Life satisfaction 6 years after stroke
In general, spouses are found to report lower levels
of satisfaction with life irrespective of years since
stroke (10, 11). The lived experiences of spouses of
persons with stroke have been highlighted and have
often been found to be stressful, demanding and even
a burden (12, 13), while studies on life after stroke
for single persons are rare. However, in a prospective
study, Wise et al. (14) found marital status to be the
strongest predictor of social integration following mild
stroke, thus leaving the single person more vulnerable.
Furthermore, in a review study McGrath et al. (15)
have stressed the importance of including singles in
future studies.
Thus, in the short term women and men affected
by stroke, and their spouses, seem to be at risk of a
dissatisfying life with a depleting “Closeness” domain
(i.e. aspects of intimacy: family life, partner relation-
ship, sexual life). However, less is known about the
long-term experiences. Therefore, this study explores
6 years’ experiences of overall life satisfaction and as-
pects of “Closeness” in single and married people who
have had a stroke and, when applicable, their spouses.
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followed up at 6 years (Fig. 1). When included, the patients
were asked to identify a significant other, e.g. a partner, child,
or friend, who would consider participating in the study. Data
from persons with stroke and their significant others were
collected by research assistants (with experiences in stroke
rehabilitation) during home visits; using structured interviews,
tests and questionnaires. The interviews started with open-
ended questions, thus the research assistants were not aware of
the test results. At the 6-year follow-up 166 were deceased, 44
declined to participate, and 18 could not be found. This study
was a subgroup analysis of LAS-1 and included all persons
with stroke and their spouses (if available) who had taken part
in the 1-year and 6-year follow-ups and who had answered a
questionnaire on life satisfaction on both occasions. All partici-
pants had the same marital status and spouse on both occasions.
Marital status was defined as those who had a steady partner
relationship, “married stroke participant”, and those without a
partner, “single stroke participant”.
Ethics
All participants received oral and written information about
the study and informed consent was obtained. The Regional
Ethical Review Board in Stockholm approved the study (no.
2012/428-32).
Data collection
METHODS
Participants and procedures
Data were collected from the 1-year and 6-year follow-up of
a prospective cohort study of the rehabilitation process after
stroke, Life After Stroke phase 1 (LAS-1). Detailed descrip-
tion of LAS-1 has been reported elsewhere (16). In short, all
patients with a stroke diagnosis who were admitted to Karolin-
ska University Hospital in Stockholm, Sweden, between 2006
and 2007 were eligible for inclusion in LAS-1. At baseline,
349 patients were consecutively included, of whom 121 were
Inclusion Life After Stroke phase 1
n=349
Deceased, n=55
Declined or lost to follow - up,
n= 66
One - year follow - up
n =228
Deceased, n=111
Declined or lost to follow - up,
n=13
Rejoined, n=17
( Included in the study
but did not participate
in the one - year follow-
up)
Six - year follow - up
n=121
Did not answer LiSat at the one-year
and/or six-year follow-up, n=49
Included in the study
n=72
Fig. 1. Flow-chart of included stroke participants and spouses.
Data on experienced life satisfaction were collected using the
Life Satisfaction Checklist (LiSat-11) (9). The questionnaire
is commonly used to assess life satisfaction after stroke and
has been found to be reliable (17). It is a self-report generic
questionnaire that assesses life satisfaction with the global item
“Life as a whole” and 10 domain-specific items. Answering
alternatives range from 1 (very dissatisfied) to 6 (very satisfied).
In the present study, the overall item “Life as a whole” and the
domain “Closeness”, reflecting aspects of intimacy, (“Family
life”, “Partner relationship” and “Sexual life”) were included
and analysed as recommended (9) by dichotomizing the answers
into not satisfied (alternatives 1–4) and satisfied (alternatives 5
and 6). Notably, these items are not exclusively for those having
a family life and/or partner relation. Thus, single people were
also asked to judge their satisfaction within these areas of life.
Data on gender, age (all participants) and work status (per-
sons with stroke) were collected during interviews. The Barthel
Index (BI) (18) was used to categorize stroke severity at stroke
onset. The BI includes 10 personal care and mobility activities
with a score range of 0–100, where a higher score reflects a
greater degree of independence. A score ≤ 14 was classified as
a severe stroke, 15–49 as moderate, and ≥ 50 as mild (19). The
BI has shown good agreement with other measures of stroke
severity (19).
Open-ended questions were used to collect data from persons
who had had stroke. These questions addressed how they ma-
naged their daily activities after the stroke and what strategies
they used to handle problems as the result of the stroke. The
questions were framed as follows: “(1a) How do you think
your daily activities work for you today? (1b) Is there anything
that has changed (mention 3 examples of activities that have
become harder to perform)? (2) Do you have any thoughts about
how this (activities that have changed) might work better, such
as how you could solve the problem?” A similar open-ended
question was used to collect data from spouses. The question
addressed how their partner’s stroke changed their daily life.
J Rehabil Med 51, 2019