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Recovering from a stroke: a longitudinal, qualitative study of older Norwegian

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W O M E N ’ S P E R S P E C T I V E S A N D E X P E R I E N C ES

Recovering from a stroke: a longitudinal, qualitative study of older

Norwegian women
Grethe Eilertsen, Marit Kirkevold and Ida Torunn Bjørk

Aim. To illuminate older women’s experiences and the characteristics of the recovery process following a stroke.
Background. Patients with stroke face serious challenges related to bodily changes, existential aspects and daily life after stroke.
Few qualitative longitudinal studies have examined the recovery process from the perspective of the patient. Knowledge about
older women’s experiences in coping with life after a stroke is limited.
Design. Prospective, longitudinal, case-study design.
Methods. Six women aged 68–83 suffering from first-time stroke were recruited from two stroke units. Each participant was
interviewed in-depth 12–14 times during the first two years post stroke. The interviews addressed how they experienced their
body, their self-understanding, daily life and how this had changed over time. Most interviews took place in the participants’
homes. Gadamer’s philosophical hermeneutics informed the analyses.
Results. Post stroke recovery was slow and complex and evolved through four distinct phases. In the first phase (0–2 months
post stroke), the participants’ main concerns were their bodily changes; in the second phase (2–6 months), activities of daily life;
in the third phase (6–12 months), self-understanding and in the fourth phase (12–24 months), going on with life. The transition
between phases was gradual.
Conclusion. Recovery from stroke evolves over time through four distinct phases, which differ depending on significant
experiences and associated meanings. Psychological and social resources are equally critical in the women’s process of recovery.
Relevance to clinical practice. The four phases of rehabilitation suggest at what points various concerns require increased
therapeutic attention. Psychological and social resources must be vitalised at an early phase similar to bodily resources. This
knowledge may assist professionals in offering adequate help throughout the recovery process even beyond the established
rehabilitation period.

Keywords: aged care, female perspective, hermeneutics, rehabilitation, stroke

Accepted for publication: 21 July 2009

survivors is likely to increase concurrently with the burgeon-

Background
Stroke is the second most common cause of death and major
cause of disability worldwide (Donnan et al. 2008). Incidence
increases with age and among the oldest, the majority are
women (Ellekjaer et al. 1999). According to Donnan et al.
(2008), stroke mortality is probably decreasing more rapidly
than stroke incidence. Consequently, the proportion of stroke
ing older population in western societies.
Research has documented that stroke leads to extensive
changes (Easton 1999, Burton 2000, Ellis-Hill & Horn 2000,
Ellis-Hill et al. 2000, Hilton 2002, Bendz 2003, Kvigne et al.
2004, McKevitt et al. 2004, Olofsson et al. 2005, Ekstam
et al. 2007). Symptoms vary from mild functional deficits to
loss of consciousness and death. The classical symptom is

Authors: Grethe Eilertsen, PhD, RN, Associate Professor, Buskerud Correspondence: Grethe Eilertsen, Buskerud University College,
University College, Drammen; Marit Kirkevold, RN, EdD, Professor, Department of Health Sciences, Box 7053, N-3007 Drammen,
University of Oslo, Oslo; Ida Torunn Bjørk, PhD, RN, Associate Norway. Telephone: +47 32 20 64 67/00.
Professor, University of Oslo, Oslo, Norway E-mail: grethe.eilertsen@hibu.no

