450366
66Bronken et al.Qualitative Health Research

QHR221010.1177/10497323124503

Articles

The Aphasic Storyteller:
Coconstructing Stories to Promote
Psychosocial Well-Being After Stroke

Qualitative Health Research
22(10) 1303­–1316
© The Author(s) 2012
Reprints and permission:
sagepub.com/journalsPermissions.nav
DOI: 10.1177/1049732312450366
http://qhr.sagepub.com

Berit Arnesveen Bronken,1 Marit Kirkevold,1 Randi Martinsen,1
and Kari Kvigne2

Abstract
Telling stories is essential to the continuous process of creating meaning and to self-understanding. Persons with
aphasia are vulnerable to psychosocial problems by their limited ability to talk and interact with others. This singlecase study illustrates how a young woman with aphasia and a trained nurse interacted to coconstruct stories within
the context of a longitudinal clinical intervention aimed at promoting psychosocial well-being in the first year after a
stroke. Data were collected through qualitative interviews and participant observation; they were then analyzed from a
hermeneutic-phenomenological perspective.The experience of coconstructing stories made an important contribution
to improving the participant’s psychological well-being. The shared construction of the participant’s story evolved as
a cumulative process, and it was facilitated by the establishment of trust in the participant–nurse relationship, the
systematic use of worksheets and supported conversations, and a specific focus on psychosocial topics and structural
organization.
Keywords
communication; coping and adaptation; intervention programs; psychosocial issues; stories / storytelling; stroke

Storytelling is regarded as fundamental to the continuous
process of creating meaning and to self-understanding
(Bruner, 1991; Polkinghorne, 1988). It is a relational
activity that is embedded in cultures and contexts (Hydén,
1997). Stories are purposeful and constructed within certain cultural narrative conventions. They are told to someone in a particular way to be listened to, responded to, and
acted on (Frank, 2000). Exchanging stories can support
and affirm personal and social experiences (Atkinson,
2001; Holstein & Gubrium, 2000). Language is the most
important tool for human interplay. Through language, we
express thoughts, feelings, and opinions; share experiences; tell who we are and what we want to be; and position ourselves in different social contexts (Atkinson;
Holstein & Gubrium; Riessman).
Aphasia is a common consequence of stroke, and it
affects approximately one third of all stroke survivors
(Engelter et al., 2006; Kauhanen et al., 2000; Naess,
Hammersvik, & Skeie, 2008). Stroke can result in various
types of language disabilities. Any or all language modalities, including talking, reading, writing, calculating, and
understanding oral or written language, can be affected in
various combinations (Hillis, 2007). The loss of language

as a flexible tool to explore, discuss, and make sense of
experiences is considered to affect all dimensions of quality of life (Code, Hemsley, & Herrmann, 1999; Moss,
Parr, Byng, & Petheram, 2004; Parr, 2007).
Aphasia following stroke is associated with major disruptions in everyday life (Bury, 1982; Code & Herrmann,
2003; Natterlund, 2010). Persons with aphasia seem particularly vulnerable to psychosocial problems (Code et al.,
1999; Hilari, 2011; Hilari & Byng, 2009; Hilari et al.,
2010; Parr, 2004, 2007). Emotional and psychosocial factors have a marked impact on recovery, the response to
rehabilitation, and psychosocial adjustment (Brown,
Worrall, Davidson, & Howe, 2010; Code & Herrmann;
Cruice, Worall, Hickson, & Murison, 2003).
The telling and sharing of stories is seen as a primary
tool for persons struggling to regain coherence and
1

University of Oslo, Oslo, Norway
Hedmark University College, Elverum, Norway

2

Corresponding Author:
Berit Arnesveen Bronken, University of Oslo, Postbox 1130 Blindern,
N-0318 Oslo, Norway
Email: b.a.bronken@medisin.uio.no

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1304		

Qualitative Health Research 22(10)

meaning in the chaos that often accompanies life-changing diseases (Bury, 1982; Charon, 2001; Frank, 1995,
1998; Mattingly, 1998). Frank (1995) identified three
different types of illness narratives: restitution narratives, chaos narratives, and quest narratives. Restitution
narratives are told when illness is seen as a temporary
interruption to be overcome and get well again; chaos
narratives describe suffering, uncertainty, and loss of
control, and they lack coherence. Quest narratives occur
when a person faces suffering and believes that there is
something beneficial to be gained from illness (Frank,
1995). Frank (1995, 1998, 2000) emphasized the importance of having people suffering from serious illness tell
their stories and for health care providers to listen to
them. For stroke survivors with normal communication
and language skills, assistance with framing life stories
and illness narratives has been found to be an important
part of successful recovery (Becker, 1997; Ch’Ng,
French, & Mclean, 2008; Faircloth, Boylstein, Rittman,
& Gubrium, 2005; Faircloth, Boylstein, Rittman, Young,
& Gubrium, 2004; Kaufman, 1988).
The interplay between the teller and the listener is
essential to the construction of narratives (Frank, 1998,
2000). Aphasia disturbs both the natural dynamic interplay seen in storytelling and the common rules that govern
these interactions (Kagan, 1998). It is unclear how persons with aphasia renegotiate and transform their experiences into stories and then move past the biographical
disruptions caused by aphasia and stroke. Several authors
have emphasized the importance of and challenges related
to supporting the narrative processes of persons suffering from aphasia (Hinckley, 2010; Parr, 2004; Shadden,
2005). The stroke literature calls for clinical interventions
that are accessible to this patient population and that focus
on their psychosocial needs (Hilari & Byng, 2009;
Hinckley; Hjelmblink, Bernsten, Uvhagen, Kunkel, &
Holmström, 2007; Shadden & Hagstrøm, 2007).

first 6 to 12 months after a stroke. The intervention was
organized as an individual, dialogue-based collaboration
and problem-solving process between a stroke survivor
and a specially trained nurse. The content of the program
addressed four dimensions of psychosocial well-being—
basic emotional state, meaningful activities, social relationships, and self-concept (Næss, 2001)—all of which are
threatened by stroke (Code, 2003; Code et al., 1999; Fure,
Wyller, Engedal, & Thommessen, 2006; Parr, 2004).
Worksheets addressing topics related to the aforementioned dimensions of psychosocial well-being and topics
known (from the stroke literature) to be challenging were
addressed in each encounter. The worksheets were adjusted
linguistically for persons with aphasia. We also used principles from the Supported Conversation for Adults With
Aphasia method (Kagan, 1998) to facilitate the conversations with the participants with language disability. We
used an approach called guided self-determination
(Zoffmann, 2004) to support the adjustment process. The
theoretical and empirical foundations of the intervention
are described in depth elsewhere (see Kirkevold, Bronken,
Martinsen, & Kvigne, 2012).
The recovery process following a stroke has been
referred to as a demanding journey in which the stroke
survivor moves through different phases as various challenges unfold (Easton, 1999; Kirkevold, 2002). We used
a metaphor called the great trial of strength. It refers to a
well-known and demanding 335-mile bicycle race in
Norway (lasting 15 to 20 hours). Healthy and welltrained bicycle riders are followed by an escort car,
which provides the support and equipment that the riders
need. We assumed that a stroke survivor also needed an
“escort car,” one addressing different needs as the survivor arose during the “journey of recovery” after stroke.
Each encounter was conceptualized as a “pit stop” on
this “race” toward recovery.

Method
Design

Aim
The aim of this article was to illuminate how an interactive
process of coconstructing stories was established between
a person with aphasia and a nurse within the context of a
longitudinal psychosocial intervention during the first year
after stroke. This case study was part of a larger study
based on 25 cases of stroke in the first year after stroke.
Seven of the participants had moderate to severe aphasia.
The overall aim of the intervention was to support the
psychosocial adjustment process in stroke patients, thereby
promoting subjective psychosocial well-being.

