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

References

• Adamson, B. C, M. D. Adamson, M. M. Littlefield, and R. W. Motl. 2018. “‘Move It or Lose It’: Perceptions of the Impact of Physical Activity on Multiple Sclerosis Symptoms, Relapse and Disability Identity.” Qualitative Research in Sport, Exercise and Health 10 (4): 457–475. doi:10.1080/2159676X.2017.1415221.
   Web of Science ®Google Scholar
• Atassi, N., A. Cook, C. M. Pineda, P. Yerramilli-Rao, D. Pulley, and M. Cudkowicz. 2011. “Depression in Amyotrophic Lateral Sclerosis.” Amyotrophic Lateral Sclerosis 12 (2): 109–112. doi:https://doi.org/10.3109/17482968.2010.536839.
   PubMed Web of Science ®Google Scholar
• Averill, A. J., E. J. Kasarskis, and S. C. Segerstrom. 2007. “Psychological Health in Patients with Amyotrophic Lateral Sclerosis.” Amyotrophic Lateral Sclerosis 8 (4): 243–254. doi:10.1080/17482960701374643.
   PubMed Web of Science ®Google Scholar
• Bandura, A. 1997. Self-Efficacy: The Exercise of Control. New York: Freeman.
   Google Scholar
• Braun, V., and V. Clarke. 2019. “Reflecting on Reflexive Thematic Analysis.” Qualitative Research in Sport, Exercise and Health 11 (4): 589–597. doi:10.1080/2159676X.2019.1628806.
   Web of Science ®Google Scholar
• Brooks, B. R. 1994. “El Escorial World Federation of Neurology Criteria for the Diagnosis of Amyotrophic Lateral Sclerosis. Subcommittee on Motor Neuron Diseases/amyotrophic Lateral Sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Escorial “Clinical Limits of Amyotrophic Lateral Sclerosis” Workshop Contributors.” Journal of the Neurological Sciences 124: 96–107. doi:10/1016/0022-510x(94)90191-0.
   PubMed Web of Science ®Google Scholar
• Burke, S. 2016. “Rethinking ‘Validity’and ‘Trustworthiness’ in Qualitative Inquiry: How Might We Judge the Quality of Qualitative Research in Sport and Exercise Sciences?” In Routledge Handbook of Qualitative Research in Sport and Exercise (pp. 330–340). London, UK: Routledge.
   Google Scholar
• Cairney, J., K. R. McGannon, and M. Atkinson. 2018. “Exercise is Medicine: Critical Considerations in the Qualitative Research Landscape.” Qualitative Research in Sport, Exercise and Health 10 (4): 391–399. doi:10.1080/2159676X.2018.1476010.
   Web of Science ®Google Scholar
• Caspersen, J. C., K. E. Powell, and G. M. Christenson. 1985. “Physical Activity, Exercise, and Physical Fitness: Definitions and Distinctions for Health-Related Research.” Public Health Reports 100 (2): 126–131.
   PubMed Web of Science ®Google Scholar
• Charon, R., and A. W. Frank. 1996. “The Wounded Storyteller: Body, Illness, and Ethics.” Contemporary Sociology 25 (4): 564. doi:10.2307/2077146.
   Web of Science ®Google Scholar
• Cheng, S., and L. Mao. 2016. “Physical Activity Continuum Throughout the Lifespan: Is Exercise Medicine or What?” Journal of Sport and Health Science 5 (2): 127–128. doi:10.1016/j.jshs.2016.03.005.
   PubMed Web of Science ®Google Scholar
• Chiò, A., G. Logroscino, B. J. Traynor, J. Collins, J. C. Simeone, L. A. Goldstein, and L. A. White. 2013. “Global Epidemiology of Amyotrophic Lateral Sclerosis: A Systematic Review of the Published Literature.” Neuroepidemiology 41 (2): 118–130. doi:10.1159/000351153.
   PubMed Web of Science ®Google Scholar
• Clarke, C. V., and B. C. Adamson. 2021. “A Syndemics Approach to Exercise is Medicine.” Health. doi:10.1177/13634593211021481.