2004 Ó 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 2004–2013
doi: 10.1111/j.1365-2702.2009.03138.x
Women’s perspectives and experiences
hemiparesis. Incontinence, visual field defect, aphasia, dys-
phagia and cognitive problems like neglect, memory loss and
changed bodily and spatial perceptions are among the serious
consequences of a stroke (Wyller & Sveen 2002). This leads
to challenges in everyday life, and the body is perceived as
frailer (Sisson 1998, Kvigne & Kirkevold 2003, Eilertsen
2005). Patients refer to the stroke as a rupture in life,
requiring a reformulation of self and the recognition that life
will no longer be as it was before (Kaufman 1988a and,b
Becker 1993, Jorgensen et al. 2000, Green & King 2007,
Salter et al. 2008). According to Rittman et al. (2007), to
remain connected with others and integrated in the commu-
nity are major challenges faced by stroke survivors.
Recovery can be viewed as a process of learning to live in
the new state after an acute event, not necessarily living
without symptoms or limitations, but rather finding new
ways to perceive, interact and cope with one’s environment
(Anthony 1993, Roman 2006). Kirkevold (2002) describes
the first year following a stroke as a trajectory characterised
by four phases. The process is characterised by constant
change, as it takes time for patients to recognise the
consequences and the personal implications of the stroke.
The context appears to impact on the focus of the stroke
sufferer. Consequently, discharge from acute care to rehabil-
itation, returning home, or transfer to a long-term facility if
needed, seem to be significant times of transition. Knowledge
about these transition periods is limited (Kirkevold 2002,
Pringle et al. 2008). Despite the fact that older women are a
large and growing group of stroke survivors, little knowledge
is documented about their specific experiences and chal-
lenges. Consequently, the aim of this study was to examine
older women’s experiences and the characteristics of their
recovery process during the first two years following a stroke.
Methods
This was a longitudinal study where we followed female
stroke sufferers’ recovery process as this developed through
in-depth qualitative interviews.
Theoretical perspective
Gadamer’s philosophical hermeneutics (1989), exploring
dialogue as an inherently human mode of understanding,
informed the study. According to Gadamer (1989), preun-
derstanding is part of the linguistic experience that enables us
to understand. Nevertheless, to understand the meaning of
something perceived by another, we must not rely blindly on
our preunderstanding. He emphasises the importance of being
open to and to embrace the meaning, intended by the other
Ó 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 2004–2013
Recovering from a stroke
person. A constant challenge is to be aware of our biases to
interpret and understand the other person’s unique experi-
ences and meanings in contrast to our preunderstanding.
Preunderstanding and reflexivity
A thorough literature review of previous research informed
our preunderstanding. Three major issues seemed particular
prominent in the experiences of stroke survivors: bodily
changes, changes in everyday life and changes in the
understanding of self. We assumed that these issues would
be relevant to older women, but did not know how
important, how the women would perceive them over time
and the impact that they might have on their lives.
Repeated interviews provided an opportunity to contin-
ually elaborate on current preunderstandings. Our preun-
derstanding was challenged in several ways during the
course of the study. During an interview with one of the
participants at approximately seven months post stroke, for
example, she referred to herself as old rather than elderly,
the term she had previously preferred. The shift in terms
surprised the researchers, because recently old had been
discarded as a result of the negative connotations associated
with being old. In the Norwegian context, the notion of
being old is closely associated with being weak, dependent,
frail and inferior (Daatland 2003). The participant’s intro-
duction of the term challenged the researchers to reflect on
how the impaired body, awareness of reduced energy and
declining improvement in physical functionality after the
stroke accelerated the psychological ageing process. The
change of term was thus a key in grasping the participant’s
evolvement in relation to the existential aspects of her
recovery.
Participants
The participants were consecutively recruited from two
stroke units. The inclusion criteria were older female stroke
survivors (65 years+), suffering a first-time stroke, with
sufficient cognitive and language functions to participate in
in-depth interviews. Exclusion criteria were aphasia and
other serious illnesses such as cancer and dementia. The
patients’ eligibility for participation depended on sufficient
cognitive and language functioning. This was assessed in
relation to the participants’ ability to participate in every-
day conversation with members of the stroke team. This
turned out to be an adequate criterion for participation.
Stroke nurses provided written and oral information to
eligible patients, and each participant signed a consent form
prior to inclusion. The study was approved by the Regional
2005
G Eilertsen et al.

