ARTICLE IN PRESS
International Journal of Nursing Studies 45 (2008) 257–265
www.elsevier.com/locate/ijnurstu
The impact of gender regarding psychological well-being
and general life situation among spouses of stroke
patients during the first year after the patients’
stroke event: A longitudinal study
Jenny Larsona,b,, Åsa Franzén-Dahlinb, Ewa Billingb, Magnus von Arbinb,
Veronica Murrayb, Regina Wredlinga,b
a
Department of Nursing, Karolinska Institutet, 23300, S-141 83 Stockholm, Sweden
Karolinska Institutet Danderyd University Hospital, S-182 88 Stockholm, Sweden
b
Received 23 March 2006; received in revised form 21 August 2006; accepted 30 August 2006
Abstract
Background: The informal caregivers perceive lack of choice to take on the role of caregiving, receiving little or no
preparation for the caregiving role at home. The typical informal caregiver is female, either a spouse or adult child of
the care recipient, and seldom shares the responsibilities of caregiving with other family members. The spouses worry
about the ill relative, but also about what consequences the disease might have for their own life. The worries seem to
vary with gender and disease. There are, to our knowledge, few previous longitudinal studies that have focused on
gender differences among spouses of stroke patients.
Objectives: To explore gender differences among spouses in perceived psychological well-being and general life
situation, during the first year after the patients’ stroke event.
Design: Longitudinal study with three assessments regarding psychological well-being and general life situation during
1 year.
Settings: The study took place at a stroke ward, Stockholm, Sweden.
Participants: Consecutively 80 female and 20 male spouses of stroke patients admitted to a stroke unit participated.
Methods: Data were analysed using analyses of variance.
Results: Female spouses have a negative impact on psychological well-being, while male spouses have a lower
occurrence of emotional contacts in their social network. Consistently, the female spouses reported lower quality of life
and well-being than the male spouses.
Conclusions: This study generates the hypotheses that there are gender differences among spousal caregivers of stroke
patients; female spouses are more negatively affected in their life situation due to the patients’ stroke event than the
male spouses. It is important to take the individual differences under consideration when designing a nursing
intervention, to meet the different needs and demands of male and female caregivers. The interventions should focus on
Corresponding author. Tel.: +46 8 52483925, fax: +46 8 755 49 77.
E-mail addresses: [email protected] (J. Larson), [email protected] (A. Franzén-Dahlin), [email protected] (E.
Billing), [email protected] (M. von Arbin), [email protected] (V. Murray), [email protected] (R. Wredling).
0020-7489/$ - see front matter r 2006 Elsevier Ltd. All rights reserved.
doi:10.1016/j.ijnurstu.2006.08.021
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J. Larson et al. / International Journal of Nursing Studies 45 (2008) 257–265
258
individual support, so that the caregivers can adapt to their new role and be comfortable and effective as informal
caregivers.
r 2006 Elsevier Ltd. All rights reserved.
Keywords: Gender; Nursing; Life situation; Spouse; Stroke; Well-being
What is already known about the topic?
home (O’Connell et al., 2003; O’Connell and Baker,
2004; Ekwall et al., 2004).
The
informal caregivers perceive lack of choice to
take on the role of care giving, receiving little or no
preparation for the caregiving role at home.
The typical informal caregiver is female, either a
spouse or adult child of the care recipient, and
seldom shares the responsibilities of caregiving with
other family members.
In several studies, caregivers of stroke patients report
reduced social life, upset household routines, sleep
disturbances, and a great burden of care.
What this paper adds
Female spouses have a negative impact on psycho
logical well-being, while male spouses have a lower
occurrence of emotional contacts in their social
network.
Consistently, the female spouses reported lower
quality of life and psychological well-being than the
male spouses.
It is important to take the individual differences
under consideration when designing a nursing intervention, to meet the different needs and demands of
male and female caregivers, and the interventions
should focus on individual support, so that the
caregivers can adapt to their new role and be
comfortable and effective as informal caregivers.
1.1. Consequences of stroke
Stroke is one of the most disabling chronic diseases in
the adult population, with severe consequences for both
patients and their families. With time, the burden of
informal care giving contributes to physical, psychological and social stress among the informal caregivers,
leading to depression, anxiety and decline in the quality
of life (Scholte op Reimer et al., 1998; Dennis et al.,
1998). In several studies, caregivers of stroke patients
report reduced social life, upset household routines,
sleep disturbances, and a great burden of care (Thommessen et al., 2001; Boter et al., 2004; Scholte op Reimer
et al., 1998).
