Patient's Expression of Hope and Illness Narratives in Three Neurological Conditions: A Meta-Ethnography

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Patient's expression of hope and illness narratives in three neurological

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Patient's expression of hope and illness narratives in three neurological

conditions: a meta-ethnography
Andrew Soundya; Brett Smithb; Helen Dawesc; Hardev Palld; Katrina Gimbrerea; Jill Ramsaya
a
Department of Physiotherapy, University of Birmingham, Birmingham, UK b School of Sport,
Exercise and Health Sciences, University of Loughborough, Loughborough, UK c School of Life
Sciences, Oxford Brookes University, Oxford, UK d Department of Neurology, University Hospital
Birmingham, Birmingham, UK
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To cite this Article Soundy, Andrew , Smith, Brett , Dawes, Helen , Pall, Hardev , Gimbrere, Katrina and Ramsay, Jill(2011)
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2011, 125, iFirst
Patient’s expression of hope and illness narratives in three neurological

conditions: a meta-ethnography
Andrew Soundya*, Brett Smithb, Helen Dawesc, Hardev Palld, Katrina Gimbrerea
and Jill Ramsaya
a
Department of Physiotherapy, University of Birmingham, 52 Pritchatts Road, Birmingham,
B15 2TT, UK; bSchool of Sport, Exercise and Health Sciences, University of Loughborough,
Loughborough, UK; cSchool of Life Sciences, Oxford Brookes University, Oxford, UK;
d
Department of Neurology, University Hospital Birmingham, Birmingham, UK
(Received 19 January 2010; final version received 28 February 2011)
Downloaded By: [Soundy, Andrew] At: 12:19 8 April 2011
Hope has been identified as a key attribute required for neurological rehabilita-
tion. Expressions of hope form the basis for patient narratives within this context.
The purpose of this study was to use patient’s experience of hope as a way of
understanding narrative types. This study looks at three different neurological
conditions: spinal cord injury, stroke and multiple sclerosis. Using a meta-
ethnographical method, eight narrative macrostructures were identified by three
groups of hope: (1) hope as a dichotomy, (2) hope as a paradox and (3)
transcendence. The discussion provides further details of these groups and
establishes how therapeutic emplotment may influence and guide narratives
within neurological rehabilitation.
Keywords: neurology; illness narratives; qualitative; hope
Introduction
It is estimated that 6.8 million people die every year as a result of neurological
disorders (World Health Organisation, 2006). Three of the most prevalent and costly
neurological diseases in westernised society are stroke, spinal cord injury (SCI) and
multiple sclerosis (MS), with stroke being the leading cause of disability in both the
UK (Rothwell et al., 2004) and the USA (Department of Health and Human
Services, 2007). It is estimated (Andlin-Sobocki, Jönsson, Wittchen & Olesen, 2005)
that in Europe neurological disorders cost a total of t386 billion a year, an amount
set to increase with the number of people affected by neurological conditions rising
as Europe’s population ages (Dorsey et al., 2007).
There are a number of successful approaches for disease management and
rehabilitation in neurological conditions; however, there is heterogeneity in indivi-
dual responses which are not easily explained by empirical methods. Qualitative and
mixed methodology research offers a means to explore the impact and effect of
illness in rehabilitation. In an effort to gain a greater understanding and attain a level
of conceptual development beyond that achieved in empirical studies, this paper
reports on the findings from a synthesis of qualitative research studies on
neurological patients’ perspectives of hope using a meta-ethnographic approach.
*Corresponding author. Email: A.A.Soundy@bham.ac.uk

ISSN 1743-7199 print/ISSN 1743-7202 online
# 2011 Taylor & Francis
DOI: 10.1080/17437199.2011.568856
http://www.informaworld.com
2 A. Soundy et al.
Before turning to a description of this approach, it is important to introduce the

concepts of illness narratives and hope, and to offer a rationale for focusing on them.
Chronic bodily failures can give rise to a person experiencing a biographical
disruption (Bury, 1982, 1991). The experience of this disruption differs between
individuals. Some are able to continue their biography without much change, that is,
experience ‘biographical flow’ (Reeve, Lloyd-Williams, Payne, & Dowrick, 2010).
Others consider illness a ‘normal crisis’ to one’s biography (Sanders, Donovan &
Dieppe, 2002; Pound, Gompertz & Ebrahim, 1998; Williams, 2001). Further, for
some individuals the disruption to biography illness is seen as something that
prevents normal functioning, what Reeve et al. (2010) termed a ‘biographical
fracture’. Individuals’ responses to crises are dependent on their expectations, norms
within the culture and the timing and context of the crisis (Williams, 2001). Thus, the
ability of a patient to incorporate the disruption into their biography varies from
those who are able to assume continuity from their past towards the future to those
who cannot.
The macrostructure of illness narratives

Illness narratives may emphasise or de-emphasise certain story events and can be
used to illustrate how a patient perceives, incorporates and responds to a disruption
(Chatman, 1978). The purpose of our research is to examine the onset of chronic
illness as the event and consider ‘macrostructures’ (Chatman, 1978) of patients’
illness narratives which follow this event relative to rehabilitation and hope. Previous
research has attempted to illustrate the macrostructure of illness narratives through
offering different typologies. Core narratives of chronic illness have been identified
by different authors (Bury, 2001; Chanfrault-Duchet, 1991; Frank, 1995; Hawkins,
1990; Kelly, 1994; Kelly & Dickinson, 1997; Murray, 1989; Robinson, 1990). The
definition of each of these narratives is provided in Table 1. These narratives provide
a template for a range of responses to chronic illness. However, it is not clear how
each narrative is associated to and changes with the process of rehabilitation.
Research (Hydén & Misler, 1999) has shown that illness narratives change over
time, reflecting the course of the treatments and the patient’s situation. In other
words, one narrative type by itself does not complete or establish the process of a
patient’s narrative reconstruction (Williams, 1984); rather narratives change and
evolve alongside hope as patients re-fashion their identities through telling stories
(Mathieson & Stam, 1995; Sakalys, 2003). Within neurological rehabilitation
narratives often revolve around patient’s hope. Hopes are able to reflect how a
patient considers the future, embraces change and accepts their present circum-
stances. Patients can be successful in transcending their old self and generating a new
self (Hawkins, 1990). However, a simple process of transcending and embracing the
present and future is dependent upon how patients perceive and respond to their
illness crisis. Thus, further understanding of such a process within neurological
rehabilitation would be extremely useful for clinicians and patients alike.
Hope and narrative