Committee for Medical Research Ethics and the Ombuds-
man for Privacy in Research at the Norwegian Social
Science Data Services.
The six participants included are presented in Table 1.
Based on Barthel’s index (Mahoney & Barthel 1965), the
participants had mild to moderate functional deficits. Aver-
age hospitalisation for five of these was 24 days. The sixth
participant was hospitalised 81 days before transfer to a
nursing home. The rationale for limiting the sample to six
was to allow in-depth examination of the recovery process.
Interviews
Each participant was interviewed 12–14 times during the first
two years post stroke, totalling 78 interviews. The frequency
of interviews peaked during the first months, when the
functional improvements were greatest and then gradually
became less frequent, with intervals of three months in the
second year.
The interview guide was based on a thorough review of the
literature and focused on the following themes: participants’
experiences of their body, their self-understanding and the
impact of stroke on their daily life. The participants were
invited to address these broad themes in their own words in
every interview. The interviews included open questions, such
as ‘How do you perceive your body? Can you tell me about
how an ordinary day was before the stroke? How do you
experience your daily life now? In the previous interview you
were concerned about being a nuisance to your closest family
members. How do you perceive this now?’ The participants
were also asked to dwell on other aspects of their lives that
might influence the present situation, e.g. their previous
experiences of illness. The probes used were determined by
the course of the conversation as well as the participants’
concerns raised in previous interviews. The continuous
analyses confirmed the relevance of the main themes.
Moreover, the quality of the interviews was enhanced by
encouraging the participants to introduce themes of their own
to convey all relevant aspects of their experiences. The
interviews lasted between 30–65 minutes. All interviews were
conducted by the first author, were tape-recorded and
transcribed verbatim.
Data analysis
In analyses based on Gadamer’s hermeneutics, data are
regarded as text. In this study, an understanding gained
through dialogue with the text involved listening to the sound
tracks, while concurrently analysing the transcribed research
interviews. ‘Texts’ comprised the tapes, the transcripts and
comments from the research diary e.g. reflections concerning
participants non-verbal expressions.

Table 1 Characteristics of participants

Barthel score*
Age Marital status, living situation
(years) and main occupation pre stroke Diagnosis Functional status at discharge Discharge After two years

75 Married, home Retired Cerebral infarction Impaired function and strength in 95 100
(left side) right leg, arm and hand. Unsteady
walk, walks without aids
81 Married, home Retired Cerebral infarction Impaired function and strength in 70 65
(right side) left leg, arm and hand. Uses
rollaters
70 Married, home Retired Cerebral infarction Impaired function and strength in 100 100
(right side) left leg and arm. Unsteady walk,
uses a crutch
68 Single, home 100% employed Cerebral infarction Impaired function and strength in 95 100
(left side) right leg, arm and hand. Uses a
walking stick
83 Married, home Retired Cerebral infarction Left leg almost without function. 40 25
(left side) No strength in right arm and hand.
Able to walk by using a pulpit
frame aid with support and
guidance. Sits in a wheelchair
69 Married, home 100% employed Cerebral infarction Impaired function and strength in 100 100
(right side) left leg, arm and hand. Unsteady
walk, uses a crutch

*Activities of daily life measured by Barthel score. Range of distribution from 0–100, higher score indicates better functional level.

2006 Ó 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 2004–2013
Women’s perspectives and experiences Recovering from a stroke

