International Journal of Nursing Studies 46 (2009) 14751484

A R T I C L E I N F O
Article history: Received 9 February 2009 Received in revised form 24 April 2009 Accepted 25 April 2009
Keywords: Caregivers Family Life experiences Middle aged Qualitative research Stroke
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International Journal of Nursing Studies

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The experience of being a middle-aged close relative of a person who has suffered a
stroke, 1 year after discharge from a rehabilitation clinic: A qualitative study
Britt Ba ckstro m a,*, Karin Sundin b
aDepartment of Health Sciences, Mid-Sweden University, Campus Sundsvall, SE-851 70 Sundsvall, Sweden bDepartment of
Nursing, Umea University, Campus O rnsko ldsvik, SE-891 18 O rnsko ldsvik, Sweden
0020-7489/$ see front matter 2009 Elsevier Ltd. All rights reserved. doi:10.1016/j.ijnurstu.2009.04.009
A B S T R A C T
Background: Living in close emotional and physical proximity to a person who has suffered a stroke may alter almost every
aspect of daily living and will inevitably impact family life. Age seems to be a factor in the experiences of stroke sufferers close
relatives after the stroke. Objectives: This study aimed to illuminate the experience of being a middle-aged close relative of a
person who has suffered a stroke; 1 year after the stroke sufferers discharge from a rehabilitation clinic. Participants: Nine
middle-aged close relatives of persons with a confirmed diagnosis of a first-time stroke were consecutively included in the study
and interviewed. Methods: The narrative interviews were audio-taped, transcribed verbatim and analyzed using a thematic
content analysis. The study was part of a longitudinal study. Results: Four themes emerged from the data, intertwined and in
conflict with one another. A turning point was reached, and the inevitability of an altered future became self-evident, so much so
that the middle-aged close relatives felt forced to accept and become reconciled to a changed way of living, even if feelings of
grief from loss were still present. The middle-aged close relatives process of coming to awareness and recognition of their own
needs was part of a complex interplay of emotions, in which they learned to leave feelings of shame and guilt behind. They
experienced movement from self-denial to self- recognition in their search for their own well-being and the recovery of their
strength for a functioning family life. Even if they experienced a greater sense of freedom, they still face living life within limits.
A significant challenge appears to be the effects of the personality changes among the person with a stroke, and the resulting
sense of being an outsider. Relatives struggled with health care providers for visibility and confirmation. Their experiences were
ones of standing alone, outside a closing door to the rehabilitation. Their ability to work, the benefits of functioning home care,
and support from their family helped them through these challenges. Conclusion: This study highlights the middle-aged relatives
realization that they will live an inevitability altered future. Individually, the stroke sufferers relatives need support in their
relationships within the family for emotional confirmation and to help them recognize and verbalize their needs without feeling
guilt; gaining these supportive factors may help the relatives to recover their sense of well-being and give strength for a future,
properly functioning family life.
2009 Elsevier Ltd. All rights reserved.
* Corresponding author. Tel.: +46 60 148508; fax: +46 771 975001.
E-mail address: britt.backstrom@miun.se (B. Ba ckstro m).
What is already known about the topic?
Living close to a person who has suffered a stroke may alter almost every aspect of daily living and will inevitably impact family
life. Help and support provided by the health and social services for relatives of stroke sufferers has often been found to be
inadequate and poorly tailored to individual needs.
What this paper adds
The middle-aged close relatives have moved, 1 year after the stroke sufferers discharge, from self-denial to self-recognition in
their search for own well-being and the recovery of strength for a functioning family life. The middle-aged close relatives valued
their work as a breathing-space, essential for their sense of well- being. There is a need for understanding the process of
transition of stroke sufferers middle-aged close relatives 1 year after discharge, which encompasses a struggle to regain their
own identity and relatedness in the family.
1. Introduction
A stroke can be seen as a family matter in which the immediate family of the stroke sufferer tries to construct a positive
recovery and reconstitute family life (Burman, 2001). Various literature reviews indicate that the close relatives of persons
affected by stroke are under great demands and suffer severe emotional stress (Han and Haley, 1999; Low et al., 1999;
Rombough et al., 2006), and may even experience higher levels of distress than the stroke sufferer, with these effects changing
over time (Jonsson et al., 2005; Suh et al., 2005).
