Perceived barriers to and facilitators of behavioural change towards a more active lifestyle in people with neuromuscular diseases: a qualitative study
DOI:
https://doi.org/10.2340/jrm.v57.42577Keywords:
neuromuscular disorders, rehabilitation, qualitative research, healthy lifestyle, behavioural changeAbstract
Objective: To explore perceived barriers to and facilitators of behaviour change towards a more active lifestyle in people with neuromuscular diseases.
Design: A qualitative study.
Subjects: Nineteen subjects (63% females, age range 28–73 years), representing 4 different neuromuscular diseases.
Methods: Data from a randomized controlled trial were used. Subjects followed a physical activity programme including coaching sessions using motivational interviewing techniques. All sessions were audio-recorded, and thematic analyses were conducted on a random selection of 29 audio recordings, using the International Classification of Functioning, Disability and Health as a framework.
Results: Barriers and facilitators were identified in the following domains: body functions and structures (i.e., neuromusculoskeletal, sensory and mental functions), activities and participation (i.e., undertaking multiple tasks and complex interpersonal interactions), environmental factors (i.e., products and technology for personal use in daily living, design/construction of buildings for public and private use, financial assets, climate, natural events, support and relationships) and personal factors (i.e., satisfaction with life, attitude toward health and disease, attitude toward intervention, exercise habits and methodical skills).
Conclusion: Identified barriers and facilitators could guide healthcare professionals to facilitate the discussion of physical activity behaviour and to address them in a personalized way during neuromuscular rehabilitation treatment.
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References
Oorschot S, Brehm MA, Daams J, Nollet F, Voorn EL. Efficacy of aerobic exercise on aerobic capacity in slowly progressive neuromuscular diseases: a systematic review and meta-analysis. Ann Phys Rehabil Med 2023; 66: 101637. DOI: https://doi.org/10.1016/j.rehab.2022.101637
https://doi.org/10.1016/j.rehab.2022.101637 DOI: https://doi.org/10.1016/j.rehab.2022.101637
Stefanetti RJ, Blain A, Jimenez-Moreno C, Errington L, Ng YS, McFarland R, et al. Measuring the effects of exercise in neuromuscular disorders: a systematic review and meta-analyses. Wellcome Open Res 2020; 5: 84. DOI: https://doi.org/10.12688/wellcomeopenres.15825.1
https://doi.org/10.12688/wellcomeopenres.15825.1 DOI: https://doi.org/10.12688/wellcomeopenres.15825.1
Voet NB, van der Kooi EL, van Engelen BG, Geurts AC. Strength training and aerobic exercise training for muscle disease. Cochrane Database Syst Rev 2019; 12: CD003907. DOI: https://doi.org/10.1002/14651858.CD003907.pub5
https://doi.org/10.1002/14651858.CD003907.pub5 DOI: https://doi.org/10.1002/14651858.CD003907.pub5
Voorn EL, Lucia A, Vissing J, 281st ENMC workshop study group. 281st ENMC International Workshop: 2nd ENMC workshop on exercise training in muscle diseases; towards consensus-based recommendations on exercise prescription and outcome measures. Neuromuscul Disord 2025; 105318. DOI: https://doi.org/10.1016/j.nmd.2025.105318
https://doi.org/10.1016/j.nmd.2025.105318 DOI: https://doi.org/10.1016/j.nmd.2025.105318
Andries A, van Walsem MR, Frich JC. Self-reported physical activity in people with limb girdle muscular dystrophy and Charcot-Marie-Tooth disease in Norway. BMC Musculoskelet Disord 2020; 21: 1–9. DOI: https://doi.org/10.1186/s12891-020-03246-w
https://doi.org/10.1186/s12891-020-03246-w DOI: https://doi.org/10.1186/s12891-020-03246-w
Anens E, Emtner M, Hellström K. Exploratory study of physical activity in persons with Charcot-Marie-Tooth disease. Arch Phys Med Rehabil 2015; 96: 260–268. DOI: https://doi.org/10.1016/j.apmr.2014.09.013
https://doi.org/10.1016/j.apmr.2014.09.013 DOI: https://doi.org/10.1016/j.apmr.2014.09.013
Menotti F, Laudani L, Damiani A, Macaluso A. Amount and intensity of daily living activities in Charcot-Marie-Tooth 1A patients. Brain Behav 2014; 4: 14–20. DOI: https://doi.org/10.1002/brb3.187
https://doi.org/10.1002/brb3.187 DOI: https://doi.org/10.1002/brb3.187
Andersen LK, Vissing J. Habitual physical activity in patients with myasthenia gravis assessed by accelerometry and questionnaire. J Neuromuscul Dis 2022; 9: 161–169. DOI: https://doi.org/10.3233/JND-210693
https://doi.org/10.3233/JND-210693 DOI: https://doi.org/10.3233/JND-210693