Barnard suggests that chronic illness brings forth ‘the very aspect of human existence
that gives birth to hope, namely, that human beings are poised on the boundary
Health Psychology Review 3
Table 1. Showing the different illness narrative types.
Narratives types or
genres Definition of each narrative
Restitution The restitution narrative is told by a patient who identifies the hope of
being restored to his or her previous state of health and identity. It
could be represented by a patient’s monothematic desire to get well
(Hawkins, 1990). It is compounded by the expectation that other
people want to hear a restitution story (Frank, 1995).
Heroic The heroic or epic narratives are associated with maintaining or
defending existing social values (Kelly & Dickinson, 1997).
Chanfrault-Duchet (1991) states that the community values these
narratives. Hawkins terms it is as a ‘challenge met’ (1990, p. 551).
Robinson (1990) distinguishes two forms of the heroic narratives. An
implicitly heroic narrative is seen by others as an extraordinary way to
manage and reflect on illness, but may not be regarded by the teller in
such a way. An explicitly heroic narrative is a specific expression where
the patient denotes a fight or battle against the illness. The latter is
more similar to the example given by Kelly (1994) as being a brave and
courageous response to illness.
Detective The detective narrative revolves around a search for answers that
explore the mystery of the illness. Robinson (1990) identified it as a
need to answer two questions, first, why me? Followed by, what can be
done about it? He suggests that this story may become a detached
documentary that identifies the patient’s progress and change, or
become more of an adventure.
Comic A comedy provides the patient with an opportunity to observe illness
in a different light. Kelly (1994) identifies a patient who was perplexed
and amused by what has happened to her and in particular the
response of the doctors to what was happening. Murray (1989)
suggests that the conflict in comedy, as in this example, is the
repression of a desire (to get well) expressed through the course of an
adventure (the medical treatment).
Ironic or satirical An ironic or satirical narrative provides the patient with an
opportunity to present other outcomes that are apparent. Kelly (1994)
identified a patient who needed surgery in order to save her life;
however, the outcome of having the surgery was disfigurement.
Chanfrault-Duchet (1991) calls this narrative a Picaresque and
suggests it confronts change by questioning the dominating social
values. Murray states an ironic narrative is one that ‘deals with the
discovery that comedy, romance and tragedy are mere schemes of
mortals to control experience: individual’s are not so pure, nor is the
social order so healthy’ (1989, p. 182).
Disembodied or The Disembodied or detached narratives document the events of life
detached in a third party, with an emotionally flat dialogue. These narratives
can lack any attempt to evaluate the meaning of illness to the patient.
Such accounts may lead intentionally or unintentionally to a heroic or
tragic narrative (Robinson, 1990). Kelly (1994) gives the example of a
patient who identifies events as if they were not really happening to
her, viewing the body separately from herself.
4 A. Soundy et al.
Table 1 (Continued )
Narratives types or
genres Definition of each narrative
Romantic The romantic narrative is associated with a struggle for personal
meaning. This narrative details a contest that a patient was involved
with (Kelly & Dickinson, 1997). This narrative restores the patients
honoured past, highlighting a struggle that has taken place in order to
overcome a test. (Murray, 1989). Chanfrault-Duchet identified the
narrative as Romanesque, which is described as a ‘quest for authentic
values in a degraded world’ (1991, p. 80). Kelly (1994) illustrates this
narrative with a patient who stated that she would get better and
suggested that prayer from people at her church and from other
people had accomplished this.
Quest The quest narrative suggests that patients accept their illness and seek
to use it. In this sense the quest narrative welcomes the future (Frank,
1995). This may be likened to the regeneration paradigm of illness
identified by Hawkins (1990). He suggests that during illness patients
can experience the death of an old self and a rebirth of a new self.
Supernatural The supernatural intervention identifies God as an ally in the
experience of illness, where salvation is offered. The course towards
death becomes life and losses are reconfigured into gains (Robinson,
1990). Hawkins (1990) identifies a religious narrative with three key
components: life before conversion, the conversion and life after the
conversion. The climax of the narrative is the conversion.
Didactic The didactic narrative is illustrated by a patient who identifies the
lessons that have been learnt following the experience of illness. Kelly
(1994) provides an example of a patient who identifies disappointment
in the course of the illness experience.
Tragedy The tragic narrative illustrates an overwhelming or inevitable outcome
(Bury, 2001; Kelly, 1994; Robinson, 1990). In the words of Murray the
person ‘fails to conquer evil’ (1989, p. 182).
Sad A sad narrative represents the idea of loss and a disease that is out of
the patient’s control, as more distance is put between the narrator and
their desired goal. However, it is not as severe or regressive as a
tragedy (Robinson, 1990). It is similar to what Hawkins terms a
‘challenge failed’ (1990, p. 551), where a patient becomes a victim of
his or her illness.
Chaos This narrative is an expression of loss, leaving no distance from the
experience, where the future is empty. Those that live in chaos have no
reflective grasp of what has happened (Frank, 1995).
between finitude and transcendence’ (1995, p. 38). Barnard uses the paradox of
chronic illness1 to describe this boundary. He suggests that ‘people with chronic
conditions are impelled at once to defy limitations in order to realise greater life
possibilities and to accept limitations in order to avoid enervating struggles with
immutable constraints’ (1995, p. 39). The paradox illustrates the importance of
understanding what patients accept and what they need to defy about their illness.
The majority of illness narratives in Table 1 incorporate some degree of acceptance,
acknowledgement or adjustment to illness (Smedema, Bakken-Gillen, & Dalton,
2009), as well as some degree of defiance, challenge or search as a response to illness.

The heroic and detective narratives acknowledge illness but defy illness through a
personal challenge or search. The romantic, comic, ironic, detached, disembodied,
didactic, sad and tragic narratives illustrate acceptance, acknowledgement of or
adjustment to illness but also provide a retrospective view and commentary of a
patient’s defiance towards illness.
The other illness narratives limit the expression of a paradox, reflecting narratives
that contain distinctive types of hope. The restitution narrative or supernatural
narrative highlights an external source of hope (medicine or God, respectively) that
will help the patient defy illness, but this reliance on an external source of hope may
mean patients are unable to accept or acknowledge the present circumstances. The
type of hope presented in these narratives is termed concrete hope (Marcel, 1951).
The supernatural narrative may also (like the quest narrative) illustrate adjustment
and embracement of the illness, with no need to defy the illness. These narratives are
associated with a transcendent hope (Marcel, 1951). Finally, the chaos narrative does
not accept or defy illness, as it reflects a patient’s expression without a plot structure.
It is a narrative that has no hope.

This understanding of hope provides three groupings of illness narratives. The
first narrative grouping illustrates two narratives that do not accept patients’ present
identity or circumstances. This illustrates how hope can be experienced at extremes,
or two radically different ways of putting illness into narratives of hope: (1) the
expression of a concrete hope and restoration in the future and (2) the expression of
no hope for the future or an empty present. We describe this group as the dichotomy
of hope. This description seeks not to suggest that other possibilities exist, but rather
is an attempt to evoke how illness narratives depict illness either as curable and the ill
person as having a future filled with hope that he or she can return to a healthy body,
or illness as incurable and the person as having a future devoid of hope. Second, the
majority of narratives illustrate some acknowledgement of illness as well as an
illustration of defiance. We consider this group as the paradox of hope. Third, we
identify narratives that embrace the present identity or circumstances and move
beyond a hope for change in the illness symptoms. We regard this group as
transcendence narratives. Research that considers hope may be best positioned to
establish a more detailed understanding of these groups and identify how a patient
moves between these groups over time. In short, hope is important to patients in
neurological rehabilitation because it represents a dimension that associates narrative
macrostructures together. However, narrative macrostructures are located and
expressed in a moment of the patient’s life. The moment relates to the patient’s
past, present and/or future. Thus, the patient’s use of time in their narrative is
important as it provides a dimension to the narrative macrostructure and context for
the patient’s life and hopes.
The emplotment of narratives

