s Transformative Online Course Award for exemplifying best practice and innovation in online education. In 2018, she was awarded the School of Health Profession’s award for Excellence in Teaching and the President’s Award for Excellence in Teaching. Dr. Barstow is co-editor of the text, Occupational Therapy Interventions for Adults with Low Vision. She achieved the American Occupational Therapy Association’s (AOTA) Specialty Certification in Low Vision Rehabilitation in 2007 and was named a Fellow of AOTA for her work on fostering professional competence in vision rehabilitation. Dr. Barstow’s research efforts focus on understanding the occupational limitations and needs of persons with vision impairment and related conditions, especially as it relates to health and wellness. 

Robert W. Motl

Professor Robert W. Motl is a professor of Physical Therapy at UAB. Prof Motl has systematically developed a research agenda that focuses on physical activity and its measurement, predictors, and consequences in persons with neurological diseases, particularly MS. Prof. Motl has generated a body of research on the validity of common physical activity measures in persons with MS. This has resulted in foundational research on quantifying differences in physical activity, particularly rates of moderate-to-vigorous physical activity, in persons with MS. These two lines of research have provided the basis for examining the outcomes of physical activity in MS, particularly beneficial adaptations in brain structure, cognition, depression, fatigue, walking disability, and quality of life. Prof. Motl has undertaken research on social-cognitive predictors of physical activity that has informed the design of behavioral interventions for increasing physical activity in MS.