The close relatives emotional well-being seems to be related more directly to the perceived burden of care than to the
objective characteristics of the patient (Wyller et al., 2003). The spouses are identified as a group at risk for strain (Blake et al.,
2003), particularly in cases where the stroke sufferers speech is affected (Draper and Brockle- hurst, 2007; Franzen-Dahlin et al.,
2008). Perceived personality change and cohabitation with the stroke sufferer also have a negative effect on the relatives daily
experience; the stroke victims cognitive changes can become more apparent in daily life over the long term (Carlsson et al.,
2007; Forsberg-Warleby et al., 2004; Franzen-Dahlin et al., 2008; van Heugten et al., 2006). Hence, spouses of stroke sufferers
seem to be particularly vulnerable to a perceived impairment of quality of life (Parag et al., 2008; Visser-Meily et al., 2005), to
lower emotional well-being (Franzen-Dahlin et al., 2007; Larson et al., 2008), and to lower psychological well-being compared
with norm values (Draper and Brocklehurst, 2007; Forsberg-Warleby et al., 2001). An increased perception of burden over the
sufferers chronic phase, in families with young children, also shows that parenting duties might be in conflict with care-giving
duties (Visser- Meily et al., 2008).
B. Ba ckstro m, K. Sundin / International Journal of Nursing Studies 46 (2009) 14751484 1476
Studies have shown that close relatives younger than 65 years of age and caring for a person with stroke experience a stronger
sense of anguish than older close relatives (Mackenzie et al., 2007; Periard and Ames, 1993) and seem to be in a greater risk for
burn-out (van den Heuvel et al., 2001) and psychological strain (Franzen- Dahlin et al., 2007).
Being close to and taking care of stroke sufferers in the long term are factors that have been shown, in a review of literature (1
year post-stroke), to be associated with a high risk of disruption of the integrity of families and the quality of life of the close
relatives (Anderson et al., 1995). Serious experiences of burden, depression and decreased life satisfaction are common among
sufferers spouses (Vis- ser-Meily et al., 2005). McCullagh et al. (2005) showed in a study that, unlike that of the person who has
suffered a stroke, the quality of life of close relatives does not improve over 1 year. Being confronted with persistent challenges
may make it harder for the relatives to maintain a positive sense of well-being (Rochette et al., 2007), but even if the burden
lessened and the close relatives showed an adaptation to their circumstances over time (Brereton and Nolan, 2000;
Forsberg-Warleby et al., 2004), they may still feel under considerable strain even 1 year after the stroke (Smith et al., 2004) and
may thus be seen as patients with their own problems and special needs (van Heugten et al., 2006).
The majority of studies have so far mainly focused on close relatives older than 65 years of age. However, increasing
incidences of strokes have occurred among younger persons (aged 3065 years) in Sweden (Medin et al., 2004). The adaptation
to a family members stroke is a complex process and is dynamic over time. This transition, the movement from one stage to
another, is of course highly individual, but does have several essential, generalizable properties (Meleis et al., 2000). The lived
experience of being close to a person who has suffered a stroke is therefore especially important to understand.
The present study is a part of a qualitative longitudinal study of the lived experience of being a middle-aged close relative of a
person who has suffered a stroke. The first study, 1 month after discharge (Backstrom and Sundin, 2007), showed that the close
relatives felt unreflectively duty-bound. They felt alien to the situa- tion, to themselves, and to the person who had suffered a
stroke. In order to maintain their sense of stability, they lived day-by-day. In the second study of the middle-aged close relatives
lived experiences 6 month after discharge (Backstrom and Sundin, 2009), the close relatives described a struggle to take on
something new, become reconciled with their situations and find a balance in their family lives, but they also felt dejected about
their changed relationships and roles and worried about how they would endure in the future. These results indicate that there is a
need for more knowledge and under- standing of the lived experiences of being a middle-aged close relative, as well as a need to
illuminate experiences at different intervals after the stroke sufferers discharge. Hence, the aim of this study is to illuminate the
experience of being a middle-aged close relative of a
3. person who has suffered a stroke, 1 year after the stroke
Interviews patients discharge from a rehabilitation clinic.
Narrative audio-taped interviews were conducted by 2.
Methods
the first author in order to obtain a deeper understanding of the experience of being a close relative, 1 year after A qualitative
research design with a latent content
discharge, of a person who had suffered a stroke (cf. analysis
approach (Downe-Wamboldt, 1992; Patton, 2002)
Mishler, 1986; Sandelowski, 1991). The participants were
was chosen for this study to describe, in-depth, the
all initially asked: Could you please tell me about your
experiences of being a middle-aged close relative of a
experience as a close relative right now? To clarify and
person who has suffered a stroke.
investigate the experiences further, questions were asked such as: Please, tell me more about..., who, when, what 2.1.