When patients express their narrative they do so within a specific culture, which
influences what is said and how it is expressed (Bury, 2001; Kelly & Dickinson, 1997).
For example, oncologists have been reported to use strategies that avoid dealing with
the narrative endings by, for example, focusing the plot on short-term progression, or
considering the ensuing routine treatment as steps that are to come (Del Vecchio
6 A. Soundy et al.
Good, Munakata, Kobatashi, Mattingly, & Good, 1994). Thus, patients will likely be
influenced by narratives that are available to them within the therapeutic encounter.
This is termed ‘therapeutic emplotment’, which enables the patient and the
professional to create a plot structure within clinical time (Mattingley, 1994).
Emplotment influences what narratives are available to patients according to the
acceptability of the narrative within the therapeutic culture.
Within neurological rehabilitation therapists use the hope presented by patients
towards their outcomes as a way to monitor and negotiate illness narratives.
Neurological therapists encourage or request an acknowledgement of a realistic hope
that is based on the patient’s prognosis (Soundy et al., 2010a). This has been
associated with a patient’s healthy adjustment (e.g., Kirkevold, 2002). However, it
may mean the process of emplotment limits narratives. For example, Pound et al.
identified that most patients in their study who had previously suffered a stroke were
able to accept illness and incorporate the crises into their lives with ‘resignation and
pragmatism’ (1998, p. 498). This strategy may limit the expression of other narratives
such as the chaos narrative (Norrick, 2005) and act to restrict a full range of
narratives available. Any understanding of narratives therefore must consider the

influence of the rehabilitation culture on guiding and modifying a patient’s hope and
narrative.
Providing an in-depth understanding

Qualitative data are suited to understanding patients’ responses to their disease
(McKevitt, Redfern, Mold & Wolfe, 2004). There is a need for qualitative studies to
understand the concepts of hope, narrative and adjustment. This is because hope
scales (e.g., the hope and coping questionnaire; Popovich, 1991) can provide an idea
of hopefulness as a score, observing hope as one-dimensional. The results of such
scales suggest that patients are more or less hopeful. This is important for
understanding hope but not relevant when seeking to understand the meaning of
hope to patients or trying to establish narrative macrostructures. Additionally, while
hope scales are able to consider how hope changes over time (e.g., Popovich, Fox &
Burns, 2003) or indeed can be used to correlate hope to other variables (e.g., Piazza
et al., 1991) they are not able to consider hope as a paradox or identify the different
types of hope discussed above. Thus, a patient’s own description of hope will enable
the identification of narrative macrostructures that hope scales are unable to
elucidate because of their very nature.
In summary, a review is required that can take rich sources of data and explore
them in order to consider how illness narratives are reconstructed within neurological
rehabilitation. The purpose of this original research is to use patients’ experiences of
hope in order to identify narrative macrostructures that are present during
neurological rehabilitation.
This paper reports on the findings from an original synthesis of qualitative
research studies on neurological patients’ perspectives of illness and hope using a
meta-ethnographic approach. In so doing, the aspiration is to achieve a greater
understanding of illness and hope, and develop conceptual or theoretical knowledge
beyond that achieved in any individual empirical study (Campbell et al., 2003).
Methodology
Meta-ethnography
This method, as described by Campbell et al. (2003) and Weed (2008), involves
selecting relevant empirical studies to be synthesised, reading them repeatedly and
noting down key concepts. These key concepts become the raw data for the synthesis.
Synthesis may then be achieved through examining the key concepts in relation to
others in the original study, and across studies, and is similar to the method of
constant comparison used in qualitative data analysis. Before detailing the procedure
used here for synthesis, it is vital, as Weed (2008) stressed, to illumine the
epistemological and ontological assumptions that inform and frame the process
involved in synthesising the qualitative work. This is particularly so, given that as
Weed (2008) eloquently pointed out, some users of meta-ethnography have fallen
back on the types of search strategies included in the positivist and realist approach
to systematic review (i.e., Cochrane guidelines) that have been developed to prepare
the ground for syntheses of relatively large volumes of quantitative data.
That acknowledged, our use of meta-ethnography is supported and framed by
the interpretivist paradigm. Ontologically then we assert a belief that our knowledge
of the world is multiple, mind-dependent and subjective. Thus, whilst the procedures
we describe are useful, we make no claim that this research allows us to accurately
depict the world as it really is. In terms of epistemology, for us, like many qualitative
researchers, knowledge is ‘constructed’ and always fallible. Therefore, we assert that
our synthesis of studies contains ‘a truth’ rather than ‘the truth’ and will thus result,
as Weed (2008) put it, in ‘a truth of truths’. Others who have used meta-ethnography
have also framed their synthesis in interpretivism, including Campbell et al. who
state their meta-ethnography has ‘its origins in the interpretavist paradigm’ (2003, p.
673). This is made possible when one considers the logic of justification (Smith,
1989). Here, researchers make a distinction between the epistemological and
ontological assumptions they subscribe to on the one hand, and the methods (i.e.,
the procedures, strategies and techniques for the collection and analysis of data) they
use on the other. What this distinction means is that meta-ethnography is seen as a
method and that this method is supported by certain paradigmatic assumptions (e.g.,
interpretivism) and not others (e.g., positivism).
With all this in mind, and drawing on the work by Noblit and Hare (1988),
Campbell et al. (2003) and Weed (2008), the method of meta-ethnography here
involved a seven stage process.
Results
Stage 1 and 2 involved getting started and sampling. As Noblit and Hare (1988) in
their original description of meta-ethnography say nothing about the selection of
studies (Weed, 2008), we found the work of Campbell et al. (2003) useful in guiding
our thinking and defining the focus of the synthesis. After discussion within the
research team it was agreed that the synthesis should be restricted to studies that
represented experiences of hope during rehabilitation, that were qualitative in nature,
and that represent one of three neurological diagnoses: (1) SCI (2) stroke and (3) MS.
These were chosen because they represent some of the most prevalent and costly
neurological diseases in westernised society.
8 A. Soundy et al.
With this criteria guiding the process of synthesis, we undertook an electronic