Description of the Intervention
The intervention was planned to consist of eight encounters, each lasting 1 to 2 hours, to be conducted during the

This study constitutes a single-case design. A single case
was chosen to exemplify and explore in depth how the
process of coconstructing stories can be facilitated and
developed within the context of the intervention described
above. We chose this particular case because the person
experienced different degrees of aphasia during the first
year poststroke and was able to report the experiences
relatively fluently after the intervention ended, providing
us with rich data. Even if this participant was very young
compared to the mean age of the stroke population, we
regarded this case as representative of others because all
the participants with aphasia in the larger study appreciated the assistance they received to coconstruct stories
about themselves and their illness experiences. However,

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1305

Bronken et al.
Maria

Maria was a woman who was approximately 30 when she experienced an ischemic stroke (thrombosis in the left hemisphere).
Her aphasia was described as follows: “Serious with impressive and expressive difficulties, sound and word paraphasia and
strongly reduced reading and writing abilities. Situational attention and understanding is good” (Medical data). She had
reduced strength in the right side of her body, but she could walk and dress without assistance. Maria had been healthy until
the onset of her stroke. She was unmarried, lived by herself, and had no children. Her closest family lived a few hours away
from her home by car. In addition to her studies and work, she enjoyed exercising, traveling, music, reading, doing things at
home, and being with friends. She had education from a university college and had recently been recruited to work for a
large international company. She was proud of her accomplishments and looked forward to a new and interesting phase in
her life. Within a few minutes, her life unexpectedly changed and she began the demanding process of adjusting to a life with
stroke and aphasia (Demographic data, log notes).
The Nurse
The nurse was a woman who was approximately 50 years old. She had been an RN, a master in nursing science, and was at the
time a PhD student. She was trained for the current intervention by an educational program developed for the intervention
and via supervision from speech-and-language therapists from a national competence center and from a stroke unit at a
university hospital. She had experiences in interacting with persons with aphasia in earlier studies and from experiences with
relatives who had aphasia.
Figure 1. Presentation of the participants

the participant in this case differed from the others in
terms of gradually improving writing abilities and the
creative use of the worksheets.

Data Collection
Data were obtained from multiple sources using various
methods. We assumed that triangulation had a significant
potential to expand the depth and breadth of the data
(Farmer, Robinson, Elliott, & Eyles, 2006) given the
limited ability of persons with aphasia to produce rich
text. Triangulation is generally recommended to improve
the trustworthiness of case studies (Patton, 2002; Stake,
2005; Yin, 2009). This article is informed by the data
sources and methods, which are described below.
A total of 13 individual encounters between the participant with aphasia and the nurse were conducted during the
first year following the stroke. We used participant observation to obtain an insider view of the process (Malterud,
2001). Notes were taken immediately following each
encounter including context, place, time, content, use of
communication resources and worksheets, comments, and
reflections. Quotes from the notes are referred to as “log
notes” in the findings section. In addition, we used 16 worksheets during the intervention. Demographic and medical
data were gathered by members of the multidisciplinary
team at the hospital and provided us with background
information.
Three qualitative semistructured interviews were conducted with the participant at 2 weeks, 6 months, and 12
months after the intervention ended. These interviews
were recorded on video to support the production of
detailed interview text. The first interview focused on the
experiences of participating in the intervention program

and the impact of the program on various dimensions of
quality of life (i.e., mood, relationships, activity, and selfesteem). Interviews 2 and 3 were follow-up interviews
based on the same themes and relevant topics articulated
in the previous interview(s).

Participants
The participants involved in the coconstruction of narratives in this case were a young woman with aphasia (given
the pseudonym Maria) and a specially trained nurse
(referred to as the nurse throughout the text). The nurse was
the primary researcher and the first author of this article.
Figure 1 gives a short presentation of the participants.

Context
Maria entered the intervention program 4 weeks after the
onset of her stroke while she was still a patient in the hospital. The encounters took place in various locations based
on where Maria was in her trajectory. Three encounters
took place at the hospital, two took place in a rehabilitation
unit, and eight occurred in her home. The first and the third
follow-up interviews took place in her home, and the
second occurred in a conference room at the hospital.
The partnership between Maria and the nurse was
based on active participation in which the patient’s experiences and knowledge and the professional’s experiences and knowledge were considered to be of equal
importance in the collaborative process (Zoffmann,
2004). Both Maria and the nurse were active as both tellers and listeners, although the nurse, as the nonaphasic
partner, had a special professional responsibility to facilitate the conversations and keep them going (Kagan,

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1306		

Qualitative Health Research 22(10)

1998). Quotes from the interviews, the worksheets, and
the log notes were translated from Norwegian to English.
The quotes from Maria do not fully reflect the language
disorder but were adjusted slightly to convey the meaning as clearly as possible.

Ethical Considerations
Persons with aphasia are at risk of emotional harm, disempowerment, and lack of acknowledgment because of their
communication disability. Thus, working with persons
with aphasia requires careful ethical sensitivity in both
clinical practice and research (Lloyd, Gatherer, & Kalsy,
2006; Morse; Sundin, Norberg, & Jansson, 2001). In this
case, Maria experienced sudden dramatic changes caused
by a serious disease, stroke. The nurse met the participant
during a critical phase of life, both in the hospital and at
home. Maria gave the nurse access to personal and private
observations and information. Ethical sensitivity was
stressed during the entire process (Morse, 2007; Weaver,
Morse, & Mitcham, 2008). Single-case studies are prone
to threaten confidentiality and anonymity. Names and
demographics have been changed, and Maria read and
affirmed this presentation prior to publication. Considering
the nurse’s powerful role in constructing the narrative of a
person with aphasia (Murray, 2000), the asymmetry in
their relationship with regard to role, position, knowledge,
language, and health status was reflected on and respected.
There was no conflict between the therapeutic goals and
the research goals. Care and security had priority over
research goals during the process.
Written informed consent was obtained using a language therapist at the hospital prior to initiation of the
study. Oral and written information was communicated
using adjusted language and illustrated communication
resources. The consent to participate was repeated during
the longitudinal intervention period (Usher & Arthur,
1998). A separate written informed consent was obtained
before the in-depth interviews, which were recorded
on video. The project was approved by the Regional
Committee for Medical and Health Research Ethics and
the Norwegian Social Science Data Services.