Participants and setting
do you mean? The interviews lasted from 50 to 80 min and were carried out at the first authors office (n = 2), a Nine
middle-aged close relatives of persons with a
conference room (n = 1), at the participants work (n = 3) or
confirmed diagnosis of a first-time stroke, with a need for
the participants home (n = 3) without the presence of the
care and assistance expected to last for more than 6
person who had suffered the stroke. The interviews were
months at the point of discharge, and with no evidence of
transcribed verbatim with pauses, silence, crying, and any
coexisting malignant or other rapidly progressive
other emotions noted in the transcription (Mishler, 1986).
medical disease, were interviewed 1 year after the patients discharge from a rehabilitation clinic located in
3.1. Data analysis central Sweden (September 2004April
2005). The rela- tives had all been interviewed two times earlier, 1 and 6
The content analysis method used was inductive months
after discharge. One close relative from the first
analysis, made by discovering patterns, themes, and study
chose to drop out of the ongoing study; nine
categories in the text (Patton, 2002, p. 453); this method
participants were therefore included in the second and this
requires an interaction with the text in order for findings to
third study. The criteria for inclusion in the study were that
emerge. At the beginning the interview text was read the
close relatives should not have suffered a stroke
through several times in order to get a sense of the text as a
themselves or have any cognitive impairment. Both the
whole (Sandelowski, 1995). The analysis was then persons
with stroke and their close relatives had to be
performed in several steps. The whole text was read again
between 18 and 65 years of age. Before the first interview,
and sorted into four content areas of experiences related 1
month after discharge, the stroke care nurse consecu-
to: daily living/family life; the person who has suffered a
tively informed 10 patients before their discharge about
stroke; the relatives image of the future; and health care- the
study, in accordance with verbal and written criteria
service. The next step was to reread and divide the text into
and information provided by the researchers. The stroke
units of meaning, condensed close to the text and labelled
care nurse asked each patient for permission for the first
with a code, guided by the aim of the study (Graneheim
author to contact the relative who the person with stroke
and Lundman, 2004). A meaning unit could be one or more
considered being of greatest importance in their daily lives
sentences depending on shift in contentan important after
discharge and who provided unpaid care. This person
decision guided by the research question to be answered. did
not have to live in the same household. The chosen
The codes and condensed meaning units related to one close
relative was contacted by telephone before all three
other were abstracted and sorted into sub-themes interviews
by the first author. There was no contact
depending on similarities and differences. During a between
the researchers and the interviewees between the
process of moving back and forward between parts and three
interviews. Details of the close relatives and the
the whole of the text, searching for the underlying persons
who had suffered a stroke are given in Table 1.
meaning, themes emerged and were interpreted (Patton,
Table 1 Details of the close relatives and the persons who had suffered a stroke (n = 9). One year after discharge.
Men/ women (n)
Age, years,
Employment (n) Type of relationship (n) Site of stroke Type of stroke (n) median (range)
Close relatives 2/7 55 (4165) Full or part-time (7); early retirement (1); in search of work (1)
Spouse or partner (6); partner (but not living together) (1); mothers (living in the same household as the stroke sufferer) (2)
The person who had suffered a stroke
7/2 53 (2459) Having a certificate
Left hemisphere (3);
 Cerebral infarction (4); of illness (9)
right hemisphere (6)
intracerebral haemorrhage (4); sub-arachnoid haemorrhage (1)
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2002). A theme means a thread of underlying meaning through the condensed texts units, codes and sub-themes
(Downe-Wamboldt, 1992). In order to ensure credibility, the authors discussed and reached agreement upon how to label the
sub-themes and themes.
3.2. Ethical considerations
The Ethical Committee of the Medical Faculty at Umea University, Sweden (Dnr 01-373) and the chief physician at the
rehabilitation clinic approved the study. It was important for this study to take confidentiality into particular consideration when
the participants met the first author for the third time and were therefore well- known. For that reason they were carefully
informed of their right to withdraw their participation without giving a reason.
3.3. Methodological considerations
The sample of close relatives was mixed, in order to amplify the variety of experiences and enrich the sample as a resource. A
sample size of nine may limit the study, but the interviews were rich in their content and can be considered as sufficient in
number to achieve variation in the analysis. During the interviews, the relatives shared thoughts and feelings with the first author
that they had not told anyone else, which shows that they felt safe and comfortable in the interview situation. The fact that this
was the third time that the first author had an interview with the close relatives might be a factor in their sense of ease with the
interview process.
All texts have been taken into consideration. By presenting the process of qualitative content analysis and the findings in
conjunction with quotations from the text, it is possible for the readers to make their own value judgment of the materials
trustworthiness. The findings of this qualitative study are not to be generalized, but the findings can fit and become
meaningful and applicable in other contexts outside the study (Sandelowski, 1986).
4. Findings
The findings could be described in four themes and 11 sub-themes, intertwined with each other at the same time as being in
conflict with each other (Table 2).
5. Becoming reconciled to a changed way of life
5.1. Adjusting to a changed way of life
The middle-aged close relatives experiences were ones of coming to terms with a new way of living in a changed life
situation, an adjustment that created a sense of security and emotional balance and feelings of relief. They had come to see that
they had been given no choice, and had to accept, learn and integrate life changes in their own thinking, thus being forced into
adaptation and restructur- ing their lives. For their own well-being, relatives abandoned the idea that everything could go back to
the way life had been before the stroke. Sadness and dejection
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Table 2 Overview of the themes and sub-themes emerged in the analysis.