The interpretation process was carried out by constant
reflexivity and re-examination of the existing (pre) under-
standings of the authors in the light of new understanding
offered by the participants. According to Gadamer (1989), a
topic may be more fully understood through the dialectic
process of questions and answers and by conducting the
dialogue as a genuinely open conversation. Through this
process of continually questioning the interpretations of
concepts and statements raised by the participants, the
analytical process during the interviews enhanced the
researchers’ attention to a diversity of understanding within
the hermeneutic circle of the interview. After the interviews,
the researchers’ immediate impressions were recorded. Before
each new interview, a simultaneous process of listening to
and reading transcripts of the previous interview was
completed.
One inherent aspect of the hermeneutic approach is to seek
diversity in interpretations. To ensure attention to this central
perspective, the analysis focused on tracking the evolution of
the participants’ experiences and their interpretations of these
experiences both within each participant and across cases
throughout the two-year period. The analysis was performed
in the following three phases (Table 2).
The first phase had four stages. The first entailed forming an
overall impression from the interviews. Next, ‘natural units of
meaning’ were generated (Kvale & Brinkmann 2009) and
merged into subthemes. These were related to the study’s
main themes. Figure 1 illustrates the different stages in the
analytical process regarding one of the study’s main themes
(experiences of the body). The description illuminates how the
themes emerged and developed in an interpretive dialogue.
Through the use of flow sheets (Table 3), researchers, at
stage four addressed the chronological reading of identified
themes, determined whether they persisted and/or changed in
intensity/form and identified occurrences of any new themes
when they were introduced.
To understand how the context and other potential causes
impacted on the experiences and perceptions of the individ-
ual participant, the analysis also aimed to identify changes
over time in each theme and across themes. The initial
analysis centred on the experiences and perceptions of the
individual participant and how these changed over time. In
phase two, the material generated from all participants was
analysed to identify patterns, similarities and differences. In
the third phase, the analysis was centred on trends in each of
the three themes as well as potential connections between
them. This led to an overarching interpretation of the
recovery process as described and understood by the
participants.
Results
The participants’ recovery process developed gradually
through four phases and was closely associated with the
experiences they underwent and the interpretations and
meanings they attached to these experiences. Elaboration of
the essential meanings attached to the four phases is
presented in Table 4. The transitions between phases were
gradual. Focus and content show how experiences and
understandings were modified over time and the phases
suggest when the various transitions took place.
Phase 1: Focusing on bodily changes (0–2 months)
In this phase, the participants were primarily aware of their
bodies and bodily changes. Their bodies had become unre-
liable and unpredictable. The participants became acutely
aware of these bodily changes. Although they were not
previously bothersome, the presence of bodily abnormalities
now became unpleasant. One participant recounted recurrent
bodily discomfort in the form of nightly incontinence and
constipation:

Table 2 Phases in the analytical process

Phase 1 Phase 2 Phase 3

Focus: The individual participants’ experiences Focus: The material Focus: The trends
generated for all within the themes
Stage 1 Stage 2 Stage 3 Stage 4
participants and possible connections

Forming an overall Generating Relating natural Chronological Identifying patterns, Chronological reading
impression of the natural units of meaning units reading of subthemes similarities and of themes and subthemes
interviews meaning to main themes. using flow sheets differences within the using flow sheet addressing
Identifying addressing changes of themes and subthemes changes in persistence and
sub-themes and perception within each when new themes appear
new themes theme and across
themes

Ó 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 2004–2013 2007
G Eilertsen et al.

Theme I: Experience of the body

Experience of an
unpleasant body
Experience of
an unpleasant
body
Experience of bodily
unpredictability

Experience of bodily Bodily Bodily

unreliability unreliability strangeness

Experience of bodily
betrayal
Bodily
embarrassment
Awareness of bodily
dys-function

Experience of bodily Figure 1 Analytical stages in understanding

displeasure the experience of body.

Table 3 Excerpt from ‘flow sheet’, displays when different sub-themes appeared and variations in occurrence the first year post stroke

Theme 1: From bodily strangeness towards bodily confidence

2–5 weeks 6–9 weeks 10–12 weeks 4 months 5–6 months 7–9 months One year post
Period post stroke post stroke post stroke post stroke post stroke post stroke stroke

Three sub themes Up Ur E Up Ur E Up Ur E Up Ur E Up Ur E Up Ur E Up Ur E

Participant 1 + + + + + + + + + + + +
Participant 2 + + + + + + + + + + + + + + + + + + +
Participant 3 + + + + + + + + + + +
Participant 4 + + + + + + + + + + + + + + + + +
Participant 5 + + + + + + + + + + + + +
Participant 6 + + + + + + + + + + + + + + + + +

Up, an unpleasant body; Ur, an unreliable body; E, bodily embarrassment.