Analysis
Data were analyzed from a hermeneutic-phenomenological
approach (Kvale & Brinkmann, 2009; Ricoeur, 1976,
1978, 1980, 1984). Linguistic data (text) were understood to encompass all expressions, including symbols,
signs, words, images, pictograms, paintings, drawings,
and illustrations. Mutual understanding relies on sharing
a common sphere of meaning. The linguistic data
expressed by Maria were affected by her limited vocabulary

and changes in her syntactic, semantic, and pragmatic
use of language, which in turn affected the entire text
(Damico & Simmons-Mackie, 2003). Following Ricoeur
(1978), our ideas were supported by metaphorical thinking. According to him, the metaphorical process plays a
semantic role and contributes value to the meaning of a
text through its ability to “set before the eyes” a pictorial
dimension of imagination and feelings, thereby enhancing the full cognitive intent. According to Ricoeur
(1984), narrative time is composed of two dimensions,
the episodic and the configurational. The narratives are
temporal and made up of events (episodes), and these
events are rendered significant wholes by means of a
plot (a configuration). By articulating relationships
between events, people can give meaning to both past
events and possible future events. Our understanding
was developed through a continuous dialectic and a process of interpreting the whole from various parts that
lasted throughout the entire analytical process.
The analytical process encompassed three main
phases: naïve reading, structural analysis, and comprehensive understanding (Lindseth & Norberg, 2004). In
the first phase, the entire text from each different data
source was read to obtain an overall impression of the
process of coconstructing stories. Reflections from these
naïve readings resulted in the structural analyses, in
which meaning units related to the process of storytelling were identified (Riessman, 2001). Accounts related
to characteristics of the partnership, the content of the
stories, how the stories were coconstructed (i.e., interactions, expressions, facilitation, use of communication
recourses), roles in the interaction, the timeline, and contextual factors were sorted out and thematized. Each of
the data sources was analyzed separately.
The qualitative interviews recorded on video were
viewed and listened to and transcribed verbatim, and the
transcripts were read several times to sustain the meaning of the text. Events that Maria emphasized as important in the follow-up interviews shed light above and
beyond the data from the log notes and the worksheets.
Data from one source were found to complement data
from other sources. Figure 2 gives an illustration from
the structural analysis and shows the profile of Maria’s
“journey of recovery” during the collaboration process.
The profile is related to the great-trial-of-strength metaphor. An uphill direction indicates that Maria was experiencing difficult challenges and distress, whereas a
downhill direction indicates that things were getting
easier. The timeline shows how the encounters were allocated and when the interviews took place.
In the last phase, our understanding was deepened by
reflections on our preliminary findings from the naïve
reading and the structural analysis. The subthemes were

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1307

Bronken et al.

Figure 2. The profile of Maria’s “journey of recovery”

The illustration is based on the analysis of data and was created by the authors. Maria affirmed the illustration.

reflected on in light of the aim of this article. A dialectical
comparison of the events (references in the text) and
interpretations of their meaning (sense) were viewed in
the context of relevant narrative theory and abstracted
into three main themes: the need to tell, opportunity to
tell, and help telling.

Findings
In the following text, we present excerpts from significant parts of the partnership formed between Maria and
the nurse to coconstruct stories. These excerpts illuminate the process of how they interacted. To some extent,
they are presented as a chronological succession of
encounters to illustrate the evolution of the process over
time.

Entering a Strange New World
The first encounter between Maria and the nurse took
place at the hospital where Maria was still a patient.
Maria’s speech-language therapist participated to support
the communication between Maria and the nurse. After a
mutual presentation, they explored how to best communicate with each other. Maria communicated with single
words, such as “hm,” “yes,” “uff,” and “right,” and by
nodding and using facial expressions. She had lost a
range of words and struggled to understand both spoken
and written language. She could neither read nor write

but recognized a few written words. The nurse spoke
slowly and clearly, highlighted keywords in the worksheets, pointed to visual illustrations, and was vigilant to
Maria’s nonverbal signs. She sought to act in a way that
made Maria feel seen, heard, and acknowledged as a
competent adult person. Maria smiled and appeared
interested in the intervention program.
The nurse invited Maria to tell her about what happened to her when she experienced the stroke. Maria
tried to communicate what happened but struggled to
find words. The nurse listened actively and tried to
encourage her by asking questions, guessing, and helping her to find the words she was searching for. After a
dialogue with questions, answers, guessing, interpretation, and validation, the nurse told Maria the story back
the way that she had interpreted it and wrote it down in
Maria’s worksheets (and in her own log notes). An
excerpt is presented below:
Maria was alone in her flat when she suddenly felt
strange and was unable to move her body normally.
When she finally managed to call the emergency
number, she could not say who she was, where she
lived or what had happened to her. When she
arrived at the hospital, she could not understand
what the “white people” were trying to tell her, nor
could they understand what she said. Stroke was
not on her mind at all. Maria used the words
“strange” and “oh dear,” “uff” several times.

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1308		

Qualitative Health Research 22(10)

Maria concentrated hard to talk and understand and
expressed tiredness after about half an hour. The two
agreed to meet once before transition from the hospital to
a rehabilitation unit.
The second encounter occurred 9 days later. The nurse
initiated the conversation and used a worksheet that
focused on Maria’s life before the onset of the stroke to
better understand who Maria was and the life that the
stroke had interrupted. The nurse encouraged Maria to
tell her about herself, her family, her interests, her values, and her goals. She thought for a while and uttered,
“Yeah . . . what shall I say . . . ?” It was very difficult for
her to know what to talk about and how to express it. As
a result, the nurse asked single questions such as, “Where
do you live? What do you enjoy doing? What is most
important to you now?” Maria sought to answer, but
struggled immensely. For example, Maria was about to
talk about her family but could not remember any names
or places. The nurse encouraged Maria to refer to anything, that is, a direction, a letter, a sign, or something
else. Maria wrote down the letter “S.” The nurse suggested many places beginning with “S,” all of which
were wrong. Maria then corrected the health care worker
by saying, “Not Norway, hm.” She looked around and
grabbed a diary with a map. Finally, they ended in
Sweden. By the use of a combination of talking, writing,
and a toolbox with communication recourses, they both
engaged in a dialectical process to determine significant
fragments of Maria’s background.
The metaphor of the great trial of strength was introduced, and the nurse asked Maria to point out where in
the landscape she imagined that she was. Maria thought
for a while and answered, “Hm . . . difficult . . . do not
know . . . never been sick before.” Her situation was
“new” and “strange,” and she lacked experience and
knowledge. Even if she referred to some frustrating
events in which she was unable to talk or get others to
understand, she was mainly in good spirits and looked
forward to her stay in rehabilitation and to getting
healthy. The nurse wrote the following in her log notes:
Maria seemed optimistic and motivated. The atmosphere was relaxed, and I think we understood each
other. Maria was smiling and seemed satisfied. I
left the encounter with a good feeling. Her young
age and the seriousness of her situation affect me.
In the first follow-up interview, Maria referred to
this period of her trajectory in the following way: “In
the beginning, I believed that my language would
come back, and I could start working again after some
weeks of training, even if the professionals told me
that it would take time and that the outcomes were
unpredictable.”

Behind the Smile,Thoughts
and Feelings Pile Up
Maria and the nurse met twice during Maria’s rehabilitation stay, at 10 and 14 weeks poststroke (also see Figure 2).
For one of the worksheets, the topic was how the participant experienced being a stroke survivor, and the
participant was offered the opportunity to tell her personal “illness story” (i.e., using a poem, song, picture,
drawing, or thing), which is referred to as a fundamental
need following a traumatic event (Frank, 1995, 1998).
Maria had found a picture of a woman walking outdoors
with her dog. The lady was surrounded by an invisible
house. The heading of the picture was, “But, you look so
healthy. . . .” The nurse explored the meaning of this
picture with Maria and asked if she felt locked in,
whether she felt that others did not understand her, and
whether she felt lonely. She nodded and answered in the
following way: “The last you said.” The nurse responded
by saying, “Lonely?” Maria responded, “Yes. . . . Like in
a bubble. . . . Alone.” She referred to an event in which
another patient at the unit had asked her why she was a
patient when she looked so normal. In despair and incapable of answering, she just smiled and left. Internally,
she felt sad, desperate, and in great need of help. She
commented, “If I . . . [she used body language to illustrate paralysis] others could see . . . at least.”
As loneliness, invisible symptoms, and lack of understanding are common challenges and experiences
described in the stroke literature (Stone, 2005; Nyström,
2006; Röding, Lindström, Malm, & Ôhman, 2003), the
nurse verbalized this to Maria as a means of offering emotional support, acknowledging her reactions as common
and hopefully supporting her making her situation understandable (Antonovsky, 1987, 1996). Maria got CDs with
relaxing music, paper, pencil, crayons, and a booklet with
advice for communication (for family and friends) from
the toolbox. Maria appreciated help to deal with alternative ways of expressing other than spoken language. After
this encounter, the nurse wrote the following in her log
notes: “Maria is smiling but looks tired, and her eyes are
sad and blank. I think she is very unhappy. Her suffering
hurts. Smiling depression?”
Four weeks later (three and a half months after her
stroke), Maria was resting in her bed when the nurse
arrived. She had been through a very difficult period
since they last met. To use the metaphor described above,
the terrain was very rough (see Figure 2). The evolving
consequences of her stroke and aphasia had become
clearer to her, and the growing uncertainty she faced was
overwhelming. She demonstrated with her body language
how she was freezing and shaking by putting her own
arms around her chest. The nurse picked up the story
from the former encounter and asked Maria to tell her

