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

Figures & data

Table 1. Characteristics of the participants with stroke (n = 10) based on data collected at stroke onset, 16 months and 10 years after stroke.

Participant no.	1	2	3	4	5	6	7	8	9	10
Education	Average	Average	Low	High	High	Low	Low	Low	Average	Low
Occupation before stroke	Studying	Working	Sick leave	Working part time	Retired	Retired	Working	Working	Sick leave	Retired
Living situation before stroke	Co-habiting	Co-habiting	Co-habiting	Co-habiting	Co-habiting	Co-habiting	Alone	Co-habiting	Co-habiting	Alone
Stroke type	CI	CI	CI	CI	CI	CI	CI	CI	CI	ICH
Stroke severity (acute NIHSS)	Severe	Moderate	Mild	Mild	Mild	Severe	Mild	Mild	Mild	Moderate
Cognitive impairment at 16 months (MMSE ≤ 24)	No	No	No	No	No	Yes	Yes	No	No	No
Self-rated motor impairment at 16 months	Upper extr.	Upper & lower extr.	Upper extr.	No	No	Upper & lower extr.	Upper & lower extr.	No	Upper & lower extr.	Lower extr.
Disability at 10 years (mRS, 0–5)	1	2	0	2	0	5	0	4	2	1
Social and leisure activity at 10 years (FAI-CSC)	5	9	9	8	9	3	3	3	0	8

Education: Low ≤ 9 years, Average = 10–12 years, High > 12 years/univ.

Stroke type: CI: Cerebral Infarction; ICH: Intra Cerebral Haemorrhage.

NIHSS: The National Institutes of Health Stroke Scale. Mild = 0–4, moderate = 5–14, severe = 15–24, very severe = 25–46 [29].

MMSE: Mini Mental State Examination [30].

mRS: Modified Ranking Scale. 0 = no symptoms, 1 = no significant disability despite symptoms, 2 = slight disability, 3 = moderate disability, 4 = moderately severe disability, 5= severe disability [31].

FAI-CSC: Frenchay Activities Index-Community Social and Civic life domain. Graded 0–9, from never to at least once per week [19].

Note. Age and gender not included in the table to limit identification.

Figure 1. The dynamic process of employing different strategies for social and leisure participation after stroke.

Table 2. Theme, main categories and sub-categories representing strategies for participation in social and leisure activities after stroke.

Theme	Employing different strategies to balance costs and rewards of engagement in social and leisure activities.
Main categories	Protecting and re-constructing the self	Enabling participation in valued social and leisure activities
Sub-categories	Building identity and meaning through social and leisure engagement	Being persistent and not giving up
	Prioritizing independence and daily life responsibilities	Optimizing physical and cognitive capacity
	Avoiding high-risk activities	Adapting activity performance
	Coping with change	Replacing valued social and leisure activities
		Reducing domestic responsibilities

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