   Web of Science ®Google Scholar
• Clawson, L. L., M. Cudkowicz, L. Krivickas, B. R. Brooks, M. Sanjak, P. Allred, N. Atassi, et al. 2018. ”A Randomized Controlled Trial of Resistance and Endurance Exercise in Amyotrophic Lateral Sclerosis.” Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration 19 (3–4): 250–258. doi:10.1080/21678421.2017.1404108.
   PubMed Web of Science ®Google Scholar
• Dal Bello-Haas, V., and J. M. Florence. 2013. ”Therapeutic Exercise for People with Amyotrophic Lateral Sclerosis or Motor Neuron Disease.” Cochrane Database of Systematic Reviews 5. CD005229. doi:10.1002/14651858.CD005229.pub3.
   PubMedGoogle Scholar
• Dalemans, R., D. T. Wade, W. J. van den Heuvel, and L. P. de Witte. 2009. “Facilitating the Participation of People with Aphasia in Research: A Description of Strategies.” Clinical Rehabilitation 23 (10): 948–959. doi:10.1177/0269215509337197.
   PubMed Web of Science ®Google Scholar
• Drory, V. E., E. Goltsman, J. Goldman Reznik, A. Mosek, and A. D. Korczyn. 2001. “The Value of Muscle Exercise in Patients with Amyotrophic Lateral Sclerosis.” Journal of the Neurological Sciences 191 (1–2): 133–137. doi:10.1016/S0022-510X(01)00610-4.
   PubMed Web of Science ®Google Scholar
• Elsworth, C., H. Dawes, C. Sackley, A. Soundy, K. Howells, D. Wade, D. Hilton-Jones, J. Freebody, and H. Izadi. 2013. “A Study of Perceived Facilitators to Physical Activity in Neurological Conditions.” International Journal of Therapy & Rehabilitation 16 (1): 17–24. doi:10.12968/ijtr.2009.16.1.37936.
   Google Scholar
• Erdem, N. S., K. Karaali, A. Ünal, F. Kızılay, C. Öğüş, and H. Uysal. 2016. “The Interaction Between Breathing and Swallowing in Amyotrophic Lateral Sclerosis.” Acta Neurologica Belgica 116: 549–556. doi:10.1007/s13760-016-0643-0.
   PubMed Web of Science ®Google Scholar
• Etikan, I. 2016. “Comparison of Convenience Sampling and Purposive Sampling.” American Journal of Theoretical and Applied Statistics 5 (1): 1–4. doi:10.11648/j.ajtas.20160501.11.
   Google Scholar
• Evans, M. B., C. H. Shirazipour, V. Allan, M. Zanhour, S. N. Sweet, K. A. Martin Ginis, and A. E. Latimer-Cheung. 2018. “Integrating Insights from the Parasport Community to Understand Optimal Experiences: The Quality Parasport Participation Framework.” Psychology of Sport and Exercise 37: 79–90. doi:10.1016/j.psychsport.2018.04.009.
   Web of Science ®Google Scholar
• Faulkner, G., L. Yun, M. S. Tremblay, and J. C. Spence. 2018. “Exploring the Impact of the ‘New’ ParticipAction: Overview and Introduction of the Special Issue.” Health Promotion and Chronic Disease Prevention in Canada 38 (4): 153–161. doi:10.24095/hpcdp.38.4.01.
   PubMed Web of Science ®Google Scholar
• Fortier, M., E. Guérin, and M. L. Segar. 2016. “Words Matter: Reframing Exercise is Medicine for the General Population to Optimize Motivation and Create Sustainable Behaviour Change.” Applied Physiology, Nutrition and Metabolism 41 (11): 1212–1215. doi:10.1139/apnm-2016-0125.
   PubMed Web of Science ®Google Scholar
• Frank, A. W. 1996. “From Dysappearance to Hyperappearance: Sliding Boundaries of Illness and Bodies.” Theory & Psychology 6 (4): 733–760. doi:10.1177/0959354396064010.