Living with a person, affected by a chronic illness, is
often characterized by a reduced sense of individual
freedom and increased sense of responsibility. The
informal care often takes a great amount of time and
energy, and may cause overwhelming feelings (Öhman
and Söderberg, 2004). The spouses not only worry about
the ill relative, but also about what consequences the
disease might have for their own life, and the worries
seem to vary with gender and disease (Kuyper and
Wester, 1998). The typical informal caregiver is female,
either a spouse or adult child of the care recipient, and
seldom shares the responsibilities of care giving with
other family members (McCann and Christiansen,
1996).
1. Introduction
1.3. Theoretical framework
Annually, approximately 15 million people suffer
from stroke worldwide (Mackay and Mensah, 2004).
In Sweden approximately 30,000 people suffer from
stroke every year, of which some 20,000 for the first time
(Riks-stroke, 2003). The disease is the leading cause of
death worldwide, and one of the most disabling chronic
diseases in the adult population, with severe consequences for both patients and their families (Mackay
and Mensah, 2004).
The health care system’s trend of reducing the length
of the patients’ stay in hospitals incurs several problems,
such as that the informal caregivers perceive lack of
choice to take on the role of care giving, and they often
receive little or no preparation for the caregiving role at
In Sweden, an extensive part of the care provided to
elderly persons is by informal caregivers (Hellström and
Hallberg, 2001). An informal caregiver is a person
caring for the next of kin. In this care the concept
consists of three words: ‘‘informal’’, indicating that the
care is given outside the frames of the formal healthcare
system; ‘‘care’’, which is what a person does to help
another person; and ‘‘giver’’, which refers to the person
giving this help. However, the concept of informal
caregiving also means something more than just a caring
person; it implies that it is based on relationships and
that it is voluntary (Ekwall, 2004). Parker expresses that
‘‘all the factors which transform an impairment into a
disability also tend to transform family members and
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friends into informal carers’’ (Parker, 1992). In this
paper, the informal caregivers are the spouses of the
stroke patients, and spouse is defined as a person living
in the same household as the stroke patient i.e., the main
informal caregiver.
Many attempts have been made to define the term
‘‘Quality of Life’’ (QoL); however, most researchers agree
that QoL is a multidimensional construct (Fayers and
Machin, 2000). The definitions of QoL are often linked to
health and emphasize such components as happiness,
personal well-being, life satisfaction, and impact of illness
on social, emotional, occupational, and family domains.
The World Health Organization Quality of Life Group
(WHOQOL, 1993) defines QoL as the individual’s
perception of his/her position in life in the context of the
culture and value systems in which they live and in relation
to their goals, expectations, standards, and concerns. The
overall QoL can be described as the dynamic interaction
between the external conditions of the individual’s life and
the internal perception of those conditions (Browne et al.,
1994). Assessment of QoL may be included in randomizedcontrolled studies, to identify those aspects of QoL that
may be effected by the therapy or trials that are expected
to improve QoL (Fayers and Machin, 2000).
Family members are the main source of support for
adults, making them an important part of one’s social
network (Hellström and Hallberg, 2001). To be able to
obtain social support, having a social network is
essential. Social network can be defined as the quantity
and density of a person’s social relationships, i.e., the
number of persons available and included in the social
network, and the closeness in the relationships (Hall and
Wellman, 1985). Social support can, in the case of being
an informal caregiver or patient, be obtained from
healthcare personnel as well as from the social network.
259
psychological well-being and general life situation,
during the first year after the patients’ stroke event.
2. Method
2.1. Sample and setting
Before the study was conducted, a pilot study
including five spouses was made, to evaluate the
feasibility of the battery of questionnaires, and the time
consumed to fill out the questionnaires. The spouses had
no difficulties to fill out the questionnaires, and the time
spent varied between 30 and 40 min. During the time
period November 2000–July 2002 approximately 500
patients were discharged from a stroke unit in Stockholm, Sweden to their own homes after the stroke event,
and of those 253 patients were living with a spouse, i.e.,
253 consecutive spouses of stroke patients were eligible
for this study. After informed consent from the patients,
the spouses were approached in connection with the
patient’s discharge from hospital regarding participation
in the study. A self-selected sample (40%), consisting of
80 female and 20 male spouses, consecutively accepted
the invitation to participate. The most common reason
for non-participation among both the men (22%), and
the women (24%), were their own illness. A comparison
between the non-participants and participants is described elsewhere (Larson et al., 2005).