Themes Sub-themes
Becoming reconciled to a
changed way of life
Adjusting to a changed way of life Being familiar with new routines Grieving for the lost relationship Making oneself ready to
meet the future
Feeling liberated from a troubled conscience
Trying to leave fear and guilt behind Having feelings of confidence by entrusting oneself and others
Going from self-denial to
self-recognition
Being aware of own needs and taking them into consideration Putting oneself in first place
Being an outsider Being powerless against the
health care system Lacking confirmation Living a life with limits
at the insight about the unalterable nature of the situation were disclosed in their narratives.
...in some way, Im doing well. At the same time its almost just as tough. Because...the more...time passes, the more you
realize that things wont, youre being forced to realize that things will not be the way...they were. No matter how much you wish
they were.
The close relatives experienced burdens within the family, as well as feelings of being alone in their concern about their
household and that they were not able to take over all aspects of responsibility held by the ill person before the stroke. They
struggled to manage their changed life situation, especially for the sake of the children in the family. This meant making efforts
to maintain former habits and striving to restore family life. Even if their daily struggle was burdensome, however, the close
relatives had gained strength to continue. They felt an obligation not only to be near the ill person, but also to endure as they
could not see any other alternatives.
Theres no other choice, when youre in the middle of it. Its just to clench (grit) ones teeth and keep on struggling. And in my
case, its very much about the children, I do have three children. You cant just lie down and give up.
5.2. Being familiar with new routines
The close middle-aged relatives were in a struggle to reconstruct and recapture their ordinary lives. They had started to
achieve a functional everyday life, which often required learning how to carefully plan every detail of daily life. They had
integrated the stroke into their life, and did not reflect upon it in the course of a regular day. The close relatives experienced the
home care assistants as a part of their family and their daily lives. Still, it was important for these close relatives to have feelings
of being an ordinary family; therefore, planning privacy became a part of their daily life and routines. It could involve
reorganizing the time before the assistants arrived on the weekends, in order to take it easy and to be private. They also sought
privacy by planning time to talk about matters concerning their family.
The close relatives described the challenge of managing multiple roles and the shift between the roles, which turned out to be
something they did not think about. Shifting between roles was important not only in sparing the relatives and the stroke
sufferers discomfort but also in maintaining their dignity, described as a moral obligation.
If it some sort of mechanism inside my head that starts to keep me from the discomfort, I dont know. But its nothing I think
about. // You grow into a role, you get routines, it sort of starts to calm down.
5.3. Grieving for the lost relationship
The middle-aged relatives had experiences of living with and caring for their loved one while grieving the loss of the person
they knew. They described, with sorrow how the ill persons changes in personality had become more pronounced and harder to
accept. Conflicts in daily living were hard or not possible to discuss, as it could end with the stroke patient feeling sadness and
needing to be consoled. Physical difficulties were experienced as rela- tively simple to deal with compared to the cognitive
problems. The experiences of a changed relationship with the person who suffered a stroke evoked ambiguous feelings. The
relationship consisted not only of both feelings of a deeper togetherness/relationship and joy, but also of living in a drained
marital relationship with a loss of mutuality and feelings of giving more than they received. There were expressions of not only a
great longing for having someone to share everyday problems, but also a longing for closeness and tenderness, such as a hug or a
kiss. Sexual life was also affected and was described as non-existent. They stated that their funda- mental love for the ill person
was still there, which helped them to endure in the relationship, even though the marital relationship had changed and more
resembled friendship and living side by side.
You want to be there, still.... its almost as ... were together as best friends, were not much more than are good friends and
buddies living under the same roof...
5.4. Making oneself ready to meet the future
The middle-aged close relatives insight into the changed situation led to changed life plans, which meant entering a new
phase in life. In some cases, the stroke sufferers working lives were behind them, and most of their time was now spent at home.
The close relatives showed a constructive attitude to the new situation and talked about the importance of maintaining optimism.
The close relatives expressed gratitude and compared their situation to others who were worse off. They strived to see
possibilities and gleams of light, in order to meet challenges in the daily life and the future.
You must try to stay positive. Because negative thoughts are no good. Positive, good thoughts are on the plus side.
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Having functioning care and accommodation for the ill person gave relatives the possibility to rest in safety, knowing that the
ill person would be taken care of in the future. At the same time, they got their own life back, along with the freedom to do the
things they wanted for themselves.