   Google Scholar
• Gainforth, H. L., F. Hoekstra, R. McKay, C. B. McBride, S. N. Sweet, K. A. Martin Ginis, K. Anderson, et al. 2021. ”Integrated Knowledge Translation Guiding Principles for Conducting and Disseminating Spinal Cord Injury Research in Partnership.” Archives of Physical Medicine and Rehabilitation 102 (4): 656–663. doi:10.1016/j.apmr.2020.09.393.
   PubMed Web of Science ®Google Scholar
• Gautier, G., A. Verschueren, A. Monnier, S. Attarian, E. Salort-Campana, and J. Pouge. 2010. “ALS with Respiratory Onset: Clinical Features and Effects of Non-Invasive Ventilation on the Prognosis.” Amyotrophic Lateral Sclerosis 11 (4): 379–382. doi:10.3109/17482960903426543.
   PubMed Web of Science ®Google Scholar
• Gibbons, Z. C., A. Richardson, D. Neary, and J. S. Snowden. 2008. “Behaviour in Amyotrophic Lateral Sclerosis.” Amyotrophic Lateral Sclerosis 9: 67–74. doi:10.1080/17482960701642437.
   PubMed Web of Science ®Google Scholar
• Girardi, A., S. E. MacPherson, and S. Abrahams. 2011. “Deficits in Emotional and Social Cognition in Amyotrophic Lateral Sclerosis.” Neuropsychology 25 (1): 53–65. doi:10.1037/a0020357.
   PubMed Web of Science ®Google Scholar
• Haagsma, J. A., N. Graetz, I. Bolliger, M. Naghavi, H. Higashi, E. C. Mullany, S. F. Abera, et al. 2016. ”The Global Burden of Injury: Incidence, Mortality, Disability-Adjusted Life Years and Time Trends from the Global Burden of Disease Study 2013.” Injury Prevention 22 (1): 3–18. doi:10.1136/injuryprev-2015-041616.
   PubMed Web of Science ®Google Scholar
• Hagger, M. S., N. Chatzisarantis, and S. J Biddle. 2001. “The Influence of Self-Efficacy and Past Behaviour on the Physical Activity Intentions of Young People.” Journal of Sports Sciences 19 (9): 711–725. doi:10.1080/02640410152475847.
   PubMed Web of Science ®Google Scholar
• Hecht, M., T. Hillemacher, E. Gräsel, S. Tigges, M. Winterholler, D. Heuss, M. J. Hilz, and B. Neundörfer. 2002. “Subjective Experience and Coping in ALS.” Amyotrophic Lateral Sclerosis and Other Motor Neuron Disorders 3 (4): 225–231. doi:10.1080/146608202760839009.
   PubMed Web of Science ®Google Scholar
• Humphreys, B. R., L. McLeod, and J. E. Ruseski. 2014. “Physical Activity and Health Outcomes: Evidence from Canada.” Health Economics (United Kingdom) 23 (1): 33–54. doi:10.1002/hec.2900.
   PubMed Web of Science ®Google Scholar
• Kiernan, M. C., S. Vucic, B. C. Cheah, M. R. Turner, A. Eisen, O. Hardiman, J. R. Burrell, and M. C. Zoing. 2011. “Amyotrophic Lateral Sclerosis.” The Lancet 377 (9769): 942–955. doi:10.1016/S0140-6736(10)61156-7.
   PubMed Web of Science ®Google Scholar
• Kühnlein, P., H. J. Gdynia, A. D. Sperfeld, B. Lindner-Pfleghar, A. C. Ludolph, M. Prosiegel, and A. Riecker. 2008. “Diagnosis and Treatment of Bulbar Symptoms in Amyotrophic Lateral Sclerosis.” Nature Clinical Practice Neurology 4 (7): 336–374. doi:10.1038/ncpneuro0853.
   Google Scholar
• Levitt, H. M., S. L. Motulsky, F. J. Wertz, S. L. Morrow, and J. G. Ponterotto. 2017. “Recommendations for Designing and Reviewing Qualitative Research in Psychology: Promoting Methodological Integrity.” Qualitative Psychology 4 (1): 2–22. doi:10.1037/qup0000082.