Table 4 Phases in the post stroke recovery process

Phase 1: Phase 2: Phase 3: Phase 4:

Focus: Bodily Focus: Activities Focus: Understanding Focus: Going
Phases in the changes in daily life of self on with life
post stroke
recovery 0–2 months 2–6 months 6–12 months 12–24 months
process post stroke post stroke post stroke post stroke
;
>
>
>
>
>
>
>
>
>
=
>
>
>
>
>
>
>
>
>
9

Understanding Understanding stroke Understanding stroke Understanding stroke

the nature impact as temporary impact as potentially impact as definitely
of stroke The stroke will Recovery will permanent permanent
‘pass by itself’ result from
‘hard work’
Orientation Life as it was Life as it is Life as it might be
Main approach Wait-and-see Recapturing Consolidating Innovative
Characteristics of the Unclarified Difficult to grasp Sadness Stability
situation
Emotional reaction Optimism Ambivalence Despondency Realism

2008 Ó 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 2004–2013
Women’s perspectives and experiences Recovering from a stroke

I suffer a lot from incontinence. Or rather, during the day I have no accept their bodily limitations more easily in defined training
discomfort, but at night – it just pours out. I have no control at all. situations than in situations involving real, practical action.
And I am constipated. It’s very unpleasant. Normally I’m not like Less physical energy made daily chores more burdensome and
that. was a cause of concern. Moreover, some of their energy and
zeal seemed to have been lost, as one of the participants
Because of paralysis, loss of function and fewer opportuni-
expressed it:
ties to attend to personal hygiene, she felt alienated from
her body. Nevertheless, the participants referred to these I have no energy for anything. I would like to keep things nice around
types of situations as transitory in nature. Their under- me, by cleaning and so on, but I have no energy for it. I really have to
standing of the nature of a stroke at this phase was pull myself together. I rest a lot and I think I’ve become weakened.
accompanied by a feeling of impermanence; they regarded
Transition from hospital entailed taking on the responsibility
the situations as periods of discomfort that would gradually
for planning and carrying out various activities and this was
pass.
more demanding than they had anticipated. They felt uncer-
Looking back on their lives before the stroke, the partic-
tain as to whether rehabilitation had given the desirable results:
ipants described their health as good. None had previously
been ill; their knowledge about stroke was negligible. The My body feels so heavy. Have I been like this all the time or have I
main incentive for all rehabilitative training was to return become worse? Didn’t I notice these changes earlier? I’m unable to
home and return to normal living. Through training, physical turn around quickly, I’m unsteady. I guess I will return to my old self?
therapy and spontaneous neurological improvement, they
Recovery was noticeably slower. The participants still
expected that the body would recover:
viewed changes resulting from the stroke as temporary,
It [the body] has not returned to its old self yet. I guess it takes some but gradually they came to recognise that further recovery
time. During the day I sit rubbing my hand, thinking, it will soon be required hard work. In the meantime, they still made efforts
all right. Soon. So, I just have to go on training. to return to life as it once was. Fatigue was seen as a threat
to normalisation of everyday life, which meant routinely
At the same time, the situation was experienced as unpre-
taking care of their home. The home was their primary
dictable. Taking one thing at a time, the participants adopted
workplace, the centre for potential fulfilment through
a wait-and-see approach. They allowed the staff to plan the
housework, cooking and caring for others around them.
training activities and they concentrated on taking part in
Woven into the mundane tasks were values that confirmed
them, leaving it to the staff to decide the sequence, pace and
the women’s understanding of self: as spouse, mother,
adjustments in the training program. Some of them were
grandmother and friend. The reason for the struggle to
fatigued, but even so they found the level of physical
resume previous activities and roles could thus be under-
treatment and training to be inadequate. The participants
stood at different levels. From a practical perspective, it
were eager to do what was expected of them and emphasised
concerned the ability to perform household duties. From an
that their main motivation was the will to regain health.
existential perspective, it concerned their engagement in
Mobilisation of will was primarily associated with patience
meaningful work that supported and maintained the under-
and hope. The basic sentiment was one of optimism. They did
standing of the self in significant women’s roles:
not wish to dwell on worries and uncertainty: ‘In spite of all,
I’ve been lucky’, one of them said - and this statement sums I’ve always baked for the weekends. I think my son will come to visit
up the participants’ reactions in this phase. tomorrow. He’s sure to bring his children and they love grandmoth-
ers’ apple tart. But I am not able to do that any longer and the freezer
is empty.
Phase 2: Focusing on activities of daily living (2–6 months)
Variations in their day-to-day condition made the situation
Discharge from the rehabilitation unit entailed transition into
unpredictable, and it became increasingly more complicated
a new phase. The participants expressed joy and positive
to determine which way development was heading. The
anticipation at the thought of returning home. However,
subnormal pace of life became demanding; routine chores
when confronted with daily chores, they experienced their
took two or three times longer, and they experienced a new
bodies in a more negative manner than they had in hospital.
hectic daily schedule, including doctors’ appointments,
While the focus of training in the rehabilitation unit had been
treatments, etc. Their days needed to be planned; there was
the body per se, the focus at home was on performing actual
less room for spontaneity:
tasks - functioning in daily life. The participants seemed to