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1309

Bronken et al.
how she felt inside and what she was most concerned
about. With tears in her eyes, she expressed exhaustion,
anxiety, loss, grief, uncertainty about treatment, uncertainty about coming home, uncertainty about the outcomes of her illness and the duration of her language
disability, and uncertainty about her work and her relationships. Fragmentarily, she expressed her incomprehensibility and loss in the following way: “Why now! . . .
Do not understand . . . I have lost so much!” (Log notes).
The nurse listened actively, verbalized, mirrored her
interpretations, and helped Maria find words in an effort to
understand Maria’s situation and share in her story. A
sense of coherence is considered essential to human coping, by experiencing life events as comprehensible, manageable, and meaningful (Antonovsky, 1987). The nurse
sought to improve Maria’s understanding of the situation
by sharing knowledge with her regarding the phases in
the trajectory of poststroke survivors (Easton, 1999;
Kirkevold, 2002), common challenges, and the process of
going through crisis and grief (Code & Herrmann, 2003).
Maria’s stories led to conversations about time,
patience with regard to final outcomes, short-term goals,
and attention to improvements as well as activities she
felt positive about. Together, they sorted out what kind of
support she needed at the present moment to be more
confident and to be able to move on in her “race” toward
recovery. They agreed to talk with the staff about Maria’s
worries and to clarify plans concerning her discharge.
Maria wanted the nurse to be an advocate on her behalf
because of her problems with expressing her concerns.
She was exhausted and afraid of forgetting what she
wanted to ask for. This new insight into Maria’s situation,
which was carefully puzzled together during the coconstruction of Maria’s story, affected decision making about
which multidisciplinary services she should receive in the
community after coming home. After the encounter, the
nurse wrote in her log notes,
Maria initiated the encounters at the rehabilitation
unit by calling me. I interpreted the first call as a
good sign of her improving language skills and
self-determination. Looking back, I actually think
that this was a desperate call, which I didn’t understand at that time: Maria was a patient at a specialized rehabilitation hospital. Several months later,
she told me that she hadn’t been able to talk with
the staff about her emotional and cognitive pondering. The staff was so too busy.

Cannot Live Like This!
The nurse picked up threads from the former encounter
and invited Maria to talk about her experiences of going

Figure 3. Worksheet about mood

Copy of a worksheet concerning mood in everyday life that Maria
used to express herself during the intervention. The unbolded text
was written by Maria. The quotes were translated from Norwegian to
English by the authors.

home. Maria was happy about being home, but new challenges mounted. At the rehabilitation unit, she had envisioned receiving support from a multidisciplinary team.
Where were they? When would they come? How could
she get in contact with them as she struggled to make a
call, read, and write? What did they expect her to do?
How? It was very complicated for her to navigate the
health care system and to gather needed information.
Again, she was overwhelmed by anxiety, uncertainty,
despair, and exhaustion. She needed help from someone
who could act on her stories.
Gradually, as Maria’s language abilities improved,
she started to write in the worksheets on her own prior to
the encounters. She put a great deal of effort into composing the words and sentences, and expressed uncertainty concerning what she had written and whether it
was comprehensible to the nurse. Some of the worksheets were outlined as unfinished sentences. Figure 3
gives an example of a worksheet concerning mood that
Maria wrote 5 months after her stroke.

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1310		

Qualitative Health Research 22(10)

Paying attention to Maria’s reflections on the worksheets by mirroring them (e.g., “Tell me what you’re dealing with that makes you sleepless?”) revealed new stories.
For example, several times at night, she had to control
whether she was able to move and talk, which in turn
made her sleepless and engendered anxiety and exhaustion. This story reflected fear of a new stroke, which was
then discussed. The nurse listened actively and engaged in
Maria’s stories by questioning, interpreting, framing, and
sharing relevant professional knowledge with her, such as
how to enhance “general resistance resources” such as
sleep, physical activity, social support, food, and pleasure
(Antonovsky, 1996). The constructed stories were used to
set new goals and engage her in problem solving.
The utterances in Maria’s worksheet (Figure 3)
reflected how she linked elements of the past, present,
and future (Ricoeur, 1976, 1980, 1984) and how she
struggled to make sense of and handle her new life situation. At that moment, she felt lonely and uncertain and
had many thoughts and feelings to handle, yet she continued to look to the future with dreams and a belief in
obtaining a new life, and being able to enjoy it with
friends, as she had done in the past. These thoughts and
reflections kept her up at night. It is well known that the
way a person comes to terms with loss and change influences the meaning given to an illness (Kaufman, 1988, p.
218). Assistance to talk about thoughts, feelings, her condition, and her new everyday experiences was emphasized as the most important support offered during the
intervention, as reflected in the first follow-up interview:
The nurse helped me to give order to all the
thoughts and feelings that were swirling around all
the time, which I didn’t know where to put or what
to do with. It helped me to find words and to put
words to my thoughts and feelings.
Maria emphasized the importance of “not being left
alone.” Her need to talk was illuminated in the following
quote:
In the beginning, I wanted to talk about the stroke
all the time. With friends you have to give and
take. With the nurse, I could just take and talk
about myself all the time. It was very good for me
to pay attention to other things than my body, like
my thoughts and feelings, which were the most
difficult for me, so you didn’t have to bear them
inside.

The Broken Mirror
Maria presented herself as a social person who enjoyed
being with friends and taking part in social activities.

Figure 4. Building a new self

A graphical illustration that Maria used to communicate her experiences of a changed self-image and her reconstruction of self. Reprinted from “Bygge opp et nytt jeg. [Build up a new self],” in Ja, visst ble
livet annerledes. Erfaringer og tanker om å leve med ervervet hjerneskade
[Yes, Life Became Different. Experiences and Thoughts About Living With
Acquired Brain Injury], edited by K. Sæther and illustrated by E. Ribe,
1999, p. 37. Copyright 1999 by KReSS. Reprinted with permission.

After the stroke, social activity was very demanding and
exposed her to many situations in which her self-concept
and identity were threatened. Several times she referred
to a picture of a woman in front of a broken mirror, which
is shown in Figure 4 above.
Maria was concerned about what others thought about
her and was afraid of being regarded as simple and uninteresting: She expressed the negative feelings she had
when she was at a loss for words, did not know what to
say, was misunderstood, or fell off in conversations, as
reflected in the follow-up interview: “Expressing myself
like a child who is learning to talk when you are an adult
is no pleasure. It does something to you!”
Her social role and self-image had changed. There was
a mismatch between her desire and ability. Lack of
energy, problems with understanding and talking, and
intolerance for noise and sounds made it very difficult for
her to keep up. Stories of daily events were “unpacked”
and coconstructed by verbal exchanges, interpretation,
questions, and validation. The nurse verbalized her interpretation of what she imagined was difficult in the situation back to Maria. She responded to and validated
thoughts and feelings by using phrases such as “yeah

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1311

Bronken et al.

wanted to talk about. . . . I like to think and talk
through pictures, but as I gradually started to write
better, that was good too. The worksheets were a
useful push to start writing and gave me something
concrete to focus on.