   Google Scholar
• Lobelo, F., M. Stoutenberg, and A. Hutber. 2014. “The Exercise is Medicine Global Health Initiative: A 2014 Update.” British Journal of Sports Medicine 48 (22): 1583. doi:10.1136/bjsports-2013-093080.
   Web of Science ®Google Scholar
• Longinetti, E., and F. Fang. 2019. “Epidemiology of Amyotrophic Lateral Sclerosis: An Update of Recent Literature.” Current Opinion in Neurology 32 (5): 771–776. doi:10.1097/WCO.0000000000000730.
   PubMed Web of Science ®Google Scholar
• Lulé, D., S. Pauli, E. Altintas, U. Singer, T. Merk, I. Uttner, N. Birbaumer, and A. C. Ludolph. 2012. “Emotional Adjustment in Amyotrophic Lateral Sclerosis (ALS).” Journal of Neurology 259: 334–341. doi:10.1007/s00415-011-6191-x.
   PubMed Web of Science ®Google Scholar
• Lunetta, C., A. Lizio, V. A. Sansone, N. M. Cellotto, E. Maestri, M. Bettinelli, V. Gatti, M. G. Melazzini, G. Meola, and M. Corbo. 2016. “Strictly Monitored Exercise Programs Reduce Motor Deterioration in ALS: Preliminary Results of a Randomized Controlled Trial.” Journal of Neurology 263 (1): 52–60. doi:10.1007/s00415-015-7924-z.
   PubMed Web of Science ®Google Scholar
• Martin Ginis, K. A., J. K. Ma, A. E. Latimer-Cheung, and J. H. Rimmer. 2016. “A Systematic Review of Review Articles Addressing Factors Related to Physical Activity Participation Among Children and Adults with Physical Disabilities.” Health Psychology Review 10 (4): 478–494. doi:10.1080/17437199.2016.1198240.
   PubMed Web of Science ®Google Scholar
• Miller, A., H. Pratt, and R. B. Schiffer. 2011. “Pseudobulbar Affect: The Spectrum of Clinical Presentations, Etiologies and Treatments.” Expert Review of Neurotherapeutics 11 (7): 1077–1088. doi:10.1586/ern.11.68.
   PubMed Web of Science ®Google Scholar
• Mioshi, E., P. Lillo, M. Kiernan, and J. Hodges. 2012. “Activities of Daily Living in Motor Neuron Disease: Role of Behavioural and Motor Changes.” Journal of Clinical Neuroscience 19 (4): 552–556. doi:10.1016/j.jocn.2011.07.042.
   PubMed Web of Science ®Google Scholar
• Morélot-Panzini, C., T. Perez, K. Sedkaoui, E. de Bock, B. Aguilaniu, P. Devillier, C. Pignier, B. Arnould, G. Bruneteau, and T. Similowski. 2018. “The Multidimensional Nature of Dyspnoea in Amyotrophic Lateral Sclerosis Patients with Chronic Respiratory Failure: Air Hunger, Anxiety and Fear.” Respiratory Medicine 145: 1–7. doi:10.1016/j.rmed.2018.10.010.
   PubMed Web of Science ®Google Scholar
• Natow, R. S. 2020. “The Use of Triangulation in Qualitative Studies Employing Elite Interviews.” Qualitative Research 20 (2): 160–173. doi:10.1177/1468794119830077.
   Web of Science ®Google Scholar
• Oberstadt, M., P. Esser, J. Classen, and A. Mehnert. 2018. “Alleviation of Psychological Distress and the Improvement of Quality of Life in Patients with Amyotrophic Lateral Sclerosis: Adaptation of a Short-Term Psychotherapeutic Intervention.” Frontiers in Neurology 9. doi:10.3389/fneur.2018.00231.