Ó 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 2004–2013 2009
G Eilertsen et al.
My days are so full. I go to the physiotherapist three times a week,
making me busy for several hours. I’ve been many times to the doctor
and I’m also going to the dentist. Yesterday, it was chiropody and
next week I’m going to the dermatologist. And then there is my usual
doctor. But everything is necessary.
Uncertainty about striking a balance between necessary
training and excessive activity triggered fears of a new stroke.
Being inadequately prepared for the existential and social
consequences of stroke, the participants expressed ambiva-
lence. Difficulties arose when they returned home and
experienced little or no help. They expressed fears of being
a burden to their families, and they longed for signs from
their loved ones suggesting they were unchanged, that they
were the same persons they had always been. Growing
ambivalence revolved around the question of whether they
would be able to return to their lives as they had been prior to
the stroke.
Phase 3: Focusing on the understanding of self
(6–12 months)
During the second half-year, the participants’ belief in
returning to their previous life appeared to wane. At this
stage, they realised that the stroke represented a shift to a new
life. Life had become more cumbersome. Emotionally, they
had begun to process what had happened. Experiences
resulting from a weaker body gradually led to a self-
understanding centred on their own ageing:
I have changed after the stroke. I’m no longer as active. I can’t go
for walks or do many of the things I did before. I simply can’t.
When I suffered the stroke I was healthy. I didn’t feel weak at all.
I thought I was strong enough to manage almost anything. Things
are different now. But it might have to do with ageing. I’m starting
to get older.
Forgetfulness, loss of energy and an increased need for rest
were initially interpreted as stroke-related symptoms. As time
went by and the stroke receded into the background, such
changes were seen as being part of growing old. Descriptions
in this phase contrasted with the images of vigour and
youthfulness that dominated the previous phase. Now, the
overall approach was characterised by consolidation. Func-
tional improvements were marginal. They worried increas-
ingly about the demands made by their bodies. Their bodies
restricted their daily activities, and the changes fixed their
attention on the body itself. Reflections about their health,
the seriousness of having suffered a stroke and the increased
risk of a new stroke brought the participants into a
recognition process, in turn raising thoughts about death:
2010 Ó 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 2004–2013
I’ve become afraid of postponing things, so I’ve made a will. No one
knows what will happen tomorrow. If anything should happen,
I would like .... it to be done properly.
The time had come to pick up the threads of their lives.
Previous ideas about whom they had hoped to become
needed to be redefined. They questioned what they had
achieved in their lives. Their understanding of themselves as
care persons was chiefly associated with doing, not with
being. Whereas reflections on the changed relations with their
closest family members evoked sadness, perceptions of lost
opportunities in their lives brought about feelings of grief.
Grief was linked with the admission that it was too late for
many things. They felt increasingly despondent. Their efforts
had not led to the desired results. What they had thought was
transient now seemed permanent. It was hard to imagine how
their lives could become meaningful under the changed
circumstances.
Phase 4: Going on with life (12–24 months)
The participants described the stroke as a turning point in
their lives. During the second year, they came to the
realisation that bodily changes had become permanent. The
goal of physical therapy had gradually shifted from regaining
lost functions to preventing stiffness and pains. A feeling of
frailty and persistent bodily ailments led to a decrease in
activity and less participation in social life. A new life phase
had begun. The basis for changes in participants’ self-
understanding seems to be largely associated with the frailty
of the body.
The frightening aspects of the stroke were predominant in
the women’s reflections. Thoughts about what might have
happened led many of them to conclude that if they suffered a
second stroke they would want to die; having seen others
who had suffered even more severely. They now perceived the
ordinary, regular days, when they had some control, as good
days.
The stroke had led to a heightened awareness of what
mattered in their lives. Reflecting on how their life would
evolve, the participants focused on the present and the
immediate future. At the same time, they took greater
pleasure in the past. Being with those closest to them was
