Understanding leisure-time physical activity: Voices of people with MS who have moderate-to-severe disability and their family caregivers

Afolasade Fakolade, Julie Lamarre, Amy Latimer-Cheung, Trisha Parsons, Sarah A Morrow, Marcia Finlayson, Afolasade Fakolade, Julie Lamarre, Amy Latimer-Cheung, Trisha Parsons, Sarah A Morrow, Marcia Finlayson

Abstract

Background: Physical activity (PA) is beneficial for all people, yet people affected by multiple sclerosis (MS) find regular PA challenging. These people may include individuals with the disease who have moderate-to-severe disability and their family caregivers. For researchers and clinicians to effectively promote PA among caregiver/care-recipient dyads with moderate-to-severe MS, a comprehensive understanding of the shared PA experiences of these dyads would be beneficial.

Objective: We explored shared experiences of caregiver/care-recipient dyads affected by moderate-to-severe MS about PA and directions for intervention.

Methods: Six focus groups with 23 people with moderate-to-severe MS and 12 family caregivers were conducted. Data were analysed using a constant comparative approach.

Results: Three major themes emerged as follows: (i) PA is a continuum, (ii) cycle of disengagement and (iii) cycle of adjustment. The first theme captured the dyads understanding that PA falls along a continuum ranging from highly structured to unstructured activities. Cycle of disengagement captured the experiences of dyads engaging in little or no PA. These dyads perceived internal and external issues as drivers of the cycle of disengagement, while availability of supportive programmes and services or people helped the dyads to break out of the cycle. When the cycle of disengagement was broken, the dyads described moving towards the cycle of adjustment, where they were able to learn skills and take action to incorporate PA into daily routines.

Conclusion: This research highlights the need to adopt an integrative approach that acknowledges the caregiver/care-recipient dyad with moderate-to-severe MS as a focus for PA intervention.

Keywords: caregivers; moderate-to-severe disability; multiple sclerosis; physical activity.

© 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.

Figures

Figure 1
Figure 1
Flow chart of study recruitment and enrolment process
Figure 2
Figure 2
Graphic depiction of study themes and the relationship between themes