search in February 2010 of the CINAHL, AMED, EMBASE and MEDLINE
databases using key words related to concepts (hope, expectations, adjustment),
neurology (Stroke, SPINAL CORD INJURY, Multiple Sclerosis) and the type of
methodology used in each study (qualitative, in depth, unstructured or semi
structured interviews, NARRATIVE ANALYSIS, content analysis, discourse
analysis or grounded theory). Words were combined by the use of standard
operators ‘‘AND’’ and ‘‘OR’’. The search covered the titles and abstracts of articles
published between 1990 and 2010 to ensure that a wide range of recent articles were
selected, thereby increasing the relevance of the findings to modern day practice. This
recognises the researcher as an interpretive agent (Weed, 2008), and in an effort to
sample other studies that might be theoretically relevant and thus potentially
increase the breadth and depth of the sample of studies being synthesised (Weed,
2008). Like Campbell et al. (2003) we also actively searched our own collections of
papers and hand searched numerous journals, such as Qualitative Health Research,
Illness Crisis and Loss, and Qualitative Research in Psychology.
Following the above process, twelve articles were identified. Each paper was then
read in order to refine ideas, and a decision was made regarding which studies would
then be included in our analysis and synthesis. Three key screening questions guided
this: ‘Does this paper report empirical findings from narrative research and did that
work involve both qualitative methods of data collection and analysis?’, ‘Is this
research relevant to the synthesis topic?’ and ‘Does this work provide a distinct
contribution to the analysis above and beyond the collective findings?’ Following
this, the studies by Doolittle (1992) and Lohne and Severinsson (2006) were
excluded: the latter because it did not use empirical data and the former as it had no
method of analysis identified.
Ten studies were identified and used within this review, five papers considered
SCI: Laskiwski and Morse (1993), Lohne and Severinsson (2004a, 2004b, 2005) and
Smith and Sparkes (2005). Four papers dealt with stroke: Arnaert, Filteau, and
Sourial (2006), Barker and Brauer (2005), Bays (2001) and Wiles, Ashburn, Payne,
and Murphy (2002). Finally, one paper focused on MS: Murphy-Miller (1997).
Similar to Campbell et al. (2003), stages 3 and 4 included reading the selected
relevant empirical studies repeatedly and noting down key concepts. These key
concepts, generated from the raw data, were then examined in relation to others, and
across studies. We used tables and grids to help in this and to display themes and
concepts as previously suggested (Campbell et al., 2003; Atkins et al., 2008). Table 2
provides a flavour of the template we used for our literal and idiomatical analysis of
the studies. The table shows an example of the analysis for one study. Within Table 2,
we identified a summary of the literal and idiomatic interpretation of the study’s
themes (primary author’s interpretation). Table 3 was developed to consider the type
of hope expressed in each study literally and again provides an idiomatic
commentary.
During stage 5 we examined the reciprocal and refutational relationships between
studies and examined how we can go beyond the individual studies and represent a
line of argument (Britten et al., 2002; Van Mannen, Manning, & Miller, 1988).
Whilst doing this, like Doyle (2003), we sought to maintain the language used in each
study while creating new metaphors within the synthesis. This stage was conducted
by translating results together. Table 4 provides an example of how the adjustment
Table 2. The initial translation of the Murphy-Miller (1997) study: illustrating the first stage of
translation of study themes.
Literal interpretation of study themes Idiomatic interpretation of study themes
General comments Hope varies by the very nature of the

All patients have some hope and did not disease diagnosis and by events that cause
fear deterioration due to nature of change to the progression of the
remitting disease. symptoms.
Experiences may differ from chronic to Adjustment is likely to be required at the
progressive MS. diagnosis, readjustment may not so
important.
Restoration can be achieved by patients
with relapsing remitting MS.
Example theme: hope/hopelessness Uncertainty was primarily related to
Hope illustrated a means of coping. It was when the next relapse would be and how
seen as a means that patients use to cope bad it could be.
with uncertainty. Goals facilitated hope, Attainable goals created a greater sense of
particularly if the goals were attainable. hope.

Periods of hopelessness were experienced by Hopelessness was directly related to
all patients; this seemed to lessen with knowledge and experience. But it was also
increased knowledge, experience and if the related to uncertainty of the future
disease was remitting in nature. changes in a patient’s symptoms.
Certainty was gained from the knowledge
that the disease is remitting in nature.
and hope was expressed within SCI studies. This table is arranged to illustrate how
we translated studies together by seven themes identifiable in all studies (a full copy
of this translation is available from A. Soundy). This led onto stage 6 creating
synthesised translations that related to the concept of hope. At this stage the volume
of data required reduction and grouping into categories of hope. Therefore, we
selected the data from the previous stages that related to our study purpose. Table 5
identifies groupings of hope along with the similarities and differences within
conditions as well as an overall line of argument synthesis. This synthesis illustrates
Table 3. An example of the types of hope presented in the study by Arnaert et al. (2006) and
first attempt at categorising by themes.
Commentary literal and idiomatic

Types of hope expressed summary of categories
Active hope patients were able to see and act Active hope was a type of hope supported by
upon future and goals. This type of hope health care professionals for several reasons:
demonstrated optimism, connectedness with (1) it exhibited certain good qualities of a
oneself and a spiritual and social patient, such as a willingness to engage and
connectedness. work with the rehabiliaiton process; (2) it
Passive Hope patients had a vision of hope provided an opportunity to gain most from
but could not use it to move forwards. rehabilitation and (3) it demonstrated that
Patients were caught up in their present patients had achieved a good adjustment to
realities, fears, frustrations and anxieties. what had happened.
This prevented them from seeing the future
or hoping for change.
10 A. Soundy et al.
Table 4. Translating studies together: example of SCI studies.
Translating studiesa
The expression of hope in SCI studies

Types of hope were clearly identified by all papers, these differed between papers. Lohne and
Severinsson (2004a) identified big, small and silent hopes. . .Lohne and Severinsson (2005)
did not identify types of hopes but did identify a cycle that related to hope. . .Laskiwski and
Morse (1993) identified the hope that patients had to be restored to their previous life, but
also the experience of no hope and despair if they later thought this hope was not
possible. . .Smith and Sparkes (2005) consider hopes in relation to narrative types.
Adjustment and negative emotional time
Subjective emotional time referred to the time when emotions engulfed the patient’s thoughts,
feelings and behaviour. This was most evident following the onset of illness, with acute
plateaus and with slowing improvement. . .Lohne and Severinsson (2004a) identified that the
first emotions (grief, loss, despair) were experienced initially at the onset of the SCI. . .Lohne
and Severinsson (2004b) saw suffering as a concept that was linked to despair (uncertainty,
being scared and the feelings of panic).
Adjustment experiences and knowledge with time, objectivity and hope

Often the hope of restoration appeared something that would be redefined as improvements
became final; the despair about losses that initially engulfed a patient were often replaced by
a longing for change that had not happened. . .Feelings of despair (Lohne and Severinsson,
2004a; 2004b) may be removed with time, along with the frequency of the emotional
dichotomies (up and downs, or non-linear process of hoping).
Background factors, environment and support
A patient’s feeling of despair was partially dependent on the level of recovery, the extent of
injury and how an injury had occurred. For example, Lohne and Severinsson (2004b)
identified a lady whose SCI was the result of a suicide attempt and her anxiety and despair
were more prevalent than seen in other patients. . .Laskiwski and Morse (1993) reported a
large loss of support from family and friends as time went on. Additionally, patients
suggested that they sometimes presented façades of emotions to others that helped hide the
patient’s real feelings of what had happened.
Hope generating strategies
In Lohne and Severinsson (2004a) patients continuingly looked forwards towards identifiable
and manageable goals. These goals allowed psychological movement for the participants
from an empty present, to a more certain future. . ..Health care professionals required
specific communication skills that could help patients be patient. For example, it was their
responsibility to tell the patient the time needed for change to occur and what change was
possible. . ..Lohne and Severinsson (2004a) identified that restlessness was created by a
dependency on others and this created uncertainty for patients.
Other factors influencing adjustment
Within rehabilitation a turning point in patient symptoms helped patients move away from
despair towards hope. Physical improvements caused changes in the patient’s outlook
(Lohne & Severinsson, 2004b, 2006). Improvements further acted as to prevent the negative
cycle of thoughts occurring (Lohne & Severinsson, 2004). Laskiwski and Morse (1993)
found that mastering new skills such as completing the bowel routine, having a good sleep,
receiving good news from others and family visits strengthened hope.
Table 4 (Continued )
Translating studiesa
Hope removing aspects