It Is Getting Better and Better

Figure 5. Worksheet about problem solving

Copy of a worksheet concerning problem solving that Maria used to
express her thoughts, feelings, and assessments during the intervention. The unbolded text was written by Maria. The quotes were
translated from Norwegian to English by the authors.

exactly.” Social affirmation is normally an important part
of self-construction, self-esteem, and identity development (Atkinson, 2001; Holstein & Gubrium, 2000).

Puzzle Myself Together Again
Maria and the nurse continued working systematically
with the topics on the worksheets. Maria gradually wrote
down more about her reflections prior to the encounters.
Figure 5 shows a worksheet concerning problem solving
that was written by Maria six and a half months after
stroke onset. The statements that Maria wrote on the
worksheet, illustrated in Figure 5, reflected how the
stroke disrupted her life and brought her into a new situation in which she had to adjust and find her new role.
Maria’s retrospective assessment of the methodological
approach of working to coconstruct stories was reflected
in the follow-up interview:
I think the “booklet” was very good. It was systematic at the same time as I could decide what I

Approximately 7 months after the stroke, Maria seemed
to arrive at a turning point in her “journey.” Her language
abilities improved a great deal. She wrote more on the
worksheets, and her stories captured a wider variety of
topics. She needed less help from the nurse to initiate,
frame, and find words and to transform her experiences
into stories. The content in her stories changed from “suffering” toward more “acting and coping” (i.e., they did
not focus on what she was no longer able to do). They
were about things she had done, how she had handled different situations and future plans, and daily challenges.
She had initiated a visit to her colleagues at work, tidied
up her storeroom, been to a public office by herself,
walked in the park, and visited some of her friends. The
nurse listened to the stories, cheered her progress, followed up on previous topics, and engaged in the conversation by sharing her views and relevant knowledge. In
the last part of the partnership between Maria and the
nurse, Maria set new goals and was about to return to
work, initiate a close relationship, and redecorate a new
house. She was prepared to end the partnership and “stand
on her own feet,” as she said.

The Relationship
Maria regarded the linguistic facilitation during the collaboration process to be very important. She felt understood both in terms of her expressions and her situation
as a stroke survivor with aphasia. The relationship and
the collaboration process were described with words
such as open, trusting, flexible, and good. The following
quote from the first follow-up interview reflects her
assessment:
There was no pressure or anything like that, it just
helped me. I felt that I could decide nearly everything actually; at the same time, it helped me to
talk, to get words for things, so that was very good.
. . . Talking with a person outside of my friend and
family network who had knowledge of the field
was helpful. The nurse knew what problems occur
with stroke and aphasia.

Discussion
We have illustrated how a person with aphasia and a
nurse collaborated to coconstruct stories within the context

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1312		

Qualitative Health Research 22(10)

of a complex clinical intervention aimed at promoting
psychosocial well-being after stroke. The discussion is
organized into the three main themes identified through
our comprehensive analyses: the need to tell, opportunity
to tell, and help telling.

The Need to Tell
Maria knew little about stroke and aphasia, and the sudden change in her identity from being a healthy person to
being sick was incomprehensible to her. The disruption of
her well-functioning life put her in a chaotic state, fraught
with fear, uncertainty, grief, and loss, which she lacked
the experience to handle. Her great need to talk and her
inability to do so engendered in her a frightening loneliness, which she often referred to. She emphasized the
importance of not being left alone with her thoughts and
feelings. Sharing stories can function as a way of breaking
through the wall of isolation and loneliness (Frank, 1998)
and of regaining structure and order in the chaos that follows illness, change, and disruption (Bury, 1982; Charon,
2001; Frank, 1995, 2000; Kleinman, 1988). Narratives are
grounded in language and communication (Polkinghorne,
1988), which means that persons with language disability
are robbed of a fundamental tool in their recovery
(Shadden & Hagstrøm, 2007).
The ability to talk, read, and write is normally taken for
granted. Language disability and cognitive processes are
invisible and difficult to understand (Stone, 2005; Röding
et al., 2003), and the narratives of persons with aphasia
stand at risk of being unvoiced, as illustrated in this case.
In our study, the narrative needs of patients were focused
on and cultivated using a longitudinal partnership. Maria’s
social life suffered in several ways. The way she was able
to present and position herself to others and her capacity
to participate in social settings had changed. She often felt
poorly understood and received strange feedback from her
natural environment, which she found threatening to her
self-esteem. Coconstructing stories about these experiences, receiving responses from the nurse, and discussing
ways of preparing for and acting in challenging situations
were described as beneficial in the follow-up interviews.
Stories are usually intentional and adjusted to different
social settings with the purpose of presenting and positioning oneself in a certain way (Holstein & Gubrium,
2000; Riessman, 2001). The partnership of storytelling
was helpful to Maria both in terms of the process of
reconstructing an altered self (Atkinson, 2001; Bruner,
1991) and as a means of receiving social affirmation,
acknowledgment, and professional legitimation of her
situation (Atkinson; Bury, 1982; Holstein & Gubrium).
The interaction between the partners might serve as a
beneficial compensation for Maria’s reduced ability to be
socially active and for the altered responses she received

from her natural environment. For persons with aphasia,
storytelling is a great challenge to carry out (Hinckley,
2010; Parr, 2007; Shadden & Hagström, 2007), and they
need facilitation and support. Our findings suggest that
storytelling for this target group needs facilitation and
support, and coconstructed stories might serve as an
important resource for both coping and problem solving.

Opportunity to Tell
The process of coconstructing stories was implemented
within the context of an intervention focusing on psychosocial issues. By virtue of giving specific attention to
the psychosocial consequences of stroke and putting
them on the agenda as common and “normal,” the nurse
gained access to stories of a psychosocial nature that
easily could have gone unvoiced. Persons with aphasia
need time to communicate and must put a great deal of
effort and concentration into understanding others and
expressing themselves. It is often difficult for them to
initiate a conversation and to know what to talk about
and how to express it. In busy health care settings, conversations often take place during practical care. Maria
was not able to talk and do things at the same time.
This intervention was based on dialogues, and all
attention was paid to the communicative interaction. The
opportunity to coconstruct stories was facilitated by
environmental and structural factors. Organized time
preserved for talking during the first year poststroke
made it possible to coconstruct stories, maintain continuity, follow up, pay attention to changes, and connect the
past, present, and future. The mutual, cumulative knowledge that the partners gained about one another and their
personal ways of communicating engendered the storytelling. Planned and organized time preserved for talking
about psychosocial issues longitudinally is necessary to
meet the narrative needs of persons with aphasia.

Help Telling
Assistance in coconstructing stories was provided in
multiple ways.
The partnership of storytelling. Maria described the relationship as open and trusting and expressed a feeling of
deciding nearly everything, including what to talk about.
A therapeutic relationship and trust are important in any
caring practice (Skirbekk, Middelthon, Hjortdahl, & Finset,
2011) but crucial in interactions with persons with aphasia because of their reduced ability to express both needs
and reservations (Kirsh & Tate, 2006; Lloyd et al., 2006;
Sundin & Jansson, 2003; Sundin, Jansson, & Norberg,
2002). Maria was in a vulnerable situation, and there was
asymmetry with regard to knowledge, position, and language ability in the partnership (Murray, 2000).