Thoughts about the unchanging nature of the situation were experienced as difficult. When considering the permanence of
their situation, what gave relatives strength, was to look ahead towards their own activities and events outside the home. When it
came to thoughts about their relationship to the person with stroke, they were living day-by-day. Close relatives also
expressed secret dreams of being set free, being single in the future, and being able to move. At the same time, relatives
expressed hopes for the stroke patients improvement. The relatives also expressed fear about the future and their inability to
endure if the person who had suffered a stroke was to fall ill again and become worse. Another projected image of the future was
one of being alone if the person suffering from stroke should die; this eventuality was not seen as so frightening when relatives
could find confidence in the presence of their own children:
Yes, sometimes I have thoughts about how old he will becomes... but at the same time I know that I can live alone since I have
done that before...I have ... my confidence in my children anyway, they are always around. ...
6. Feeling liberated from a troubled conscience
6.1. Trying to leave fear and guilt behind
The middle-aged relatives had managed to achieve a balance in everyday life between feelings of fear and guilt, and venturing
out from home to a greater extent. Feelings of fear and guilt had followed them after the patients discharge from the hospital
whenever they were away from the stroke sufferer, which prevented them from leaving home. Now they tried to release
themselves, and achieved a sense of liberation from their troubled conscience.
... before I had a more troubled conscience...and I phoned home at the evening when I went away somewhere, and I have
stopped doing that. // I dont think its because I felt that now he will manage by himself. Its maybe more about...anger about
being so tied down.
6.2. Having feelings of confidence by entrusting oneself and others
The middle-aged close relatives felt renewed confi- dence not only as a result of their own ability to manage unexpected
situations, but also as a result of having confidence in other persons around them who could give assistance or relief. Also by
entrusting the stroke sufferers own ability to do things on his/her own meant greater freedom for the close relatives. The close
relatives sense
was of releasing their grip on control. The close relatives could now take a step back and not speak on the ill persons
behalf. A sense of relief was described when the person who had suffered a stroke made attempts to take the initiative in daily
life.
The close relatives experienced their own close relatives, friends, and the home care-service as important keys to their feelings
of relief and well-being. Just knowing that they were not forced to be available all the time was important regarding their own
feelings of imprisonment.
The anxiety that something will happen to him (the person with stroke), when youre away, thats nothing I think about, they
will handle it at home.
7. Going from self-denial to self-recognition
7.1. Being aware of own needs and taking them into consideration
The middle-aged close relatives had reached a point where they had started to regard themselves as a person with their own
vital needs. They were aware of and monitored the consequences of caring for the sick person for their own health and
well-being, in order to keep up their strength and endure. Being aware of their own needs also meant that the close relatives had
to open themselves up to all possible help from health care professionals and friends, without hesitation. They felt moments of
their own to be invaluable, since these moments gave them substance and meaning in life, and allowed them to gather new
energy to meet daily demands. The ability to work was experienced as of great valuea breathing-space essential for their
well-being. Work was a place where they felt free and relaxed and received confirmation, but working also gave the relatives a
reason to leave home. Not having enough time of their own was a very challenging aspect of care-giving experienced by the close
relatives.
Ive got to keep on finding...possibilities to...do something on my own. Because thats what I need. And theres some
opportunities, but maybe theyre not as great as I would wish...
7.2. Putting oneself in first place
The middle-aged close relatives experienced the time after discharge as a process, going from putting all their attention on the
sick person, to being able to find their way back to regarding oneself as a person with their own vital needs without experiencing
feelings of letting the ill person down. They could put themselves in first place without great feelings of shame and guilt, a
decision that seemed to set their mind to rest and give them a sense of strength. Both the relatives themselves, and expectations
from friends and other people involved, had constructed obstacles to their own self-consideration. Making the decision to live
separately from the stroke sufferer was a way to survive and to get ones head above the surface of water. The relatives
experienced feelings of having
B. Ba ckstro m, K. Sundin / International Journal of Nursing Studies 46 (2009) 14751484 1480
reached the point where they had no energy left to go on; they felt they had no alternative other than to get a divorce from the
stroke sufferer if they wanted to retain their own health and continue living; even if they lived separately, they were unable to
disconnect from thoughts of the sick person and their care. The divorce was expressed as liberation and was experienced as a
relief.
Darn, now there has to be something more, there also has to be place for...me to feel good in this // ...a life is not just for living,
it should be as...it should have a value as well, a substance.
8. Being an outsider
8.1. Being powerless against the health care system
The middle-aged close relatives experienced the time after discharge as a constant fight with the health care system for the
rights of the ill person. They experienced frustration with the responsibility placed upon them by professional health care, in
which left them with feelings of anxiety and insufficiency. The relatives felt that they had been forced into a responsibility they
never really should have had. They described a feeling of helplessness and vulnerability in front of authority, and a feeling of
being unable to influence the outcome of their fight. They missed the presence of someone professional to give information and
support about the possibilities available for the care and assistance for the ill person, someone taking the role of the spider in the
web. They experienced long, drawn-out decision-making, fumbling for and giving their own ideas for the ill persons care, and
finally, responses for which they felt professional health care should have taken charge.