Uncertainty and anxiety prevented a patient from moving psychologically
forward. Lohne and Severinsson (2004a) identified that patients experienced uncertainty
about what they could not achieve in the future. These experiences kept patients thinking
about their present circumstances, rather than considering and hoping for change. Lohne
and Severinsson (2004b) also noted that despair and uncertainty prevented a patient’s hope
from becoming active. Stagnation in progress reduced hope as patients were consumed with
feelings that the future was predetermined and further recovery was impossible . . . A vicious
cycle was created by progress and change becoming stagnant.
a
Fuller descriptions of these results are available from A. Soundy upon request.
what can be said as a whole about hope across the studies. These groupings provided
a spectrum of hope (identified by the x-axis of Figure 1). This spectrum illustrates
how types of hope are associated with narrative macrostructures. Eight narrative
types or macrostructures were most clearly identified.
In stage 7 we used our previously identified groups of hope to present the
narrative macrostructures. This included (1) Hope as a dichotomy (2) Hope as a
paradox and (3) Transcendence. These are identified and explained below. We then
illustrate how the groupings of hope and the narrative macrostructures are associated
with time and guidance people offer within rehabilitation.
Hope as a dichotomy
The dichotomy of hope represented either a concrete hope for a cure or no hope for
improvement. This dichotomy was associated with the patient’s past identity, towards
it being restored or lost. Patients with a concrete sense of hope focused on defying
the disruption by being completely restored in the future. Patients with no hope
demonstrated a subjective emotional expression of disruption. These reactions were
often the first stages of adjustment following crisis, loss or disruption to a patient’s
biography and were common across all conditions.
Concrete hope
The hope of restoration was often a reaction that was expressed when patients felt
shock or anger. But it could also be considered as denial or an inability to accept the
crisis or present identity. Stroke patients hoped to be restored to their previous life,
and there was a positive anticipation that this could happen (Bays, 2001). In studies
that considered SCI, the hope of restoration was considered as a patient’s big hope
(Lohne & Severinsson, 2004a). This may have been the desire to be able to walk again
despite the reality of the situation (Laskiwski & Morse, 1993; Smith & Sparkes,
2005). Patients with MS demonstrated a desire to be restored but had less optimism
about the changes possible through medical advancement.
Accordingly, as part of an initial reaction to illness most, if not all, patients hoped
for restoration. However, the results also revealed that the hope of a cure was
12 A. Soundy et al.
Table 5. A comparison of hope between each neurological condition.
Reciprocal factors or Refutational factors Line of argument

Type of hope similarities or differences synthesis
Hopes in SCI Need and value of There were greater Different types of hope
Big and small realistic hopes. possibilities of a represent, reinforce or
hopes. Hope in relation to positive underlie different
Silent hope and disease change lie on transcendence found narrative expressions.
imagination. Active a continuum from in stroke studies. Most positive reactions
or passive hope. restorative hopes to Hopes and in rehabilitation may be
Despair and no no hope. narratives appear active hope or a
hope. Personal silent hopes more focused on personal-challenge.
Concrete hopes. of patients may exist disease improvement Realistic hope and
Transcendent hope. simultaneously with in patients who have acceptance are
Modified hopes. realistic hopes. suffered a stroke. important as they
Hopes in Stroke Hopes that fight or Less adaptive hopes include reactions that
Active hope and challenging illness and narratives were can reflect a better
passive hope. may be encouraged. told by patients who adjustment more

Silent hopes in Hopes can be suffered a SCI. aligned with
positive modified to Hopes differ by expectations of health
anticipation. accommodate a disease prognosis. care professionals.
Challenging hopes change in a patient’s Understanding the
in active condition. paradox of hope is
participation. essential to this.
Modified hopes Acceptance or
created by a acknowledgement is a
forward moving part of many illness
process. narratives and different
Realistic hopes. types of hope. The
Restorative hopes. varied nature of
Hopes in MS acceptance helps create
Adaptive hopes to a number of positive
manage and retain ways that patients can
a functional ability. respond to illness.
Restorative hopes What is accepted or
for the future and defied by a patient can
hope in possibility. change with each
Challenging hopes narrative.
that resist change. Patients may have other
No hope for types of hope outside a
physical single narrative that they
improvement or express.
regaining losses No hope and concrete/
that have occurred. false hope seem to be
Hopelessness two ends of a continuum
following diagnosis, of which acceptance lies
when considering in the middle.
the future
prognosis and
during relapses.
Hope Outcomes
Future Focused View:
Preference of state Succumbing Discouraged Outcomes: False hope or concrete hope or
and denial. silent hope, and big hopes.
Present and Future Accepting

view:

Coping, acknowledgment, Encouraged Outcomes: Realistic hope and Active
adjustment and acceptance. hope, and Hope in Faith
Time
Present Accepting view:
Value changes, coping, Encouraged Outcomes: Accepting hope and no
acknowledgment, adjustment need to hope, hope in faith and modified hopes.
and acceptance.
Key:
Y axis: Types of hope and narrative qualities that
relate to time (past, present or future) and
adjustment.
X axis: Time.
Equal Dotted line: Guided response for patient.
Thin single line: Individual trajectory.
Present and Past Reflecting view:

Succumbing and focus on loss Discouraged Outcomes: No hope or Passive hope
Resignation and bowing to
misfortune
Figure 1. Guiding narratives in neurological rehabilitation.
13
14 A. Soundy et al.
strongly evident in patients with SCI, although not so evident in patients with MS.
The difference between MS and SCI appeared to be the patient’s acceptance of their
medical prognosis. Moreover, the results revealed that hope for restoration appeared
a greater possibility in patients who had suffered a stroke than in the other
conditions.
No hope
The clearest explanation of no hope is as a loss that cannot be reconciled. Patients
with no hope expressed a lack of meaning or purpose in their life. In patients with
SCI no hope was associated with the view that life had ended and there was nothing
that could be done (Smith & Sparkes, 2005; Lohne & Severinsson, 2005). With no
hope, despair was experienced. This sense of despair was present as part of a vicious
cycle of repetitions, when adjusting to the SCI (Lohne & Severinsson, 2004a). It was
compounded by dependency on others (Laskiwski & Morse, 1993) and by a lack of
support from others (Smith & Sparkes, 2005). It could be exacerbated in patients
with additional co-morbidities (Lohne & Severinsson, 2004a). Wiles et al. (2002)
identified no hope was observed in patients who had suffered a stroke. No hope was
present following the shock of what had happened through stagnation in progress or
by disappointment at the timing of discharge (which represented limited further
improvements). Patients with MS experienced no hope at diagnosis and during
relapses in their symptoms.
Accordingly, little change, plateau or relapses in a condition were often
associated with no hope. But hope was also lost when considering a future as
stagnant or declining. Primarily, this was experienced in stroke patients during
plateaus in their symptoms. No hope was more continual or circular in SCI and
exacerbated by relapse in MS. Patients were neither able to accept what had
happened nor consider defying their illness. Patients could experience no hope over
considerable periods of time, and this was associated with worsening psychological
well-being. It was also clear that periods of hopelessness could exist throughout
illness.
Hope as a paradox
Patients’ expressions of hope could lie within the paradox of hope. These narratives
could be expressed by patients following the onset of illness but were more prevalent
given time, experience and information that enabled the patient to acknowledge what
had happened. This group of narratives distinguished what each patient could accept
about his or her illness whilst also identifying what he or she needed to defy about it.
Reflection on loss
Reflection on loss reconciled the past losses of self and identity in relation to the
present. Reflection also objectified the patient’s past losses from the associated
feelings. Within this expression of hope defiance was not identified as what could be
done but rather identified by what the patient had previously attempted. Within
stroke, reflecting on loss may be seen as a part of passive hope, created from
disappointments during rehabilitation (Wiles et al., 2002) or from losses identified
and change from the patients healthy pre-stroke identity (Barker & Brauer, 2005).
Within SCI loss could also be considered by the ostensible predetermined nature of
the future (Lohne & Severinsson, 2004b). Some patients with MS identified a
continual reflection on loss(es), possibly representing chronic sorrow.
Accordingly, patients required time to reflect on their personal losses. This
expression represented a way patients were able to detach from the emotions and the
experience of loss. The key difference between reflection on loss and no hope is
the detachment or objective view of illness that is expressed and the degree of
acceptance that is achieved. The patient’s reflection on loss did not prevent
engagement with rehabilitation services.
Hope in possibility
Hope in possibility reconciled the present circumstances with what the future may
bring. It was an expression that suggested a patient’s present identity was inte-
grated into how he or she related to his or her illness. The future possibilities implied
defiance was possible. This theme is characterised by openness to change and