The spouses were followed with assessments at
baseline (at inclusion in the study, after the patients’
stroke event), and after 6 and 12 months. Internal
dropouts over time consisted of eight women and one
man.
2.2. Measurements
1.4. Gender perspective
Female caregivers perceive emotional support, behavioural management, and carrying out household tasks
as significantly more time-consuming and difficult than
male caregivers, and they also express frustration in
response to the stroke regarding taking care of their
partner. Male spouses deal with changing roles due to
the stroke event, and learn new skills and behaviours as
they take over tasks that women traditionally perform
(Pierce and Steiner, 2004; Robinson-Smith and Mahoney, 1995). There are, to our knowledge, few previous
longitudinal studies that have focused on gender
differences regarding the life situation among spouses
of stroke patients.
1.5. Aim
The aim of the present study was to longitudinally
explore gender differences among spouses in perceived
The collected background data included age and sex
of the spouse and patient, and medical history of the
spouse.
To gain a deeper knowledge of the spouses’ psychological well-being and general life situation, we also
included assessments that could be seen as a part of the
main concept.
The present QoL was measured with a visual analogue
scale, consisting of a non-numerical vertical line
(100 mm) with verbal extreme point markers, ‘‘the worst
possible quality of life’’ (0 mm) and ‘‘the best possible
quality of life (100 mm).’’ The spouses were asked to
mark their present QoL (Ahlsiö et al., 1984). This
general measurement of QoL was chosen due to the
possibility for each respondent to make their own
decision of what is included in the definition of QoL.
The patient’s level of self-care was proxy assessed by
the spouse with the Barthel Index (Mahoney and
Barthel, 1965). This scale evaluates basic activities of
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J. Larson et al. / International Journal of Nursing Studies 45 (2008) 257–265
daily living, such as feeding, grooming, transfer,
dressing, toilet use, bathing, walking, incontinence of
bowel and bladder, and stair walking. The ADL items
scores from 0 (complete functional impairment) to 100
(complete functional independence). Cronbach’s a coefficient was in the present study 0.91.
Well-being was measured with the short form of
Bradley’s Well-being Questionnaire, consisting of three
4-item subscales: negative well-being, energy, and
positive well-being. The overall scale, general well-being,
is based on these three subscales (Bradley, 1994). The
total score of general well-being ranges from 0 to 36, and
each subscale ranges from 0 to 12, the higher the score,
the better perceived well-being. The internal consistency
reliability for the three subscales and the general wellbeing in the present study was 0.85, 0.78, 0.89, and 0.87,
respectively, as measured with Cronbach’s a coefficient.
The Well-being Questionnaire has earlier been tested in
a Swedish setting by Wredling et al. (Wredling et al.,
1995).
Life situation was measured with the Life Situation
Among Spouses after the Stroke event-questionnaire
(LISS), consisting of 13 questions, in four subscales:
worries, powerlessness, personal adjustment, and social
isolation. The total score ranges from 13 to 65 points,
where the score of 65 is describing a very good general
life situation, and 13 is the lowest score, describing the
worst possible life situation. Cronbach’s a coefficient
showed internal consistency reliability for the four
subscales and the total scores 0.86, 0.86, 0.84, 0.86 and
0.80, respectively, in the present study (Larson et al.,
2005).
The health state was evaluated with the graded visual
analogue scale part of the EuroQoL-instrument which
ranges from 0, ‘‘worst imaginable health state,’’ to 100,
‘‘the best imaginable health state’’ (EuroQolGroup,
1990). This general measurement of health state was
chosen due to the possibility for each respondent to
make their own decision of what is included in the
definition of their own health state.
Sense of coherence (SOC) was measured with the
short version of 13 questions (Antonovsky, 1993). The
concept of SOC includes three components: the perception of comprehensibility, manageability, and meaningfulness. Possible scores range from 13 to 91. A higher
score indicates a stronger sense of coherence. The
questionnaire has been tested for validity and reliability
in Sweden by Langius et al. (Langius et al., 1992). In the
present study internal consistency, measured with
Cronbach’s a coefficient, was 0.71.