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1313

Bronken et al.
The relationship between Maria and the nurse evolved
as a cumulative process during the course of a longitudinal intervention lasting one year. The growing body of
knowledge concerning Maria’s life and world exchanged
during the interactions and gathered by writing down systematic and detailed information after every encounter
increased the likelihood of reaching shared stories and
mutual understanding. The quality of any relationship
likely influences the stories that are told, and the outcome
of the recovery process can be enhanced or hindered
depending on this relationship (Frank, 1995, 2000;
Hinckley, 2010). Storytelling is a relational activity that
calls for someone to listen, respond, empathize, and act
(Charon, 2005; Frank, 2000; Riessman, 2001).
The role of the coconstructer in the partnership. Aphasia
disturbs the natural dynamic interplay within an interaction. An active listening and interpreting role during the
coconstruction of narratives was a key element in the process. To listen attentively and to be engaged during storytelling is acknowledged as an ethical responsibility
(Charon, 2001; Frank, 1998; Kleinman, 1988). In Maria’s
case, chaos narratives dominated 3 to 7 months after her
stroke, as this was the most difficult phase in her trajectory. The listener had to provide active help and engagement by framing, interpreting, encouraging, asking, and
using illustrated communication resources to reveal and
construct the stories. In interacting with a person suffering
from aphasia, one is not simply receiving the gift of a
story by just listening. Active cocreation of stories also
requires participation, support to express, facilitation,
empathy, interpretation, and personal engagement.
A central principle in the Supported Conversation for
Adults With Aphasia method is the responsibility of the
nonaphasic conversation partner to keep the conversation
going (Kagan, 1998; Kagan et al., 2001). In the follow-up
interviews, Maria said that throughout the partnership,
she felt understood both in terms of her compromised
language and with respect to her new situation. Knowledge
from the field of stroke and aphasia helped the nurse to
understand signs and expressions and to respond to them
appropriately. Metaphorical thinking played an important
role in the interpretative process of understanding syllables, single words, incomplete sentences, pictures, and
gestures. The continuous process of validating the interpretations was an iterative part of the process of coconstructing narratives. According to Ricoeur (1978), the
dialectic between explanation and interpretation evident
in questioning and answering can be an important part of
promoting understanding.
Conversations, worksheets, and metaphors. The methodological approach of using a combination of conversations, worksheets, and metaphors revealed a range of
stories. Maria regarded the worksheets as good tools for
reflecting and consciousness raising. Topics in the

worksheets were starting points for conversation. Written
text, illustrations, pictograms, and opportunities to
express herself in various ways were regarded as stimulating and helped her to focus on topics of concern to her.
Gradually, as her language abilities improved, she also
began writing down words and sentences, which in turn
evolved into stories about events and experiences.
The great-trial-of-strength metaphor helped to reveal
stories about experiences from a demanding and shifting
“landscape” that was complete with ups and downs, challenges to overcome, the need for motivation and cheering,
loneliness, hidden handicaps, and threats to identity, all of
which easily could have been unvoiced and overlooked
without the facilitation and resources provided to her. Otto
(2000) argued that metaphors can both enhance and transform the collective knowledge of a field, serving as a communication tool to express experiences and needs and
communicate them in a way that is easy to understand,
accept, and remember.
The focus of rehabilitation for persons with aphasia is
often held on training language skills, which obviously is an
important tool for storytelling, but storytelling reaches
beyond language skills. The need for narrating about oneself, one’s history, and one’s experiences in everyday life
and with illness experiences is a basic human need and a
resource for recovery that is threatened for persons with
aphasia. Hjelmblink et al. (2007) also found that the aphasia
diagnosis misled both the person with aphasia and the
health care professionals to focus on only speech-language
therapy. Our experiences imply that facilitation and support
of storytelling should be targeted by nurses and other health
care professions in rehabilitation programs to this group.

Strengths and Limitations
Active participant observation during the intervention provided us with rich information from an insider’s view of the
partnership of storytelling, which improved our understanding of the process. Combining active participation and
adequate observation and distance in a setting in which one
is personally involved for a relatively long time is challenging (Malterud, 2001; Patton, 2002). Information from three
retrospective follow-up interviews with Maria (recorded on
videotape) and her affirmation of the presentation in this
article are seen to improve the trustworthiness of our findings (Malterud). The findings from the different data
sources were complementary. The researchers’ preunderstanding of storytelling as an active component to improve
adjustment and psychosocial well-being poststroke
(Kirkevold et al., 2012) can be a strength in the sense of
paying attention to this dimension of recovering, but also a
risk for subjective selection of quotes (Malterud). To counteract the risks, we took part in a reflexive analytical process and questioned the text for competing interpretations.

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1314		

Qualitative Health Research 22(10)

Interviewing a person with aphasia threatens the gold
standard of qualitative interviews, which includes the use
of questions with an open ending to obtain spontaneous
and rich interview text (Kvale & Brinkmann, 2009). When
the interviews with Maria were performed, she talked quite
fluently, even if her vocabulary was reduced and she struggled to express herself in the way she wanted to. The nurse
and Maria were confident in their communication and had
implicit and mutual knowledge about the collaboration
process, which enhanced the interview process and followup questioning. Maria was much younger than the mean
age of the stroke population. She had a college education
and had interests in reading, writing, and drawing, which
might have influenced her active engagement in the interactive process. The merits of our approach and the methodological facilitation of storytelling need more research on a
larger scale.
Acknowledgments
We acknowledge the participants with aphasia, health care professionals, and experts collaborating in the research project.
Thanks to Helge Ness (AR Smith Grafisk) for assisting us with
graphical layout and to copyright holder KReSS for permission to use and reproduce artwork.

Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.

Funding
The authors disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article:
We received grants from the Norwegian Extra Foundation for
Health and Rehabilitation and the Norwegian Women’s Public
Health Association. In addition, the study was supported by the
University of Oslo and the Hedmark University College.

References
Antonovsky, A. (1987). Unraveling the mystery of health: How
people manage stress and stay well. San Francisco, CA:
Jossey-Bass.
Antonovsky, A. (1996). The salutogenic model as a theory to
guide health promotion. Health Promotion International,
11(1), 11-18. doi:10.1093/heapro/11.1.11
Atkinson, R. (2001). The life story interview. In J. F. Gubrium
& J. A. Holstein (Eds.), Handbook of interview research:
Context and method (pp. 121-140). Thousand Oaks, CA:
Sage. Thousand Oaks, CA: Sage.
Becker, G. (1997). Disrupted lives: How people create meaning
in a chaotic world. Berkeley: University of California Press.
Brown, K., Worrall, L., Davidson, B., & Howe, T. (2010).
Snapshots of success: An insider perspective on living
successfully with aphasia. Aphasiology, 24(10), 1267-1295.
doi:10.1080/02687031003755429