willingness to accept what might happen in the future. In stroke research, acceptance
of what has happened, letting go of a past self and looking positively to a new
life were important aspects of self-healing (Arnaert et al., 2006). Within the stroke
literature it was important not to finalise hope and to continue to strive for recovery
(Barker & Brauer, 2005). Simply put, having something to look forward to can keep
patients going (Bays, 2001). Murphy-Miller (1997) found that patients with the
remitting form of MS adjusted well to the condition and learnt to cope and maintain
hope. In contrast, patients with progressive MS identified the need to accept the
nature of the disease and deal with each problem as it arose. Similarly, except for
patients who had a partial SCI no data revealed hope in possibility for the SCI
studies.
Accordingly, this theme at its foundation requires a positive outlook and
acceptance of the change that has happened. The ability to accept the change was
similar between conditions. This theme also suggests that patients’ hopes for the
future are accompanied by an acknowledgement that they may not occur. Stroke
patients afforded more un-finalised and bigger hopes associated with the potential
for physical improvement.
Active hope
Active hope represented an alignment to rehabilitation services. Thus, patients defied
illness by complying with rehabilitation and accepting their prognosis. In the SCI
papers active hope was gained by some physical improvement and supported by
achievement within rehabilitation (Lohne & Severinsson, 2005). Clearly, turning
points and sudden improvement help this (Lohne & Severinsson, 2004b). Active hope
was seen as the ‘right’ way to engage in narrative reconstruction (Barker & Brauer,
2005). It was an important type of hope that promoted optimism in patients. However,
it also encouraged the use of goals and a sense of personal, spiritual and social
connectedness within therapy considered active participation to be a central attribute
in achieving such hope (Arnaert et al., 2006). Bays (2001). Patients with relapsing
remitting MS hoped to manage and maintain function (Murphy-Miller, 1997).
16 A. Soundy et al.
Accordingly, this theme incorporated and focused on user engagement with

therapy. It reflected a patient’s attitude to participation in rehabilitation although the
hopes for each disease differed. Thus, active hope was restricted by what could be
achieved in rehabilitation. It was founded by generating hope through meaningful
action, and it was aided by improvements or turning points in a patient’s recovery. It
could be identified within each neurological condition and was welcomed by health
care professionals.
The personal challenge

The personal challenge was represented by patients who defied illness by retaining or
maintaining their identity, routine or circumstances. Thus, patients acknowledged
change but did not accept that it could influence their lifestyle. The personal challenge
was demonstrated in patients with progressive MS. Patients resisted the change to
their identity that MS imposed despite the consequences that came with this (e.g.,
falling over because of a refusal to use assistive devices). This challenge was also
observed in patients who had suffered a stroke. For example patients may desire to
return to their pre-stroke identity or strive for future goals whilst never becoming
content with these goals (Bays, 2001). This was not specifically addressed in SCI
studies, but it could well have been related to mastering new skills such as completing
a bowel routine (Laskiwski & Morse, 1993) or in patients who have a partial SCI and
potentially more possibility for change in the future.
Accordingly, this theme focuses on the patient’s ability to achieve or maintain his
or her present identity and own personal goals. It relates to a patient’s internal drive
to achieve and maintain physical or functional outcomes. It could be illustrated by
establishing a patient’s big or silent hopes. It emphasised a patient’s autonomy,
independence and a desire to strive for improvements. In MS this theme related to
maintaining a patient’s independence. In stroke it could be identified as trying to
achieve the best outcome in therapy, and in SCI it may be related to mastering new
skills.
Transcendence
Two types of hope transcended illness. One was identified as transcendent hope. This
provided a progressive narrative that celebrated the patient’s present identity and
embraced or was open to a different future identity. The second type of hope, closely
related to this, was concerned with embracing other values in the patient’s life outside
the need for physical improvement.
Transcendent hope
Transcendent hope was reflected within the quest narrative and in many respects was
about post-traumatic growth. It was associated with positive changes following
illness, embracing the future and looking forward to what life could bring each day
(Smith & Sparkes, 2005). This may have been presented by patients with MS as part
of accepting the uncontrollability of the future and embracing this. It may also have
been identified in patients who were able to self-heal. Such patients adjusted to their
illness by embracing it and by looking towards the future as well as letting go of their
past behaviours and identity (Arnaert et al., 2006).
Accordingly, transcendent hope was represented by patients who embraced their
current and future identity and situation. It represented a very positive reaction to
illness that demonstrated the patient’s openness to the future, along with feelings of
joy and excitement. Patients who are able to express transcendence did not feel a
need to defy or change their circumstances. However, whilst recognising that
narrative shapes experience, this reaction may have been a façade to ‘true’ feelings;
a story that one should tell and a story that others want to hear. Thus, it may
romanticise illness.
Value changes
Patients could modify their hope of recovery and focus on other expectations, wishes
or needs. This end point was seen when the hope for physical recovery changed to
hoping for other aspects of life. Lohne and Severinsson (2005) identified patients at
the end of their journey, past the cycle of despair, who were able to achieve an inner
peace and realisation that something positive can be gained from the experience of
SCI. In stroke research, attributes to generate feelings of change in values included: a
new outlook and new goals, optimism and connectedness to self, God and/or family.
Gaining these attributes largely influenced self-healing (Arnaert et al., 2006).
However, patients with SCI who presented this outlook may have been demonstrat-
ing a façade of emotions (Laskiwski & Morse, 1993), and it is quite possible that
patients with MS and stroke could also present this façade.
Accordingly, patients were able to consider hope in different ways that did not
relate to their physical recovery. Value changes emphasised aspects that went past a
need to adjust or defy the illness. Patients embraced their present circumstances by
appreciating what could be achieved without change, by valuing what they are able to
do and by sustaining or developing relationships they had with others. It represents
‘good’ psychosocial adjustment and development of the patient in being able to find
other aspects of life that have importance.
Guiding narratives in rehabilitation: associating hope with narrative outcomes