Even though the close relatives were satisfied with the persons in the home care-service, they saw shortcomings in the
organization, above all regarding the rate of personnel turnover. The close relatives often did not dare to call attention to
something unsatisfactory, since they regarded themselves as in a position of dependence and feared that a complaint would
influence the care for the ill person. They had feelings of being drained of force in their struggle and a sense of giving up, no
longer in possession of the energy to fight as a result of the resistance they had been facing.
Ive got lesser and lesser strength to call and nag and make a noise and fuss and things like that... But in some way... you give
up a little bit perhaps, when you meet resistance. ...
The close relatives experienced resistance when they sought to consult a physician about rehabilitative mea- sures for the
stroke sufferer. They felt the absence of planning for rehabilitation, and straight answers about the future care of the stroke
sufferer; these would have helped them plan their own time and find some relief. The close relatives experienced fatigue and
feelings of dejection; there were increased demands on them now, since the ill person was home alone more during entire days
without interacting with other people. The ill person now needed
more proximity and required their attention, which was described in some cases as a cause of conflict when they felt
overburdened. They felt as if they faced more and more closed doors when dealing with the rehabilitation, or that the
rehabilitation offered to them was not adapted to a younger person. The close relatives felt as if they stood alone in the
responsibility for the person who had suffered a stroke, abandoned by professional care.
Now we have ended up in a situation where we dont really get any much help from outside and we dont know how the future
with assistance will turn out. Now I am so unbelievably tired of this the rehabilitation, since there they have closed the doors in
general. // But what the local care can offer is a stay at the nursing home, and I cant send him there, he doesnt fit there.
8.2. Lacking confirmation
The middle-aged close relatives felt sadness when reflecting that decisions had been made without taking into account to their
own wishes or needs. Their experiences were therefore of being neglected and in a struggle to be heard. They lacked the
opportunity to share their feelings and experiences in their daily life and in their situation as a care giving family member. The
close relatives experienced support given from the professional healthcare to be focused on the person who had suffered a stroke,
and also focused on the physical aspect, which meant help given to them in their care for the person with stroke. They
experienced frustration when it resulted in a confirmation or strengthening of the caring role they had been trying to set
themselves free from. The close relatives felt that the roles of caregiver and partner were incompatible. The relatives felt
unsuccessful in the role of partner. Being a partner was experienced by the close relatives as having a relation to a person who
could take care of him/herself, and with whom you could have an intellectual as well as sexual exchange.
And when you get support, its very much about support for me in order to help my spouse. And theres why I feel like a
terrible failure, because it doesnt work. Because if I should be his caregiver, then it means that I cant be his wife. // I get so
unbelievably frustrated and irritated... one day Im a wife, and the other day Im a caregiver.
8.3. Living a life with limits
The middle-aged close relatives experienced feelings of being tied to moments when other persons could relieve them from
care giving duties, in order to be able to leave the home themselves. They experienced the loss of spontaneity in their actions.
The dependence on others for their own freedom was described by the close relatives as a cause of feelings of depression. The
close relatives experienced limitations not only because of their own exhaustion, but also because of the ill persons demand on
them to always be near. They felt that their own feelings of sadness, fatigue and depression also turned their own children away
from them.
B. Ba ckstro m, K. Sundin / International Journal of Nursing Studies 46 (2009) 14751484 1481
The close relatives described financial restrictions and burdens which had forced them into new undertakings, also resulting in
more limits on their choices. They described how rebuilding and new furniture adapted to the ill persons disability had required
money; they also had to consider expenses related to medicines and higher costs of travel.
They felt that friends and other persons around them did not fully understand their life situation and the constant commitment
demanded by always being near the stroke sufferer. In order not to evoke compassion or pity from others and demands to explain
their real experience, they concealed a difficult situation, in order not to be seen as complaining. The close relatives feelings
were of being a chained captive without the possibility of a life of their own.
...I dont know why Im worn out really.... But I think its partly because I sleep poorly in the nights,... and then that I all the
time...this commitment I think is wearing me out, sometimes you feel as if being chained captive in some way. As if you dont
have a life of your own.
