Understanding activity participation 3-months after stroke: a mixed methodology study

Abstract

Purpose

To investigate stroke survivors’ activity participation 3-months after stroke, reasons for activity participation and the change in reason for activity participation.

Method

Thirty stroke survivors were administered the Activity Card Sort-Australia concurrent with a semi-structured interview about their activity participation. Data were analyzed using descriptive statistics and spiral content analysis.

Results

Participants had returned, in part, to 96% of their previous leisure, social/educational and household activities 3-months after-stroke; retaining more sedentary and home-based activities but fewer physically demanding and community-based activities. Thirteen participants described a change in their reasons for their activity participation. Personal, environmental and temporal dimensions explained these reasons for activity participation, as well as the changes in reason for activity participation. Full activity participation involved participants’ orchestrating a dynamic mix of fulfilling their personal desires according to their current physical, mental and emotional capacity; their social, organizational and physical environmental demands and obligations; and their routines, available time and future plans.

Conclusion

Qualitative interviews extend our understanding of the process of returning to participation in life activities and occupations following stroke to reveal that it involves the stroke survivor in a dynamic adaptation process of synchronizing personal, environmental and temporal dimensions in their daily lives.

IMPLICATIONS FOR REHABILITATION

• Rehabilitation professionals need to recognize the unique knowledge and ability stroke survivors have to manage their capacities, activities, occupations and environments.

• Client-centered practice involving true collaborative partnerships are needed to ensure stroke survivors return more satisfactorily to their activities and occupations.

• Rehabilitation professionals need to continually consider the ongoing changing relationships that occur between the person, their capacities, social, organizational and physical environments, and the person’s activity/occupational participation during recovery from stroke.

• Returning to full activity/occupational participation after stroke is a dynamic and continuous process.

• Rehabilitation needs to be provided in different forms at different stages beyond the immediate post-stroke time so that stroke survivors benefit from the “right rehabilitation” at the “right time” throughout their recovery journey.

Keywords:

• Stroke
• social participation
• human activities
• adaptation
• occupation
• rehabilitation

Acknowledgements

The authors wish to acknowledge and thank the participants, lead investigators and study co-ordinators from the START recruiting sites. In particular we acknowledge and thank those from the START-PrePARE recruiting sites: Austin Hospital (Helen Dewey), Epworth Hospital (Richard Gerraty), Monash Medical Centre (Henry Ma), Royal Melbourne Hospital (Bruce C.V. Campbell), and Western Hospital (Tissa Wijeratne). We also thank the Commonwealth Scientific and Industrial Research Organization (CSIRO) management and research teams involved in this research, in particular Lance Macaulay and the CSIRO data analytics team (Simon McBride, Karen Harrap, Chris Stanbridge). Finally, we acknowledge and thank the management and research team of the START program of research (www.START.csiro.au).

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the Commonwealth Scientific and Industrial Research Organisation (Flagship Collaboration Fund through the Preventative Health Flagship), James S. McDonnell Foundation (21st Century Science Initiative in Cognitive Rehabilitation - Collaborative Award #220020413), National Health and Medical Research Council (Centres of Research Excellence #1077898 and #1153236), Australian Research Council (Future Fellowship awarded to LMC #FT0992299), La Trobe University (Post Graduate Scholarship awarded to TT), The Florey Institute of Neuroscience and Mental Health (student scholarship awarded to TT) and State Government of Victoria (Operational Infrastructure Support Program).