A realistic understanding of the illness in the current study implied a narrative that
includes some acknowledgement or acceptance of the patient’s present circum-
stances. Research and clinicians may encourage and guide such narratives. The most
encouraged narrative may be one which demonstrates that a patient can hope for the
best while preparing for (acknowledging) the worst (Back, Arnold & Quill, 2003).
Thus, in neurological rehabilitation it seems that narrative emplotment revolves
around encouraging responses to illness that are realistic and contain an acceptance
for the present circumstances. We have used our understanding of hope to create a
new conceptual model that accounts for this.
Figure 1 illustrates how narratives and hopes may be encouraged by health care
professionals. The outline of Figure 1 suggests that the process of developing
narratives occurs from the dichotomy of hope towards the paradox of hope and
transcendence. The model suggests that a patient’s voice changes with time,
reflection, interaction and as a part of adjustment. This may represent a patient
18 A. Soundy et al.
who moves from succumbing to chronic illness towards coping with chronic illness
(Wright, 1983). The centre line provides an idea of acceptance, acknowledgement
and adjustment (Livneh & Antonak, 1997) of the patient’s present circumstances and
the variety of narratives that accompany the move towards a more diversified and
objectified view of illness.
This model shows, firstly, that the process of transcendence requires some degree
of acceptance. This reflects and extends the process Hawkins (1990) describes as
regeneration from an old self to a new self. We suggest a patient’s narrative moves
from the two narratives that represent the dichotomy of hope, towards a larger range
of narratives that are found within the paradox of hope and transcendence.
We also suggest that a patient’s emotions can restrict the ability to present an
objective view of illness through a narrative. This may be apparent in patients who
have not had enough time to express, reflect or experience their illness, and the fears
that often go with being ill. It can be too apparent in patients who are experiencing
cycles of hopelessness and despair. Alternatively, it may be present in patients who
cannot accept any other hope other than their concrete hope. These situations are
problematic because changing the patient’s narrative is more difficult.
Discussion
This paper used hope to generate original and timely knowledge on the narrative
macrostructures identified during neurological rehabilitation. We used our pre-
viously identified categories of hope as a way to distinguish patients’ responses to
their diagnosis. The first two categories, hope as a dichotomy and hope as a paradox,
were associated with different responses to illness and the expectation or hope for
improvement. The third category of transcendence represented an embracement of
the patient’s present identity or circumstances. The prognosis of each neurological
condition often guided the patients’ responses to their crises. Patients with MS
experienced less optimism from the outset of their illness. They accepted that there
was little hope for change whilst also they had to embrace the possibility of continual
losses that could result from MS. Patients with SCI expressed a desire to be restored,
thereby directing hopes towards the future. That noted, they also experienced cycles
of despair. Patients who had suffered a stroke expressed more positive anticipation of
changing their present situation. Often hopelessness was experienced by patients who
suffered a stroke when there was stagnation in progress, or when disappointment was
experienced regarding the progress they were making. It would appear that patients
with MS and SCI may need more time to reflect and come to terms with the future
change to their identity and/or continual losses they experience. The need for
reflection is also influenced by other factors such as previous identity, age and
support network (factors not focused on within the current article).
Hope and narrative macrostructures

The eight narrative macrostructures identified in our study could represent the illness
narrative macrostructures identified by other research. Each grouping though
provided distinct responses to illness. Narratives that represented a dichotomy of
hope lacked acceptance or acknowledgement of the patient’s present circumstances.
These narratives did not allow patients to reflect or experience any detachment or
objectivity about their illness. This may reflect the patient’s shock, disbelief and
uncertainty about what had happened.
The paradox of hope suggests that accepting or acknowledging illness is a
question posed for patients following their diagnoses or at times of difficulty or
change. Thus, acceptance may not always be a later stage reaction as identified by
stage and ecological models of adjustment (Smedema et al., 2009). Rather,
acceptance is process that is integrated into the patient’s response to illness and
must be considered relative to the context within which the patient uses it (Charmaz,
1991; Kübler-Ross, 1969). Hopes that fall within a paradox illustrate an acknowl-
edgement of the present circumstances and an ability to cope with what has
happened (Wright, 1983). Narrative macrostructures that fall within this category are
often more stable and realistic. These narratives demonstrate development and
change from the dichotomy of hope.
The paradox of hope suggests that through acknowledgement of illness both
acceptance and defiance can be demonstrated by patients. For example, no hope and
the experience of loss may be aided by allowing time for reflecting on loss. Thus, the
chaos narrative may become a sad narrative or tragic narrative as the patient begins
to reconcile loss. This, in turn, provides opportunity for other narratives, such as the
comic, ironic, detached or didactic narrative, to develop a reflective commentary of
the illness. This helps move the patient’s expression from the past to the present and
future, giving him or her the opportunity to express defiance of the illness.
Alternatively, concrete hope could be adjusted to, or accompanied by hopes that
are more certain and obtainable, expanding the possibilities for defiance. This can be
established through hope in possibility and developing an implicitly heroic narrative.
It can also be established by adjusting the source of hope. An external source of hope
(such as medicine) may be changed to hope that is created through taking action.
Hope created by taking action will help develop a sense of independence and
autonomy. This change could be illustrated by a patient who changes from a
restitution narrative to the detective narrative or explicitly heroic narrative. An
important ingredient of these narratives is the need to search for change and
possibilities for improvement. Realising this is often the ‘turning point’ of success
stories for patients with neurological conditions (e.g., Atkinson, 1998; Hansen,
2004).
Finally, transcendence disassociated patients from wanting their disease to
change. This was represented by the patient achieving a self-acceptance and
identifying a way of coping or finding meaning with what had happened (Wright,
1983). This demonstrates an embracement of the future and an ability to establish
hopes outside the illness. Value changes can reflect a didactic narrative or a religious
narrative and patients telling such narratives may have regained a sense of purpose
for their life. Hope can be generated by value changes at any point during illness.
Thinking with narratives

Barnard (1995), and more recently Frank (2004), suggest that a careful re-
moralisation of the patient is required. Klienman (1988) defines re-moralisation as
the process of instilling hope and courage that have been lost through demoralising
events or interactions associated with illness. Interactions may be carefully re-
moralised through health care professionals asking the appropriate questions to the
20 A. Soundy et al.
patient. Whilst seeking to respect alterity the other as other (Frank, 2004; Smith,
2008), these questions might include responses that create sympathy (how would I
feel in their situation?) and empathy (what would I say to my best friend?) when
relating to a patient’s narrative (Soundy, Smith, Cressy & Webb, 2010b). In addition,
Frank (2008) suggests that a key question to ask is ‘What happened to you not
your disease, but what’s happened to your life?’ This is valuable as it helps encourage
reflection and some distance from the emotions of the illness. It does what narratives
are good at doing: taking care of people by not only affirming or containing, but also
by deferring, by putting illness at a distance, especially a temporal distance (Frank,
2004). Health care professionals may explore other questions, including ‘What advice
has been given to the patients by others?’ or ‘What were other patients’ responses to
the illness?’
These questions may help both the health care professional and the patient in
understanding and exploring the process of hoping. They encourage an openness to
other narrative macrostructures and can empower the patient’s voice by honouring
his or her story and body within rehabilitation. Questions help create an opportunity
to use time in the process of hoping, from reflecting on the past towards imaging the
future. This process helps the patient to defer or objectify the present circumstances
and provides the health care professional with an opportunity to establish how the
patient uses acceptance. This is useful for those patients who cannot accept what has
happened to them.
Recognising narratives qualities