particularly meaningful. Their lives had taken an unwanted
turn, true enough, but they were also aware of the oppor-
tunities created by the new situation. During the second year,
a new attitude became discernible, with the situation prom-
ising more emotional stability and control in daily life than in
the previous phases. However, the descriptions were ambig-
uous. One participant was grateful things had gone so well;
Women’s perspectives and experiences
while another felt the stroke had destroyed the possibility of
living a full life. The situation was one of resignation and a
resigned acceptance of life as it had become:
Of course there are challenges every day. You try to return to who
you once were, the way you were - well, more or less the way you
were. You walk, work out, go out and make the best of it. I think I’ve
come a long way, I really do. So I would not say I’m really that
handicapped.
The participants worked diligently to be able to resume
meaningful activities. Experience from the first year had
provided the basis for a sober assessment of their strengths
and resources. Situations that earlier were emotionally
difficult no longer felt challenging.
Discussion
The participants’ development during the first two years
revealed four different phases. In contrast to several studies
reporting emotional chaos and crisis initially (Becker &
Kaufman 1995, Backe et al. 1996, Nilsson et al. 1997,
Burton 2000), the present study shows that the stroke was
not perceived as an immediate crisis. Instead, acknowledge-
ment of the serious consequences of the stroke was an
evolving process. The participants’ understanding of the
stroke as something transitory may be a clue towards
understanding their persistence and the mobilisation of their
own forces during the first two phases. Olofsson et al. (2005)
point out that health services need to develop strategies that
support the strong motivating power inherent in stroke
patients’ wish to return to their homes. Nevertheless, the
challenges occurring in the period after returning home,
during the period when they were mostly left to themselves,
should not be underestimated.
Phase three illustrates how the participants worked to
consolidate their lives. Training and activities made life
strenuous and hectic, and insufficient training resulted in
resignation. They had to decide how to spend their time and
use their strength. They gradually developed a capacity for
accepting the emotional and practical consequences of the
stroke. Perceptions of permanent loss, a prerequisite for grief
(Håkonsen 2003), arose out of problematical experiences in
daily life. While the participants in the two initial phases
expressed a need to see themselves as unchanged after the
stroke, they showed, in the third phase, a gradual need to
accept their changed understanding of self. Changes in
understanding of self, is a long process that is hard to
anticipate early on in the illness trajectory. The restoration of
self, through the processes of grief and reconstruction,
appears to be an essential dimension in the recovery process
Ó 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 2004–2013
Recovering from a stroke
(Becker 1997, Hjelmblink & Holmstrom 2006, Roman
2006). This phase also clearly showed a double acceptance;
of their illness and of old age.
The many ways the women’s lives were altered manifested
themselves during the fourth phase. Whereas one participant
had bonus days, life for another was practically ruined. The
degree of their perception of loss was proportional to how
much each participant had dwelled on lost possibilities and
on her ability to make adaptations. The development
underscores that subjective assessment of change is decisive
(Wyller & Kirkevold 1999). Some of the participants
primarily needed support and encouragement, while others
needed more basic help to enable them to think through
possible ways of living their lives. This suggests the need for a
differentiated rehabilitative approach. It seems to be crucial
that older women’s various needs are attended to in a proper
manner. Such assistance requires follow-up during the first
weeks in hospital. The drama in the women’s lives gradually
increased in intensity. Uncertainty linked to the risk of
suffering a new stroke was a source of worry and a constant
reminder of death. This is in line with Nilsson et al. (1997,
1999), who report that persons suffering stroke perceive
death as a more real outcome than prior to the stroke. After
two years, the participants’ situation was still unclear.
Kirkevold (2002) discusses whether the creation of realistic
perceptions of the disease early in the patients’ trajectory
might diminish the power of hope sorely needed in the hard
work of rehabilitation or whether it might accelerate the
adaptation process. In the first two phases, participants in this
study had unrealistic expectations that might be attributed to