Perceived social support was measured with an
abbreviated Swedish version of the Interview Schedule
for Social Interaction (Undén and Orth-Gomer, 1989,
Henderson et al., 1980). Six items measure availability of
social integration (AVSI), indicating how many people
who are available for social support, and seven items
measure availability of attachment (AVAT), indicating
occurrence of emotional contacts. The AVSI total score
ranges from 6 to 36, and the AVAT total score ranges
from 1 to 7, the higher the scores, the higher numbers of
existing contacts in the social network. Both AVSI and
AVAT showed a high internal consistency, with
Cronbach’s a coefficient, of 0.90 and 0.78, respectively,
in the present study.
The Comprehensive Psychopathological Rating ScaleSelf Affective (CPRS-S-A) was used to measure the
psychological health during the past 3 days. Possible
scores range from 0 to 60. A high score indicates a
deteriorated psychological health, and a score higher
than 10 points indicates a clinical significant risk for
depression (personal communication). If the spouses
had a score above 10 points, the researchers contacted
them by telephone and offered guidance of how to get
help. This scale has been tested for validity and
reliability in a Swedish study (Svanborg and Åsberg,
1994). In the present study internal consistency,
measured with Cronbach’s a coefficient, was 0.90.
2.3. Ethical consideration
The Local Ethics Committee of the Karolinska
Hospital approved the study, Dn:01-142. All data were
handled anonymously. The participants received written
and verbal information about the study and gave their
informed consent.
2.4. Data analysis
w2 test and independent Student’s t-test were performed to compare male and female spouses attending
the study, regarding age of spouse and patient, sex
distribution, and number of strokes that the patient had
suffered.
Analysis of variance (ANOVA), with repeated measures, was performed for all main outcome variables,
comparing male and female spouses over time (baseline,
6 and 12 months). Interaction effect has been studied
between within-subjects factor (i.e., baseline, after 6 and
12 months) and between-subjects factor (i.e., male or
female spouse). The analyses were adjusted for age.
Student’s independent t-test and Mann–Whitney
U-test, when applicable, were conducted to crosssectionally compare male and female spouses regarding
the baseline, 6 and 12 months assessments.
Since a few participants did not fill out all of the
questionnaires, the analyses were restricted only to those
from whom data was available for all assessments, i.e.,
‘‘per protocol’’ analyses. In this study probability values
of o0.05 were considered as statistically significant. The
statistical analyses were performed using the SPSS
software 12.0 for Windows.
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3. Results
Among the participants, there were significant differences (p ¼ 0.02) in age, between the male (mean age
72.10 year, SD ¼ 11.94) and female spouses (mean age
66.24 year, SD ¼ 9.31), but no other significant differences were found regarding demographic data (Table 1).
When comparing the male and female groups crosssectionally at baseline, the analyses showed that the
female spouses had a lower general well-being
(p ¼ 0.02), energy (p ¼ 0.03), and higher AVAT
(p ¼ 0.02) than the male spouses (Table 2).
After 6 months the female spouses had statistically
significant lower general well-being (po0.01), energy
(p ¼ 0.04), positive well-being (p ¼ 0.01), and SOC
(p ¼ 0.02) than the male spouses. The female spouses
also had a higher negative well-being (p ¼ 0.04), AVAT
(po0.01), and CPRS-S-A (p ¼ 0.04) than the male
spouses (Table 2).
At the 12 month assessment, female spouses continued to have a higher negative well-being (p ¼ 0.02)
and AVAT (p ¼ 0.02) than the male spouses (Table 2).
The ANOVA (Table 2) showed significant differences
between male and female spouses over time, in general
well-being (p ¼ 0.03), and positive well-being (p ¼ 0.04),
when adjusted for age. No other significant differences
were found between the genders. The ANOVA also
showed significant differences over time within groups
regarding Barthel Index (p ¼ 0.04), and energy
(p ¼ 0.04).
4. Discussion
4.1. Findings
The main findings in the present study reveal gender
differences over time, among spouses of stroke patients
in well-being, as well as in the social network. Already at
baseline we found gender differences, however, it is of
importance to consider that the baseline assessment took
place after the patients’ stroke event, i.e., this could be
interpreted as an early effect of the stroke event.