Birnbaum S, Bachasson D, Sharshar T, Porcher R, Hogrel J-Y, Portero P. Free-living physical activity and sedentary behaviour in autoimmune myasthenia gravis: a cross-sectional study. J Neuromuscul Dis 2021; 8: 689–697. DOI: https://doi.org/10.3233/JND-210637
https://doi.org/10.3233/JND-210637 DOI: https://doi.org/10.3233/JND-210637
Knak KL, Sheikh AM, Witting N, Vissing J. Physical activity in myotonic dystrophy type 1. J Neurol 2020; 267: 1679–1686. DOI: https://doi.org/10.1007/s00415-020-09758-8
https://doi.org/10.1007/s00415-020-09758-8 DOI: https://doi.org/10.1007/s00415-020-09758-8
Winberg C, Flansbjer U-B, Carlsson G, Rimmer J, Lexell J. Physical activity in persons with late effects of polio: a descriptive study. Disabil Health J 2014; 7: 302–308. DOI: https://doi.org/10.1016/j.dhjo.2014.02.003
https://doi.org/10.1016/j.dhjo.2014.02.003 DOI: https://doi.org/10.1016/j.dhjo.2014.02.003
Aitkens S, Kilmer DD, Wright NC, McCrory MA. Metabolic syndrome in neuromuscular disease. Arch Phys Med Rehabil 2005; 86: 1030–1036. DOI: https://doi.org/10.1016/j.apmr.2004.09.012
https://doi.org/10.1016/j.apmr.2004.09.012 DOI: https://doi.org/10.1016/j.apmr.2004.09.012
Phillips M, Flemming N, Tsintzas K. An exploratory study of physical activity and perceived barriers to exercise in ambulant people with neuromuscular disease compared with unaffected controls. Clin Rehabil 2009; 23: 746-755. DOI: https://doi.org/10.1177/0269215509334838
https://doi.org/10.1177/0269215509334838 DOI: https://doi.org/10.1177/0269215509334838
McDonald CM. Physical activity, health impairments, and disability in neuromuscular disease. Am J Phys Med Rehabil 2002; 81: S108–S120. DOI: https://doi.org/10.1097/00002060-200211001-00012
https://doi.org/10.1097/00002060-200211001-00012 DOI: https://doi.org/10.1097/00002060-200211001-00012
Nierse CJ, Abma TA, Horemans AM, van Engelen BG. Research priorities of patients with neuromuscular disease. Disabil Rehabil 2013; 35: 405–412. DOI: https://doi.org/10.3109/09638288.2012.694964
https://doi.org/10.3109/09638288.2012.694964 DOI: https://doi.org/10.3109/09638288.2012.694964
Wallace A, Pietrusz A, Dewar E, Dudziec M, Jones K, Hennis P, et al. Community exercise is feasible for neuromuscular diseases and can improve aerobic capacity. Neurology 2019; 92: e1773–e1785. DOI: https://doi.org/10.1212/WNL.0000000000007265
https://doi.org/10.1212/WNL.0000000000007265 DOI: https://doi.org/10.1212/WNL.0000000000007265
Voet N, Bleijenberg G, Hendriks J, de Groot I, Padberg G, van Engelen B, et al. Both aerobic exercise and cognitive-behavioral therapy reduce chronic fatigue in FSHD: an RCT. Neurology 2014; 83: 1914–1922. DOI: https://doi.org/10.1212/WNL.0000000000001008
https://doi.org/10.1212/WNL.0000000000001008 DOI: https://doi.org/10.1212/WNL.0000000000001008
Becker H, Stuifbergen A. What makes it so hard? Barriers to health promotion experienced by people with multiple sclerosis and polio. Fam Commun Health 2004; 75–85. DOI: https://doi.org/10.1097/00003727-200401000-00008
https://doi.org/10.1097/00003727-200401000-00008 DOI: https://doi.org/10.1097/00003727-200401000-00008
Jones K, Hawke F, Newman J, Miller JA, Burns J, Jakovljevic DG, et al. Interventions for promoting physical activity in people with neuromuscular disease. Cochrane Database Syst Rev 2021; 5: CD013544. DOI: https://doi.org/10.1002/14651858.CD013544.pub2
https://doi.org/10.1002/14651858.CD013544.pub2 DOI: https://doi.org/10.1002/14651858.CD013544.pub2
Winberg C, Carlsson G, Brogårdh C, Lexell J. The perception of physical activity in ambulatory persons with late effects of polio: a qualitative study. J Aging Phys Activ 2017; 25: 65–72. DOI: https://doi.org/10.1123/japa.2015-0282
https://doi.org/10.1123/japa.2015-0282 DOI: https://doi.org/10.1123/japa.2015-0282
Oorschot S, Brehm MA, van Groenestijn AC, Koopman FS, Verhamme C, Eftimov F, et al. Efficacy of a physical activity programme combining individualized aerobic exercise and coaching to improve physical fitness in neuromuscular diseases (I’M FINE): study protocol of a randomized controlled trial. BMC Neurol 2020; 20: 1–10. DOI: https://doi.org/10.1186/s12883-020-01725-0
https://doi.org/10.1186/s12883-020-01725-0 DOI: https://doi.org/10.1186/s12883-020-01725-0
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19: 349–357. DOI: https://doi.org/10.1093/intqhc/mzm042
https://doi.org/10.1093/intqhc/mzm042 DOI: https://doi.org/10.1093/intqhc/mzm042
Miller WR, Rollnick S. Motivational interviewing: helping people change. New York: Guilford Press; 2012.