References

    1. Motl RW, McAuley E, Sandroff BM, Hubbard EA. Descriptive epidemiology of physical activity rates in multiple sclerosis. Acta Neurol Scand. 2015;131:422‐425.
    1. Kister I, Chamot E, Salter AR, Cutter GR, Bacon TE, Herbert J. Disability in multiple sclerosis a reference for patients and clinicians. Neurology. 2013;80:1018‐1024.
    1. Weinshenker BG. The natural history of multiple sclerosis. Neurol Clin. 1995;13:119‐146.
    1. Myhr KM. Diagnosis and treatment of multiple sclerosis. Acta Neurol Scand Suppl. 2008;188:12‐21.
    1. O'Hara L, De Souza L, Ide L. The nature of care giving in a community sample of people with multiple sclerosis. Disabil Rehabil. 2004;26:1401‐1410.
    1. Rivera‐Navarro J, Benito‐Leon J, Oreja‐Guevara C, et al. Burden and health‐related quality of life of Spanish caregivers of persons with multiple sclerosis. Mult scler (Houndmills, Basingstoke, England). 2009;15:1347‐1355.
    1. Corry M, While A. The needs of carers of people with multiple sclerosis: a literature review. Scand J Caring Sci. 2009;23:569‐588.
    1. McKeown LP, Porter‐Armstrong AP, Baxter GD. The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review. Clin Rehabil. 2003;17:234‐248.
    1. Carton H, Loos R, Pacolet J, Versieck K, Vlietinck R. A quantitative study of unpaid caregiving in multiple sclerosis. Mult Scler. 2000;6:274‐279.
    1. Murphy N, Confavreux C, Haas J, et al. Economic evaluation of multiple sclerosis in the UK Germany and France. Pharmacoeconomics. 1998;13:607‐622.
    1. Pakenham K. Couple coping and adjustment to multiple sclerosis in care receiver‐carer dyads. Fam Relat. 1998;47:269‐277.
    1. Quinn C, Dunbar SB, Clark PC, Strickland OL. Challenges and strategies of dyad research: cardiovascular examples. Appl Nurs Res. 2010;23:e15‐e20.
    1. Brush J, Mills K. I Care: A Handbook for Care Partners of People With Dementia. Bloomington, Indiana: BalboaPress; 2014.
    1. Rimmer JH, Marques AC. Physical activity for people with disabilities. Lancet. 2012;380:193‐195.
    1. Chodzko‐Zajko WJ. Exercise and physical activity for older adults. Kinesiol Rev. 2014;3:101‐106.
    1. Meneguci J, Sasaki JE, Santos A, Scatena LM, Damião R. Sitting time and quality of life in older adults: a population based study. J Phys Act Health. 2015;12:1513‐1519.
    1. Motl RW, McAuley E, Snook EM. Physical activity and multiple sclerosis: a meta‐analysis. Mult scler (Houndmills, Basingstoke, England). 2005;11:459‐463.
    1. Motl RW, McAuley E, Sandroff BM. Longitudinal change in physical activity and its correlates in relapsing‐remitting multiple sclerosis. Phys Ther. 2013;93:1037‐1048.
    1. O'Brien MT. Multiple sclerosis: stressors and coping strategies in spousal caregivers. J Community Health Nurs. 1993;10:123‐135.
    1. Shereman T, Rapport L, Hanks R, et al. Predictors of well‐being among significant others of persons with multiple sclerosis. Mult Scler. 2007;13:239‐249.
    1. Latimer‐Cheung AE, Pilutti LA, Hicks AL, et al. Effects of exercise training on fitness, mobility, fatigue, and health‐related quality of life among adults with multiple sclerosis: a systematic review to inform guideline development. Arch Phys Med Rehabil. 2013;94:1800‐1828. e1803.
    1. Cohen ET, Kietrys D, Fogerite SG, et al. A pilot study of feasibility and impact of an 8‐Week integrative yoga program in people with moderate multiple sclerosis‐related disability. Int J MS Care. 2017;19:30‐39.
    1. McAuley E, Motl RW, Morris KS, et al. Enhancing physical activity adherence and well‐being in multiple sclerosis: a randomised controlled trial. Mult scler (Houndmills, Basingstoke, England). 2007;13:652‐659.
    1. Motl RW, Dlugonski D, Wojcicki TR, McAuley E, Mohr DC. Internet intervention for increasing physical activity in persons with multiple sclerosis. Mult scler (Houndmills, Basingstoke, England). 2011;17:116‐128.
    1. Berg CA, Upchurch R. A developmental‐contextual model of couples coping with chronic illness across the adult life span. Psychol Bull. 2007;133:920.
    1. Kamen C, Heckler C, Janelsins MC, et al. A dyadic exercise intervention to reduce psychological distress among lesbian, gay, and heterosexual cancer survivors. LGBT Health. 2016;3:57‐64.