   PubMed Web of Science ®Google Scholar
• Orsega-Smith, E. M., L. L. Payne, A. J. Mowen, C. Hua Ho, and G. C. Godbey. 2007. “The Role of Social Support and Self-Efficacy in Shaping the Leisure Time Physical Activity of Older Adults.” Journal of Leisure Research 39 (4): 705–727. doi:10.1080/00222216.2007.11950129.
   Web of Science ®Google Scholar
• Pagnini, F. 2013. “Psychological Wellbeing and Quality of Life in Amyotrophic Lateral Sclerosis: A Review.” International Journal of Psychology 48 (3): 194–205. doi:10.1080/00207594.2012.691977.
   PubMed Web of Science ®Google Scholar
• Pedersen, B. K., and B. Saltin. 2006. “Evidence for Prescribing Exercise as Therapy in Chronic Disease.” Scandinavian Journal of Medicine & Science in Sports 25: 1–72. doi:10.1111/j.1600-0838.2006.00520.x.
   Google Scholar
• Pinto, S., and M. de Carvalho. 2014. “Breathing New Life into Treatment Advances for Respiratory Failure in Amyotrophic Lateral Sclerosis Patients.” Neurodegenerative Disease Management 4 (1): 83–104. doi:10.2217/nmt.13.74.
   PubMedGoogle Scholar
• Plahutaa, J. M., B. J. McCulloch, E. J. Kasarskis, M. A. Ross, R. A. Walter, and E. R. McDonald. 2002. “Amyotrophic Lateral Sclerosis and Hopelessness: Psychosocial Factors.” Social Science & Medicine 55 (12): 2131–2140. doi:https://doi.org/10.1016/S0277-9536(01)00356-2.
   PubMed Web of Science ®Google Scholar
• Richardson, E. V., E. A. Barstow, and R. W. Motl. 2019. “A Narrative Exploration of the Evolving Perception of Exercise Among People with Multiple Sclerosis.” Qualitative Research in Sport, Exercise and Health 11 (1): 119–137. doi:10.1080/2159676X.2018.1509369.
   Web of Science ®Google Scholar
• Rimmer, J. H. 2012. “Getting Beyond the Plateau: Bridging the Gap Between Rehabilitation and Community-Based Exercise.” PM and R 4 (11): 857–861. doi:10.1016/j.pmrj.2012.08.008.
   PubMedGoogle Scholar
• Sallis, R. E. 2009. “Exercise is Medicine and Physicians Need to Prescribe It!” British Journal of Sports Medicine 43 (1): 3–4. doi:http://dx.doi.org/10.1136/bjsm.2008.054825.
   PubMed Web of Science ®Google Scholar
• Sallis, R. E. 2015. “Exercise is Medicine: A Call to Action for Physicians to Assess and Prescribe Exercise.” The Physician and Sportsmedicine 43 (1): 22–26. doi:10.1080/00913847.2015.1001938.
   PubMed Web of Science ®Google Scholar
• Sawula, L. 2017. Negotiating a Progress Paradox: The Value of Exercise for People Living with Amyotrophic Lateral Sclerosis. Kingston, Ontario: Queen’s University. https://qspace.library.queensu.ca/handle/1974/22646
   Google Scholar
• Schwarzer, R., S. Lippke, and A. Luszczynska. 2011. “Mechanisms of Health Behavior Change in Persons with Chronic Illness or Disability: The Health Action Process Approach (HAPA).” Rehabilitation Psychology 56 (3): 161–170. doi:10.1037/a0024509.
   PubMed Web of Science ®Google Scholar
• Shirazipour, C. H., M. B. Evans, N. Caddick, B. Smith, A. B. Aiken, K. A. Martin Ginis, and A. E. Latimer-Cheung. 2017. “Quality Participation Experiences in the Physical Activity Domain: Perspectives of Veterans with a Physical Disability.” Psychology of Sport and Exercise 29 (March): 40–50. doi:10.1016/j.psychsport.2016.11.007.