Castleberry A, Nolen A. Thematic analysis of qualitative research data: is it as easy as it sounds? Curr Pharm Teach Learn 2018; 10: 807–815. DOI: https://doi.org/10.1016/j.cptl.2018.03.019
https://doi.org/10.1016/j.cptl.2018.03.019 DOI: https://doi.org/10.1016/j.cptl.2018.03.019
Üstün TB, Chatterji S, Bickenbach J, Kostanjsek N, Schneider M. The International Classification of Functioning, Disability and Health: a new tool for understanding disability and health. Disabil Rehabil 2003; 25: 565–571. DOI: https://doi.org/10.1080/0963828031000137063
https://doi.org/10.1080/0963828031000137063 DOI: https://doi.org/10.1080/0963828031000137063
Grotkamp SL, Cibis WM, Nüchtern EA, von Mittelstaedt G, Seger WK. Personal factors in the international -classification of functioning, disability and health: prospective evidence. Aust J Rehabil Couns 2012; 18: 1–24. DOI: https://doi.org/10.1017/jrc.2012.4
https://doi.org/10.1017/jrc.2012.4 DOI: https://doi.org/10.1017/jrc.2012.4
Buscemi V, Boaz A, Dawes H, Jaki T, Jones F, Marsden J, et al. Exploring the issues that influence how people with rare neurological conditions engage in physical activity. Disabil Rehabil 2024; 46: 2789–2798. DOI: https://doi.org/10.1080/09638288.2023.2230128
https://doi.org/10.1080/09638288.2023.2230128 DOI: https://doi.org/10.1080/09638288.2023.2230128
Di Stefano V, Battaglia G, Giustino V, Gagliardo A, D’Aleo M, Giannini O, et al. Significant reduction of physical activity in patients with neuromuscular disease during COVID-19 pandemic: the long-term consequences of quarantine. J Neurol 2021; 268: 20–26. DOI: https://doi.org/10.1007/s00415-020-10064-6
https://doi.org/10.1007/s00415-020-10064-6 DOI: https://doi.org/10.1007/s00415-020-10064-6
Martin Ginis KA, Ma JK, Latimer-Cheung AE, Rimmer JH. A systematic review of review articles addressing factors related to physical activity participation among children and adults with physical disabilities. Health Psychol Rev 2016; 10: 478–494. DOI: https://doi.org/10.1080/17437199.2016.1198240
https://doi.org/10.1080/17437199.2016.1198240 DOI: https://doi.org/10.1080/17437199.2016.1198240
Ginis KAM, van der Ploeg HP, Foster C, Lai B, McBride CB, Ng K, et al. Participation of people living with disabilities in physical activity: a global perspective. Lancet 2021; 398: 443–455. DOI: https://doi.org/10.1016/S0140-6736(21)01164-8
https://doi.org/10.1016/S0140-6736(21)01164-8 DOI: https://doi.org/10.1016/S0140-6736(21)01164-8
Klein MG, Braitman LE, Costello R, Keenan MA, Esquenazi A. Actual and perceived activity levels in polio survivors and older controls: a longitudinal study. Arch Phys Med Rehabil 2008; 89: 297–303. DOI: https://doi.org/10.1016/j.apmr.2007.08.156
https://doi.org/10.1016/j.apmr.2007.08.156 DOI: https://doi.org/10.1016/j.apmr.2007.08.156
Ramdharry GM, Pollard AJ, Grant R, Dewar EL, Laurá M, Moore SA, et al. A study of physical activity comparing people with Charcot-Marie-Tooth disease to normal control subjects. Disabil Rehabil 2017; 39: 1753–1758. DOI: https://doi.org/10.1080/09638288.2016.1211180
https://doi.org/10.1080/09638288.2016.1211180 DOI: https://doi.org/10.1080/09638288.2016.1211180
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Copyright (c) 2025 Eric L. Voorn, Sander Oorschot, Roos Ritmeester, Lois de Zeeuw, Sandra de Morée, Fieke S. Koopman, Annerieke C. van Groenestijn, Judith G.M. Jelsma
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