    1. Winters‐Stone KM, Lyons KS, Dobek J, et al. Benefits of partnered strength training for prostate cancer survivors and spouses: results from a randomized controlled trial of the exercising together project. J Cancer Surviv. 2015;10(1932‐2267 (Electronic)):1‐12.
    1. Prick A‐E, de Lange J, Twisk J, Pot AM. The effects of a multi‐component dyadic intervention on the psychological distress of family caregivers providing care to people with dementia: a randomized controlled trial. Int Psychogeriatr. 2015;27:2031‐2044.
    1. Prick A‐E, de Lange J, Scherder E, Twisk J, Pot AM. The effects of a multicomponent dyadic intervention on the mood, behavior, and physical health of people with dementia: a randomized controlled trial. Clin Interv Aging. 2016;11:383.
    1. Lyons KS, Winters‐Stone KM, Bennett JA, Beer TM. The effects of partnered exercise on physical intimacy in couples coping with prostate cancer. Health Psychol. 2016;35:509‐513.
    1. Dlugonski D, Motl RW, Mohr DC, Sandroff BM. Internet‐delivered behavioral intervention to increase physical activity in persons with multiple sclerosis: sustainability and secondary outcomes. Psychol Health Med. 2012;17:636.
    1. Pilutti LA, Dlugonski D, Sandroff BM, Klaren R, Motl RW. Randomized controlled trial of a behavioral intervention targeting symptoms and physical activity in multiple sclerosis. Mult Scler. 2014;20:594‐601.
    1. Kayes NM, McPherson KM, Taylor D, Schluter PJ, Kolt GS. Facilitators and barriers to engagement in physical activity for people with multiple sclerosis: a qualitative investigation. Disabil Rehabil. 2011;33:625‐642.
    1. Plow MA, Resnik L, Allen SM. Exploring physical activity behaviour of persons with multiple sclerosis: a qualitative pilot study. Disabil Rehabil. 2009;31:1652‐1665.
    1. Creswell JW. Research Design: Qualitative, Quantitative, and Mixed Methods Approaches. Thousand Oaks, California: Sage publications; 2013.
    1. Freeman K, O'Dell C, Meola C. Focus group methodology for patients, parents, and siblings. J Pediatr Oncol Nurs. 2001;18:276‐286.
    1. Duggleby W. What about focus group interaction data? Qual Health Res. 2005;15:832‐840.
    1. van Eyk H, Baum F. Evaluating health system change‐using focus groups and a developing discussion paper to compile the” voices from the field”. Qual Health Res. 2003;13:281‐286.
    1. Wilkinson S. Focus groups in health research exploring the meanings of health and illness. J Health Psychol. 1998;3:329‐348.
    1. Corbin JM, Strauss A. Grounded theory research: procedures, canons, and evaluative criteria. Qual Sociol. 1990;13:3‐21.
    1. Patton MQ. Qualitative Research and Evaluation Methods. Thousand Oaks, California: Sage; 2002.
    1. Kasser S. Exercising with multiple sclerosis: insights into meaning and motivation. Adapt Phys Activ Q. 2009;26(0736‐5829 (Print)):274‐289.
    1. Dlugonski D, Joyce RJ, Motl RW. Meanings, motivations, and strategies for engaging in physical activity among women with multiple sclerosis. Disabil Rehabil. 2012;34:2148‐2157.
    1. Borkoles E, Nicholls AR, Bell K, Butterly R, Polman RCJ. The lived experiences of people diagnosed with multiple sclerosis in relation to exercise. Psychol Health. 2008;23:427‐441.
    1. Elsworth C, Dawes H, Sackley C, et al. A study of perceived facilitators to physical activity in neurological conditions. Int J Ther Rehabil. 2009;16:17.
    1. Smits CHM, de Lange J, Dröes RM, Meiland F, Vernooij‐Dassen M, Pot AM. Effects of combined intervention programmes for people with dementia living at home and their caregivers: a systematic review. Int J Geriatr Psychiatry. 2007;22:1181‐1193.
    1. Martire LM, Schulz R, Helgeson VS, Small BJ, Saghafi EM. Review and meta‐analysis of couple‐oriented interventions for chronic illness. Ann Behav Med. 2010;40:325‐342.
    1. Sher T, Braun L, Domas A, Bellg A, Baucom DH, Houle TT. The partners for life program: a couples approach to cardiac risk reduction. Fam Process. 2014;53:131‐149.