261
Our results show that the female spouses are more
negatively affected in their caregiver role than the male
spouses, resulting in a poor psychological well-being for
the women, which is also supported by other studies
(Borden and Berlin, 1990; Wyller et al., 2003). It is often
difficult to distinguish between informal caregiving and
the patterns of personal care within family and gender
relations. Many women traditionally perform tasks for
their spouses and families that would be classified as
‘‘caring’’ if provided by men in reverse (Twigg and
Atkin, 1994). According to Goode’s theory of role
strain, women have a limited amount of time, energy,
and commitment to dedicate to role responsibilities,
trying to balance multiple roles of being a mother, wife,
employee, and caregiver, which might result in role
strain and burden (Goode, 1960).
Both genders increased their perceived general
quality of life during the 12 months, although the male
spouses consistently had a higher quality of life than
the women. This might depend on the fact that male
caregivers are more likely to feel needed, useful and
appreciated, and they also feel that they have chosen to
take on the caregiving role, a role that gives more
meaning to their lives (Yee and Schulz, 2000; Matthews
et al., 2004). Male caregivers also receive outside help
with housekeeping more frequently than female caregivers (Matthews et al., 2004). Furthermore, viewed
from a traditional gender perspective, caring is often a
new task for elderly men, but not for women; hence, it
could be seen as something new added to the mens’ life
experience. The caregiving role is generally not
expected of men and, due to that, others are more
likely to notice and to assist them in this role to a
greater degree than they would for women (Ekwall
et al., 2004).
Our findings revealed that female spouses, already at
baseline, have a significantly higher perceived social
support when it comes to occurrence of emotional
contacts (AVAT) than male spouses. This finding is in
agreement with the results in a study of spouses of
patients with Alzheimer’s disease, where wives were
more likely to report having a confidant than the
husbands (Pruchno and Resch, 1989). Many spouses
Table 1
Comparison of male and female spouses with w2 and independent t-test (n ¼ 100)
Age of spouse (years)
Age of patient (years)
Number of strokes per patient
EducationX12 year given in per cent
Male (n ¼ 20)
Female (n ¼ 80)
Mean (SD)
Mean (SD)
72.10 (11.94)
70.90 (11.30)
1.30 (0.66)
15.00%
66.24 (9.31)
70.78 (9.88)
1.29 (0.68)
26.30%
p-value
0.02
0.96
0.94
0.29
262
Table 2
ANOVA and cross-sectional independent t-test, male and female spouses. Baseline, 6 and 12 months
Within
groups
p-value
Interaction
p-value
(0–100)
0.07
0.03
(0–100)
(0–36)
0.04
0.14
(0–12)
Tests of
betweensubjects
effects
p-valuea
Baselineb
6 monthsb
Male
Female
Mean
Mean
0.15
63.30
59.36
0.03
0.07
0.40
0.03
94.00
27.60
0.62
0.26
0.12
(0–12)
(0–12)
0.04
0.44
0.08
0.36
(0–65)
0.58
(0–100)
(13–91)
(6–36)
(1–7)
(0.60)
p-value
12 monthsb
Male
Female
Mean
Mean
0.49
67.63
62.37
91.75
24.70
0.59
0.02
95.26
28.37
3.00
3.38
0.53
0.09
0.04
8.70
9.90
7.28
8.80
0.27
0.55
47.10
0.36
0.70
0.16
0.87
0.84
0.23
0.78
0.64
0.26
0.71
0.48
0.18
0.98
0.16
0.82
Significant p-values are bolded in the table.
a
Adjusted for age and education.
b
Mann–Whitney U-test when applicable.