Bruner, J. (1991). The narrative construction of reality. Critical
Inquiry, 18(1), 1-21. Retrieved from http://www.jstor.org/
stable/1343711
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167-182. doi:10.1111/14679566.ep11339939
Charon, R. (2001). Narrative medicine. Journal of the American
Medical Association, 286(15), 1897-1902. doi:10.1001/
jama.286.15.1897
Charon, R. (2005). Narrative medicine: Attention, representation, affiliation. Narrative, 13(3), 261-270. doi:10.1353/
nar.2005.0017
Ch’Ng, A. M., French, D., & Mclean, N. (2008). Coping with the
challenges of recovery from stroke. Journal of Health Psychology, 13(8), 1136-1146. doi:10.1177/1359105308095967
Code, C. (2003). The quantity of life for people with chronic
aphasia. Neuropsychological Rehabilitation, 13, 379-390.
doi:10.1080/09602010244000255
Code, C., Hemsley, G., & Herrmann, M. (1999). The emotional impact of aphasia. Semin Speech Lang, 20(1), 19-31.
doi:10.1055/s-2008-1064006
Code, C., & Herrmann, M. (2003). The relevance of emotional and psychosocial factors in aphasia to rehabilitation. Neuropsychological Rehabilitation, 13(1), 109-132.
doi:10.1080/09602010244000291
Cruice, M., Worall, L., Hickson, L., & Murison, R. (2003).
Finding a focus for quality of life with aphasia: Social and
emotional health, and psychological well-being. Aphasiology, 17, 333-353. doi:10.1080/02687030244000707
Damico, J. S., & Simmons-Mackie, N. N. (2003). Qualitative
research and speech-language pathology: A tutorial for the
clinical realm. American Journal of Speech-Language Pathology, 12(2), 131-143. doi:10.1044/1058-0360(2003/060)
Easton, K. L. (1999). The poststroke journey: From agonizing
to owning. Geriatric Nursing, 20(2), 70-76. doi:10.1053/
gn.1999.v20.97009
Engelter, S. T., Gostynski, M., Papa, S., Frei, M., Born, C.,
Ajdacic-Gross, V., . . . Lyrer, P. A. (2006). Epidemiology
of aphasia attributable to first ischemic stroke: Incidence,
severity, fluency, etiology, and thrombolysis. Stroke, 37(6),
1379-1384. doi:10.1161/01.STR.0000221815.64093.8c
Faircloth, C. A., Boylstein, C., Rittman, M., & Gubrium, J. F.
(2005). Constructing the stroke: Sudden-onset narratives of
stroke survivors. Qualitative Health Research, 15, 928-941.
doi:10.1177/1049732305277842
Faircloth, C. A., Boylstein, C., Rittman, M., Young, M. E., &
Gubrium, J. (2004). Sudden illness and biographical flow in
narratives of stroke recovery. Sociology of Health & Illness,
26(2), 242-261. doi:10.1111/j.1467-9566.2004.00388.x
Farmer, T., Robinson, K., Elliott, S. J., & Eyles, J. (2006).
Developing and implementing a triangulation protocol for
qualitative health research. Qualitative Health Research,
16, 377-394. doi:10.1177/1049732305285708
Frank, A. W. (1995). The wounded storyteller: Body, illness,
and ethics. Chicago: University of Chicago Press.

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1315

Bronken et al.
Frank, A. W. (1998). Just listening: Narrative and deep illness.
Families, Systems, & Health, 16(3), 197-212. doi:10.1037/
h0089849
Frank, A. W. (2000). The standpoint of storyteller. Qualitative Health Research, 10, 354-365. doi:10.1177/
104973200129118499
Fure, B., Wyller, T. B., Engedal, K., & Thommessen, B. (2006).
Emotional symptoms in acute ischemic stroke. International Journal of Geriatric Psychiatry, 21(4), 382-387.
doi:10.1002/gps.1482
Hilari, K. (2011). The impact of stroke: Are people with aphasia different to those without? Disability & Rehabilitation,
33(3), 211-218. doi:10.3109/09638288.2010.508829
Hilari, K., & Byng, S. (2009). Health-related quality of life
in people with severe aphasia. International Journal of
Language & Communication Disorders, 44(2), 193-205.
doi:10.1080/13682820802008820
Hilari, K., Northcott, S., Roy, P., Marshall, J., Wiggins, R. D.,
Chataway, J., & Ames, D. (2010). Psychological distress
after stroke and aphasia: The first six months. Clinical Rehabilitation, 24(2), 181-190. doi:10.1177/0269215509346090
Hillis, A. E. (2007). Aphasia: Progress in the last quarter of a
century. Neurology, 69(200), 200-213. doi:10.1212/01.
wnl.0000265600.69385.6f
Hinckley, J. (2010). Hope for happy endings: Stories of clients
and clinicians. Topics in Stroke Rehabilitation, 17(1), 1-5.
doi:10.1310/tsr1701-1
Hjelmblink, F., Bernsten, C. B., Uvhagen, H., Kunkel, S., &
Holmström, I. (2007). Understanding the meaning of rehabilitation to an aphasic patient through phenomenological
analysis—A case study. International Journal of Qualitative Studies on Health and Well-Being, 2(2), 93-100.
doi:10.1080/17482620701296358
Holstein, J. A., & Gubrium, J. F. (2000). The self we live by:
Narrative identity in a postmodern world. New York:
Oxford University Press.
Hydén, L.-C. (1997). Illness and narrative. Sociology of Health &
Illness, 19(1), 48-69. doi:10.1111/j.1467-9566.1997.tb00015.x
Kagan, A. (1998). Supported conversation for adults with
aphasia: Methods and resources for training conversation partners. Aphasiology, 12(9), 816-830. doi:10.1080/
02687039808249575
Kagan, A., Black, S. E., Duchan, J. F., Simmons-Mackie, N., &
Square, P. (2001). Training volunteers as conversation partners
using “supported conversation for adults with aphasia” (SCA):
A controlled trial. Journal of Speech, Langguage, and Hearing
Research, 44(3), 624-638. doi:10.1044/1092-4388(2001/051)
Kaufman, S. (1988). Illness, biography, and the interpretation
of self following a stroke. Journal of Aging Studies, 2(3),
217-227. doi:10.1016/0890-4065(88)90002-3
Kauhanen, M. L., Korpelainen, J. T., Hiltunen, P., Määttä, R.,
Mononen, H., Brusin, E., . . . Myllylä, V. V. (2000). Aphasia,
depression, and non-verbal cognitive impairment in ischaemic stroke. Cerebrovascular Diseases, 10(6), 455-461.
doi:10.1159/000016107

Kirkevold, M. (2002). The unfolding illness trajectory of
stroke. Disability & Rehabilitation, 24(17), 887-898.
doi:10.1080/09638280210142239
Kirkevold, M., Bronken, B. A., Martinsen, R., & Kvigne, K.
(2012). Promoting psychosocial well-being following a
stroke: Developing a theoretically and empirically sound
complex intervention. International Journal of Nursing
Studies, 49, 386-397. doi:10.1016/j.ijnurstu.2011.10.006
Kirsh, B., & Tate, E. (2006). Developing a comprehensive
understanding of the working alliance in community mental health. Qualitative Health Research, 16, 1054-1074.
doi:10.1177/1049732306292100
Kleinman, A. (1988). The illness narratives: Suffering, healing,
and the human condition. New York: Basic Books.
Kvale, S., & Brinkmann, S. (2009). Interviews: Learning the craft
of qualitative research interviewing. Thousand Oaks, CA: Sage.
Lindseth, A., & Norberg, A. (2004). A phenomenological
hermeneutical method for researching lived experience.
Scandinavian Journal of Caring Sciences, 18(2), 145-153.
doi:10.1111/j.1471-6712.2004.00258.x
Lloyd, V., Gatherer, A., & Kalsy, S. (2006). Conducting qualitative interview research with people with expressive
language difficulties. Qualitative Health Research, 16,
1386-1404. doi:10.1177/1049732306293846
Malterud, K. (2001). The art and science of clinical knowledge: Evidence beyond measures and numbers. Lancet,
358(9279), 397-400. doi:10.1016/s0140-6736(01)05548-9
Mattingly, C. (1998). Healing, dramas and clinical plots: The
narrative structure of experience. Cambridge, UK: Cambridge University Press.
Morse, J. M. (2007). Ethics in action: Ethical principles for
doing qualitative health research. Qualitative Health
Research, 17, 1003-1005. doi:10.1177/1049732307308197
Moss, B., Parr, S., Byng, S., & Petheram, B. (2004). “Pick me
up and not a down down, up up”: How are the identities
of people with aphasia represented in aphasia, stroke and
disability websites? Disability & Society, 19(7), 753-768.
doi:10.1080/0968759042000284222
Murray, M. (2000). Levels of narrative analysis in health psychology. Journal of Health Psychology, 5(3), 337-347.
doi:10.1177/135910530000500305
Naess, H., Hammersvik, L., & Skeie, G. O. (2008). Aphasia among
young patients with ischemic stroke on long-term followup. Journal of Stroke and Cerebrovascular Diseases, 18(4),
247-250. doi:10.1016/j.jstrokecerebrovasdis.2008.10.005
Næss, S. (2001). Livskvalitet som psykisk velvære [Quality of
life as psychological well-being]. Tidsskrift for Den norske
legeforening, 16(121), 1940-1944. Retrieved from http://
tidsskriftet.no/article/357518
Natterlund, B. S. (2010). A new life with aphasia: Everyday activities and social support. Scandinavian Journal
of Occupational Therapy, 17(2), 117-129. doi:10.3109/
11038120902814416
Nyström, M. (2006). Aphasia—An existential loneliness: A
study on the loss of the world of symbols. International