inadequate knowledge about the stroke and its consequences.
This was also a source of worry and uncertainty. These
findings suggest that realistic perceptions can accelerate the
adaptation process. This is in line with Antonovsky’s (1987)
view that experiencing a situation as comprehensible and
manageable may stimulate to a more active role in the
recovery process. Hospital stay during the first phase of
rehabilitation was largely controlled and organised without
discussing the women’s perception of what was at stake.
Health professionals should not presume that an absence of
queries from the patients in the early phases is equivalent to
not needing knowledge. Earlier studies have found that older
patients might not dare to ask questions of professionals, and
that the patients often want the staff to take the initiative and
to ask them about their views and opinions (Sainio et al.
2001, Almborg et al. 2008).
Comparing our findings with Kirkevold’s study (2002), we
found substantial agreement in terms of the focus and process
of adjustment in each phase. However, the older women in our
study needed more time to live through each phase. The
2011
G Eilertsen et al.
prolonged need for rehabilitation may be the result of
insufficient systematic and long-term planning of rehabilita-
tion, particularly during the first two phases. Assuming that
later phases evolve based on experiences in the preceding ones,
one may also ask if an early, individually oriented, more target-
oriented approach would have made the older women’s
recovery process less cumbersome and more rapid. The results
suggest a need for early, home-based rehabilitation where
patients actively take part in deciding the programme – an
arrangement found promising in other studies (Fjaertoft et al.
2003, 2004). Such interventions should be followed closely
through appropriate research studies.
Strengths and limitations
This study aimed at obtaining in-depth knowledge of older
women’s experiences over time, requiring a comprehensive
interview schedule with each participant. This limited the
number of participants. We did succeed in exploring the
participants’ experiences in-depth, thereby generating
detailed knowledge of changes in their recovery process over
time. However, the limited sample is a disadvantage in this
study, because the participants do not represent the general
population of older female stroke survivors. Although the
criteria for participation did not exclude participants with
comprehensive physical functional deficits, the participants
suffered mild to moderate functional deficits. Participants
affected by more severe stroke, severe speech deficits and
cognitive impairment were not represented. Furthermore, our
consecutive sampling strategy resulted in only one participant
who was single. This is a skewed representation when
compared to the proportion of single women in this age
category in Norway and elsewhere in the western world
(Raffel 1997, Efraimsson et al. 2003). Another major
strength of this study is its focus on older women. They
represent a group sparingly studied, and the study contributes
a new understanding of one segment of the population of
older women suffering from stroke. However, further
research is needed to increase our knowledge of what is vital
for older single women recovering from stroke and for more
severely affected individuals. Our findings also suggest that
more knowledge is needed to identify older women with a
particular risk of experiencing deteriorating psychosocial
health. Identifying clinical characteristics for this purpose
constitutes an important area for future research.
Conclusion and relevance to clinical practice
Our findings indicate that recovery from stroke is a complex
and demanding process for older women. The process evolves
2012 Ó 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 2004–2013
over time through four distinct phases, which differ depend-
ing on significant experiences, interpretations and associated
meanings. The four phases suggest at what point various
concerns require increased therapeutic attention. Increased
understanding of the recovery process may assist profession-
als in offering adequate help throughout the recovery process,
even beyond the established rehabilitation period. The study
also documents the need for follow-up after the first weeks in
hospital. Early supported discharge need special attention for
this group, because performance of routine household chores
preserves identity and represents meaningful activity for older
women in their recovery process.
Acknowledgement
The authors acknowledge Dr Scient Heidi Ormstad for her
thoughtful comments to earlier versions of the manuscript.
Contributions
Study design: MK, GE; data collection: GE; analysis: GE,
MK, ITB and manuscript preparation: GE, MK, ITB.
Conflict of interest
The author(s) declare that they have no conflict of interests.
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