Health care professionals may be called to examine the type and qualities of each
narrative (see Table 1). The orientation of narratives towards time generates change
in the chaos and restitution narratives. For example, asking a patient who is
experiencing chaos about the future implies there is a future to get to (Dolan, 2004).
Narratives are associated with a patient’s adjustment and constitute what can and
cannot be accepted. Thus, narratives may be changed by considering and exploring
acceptance, as that in itself varies from patient to patient (Charmaz, 1991).
Limitations
There are several limitations to this review. First, the narrative macrostructures are
limited by several factors: (1) the current research is limited to three neurological
conditions and should be cautiously examined for a wider application in neurological
and other chronic conditions. (2) Previous research conducted and theory generated
may have influenced our analysis and subsequently the generation of narrative
macrostructures. This may be limiting in terms of the creation or output
of macrostructures. (3) This research does not consider progression between different
narratives or how fast each patient could achieve different or desired narratives.
Further research could consider how each outcome is linked and develops
longitudinally. It should also examine what factors may instigate change in a
patient’s narrative macrostructure.
Second, the way we undertook this meta-ethnographic approach was extremely
rigorous and methodical, but does not subscribe to any call for universal pre-
ordained techniques. For instance, the procedures for the selection of studies used
here were detailed. However, as yet there is no universally agreed-upon criteria in the
literature about selecting studies. This might be considered a benefit as it leaves open
interpretive possibilities for researchers. However, it may also be seen by some
seeking universal pre-ordained techniques a limitation as the procedures of meta-
ethnography become difficult to replicate in a pre-determined, formulaic, linear
manner. Additionally, the sample this paper reports on consists of 10 studies. This is
more than the small groups (26 papers) of closely related studies presented by
Noblit and Hare (1988) in their monograph describing the meta-ethnographic
method. However, in recent years researchers have included a greater number of
papers, for example, 7 as in the case of Campbell et al. (2003) to 16 studies as in the
work of Malpass et al. (2009).
Conclusion
Using a meta-ethnographic approach, this paper produces an original synthesis of
qualitative research studies on neurological patients’ perspectives of illness, hope and
adjustment. It has provided for the first time a detailed description and analysis of
how hopes and narratives are presented within patients with three neurological
conditions. On the basis of these findings, we have also developed a new conceptual
model for understanding hope, narrative and adjustment. Patients with neurological
illnesses appear to present common experiences. Where there is the possibility of
improvement patient’s narratives may be seemingly more hopeful, whereas following
the event, diagnosis, plateau or in experiencing uncertainty and exacerbation of
symptoms, patient’s narratives may represent suffering and more loss. Hope varies on
a continuum that represents a patient’s experience. Understanding what a patient can
accept can be an important consideration in helping and promoting a patient’s
psychological well-being. The most difficult narratives to hear and adjust are those
that depict extreme views (e.g., chaos and restitution) with a reluctance to alter what
can be accepted.
Finally, we would like to suggest that the usefulness of our meta-ethnography is
not only in its ability to bring together a growing body of work and accumulate
knowledge but also allows researchers to question and challenge existing literature.
This process of synthesis allowed us to bring previous themes together, to use insights
from one article and ask how other articles can further this information by
illustrating how and if narratives exist in other papers and other conditions. In
short, the review enables us to provide a valuable synthesis to develop existing
knowledge, but not in order to find the truth in correspondence terms. Rather, a
truth that can be taken forward, challenged and confirmed in other settings is what
we offer. In so doing, the paper goes beyond a summary and critique that is
traditionally found in the reviewing process.
Implications
This review and model that arises from it provide several implications that relate to
research and clinical practice. Concrete hope and no hope in patients appear to be
extreme reactions that represent an inability by patients to accept present
circumstances or a realistic hope. However, they are important reactions and need
to be treated with care. It is possible that individuals with MS or SCI have a greater
22 A. Soundy et al.
experience of, or are more drawn towards, the restitution narrative and display a
need to reflect on loss or experience chaos. Therefore, these patients present
narratives that fall within a paradox of hope less frequently.
A patient’s narrative should not be labelled with a particular type of adjustment
or hope by a health care professional but rather they should support opportunities
for change in the patient’s narrative through listening, encouragement and offering
different stories. The types of hope narratives we have identified here can play an
important part in this process. They can act as guides to patient’s storytelling and
health professional’s listening (Frank, 1995). With these as a guide or reference, those
who listen to people telling stories can more readily hear different threads in the
fabric of an ill person’s story. The listener can attend to which thread or type of
narrative of hope seems to dominate the story, how these shift and change over
time and how each takes care of people for better or worse. Health care professionals
can also encourage change in a patient’s narrative by offering alternative narratives
to the ill person, thereby increasing their narrative resources to draw on to frame
their illness experience. The complimentary value of identifying different kinds of
hope narratives for ill people is to assist in naming the differences between
experiences (Frank, 1995). Naming types of narratives of hope can enable people
think about what story of hope they are telling, what the story is doing for and on
them and what story they might want to tell in the future. Naming narrative types, as
we have done here, can authorise the telling of certain stories of hope, and it can also
liberate people from stories of hope they no longer want or can tell (Frank, 1995;
Smith & Sparkes, 2005).
Finally, these findings may represent and extend to other neurological conditions,
specifically those that fit the first three classifications of neurological pathologies by
the Department of Health (2005). These are illnesses that are defined as (1) acute and
sudden onset, (2) intermittent and unpredictable and (3) stable with changing needs.
However, further research is required to establish and critique what has been
generated from this meta-ethnography.
Acknowledgements
Our thanks to Dr Lyons for editorial comments and support. Also thanks to the three
reviewers for their insightful comments on earlier drafts of this paper.
Note
1. Barnard takes this concept from Becker’s (1973) ‘existential boundary’.
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Patient's expression of hope and illness narratives in three neurological

Article in Health Psychology Review · April 2011

Andrew Soundy Brett Smith

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Helen Dawes Jill Ramsay

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Patient’s expression of hope and illness narratives in three neurological

*Corresponding author. Email: A.A.Soundy@bham.ac.uk

Before turning to a description of this approach, it is important to introduce the

The macrostructure of illness narratives

Hope and narrative

Table 1. Showing the different illness narrative types.

2009), as well as some degree of defiance, challenge or search as a response to illness.

It is a narrative that has no hope.

The emplotment of narratives

narratives available. Any understanding of narratives therefore must consider the

Providing an in-depth understanding

With this criteria guiding the process of synthesis, we undertook an electronic

Literal interpretation of study themes Idiomatic interpretation of study themes

General comments  Hope varies by the very nature of the

particularly if the goals were attainable. hope.

Commentary literal and idiomatic

Table 4. Translating studies together: example of SCI studies.

The expression of hope in SCI studies

Adjustment experiences and knowledge with time, objectivity and hope

Hope removing aspects

Table 5. A comparison of hope between each neurological condition.

Reciprocal factors or Refutational factors Line of argument

passive hope. may be encouraged. told by patients who adjustment more

Present and Future Accepting

Health Psychology Review

Present and Past Reflecting view:

Figure 1. Guiding narratives in neurological rehabilitation.

defiance was possible. This theme is characterised by openness to change and

Accordingly, this theme incorporated and focused on user engagement with

The personal challenge

Guiding narratives in rehabilitation: associating hope with narrative outcomes

problematic because changing the patient’s narrative is more difficult.

Hope and narrative macrostructures

Thinking with narratives

Recognising narratives qualities

Sociology of Health and Illness, 13, 451468. doi:10.1111/j.1467-9566.1991.tb00522.x

Norwood, NJ: Ablex.

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General comments Hope varies by the very nature of the