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015

1316		

Qualitative Health Research 22(10)

Journal of Qualitative Studies on Health and Well-Being,
1(1), 38-49. doi:10.1080/17482620500501883
Otto, M. W. (2000). Stories and metaphors in cognitive-behavior
therapy. Cognitive and Behavioral Practice, 7(2), 166-172.
doi:10.1016/s1077-7229(00)80027-9
Parr, S. (2004). Living with severe aphasia—The experience
of communication impairment after stroke. Hove, UK:
Pavilion.
Parr, S. (2007). Living with severe aphasia: Tracking social
exclusion. Aphasiology, 21(1), 98-123. doi:10.1080/
02687030600798337
Patton, M. Q. (2002). Qualitative research & evaluation methods (3rd ed.). Thousand Oaks, CA: Sage.
Polkinghorne, D. E. (1988). Narrative knowing and the human
sciences. Albany: State University of New York Press.
Ribe, E. (1999). Bygge opp et nytt jeg [Build up a new self]. In
K. Sæther (Ed.), “Ja visst ble livet annerledes.” Erfaringer
og tanker om å leve med en ervervet hjerneskade [“Yes,
life became different.” Experiences and thoughts about living with an acquired brain injury] (p. 37). Oslo, Norway:
KReSS.
Ricoeur, P. (1976). Interpretation theory: Discourse and the
surplus of meaning. Fort Worth: Texas Christian University
Press.
Ricoeur, P. (1978). The metaphorical process as cognition,
imagination, and feeling. Critical Inquiry, 5(1), 143-159.
Retrieved from http://www.jstor.org/stable/1342982
Ricoeur, P. (1980). Narrative time. Critical Inquiry, 7(1), 169-190.
Retrieved from http://www.jstor.org/stable/1343181
Ricoeur, P. (1984). Time and narrative (Vol. 1). Chicago: University of Chicago Press.
Riessman, C. K. (2001). Analysis of personal narratives. In J.
F. Gubrium & J. A. Holstein (Eds.), Handbook of interview
research: Context and method (pp. 695-710). Thousand
Oaks, CA: Sage.
Röding, J., Lindström, B., Malm, J., & Ôhman, A. (2003).
Frusand invisible—Younger stroke patients’ experiences
of the rehabilitation process. Disability & Rehabilitation,
25(15), 867-874. doi:10.1080/0963828031000122276
Shadden, B. (2005). Aphasia as identity theft: Theory
and practice. Aphasiology, 19(3), 211-223. doi:10.1080/
02687930444000697
Shadden, B., & Hagström, F. (2007). The role of narrative
in the life participation approach to aphasia. Topics in
Language Disorders, 27(4), 324-338. doi:10.1097/01.
TLD.0000299887.24241.39
Skirbekk, H., Middelthon, A. L., Hjortdahl, P., & Finset, A.
(2011). Mandates of trust in the doctor–patient relationship.
Qualitative Health Research, 21, 1182-1190. doi:10.1177/
1049732311405685
Stake, R. E. (2005). Qualitative case studies. In N. K. Denzin
& Y. S. Lincoln (Eds.), The Sage handbook of qualitative
research (3rd ed., pp. 443-467). Thousand Oaks, CA: Sage.

Stone, S. D. (2005). Reactions to invisible disability: The experiences of young women survivors of hemorrhagic stroke.
Disability & Rehabilitation, 27(6), 293-304. doi:10.1080/
09638280400008990
Sundin, K., & Jansson, L. (2003). “Understanding and being
understood” as a creative caring phenomenon—In care of
patients with stroke and aphasia. Journal of Clinical Nursing, 12(1), 107-116. doi:10.1046/j.1365-2702.2003.00676.x
Sundin, K., Jansson, L., & Norberg, A. (2002). Understanding
between care providers and patients with stroke and aphasia:
A phenomenological hermeneutic inquiry. Nursing Inquiry,
9(2), 93-103. doi:10.1046/j.1440-1800.2002.00135.x
Sundin, K., Norberg, A., & Jansson, L. (2001). The meaning
of skilled care providers’ relationships with stroke and
aphasia patients. Qualitative Health Research, 11, 308-321.
doi:10.1177/104973201129119127
Usher, K. J., & Arthur, D. (1998). Process consent: A model
for enhancing informed consent in mental health nursing.
Journal of Advanced Nursing, 27(4), 692-697. doi:10.1046/
j.1365-2648.1998.00589.x
Weaver, K., Morse, J. M., & Mitcham, C. (2008). Ethical sensitivity in professional practice: Concept analysis. Journal
of Advanced Nursing, 62(5), 607-618. doi:10.1111/j.13652648.2008.04625.x
Yin, R. K. (2009). Case study research: Design and methods.
Thousand Oaks, CA: Sage.
Zoffmann, V. (2004). Guided self-determination: A life skills
approach developed in difficult type 1 diabetes (Unpublished
doctoral thesis). University of Aarhus, Aarhus, Denmark.

Bios
Berit Arnesveen Bronken, MNS, RN, is a doctoral student and
a researcher at the Faculty of Medicine, Institute of Health and
Society in the Department of Nursing Science at the University
of Oslo in Oslo, Norway, and a recruitment scholar at Hedmark
University College, Faculty of Public Health, Department of
Nursing and Mental Health in Elverum, Norway.
Marit Kirkevold, EdD, RN, is a professor of nursing science
at the Faculty of Medicine, Institute of Health and Society in
the Department of Nursing Science at the University of Oslo in
Oslo, Norway.
Randi Martinsen, MNS, RN, is a doctoral student at the
Faculty of Medicine, Institute of Health and Society in the
Department of Nursing Science at the University of Oslo in
Oslo, Norway, and an assistant professor at the Faculty of
Public Health, Department of Nursing and Mental Health at
Hedmark University College in Elverum, Norway.
Kari Kvigne, PhD, RN, is an associate professor in the Faculty
of Public Health, Department of Nursing and Mental Health at
Hedmark University College in Elverum, Norway.

Downloaded from qhr.sagepub.com at FLORIDA INTERNATIONAL UNIV on June 7, 2015