p-value
p-value
Male
Female
Mean
Mean
0.34
72.89
65.92
0.21
92.92
24.13
0.53
o0.01
93.16
27.68
94.77
24.58
0.65
0.05
1.68
3.09
0.04
1.68
3.26
0.02
0.03
0.07
8.68
9.37
7.30
7.92
0.04
0.01
8.32
9.05
7.57
8.28
0.22
0.29
46.99
0.96
48.82
47.70
0.65
49.06
48.82
0.93
75.78
71.21
75.12
67.95
1.00
0.17
78.74
73.21
76.40
67.27
0.67
0.02
75.68
72.37
75.36
70.22
0.83
0.43
22.26
5.68
7.47
22.26
6.50
9.04
1.00
0.02
0.33
21.47
5.58
5.16
22.23
6.53
8.60
0.62
o0.01
0.04
19.84
5.84
6.11
21.69
6.57
8.06
0.22
0.02
0.21
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Present
quality of life
Barthel index
General wellbeing
Negative wellbeing
Energy
Positive wellbeing
Life situation
total score
Health state
Sense of
coherence
AVSI
AVAT
CPRS-S-A
Tests of within-subjects
effects
J. Larson et al. / International Journal of Nursing Studies 45 (2008) 257–265
Possible
scores
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263
have feelings of loneliness and experience social limitations, i.e., contacts with relatives, friends and family
members are considerably reduced (Robinson-Smith
and Mahoney, 1995; Öhman and Söderberg, 2004). In
general, many networks often give short-term aid and
support. However, support for a longer period of time,
as needed by the informal caregivers, may not be
possible to obtain from the social network (Cohen and
Syme, 1985).
Most participants in our study were spouses of
patients with high scores in the Barthel Index, indicating
that the patients suffered minor strokes, i.e., the patients
were independent in their ADL ability. However, stroke
patients affected of a minor stroke, without remaining
functional deficits may still have invisible disabilities,
such as mental fatigue, emotionalism, concentration and
memory difficulties (Stone, 2005).
A demographic difference found in the present study
applies that male spouses are statistically significantly
older than the female spouses, which can be explained
by the fact that women are, on average, several years
older than men when they suffer their first stroke, i.e.,
male spouses are often older than female spouses
(Wyller, 1999). The same tendency is also found among
male and female spouses of patients with Alzheimer’s
disease (Pruchno and Resch, 1989).
Nurses must ensure that the informal caregivers are
assisted in the transition of care from the structured
hospital care to home settings and to provide support, so
that the caregivers can adapt to their new role and be
comfortable and effective as informal caregivers (Bugge
et al., 1999). The leading cause of costly long-term
institutionalization of stroke patients is negative health
effects, experienced by family caregivers. Nursing
interventions are needed to reduce these negative health
effects, and to inform the caregivers on how to care for
the stroke patient as well as for themselves (Han and
Haley, 1999; Bakas and Burgener, 2002).
findings are unique for caregivers. Further, the group
size of male spouses is only one fourth of the female
group size; however studies of this kind of population
tend to have similar sex distribution (Bugge et al., 1999;
O’Connell and Baker, 2004; Smith et al., 2004). The
sample was also self-selected, i.e., approximately 40% of
the eligible spouses accepted participation in the study.
The participants in this study are live-in spouses of
the patient, and most participants were spouses of
patients that had suffered mild strokes. This implies that
the results cannot be generalized to caregivers in
general, i.e., the findings are valid for the sample in this
study only.
4.1. Strengths
Acknowledgements
Some of the strengths in this study are the high
participation rate (91% participated in all three assessments made), and that the stroke patients, with regards
to their high level of independency in ADL, are
representative for the general stroke population in
Sweden, living at home with co-residents (HulterÅsberg, 2004). Another strength of the study is that
the spouses were followed for one year after the stroke
event.
This study was funded by Health Care Sciences
Postgraduate School. We would also like to thank Hans
Pettersson for statistical advices, and Lynn Stevenson
for linguistic advices.
4.2. Limitations
There are some limitations in this study that should be
mentioned. We have no ‘‘non-caregiver control group’’
to compare our results with, which would reveal if our
5. Conclusion and implications
Results of this study show that female spouses of
stroke patients have a negative impact on their
psychological well-being, while the male spouses have
a lower occurrence of emotional contacts in their social
network. Already at baseline, and consistently over time,
the female spouses reported lower quality of life and
well-being than the male spouses. This study generates
the hypotheses that there are gender differences among
spousal caregivers of stroke patients. Today, the homehelp service is often modelled on the female domestic
role, and therefore the home help may be of little or no
use for female caregivers in traditionally male tasks that
they find daunting (Twigg and Atkin, 1994). It is
important to take the gender differences under consideration when designing a nursing intervention,
focusing on individual support, to meet the different
needs and demands of male and female caregivers. This
process must start already during the patients’ hospitalization and continue in the community setting.
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