   Google Scholar
• Shirazipour, C. H., M. B. Evans, J. Leo, A. Lithopoulos, K. A. Martin Ginis, and A. E. Latimer-Cheung. 2020. “Program Conditions That Foster Quality Physical Activity Participation Experiences for People with a Physical Disability: A Systematic Review.” Disability and Rehabilitation 42 (2): 147–155. doi:10.1080/09638288.2018.1494215.
   PubMed Web of Science ®Google Scholar
• Simmons, Z., B. A. Bremer, R. A. Robbins, S. M. Walsh, and S. Fischer. 2000. “Quality of Life in ALS Depends on Factors Other Than Strength and Physical Function.” Neurology 55 (3): 388–392. doi:10.1212/WNL.55.3.388.
   PubMed Web of Science ®Google Scholar
• Sivaramakrishnan, A., and S. Madhavan. 2019. “Recumbent Stepping Aerobic Exercise in Amyotrophic Lateral Sclerosis: A Pilot Study.” Neurological Sciences 40 (5): 971–978. doi:10.1007/s10072-019-03736-3.
   PubMed Web of Science ®Google Scholar
• Smith, B., and K. R. McGannon. 2018. “Developing Rigor in Qualitative Research: Problems and Opportunities Within Sport and Exercise Psychology.” International Review of Sport and Exercise Psychology 11 (1): 101–121. doi:10.1080/1750984X.2017.1317357.
   Web of Science ®Google Scholar
• Soofi, A. Y., V. Dal Bello-Haas, M. E. Kho, and L. Letts. 2018. “The Impact of Rehabilitative Interventions on Quality of Life: A Qualitative Evidence Synthesis of Personal Experiences of Individuals with Amyotrophic Lateral Sclerosis.” Quality of Life Research 27 (4): 845–856. doi:10.1007/s11136-017-1754-7.
   PubMed Web of Science ®Google Scholar
• Sparkes, A. C., and B. Smith. 2011. “Inhabiting Different Bodies Over Time: Narrative and Pedagogical Challenges.” Sport, Education and Society 16 (3): 357–370. doi:10.1080/13573322.2011.565967.
   Web of Science ®Google Scholar
• Sparkes, A. C., and B. Smith. 2013. Qualitative Research Methods in Sport, Exercise and Health: From Process to Product. 1st ed. Routledge. doi:https://doi.org/10.4324/9780203852187.
   Google Scholar
• Talbot, K. 2009. “Motor Neuron Disease: The Bare Essentials.” Practical Neurology 9 (5): 303–309. doi:10.1136/jnnp.2009.188151.
   PubMedGoogle Scholar
• Tomasone, J. R, K. E. Man, J. D. Sartor, K. E. Andrusko, K. A. Martin Ginis, and A. E. Latimer-Cheung. 2019. “‘On-The-Ground’ Strategy Matrix for Fostering Quality Participation Among Persons with Disabilities in Community-Based Exercise Programs.” Journal of Exercise, Movement, and Sport 51 (1): 257.
   Google Scholar
• Tracy, S. 2013. “Qualitative Research Methods: Collecting Evidence, Crafting Analysis, Communicating Impact.” Revija Za Sociologiju 43 (1): 99–101. doi:10.5613/rzs.43.1.6.
   Google Scholar
• Wijesekera, L. C., and P. N. Leigh. 2009. “Amyotrophic Lateral Sclerosis.” Orphanet Journal of Rare Diseases 4: 3. doi:10.1186/1750-1172-4-3.
   PubMed Web of Science ®Google Scholar
• Williams, T. L., E. R. Hunt, A. Papathomas, and B. Smith. 2018. “Exercise is Medicine? Most of the Time for Most; but Not Always for All.” Qualitative Research in Sport, Exercise and Health 10 (4): 441–456. doi:10.1080/2159676X.2017.1405363.
   Web of Science ®Google Scholar
• Wolfson, C., S. Kilborn, M. Oskoui, and A. Genge. 2009. “Incidence and Prevalence of Amyotrophic Lateral Sclerosis in Canada: A Systematic Review of the Literature.” Neuroepidemiology 33 (2): 79–88. doi:10.1159/000222089.
   PubMed Web of Science ®Google Scholar