9. Discussion
Being a middle-aged close relative of a person who has suffered a stroke, 1 year after discharge from a rehabilita- tion clinic,
means to have moved through the following stages: at 1 month post-discharge, a struggle not to lose ones foothold in life and
take one day at a time (Backstrom and Sundin, 2007); at 6 month post-discharge, a renewal of family life and a struggle for
normality and control, in which reality seeped in and the close relatives began to piece together a new future; to, in the
present study of lived experiences at 1 year post-discharge, the realization that their future is inevitably altered, and the resulting
reconciliation with a changed life plan (Back- strom and Sundin, 2009). The middle-aged close relatives seem to have come to a
turning point, where they saw changes caused by the stroke more clearly and in a lifelong perspective. For the close relatives
in present study, the process of coming to know, recognize and acknowledge the altered future was a gradual process over time, a
transition and according to Meleis et al. (2000), could be seen as a rude awakening. The close relatives in our study saw
themselves as part of a problem and their challenge was to adjust to alterations in their relationship to the person with stroke,
finding passable ways of relating and also to meet the psychosocial needs of the entire family. That meant a need to modify
existing patterns of interaction, expectations, family norms and roles (Palmer and Glass, 2003). According to Morse and Penrod
(1999) the close relatives had moved from the recognition of uncertainty to the level of acceptancefrom knowing it in the
head, but not knowing it in heart to knowing it in the head and feeling in their heart (p. 148). The close relatives in the study
expressed feelings of relief even if they also disclosed sadness and dejection at the insight about the unalterable situation. The
future and goals were not longer incom- prehensible for them, even if their life plan was changed.
According to Morse and Penrod (1999) this state can be described as seeing the light at the end of the tunnel, (p. 148)
essential for hope. This meant that the close relatives in the study needed to feel at home with oneself, to actively create a
home with new solutions, and in accordance with (Zingmark et al., 1995), to recover the experience of being at home. The
process of transition reflected in our study is the importance of relatedness and of finding a feeling of normality in a new way,
which is also showed in another study to be a need for the redefinition of what normal itself is (Pierce et al., 2007).
The findings in our study inevitably showed conflicts, described by the close relatives within the family as caused by their
desire for the ill person to respond to their needs, and their insight into the unalterable situation and its burdens. The close
relatives had to balance the needs within the family and make efforts to reduce the disruptions to family life caused by the
disease. This finding showed that the stroke poses a challenge to the relationships within the family in the long term, and
according to Clark et al. (2004), might explain close relatives experiences of stress and burdens on their mental health. Lasting
disabilities and disappointment about the lack of recovery can also influence the level of perceived burden (van Heugten et al.,
2006). van den Heuvel et al. (2001) have also found that younger close relatives to persons with stroke experience more strain
than older relatives. The findings in our study showed that having a family with younger children also seems to be experienced as
a greater burden, since the close relatives felt alone in their parenting duties. In another study, this has also been seen to be
associated with increased burden and decreased life satisfaction in the chronic phase of the stroke (Visser-Meily et al., 2008).The
close relatives in our study experienced cognitive consequences more pro- nounced in daily life in the long term, and experienced
that the changed personality of their loved one was hard to accept. The findings showed that coming to know and acknowledge
the cognitive changes of the person with stroke reflected the grieving process, and was intertwined with their role as wife or
partner and their sense of loss of their marital relationship. This is in line with the results of recent studies within couples 1 year
after a partners stroke, which showed that the spouses (age mean 59 years, range 3479) relationship with the person with
stroke were affected (Carlsson et al., 2007). Visser-Meily et al. (2008) showed that almost 70% of the partners to persons with
stroke (aged mean 53 years, S.D. 9) were dissatisfied with their sexual life and the harmony in the relationship deteriorated
correspondingly. Even if the close relatives in our study experienced the relationship to the person with stroke as drained and
cheerless, they felt obligated to be near to and keep on caring for their partner until the very end. However, concern for the
well-being of the partner, as well as warmth and love between the spouses was also found to be of value in their lives. According
to Lgstrup and Brandby-Co ster (1994, pp. 76 88) that means to respond to an unarticulated ethical demand, where the close
relatives unselfishly and with love try to find out the best for the other person; social norms and expectations also serve as
guidance. In some
B. Ba ckstro m, K. Sundin / International Journal of Nursing Studies 46 (2009) 14751484 1482
cases the close relatives in the study revealed flashes of dejection and a wish to be set free. These desires were mostly kept to
themselves, when the expectations from others around and from themselves dictated that you do not leave a person in need for
care.
An important factor emerging from our findings, not found in other studies, is that the health personnels efforts to give help
was experienced by the relatives as reducing them to their care giving role, a role they wanted to be set free from. They felt
trapped in the care giving role, a factor that increased the spouses dejection in their marital relationship. The close relatives
experiences were also of just being seen as a resource for the ill person, in line with findings in a recent study (Jumisko et al.,
2007). The different roles of being a caregiver and partner cannot easily be combined with ones own personal needs and
according to Visser-Meily et al. (2006) there is a need for more sensitivity to the distinct roles of the spouse and the potential
conflicts between these roles.