    1. Weikert M, Dlugonski D, Balantrapu S, Motl RW. Most common types of physical activity self‐selected by people with multiple sclerosis. Int J MS care. 2011;13:16‐20.
    1. Motl RW. Benefits, safety, and prescription of exercise in persons with multiple sclerosis. Expert Rev Neurother. 2014;14:1429‐1436.
    1. Toomey E, Coote SB. Physical rehabilitation interventions in nonambulatory people with multiple sclerosis: a systematic review. Int J Rehabil Res. 2012;35:281‐291.
    1. Pilutti LA, Platta ME, Motl RW, Latimer‐Cheung AE. The safety of exercise training in multiple sclerosis: a systematic review. J Neurol Sci. 2014;343:3‐7.
    1. Tallner A, Waschbisch A, Wenny I, et al. Multiple sclerosis relapses are not associated with exercise. J Mult Scler. 2012;18:232‐235.
    1. Learmonth YC, Adamson BC, Balto JM, et al. Multiple sclerosis patients need and want information on exercise promotion from healthcare providers: a qualitative study. Health Expect. 2016;1‐10. .
    1. Learmonth YC, Rice IM, Ostler T, Rice LA, Motl RW. Perspectives on physical activity among people with multiple sclerosis who are wheelchair users: informing the design of future interventions. Int J MS Care. 2015;17:109‐119.
    1. Hale LA, Smith C, Mulligan H, Treharne GJ. “Tell me what you want, what you really really want…”: asking people with multiple sclerosis about enhancing their participation in physical activity. Disabil Rehabil. 2012;34:1887‐1893.
    1. Learmonth Y, Marshall‐McKenna R, Paul L, Mattison P, Miller L. A qualitative exploration of the impact of a 12‐week group exercise class for those moderately affected with multiple sclerosis. Disabil Rehabil. 2013;35:81‐88.
    1. Post B, van der Eijk M, Munneke M, Bloem BR. Multidisciplinary care for parkinson's disease: not if, but how! Practi Neurol. 2011;11:58‐61.
    1. Thompson JA, Cruickshank TM, Penailillo LE, et al. The effects of multidisciplinary rehabilitation in patients with early‐to‐middle‐stage huntington's disease: a pilot study. Eur J Neurol. 2013;20(1468‐1331 (Electronic)):1325‐1329.
    1. Hass CJ, Okun MS. Time for comprehensive care networks for parkinson's disease. Lancet Neurol. 2010;9:20‐22.
    1. Motl RW, Snook EM, McAuley E, Scott JA, Douglass ML. Correlates of physical activity among individuals with multiple sclerosis. Ann Behav Med. 2006;32:154‐161.
    1. Damush TM, Plue L, Bakas T, Schmid A, Williams LS. Barriers and facilitators to exercise among stroke survivors. Rehabil Nurs. 2007;32:253‐262.
    1. Ravenek MJ, Schneider MA. Social support for physical activity and perceptions of control in early Parkinson's disease. Disabil Rehabil. 2009;31:1925‐1936.
    1. Kerstin W, Gabriele B, Richard L. What promotes physical activity after spinal cord injury? an interview study from a patient perspective. Disabil Rehabil. 2006;28:481‐488.
    1. Cohen S, Gottlieb BH, Underwood LG. Social relationships and health: challenges for measurement and intervention. Adv Mind Body Med. 2001;17:129‐141.
    1. Prestwich A, Conner M, Lawton R, Bailey W, Litman J, Molyneaux V. Individual and collaborative implementation intentions and the promotion of breast self‐examination. Psychol Health. 2005;20:743‐760.
    1. Wing RR, Jeffery RW. Benefits of recruiting participants with friends and increasing social support for weight loss and maintenance. J Consult Clin Psychol. 1999;67:132.
    1. Prestwich A, Conner MT, Lawton RJ, Ward JK, Ayres K, McEachan RR. Randomized controlled trial of collaborative implementation intentions targeting working adults’ physical activity. Health Psychol. 2012;31:486.
    1. Coyne JC, Smith DA. Couples coping with a myocardial infarction: a contextual perspective on wives’ distress. J Pers Soc Psychol. 1991;61:404.
    1. Klaren RE, Sebastiao E, Chiu C‐Y, Kinnett‐Hopkins D, McAuley E, Motl RW. Levels and rates of physical activity in older adults with multiple sclerosis. Aging Dis. 2016;7:1‐7.
    1. Kidd PS, Parshall MB. Getting the focus and the group: enhancing analytical rigor in focus group research. Qual Health Res. 2000;10:293‐308.
    1. Morgan DL. The Focus Group Guidebook. Thousand Oaks, California: Sage; 1998.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe