Participation in social and leisure activities while re-constructing the self: understanding strategies used by stroke survivors from a long-term perspective

References

• Feigin VL, Krishnamurthi RV, Parmar P, et al. Update on the global burden of ischemic and hemorrhagic stroke in 1990–2013: the GBD 2013 study. Neuroepidemiology. 2015;45(3):161–176.
   PubMed Web of Science ®Google Scholar
• Adamson J, Beswick A, Ebrahim S. Is stroke the most common cause of disability? J Stroke Cerebrovasc Dis. 2004;13(4):171–177.
   PubMedGoogle Scholar
• Wolfe C, Crichton S, Heuschmann P, et al. Estimates of outcomes up to ten years after stroke: analysis from the prospective South London stroke register. PLoS Med. 2011;8(5):e1001033.
   PubMed Web of Science ®Google Scholar
• Hole E, Stubbs B, Roskell C, et al. The patient’s experience of the psychosocial process that influences identity following stroke rehabilitation: a metaethnography. ScientificWorldJournal. 2014;2014:349151.
   PubMedGoogle Scholar
• Salter K, Hellings C, Foley N, et al. The experience of living with stroke: a qualitative meta-synthesis. J Rehabil Med. 2008;40(8):595–602.
   PubMed Web of Science ®Google Scholar
• Northcott S, Moss B, Harrison K, et al. A systematic review of the impact of stroke on social support and social networks: associated factors and patterns of change. Clin Rehabil. 2016;30(8):811–831.
   PubMed Web of Science ®Google Scholar
• Woodman P, Riazi A, Pereira C, et al. Social participation post stroke: a meta-ethnographic review of the experiences and views of community-dwelling stroke survivors. Disabil Rehabil. 2014;36(24):2031–2043.
   PubMed Web of Science ®Google Scholar
• Sveen U, Thommessen B, Bautz-Holter E, et al. Well-being and instrumental activities of daily living after stroke. Clin Rehabil. 2004;18(3):267–274.
   PubMed Web of Science ®Google Scholar
• Boosman H, Schepers VP, Post MW, et al. Social activity contributes independently to life satisfaction three years post stroke. Clin Rehabil. 2011;25(5):460–467.
   PubMed Web of Science ®Google Scholar
• Tse T, Douglas J, Lentin P, et al. Reduction in retained activity participation is associated with depressive symptoms 3 months after mild stroke: An observational cohort study. J Rehabil Med. 2017;49(2):120–127.
   PubMed Web of Science ®Google Scholar
• Venna V, McCullough L. Role of social factors on cell death, cerebral plasticity and recovery after stroke. Metab Brain Dis. 2015;30(2):497–506.
   PubMed Web of Science ®Google Scholar
• Otto CM. Heartbeat: social isolation is associated with increased mortality after acute myocardial infarction or stroke. Heart. 2018;104(18):1471–1473.
   PubMed Web of Science ®Google Scholar
• Son JS, Janke MC. Contributions of leisure-based selective optimization with compensation and leisure activity expenditure to the health of adults with arthritis. J Leis Res. 2015;47(1):34–57.
   Web of Science ®Google Scholar
• Chang PJ, Wray L, Lin Y. Social relationships, leisure activity, and health in older adults. Health Psychol. 2014;33(6):516–523.
   PubMed Web of Science ®Google Scholar
• Teasdale TW, Engberg AW. Psychosocial consequences of stroke: a long-term population-based follow-up. Brain Inj. 2005;19(12):1049–1058.
   PubMed Web of Science ®Google Scholar
• Jansen HE, Schepers VP, Visser-Meily JM, et al. Social activity one and three years post-stroke. J Rehabil Med. 2012;44(1):47–50.
   PubMed Web of Science ®Google Scholar
• Norlander A, Jönsson AC, Ståhl A, et al. Activity among long-term stroke survivors. A study based on an ICF-oriented analysis of two established ADL and social activity instruments. Disabil Rehabil. 2016;38(20):2028–2037.
   PubMed Web of Science ®Google Scholar
• Singam A, Ytterberg C, Tham K, et al. Participation in complex and social everyday activities six years after stroke: predictors for return to pre-stroke level. PLoS One. 2015;10(12):e0144344.
   PubMed Web of Science ®Google Scholar
• Norlander A, Carlstedt E, Jönsson AC, et al. Long-term predictors of social and leisure activity 10 years after stroke. PLoS One. 2016;11(2):e0149395.
   PubMed Web of Science ®Google Scholar
• Norlander A, Iwarsson S, Jönsson AC, et al. Living and ageing with stroke: an exploration of conditions influencing participation in social and leisure activities over 15 years. Brain Inj. 2018;32(7):858–866.
   PubMed Web of Science ®Google Scholar
• Walsh ME, Galvin R, Loughnane C, et al. Factors associated with community reintegration in the first year after stroke: a qualitative meta-synthesis. Disabil Rehabil. 2015;37(18):1599–1608.
   PubMed Web of Science ®Google Scholar
• Williams S, Murray C. The lived experience of older adults’ occupational adaptation following a stroke. Aust Occup Ther J. 2013;60(1):39–47.
   PubMed Web of Science ®Google Scholar
• Alaszewski A, Alaszewski H, Potter J. The bereavement model, stroke and rehabilitation: a critical analysis of the use of a psychological model in professional practice. Disabil Rehabil. 2004;26(18):1067–1078.
   PubMed Web of Science ®Google Scholar
• Blalock SJ, DeVellis BM, Holt K, et al. Coping with rheumatoid arthritis: is one problem the same as another? Health Educ Q. 1993;20(1):119–132.
   PubMedGoogle Scholar
• Audulv A, Packer T, Hutchinson S, et al. Coping, adapting or self-managing - what is the difference? A concept review based on the neurological literature. J Adv Nurs. 2016;72(11):2629–2643.
   PubMed Web of Science ®Google Scholar
• Corbin JM, Strauss AL. Basics of qualitative research: techniques and procedures for developing grounded theory. 4th ed. Los Angeles: SAGE Publications; 2015.
   Google Scholar
• Hallström B, Jönsson AC, Nerbrand C, et al. Lund Stroke Register: hospitalization pattern and yield of different screening methods for first-ever stroke. Acta Neurol Scand. 2007;115(1):49–54.
   PubMed Web of Science ®Google Scholar
• Patton MQ. Purposeful sampling and case selection: overview of strategies and options. In: Patton MQ, editor. Qualitative research & evaluation methods: integrating theory and practice. 4th ed. Thousand Oaks (CA): SAGE Publications; 2015. p. 264–272.
   Google Scholar
• Wityk R, Pessin M, Kaplan R, et al. Serial assessment of acute stroke using the NIH Stroke Scale. Stroke. 1994;25(2):362–365.
   PubMed Web of Science ®Google Scholar
• Folstein MF, Folstein SE, McHugh PR. “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12(3):189–198.
   PubMed Web of Science ®Google Scholar
• van Swieten JC, Koudstaal PJ, Visser MC, et al. Interobserver agreement for the assessment of handicap in stroke patients. Stroke. 1988;19(5):604–607.
   PubMed Web of Science ®Google Scholar
• Bazeley P, Jackson K. Qualitative data analysis with NVivo. 2nd ed. London: SAGE Publications; 2013.
   Google Scholar
• Charmaz K. Constructing grounded theory. 2nd ed. Thousand Oaks (CA): SAGE Publications; 2014.
   Google Scholar
• Häggstrom A, Lund ML. The complexity of participation in daily life: a qualitative study of the experiences of persons with acquired brain injury. J Rehabil Med. 2008;40(2):89–95.
   PubMed Web of Science ®Google Scholar
• Antonovsky A. Health, stress, and coping. San Francisco (CA): Jossey-Bass; 1979.
   Google Scholar
• Schnyder U, Buchi S, Morgeli H, et al. Sense of coherence - a mediator between disability and handicap? Psychother Psychosom. 1999;68(2):102–110.
   PubMed Web of Science ®Google Scholar
• Wallenbert I, Jonsson H. Waiting to get better: a dilemma regarding habits in daily occupations after stroke. Am J Occup Ther. 2005;59(2):218–224.
   PubMed Web of Science ®Google Scholar
• Ellis-Hill C, Payne S, Ward C. Using stroke to explore the life thread model: an alternative approach to understanding rehabilitation following an acquired disability. Disabil Rehabil. 2008;30(2):150–159.
   PubMed Web of Science ®Google Scholar
• Charmaz K. The self as habit: the reconstruction of self in chronic illness. OTJR Occup Participation Health. 2002;22:31–41.
   Web of Science ®Google Scholar
• Arntzen C, Borg T, Hamran T. Long-term recovery trajectory after stroke: an ongoing negotiation between body, participation and self. Disabil Rehabil. 2015;37(18):1626–1634.
   PubMed Web of Science ®Google Scholar
• Studer B, Knecht S. A benefit-cost framework of motivation for a specific activity. Prog Brain Res. 2016;229:25–47.
   PubMed Web of Science ®Google Scholar
• Erlandsson LK, Eklund M, Persson D. Occupational value and relationships to meaning and health: elaborations of the ValMO-model. Scand J Occup Ther. 2011;18(1):72–80.
   PubMed Web of Science ®Google Scholar
• Finkel D, Andel R, Pedersen NL. Gender differences in longitudinal trajectories of change in physical, social, and cognitive/sedentary leisure activities. J Gerontol B Psychol Sci Soc Sci. 2018; 73(8):1491–1500.
   PubMed Web of Science ®Google Scholar
• Baltes PB, Baltes BM. Psychological perspectivers on successful aging: the model of selective optimization with compensation. In: Baltes PB, Baltes BM, editor. Successful aging: perspectives from the behavioural sciences. Cambridge: Cambridge University Press; 1990. p. 1–34.
   Google Scholar
• Agahi N, Ahacic K, Parker MG. Continuity of leisure participation from middle age to old age. J Gerontol B Psychol Sci Soc Sci. 2006;61(6):340–346.
   PubMed Web of Science ®Google Scholar
• Desrosiers J, Bourbonnais D, Noreau L, et al. Participation after stroke compared to normal aging. J Rehabil Med. 2005;37(6):353–357.
   PubMed Web of Science ®Google Scholar
• Skolarus LE, Burke JF, Brown DL, et al. Understanding stroke survivorship: expanding the concept of poststroke disability. Stroke. 2014;45(1):224–230.
   PubMed Web of Science ®Google Scholar
• de Graaf JA, van Mierlo ML, Post MWM, et al. Long-term restrictions in participation in stroke survivors under and over 70 years of age. Disabil Rehabil. 2018;40(6):637–645.
   PubMed Web of Science ®Google Scholar
• Engel-Yeger B, Tse T, Josman N, et al. Scoping review: the trajectory of recovery of participation outcomes following stroke. Behav Neurol. 2018; 2018:5472018–5472022.
   PubMed Web of Science ®Google Scholar
• Erikson A, Karlsson G, Tham K. Living with the long-term consequences 11–13 years after stroke: a phenomenological study. J Rehabil Med. 2016;48(10):847–852.
   PubMed Web of Science ®Google Scholar
• Kassberg AC, Nyman A, Larsson Lund M. Perceived occupational balance in people with stroke. Disabil Rehabil. 2021;43(4):553–558.
   PubMed Web of Science ®Google Scholar