Even if the close relatives in our study now experienced a greater sense of freedom than after 1 and 6 months after discharge
(Backstrom and Sundin, 2007, 2009), they still reported experiences of living within limits, and the impossibility of having a life
of their own. The close relatives felt as if nobody understood the effects of living with a constant commitment, awakening
feelings of being an outsider. The unrelenting nature of caring was difficult to deal with, also described in another study as the
greatest difficulty in a year of caring (Kerr and Smith, 2001). However, now they had learned to leave the person with stroke
alone without feelings of fear. Similar results were described in another study 1 year after discharge (Smith et al., 2004).
Learning to leave also meant that the close relatives in the present study had to relinquish control of care for the person with
stroke, without feelings of failure. Respite and being relived from the care of the person with stroke were described as essential
for the close relatives in the study. Our study also showed that close relatives experienced work to be a breathing-space and a
source of strength. Similar results were also discovered both in our first study of life 1 month post- discharge (Backstrom and
Sundin, 2007), as well as our second study of life at 6 months post-discharge (Back- strom and Sundin, 2009), which showed that
work is a sanctuary away from the care giving environment and also a place were the close relatives lives could return to their
previous state. At work, they experienced living an ordinary life; they felt related, which gave them strength. This result shows
that the close relatives lives at work are essential for their well-being. It is important to highlight the close relatives attempt to
keep up with their work; at the same time, their concerns for their household and whole family weigh heavily on them alone; they
are at a risk for additional strain. On the other hand, work outside the home may decrease the risk of financial burden and,
therefore, reduce feelings of anxiety and strain (Baanders and Heijmans, 2007).
Our findings showed that a lack of confirmation is an important part of the close relatives experiences of being an outsider.
The close relatives experienced struggles with authority, and in line with other studies, they expressed
feelings of being invisible (Wallengren et al., 2008) and in the shadow of support (Birgersson and Edberg, 2004). According to
Brereton and Nolan (2002), the close relatives in our study felt unnoticed and overlooked, resulting in a feeling of going it
alone. van Heugten et al. (2006) argue that the care-giving relative of a person with stroke may thus be seen not only as
colleagues of the professional carers, but also as clients with their own problems and needs. It is important to note that in the
present study, the close relatives had found an awareness and confirmation of their own needs, without accompanying feelings of
shame or guilt. This has not been so clearly expressed in other studies. The movement from self-denial in our first study 1 month
after discharge (Backstrom and Sundin, 2007) to the self-recognition disclosed in the present study 1 year after discharge was
experienced as essential to the close relatives well-being and their ability to endure their situation, as they saw themselves in a
difficult, demanding and lifelong situation. The close relatives in the present study emphasized their own right to feel good. One
relative said; now the time has come for me to live, shows also that the close relatives needs had been disregarded earlier.
Being liberated from a troubled conscience required the close relatives to permit themselves to regard their own needs even in the
face of the stroke sufferers needs, to make demands for themselves and make the most of opportunities to promote their own
well-being.
10. Conclusion and implications
The findings of our study provide important insight into the lived experiences of middle-aged close relatives of stroke
sufferer, 1 year after the patients discharge. The close relatives appeared to come to acknowledge the altered future in a process
of transition. They struggled to become reconciled with a changed way of life, while grieving the loss of the person they knew.
They had to be strong, even though they were vulnerable to emotional distress and strain. The person with stroke had, after
falling ill, been in the focus of attention for care. Now the close relatives realized that they had to take their own needs into
consideration in order to recover strength and endure in the future, which meant shifting the focus of attention from the person
with the stroke to themselves, without feelings of shame or guilt. Central to the close relatives experiences after the discharge is
a struggle in front of the health care to be visible and get confirmation. They experienced the door to the rehabilitation to get
more closed which meant an increased burden and demand to themselves as close relatives.
A better understanding of the lived experience of close relatives of stroke sufferers is essential for their feelings of being
understood, and may shed light on the challenging and the demanding role the close relatives may hold in a time of transition.
This study highlights the middle-aged relatives realization that they will live an inevitably altered future. There is a need for
health professionals to provide more individually adjusted support as well as a need for support for their relation- ships within the
family.
B. Ba ckstro m, K. Sundin / International Journal of Nursing Studies 46 (2009) 14751484 1483
Acknowledgements
This study was supported by the Department of Health Science, Mid-Sweden University, Sweden, and the Founda- tion of the
Swedish Stroke Association. The authors wish to express their gratitude to the participants in the study and to the staff at the
Medical Rehabilitation Department.
Conflict of interest. None declared.
Funding. This study was supported by the Department of Health Science, Mid-Sweden University, Sweden, and the Foundation
of the Swedish Stroke Association.
Ethical approval. The Ethical Committee of the Medical Faculty at Umea University, Sweden (Dnr 01-373) and the chief
physician at the rehabilitation clinic approved the study.
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