Perceptions and experiences of exercise participation among persons with amyotrophic lateral sclerosis: A qualitative study

ABSTRACT

Our work sought to understand perceptions and experiences of exercise participation from the perspectives of persons living with amyotrophic lateral sclerosis (ALS). Data were collected through semi-structured interviews with seven participants with ALS. Using an interpretivist approach, we engaged in reflexive thematic analysis. Two overarching themes were identified: 1) negotiating exercise participation is complex and 2) the environmental conditions influencing access to exercise. Within the first overarching theme, three key subthemes were found: i) the psycho-emotional experience of ALS, ii) reconceptualising exercise as medicine, and iii) antecedents to exercise participation. Further, three additional subthemes arose within the overarching theme of environmental conditions influencing access to exercise: i) location and access matter, ii) the multifaceted nature of care, and iii) aspects of quality exercise delivery. Findings offer novel insights on the complexity of navigating exercise participation for persons with ALS. Although exercise may be beneficial for individuals with ALS, healthcare professionals, researchers, and policymakers need to consider adopting a cautious and individualised approach when contemplating exercise participation for persons with ALS.

KEYWORDS:

• ALS
• exercise is medicine
• interpretivist
• interviews
• qualitative research

Acknowledgements

We would like to thank the participants and their caregivers for the time spent and experiences shared through participating in this research. We sincerely thank the two anonymous reviewers for their constructive feedback to improve the manuscript.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Notes on contributors

Kristiann E. Man

Kristiann E. Man, MSc, completed her MSc in exercise psychology from the School of Kinesiology and Health Studies at Queen's University. She has expertise in qualitative methods and promoting physical activity participation among persons with physical disabilities.

Laura Sawula, MScPT, completed a research-based MSc in exercise physiology from the School of Kinesiology and Health Studies at Queen's University prior to completing her physiotherapy training.

Brendon J. Gurd, PhD, is a Professor in the School of Kinesiology and Health Studies at Queen’s University. He has expertise in exercise physiology, with an interest in exploring how different intensities and different types of exercise improve mitochondrial function in states of health and disease.

Sean Taylor, MD, MSc, FRCPC, is as Assistant Professor of Neurology in the Faculty of Medicine at Dalhousie University in Halifax, Nova Scotia.

Matti D. Allen, MD, PhD, is a resident physician in Physical Medicine and Rehabilitation and Adjunct Assistant Professor at Queen’s University. He has an interest in optimizing care for persons with neuromuscular disease.

Jennifer R. Tomasone, PhD, is an Associate Professor in the School of Kinesiology and Health Studies at Queen’s University. Her research aims to optimize exercise participation and knowledge translation for persons with disabilities.