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Quest, Chaos and Restitution:
Narratives of People with Aphasia
Esther Pettit, Dr Julia Stewart and Julie Frayling
Narrative type
Participant
Data extract
Chaos
Mary
It was a bit difficult at first for me to
realise
I had
a stroke and (.) um (.) it was (.) um (.) a bit
difficult because I had
fear
Chaos
Simon
I was in
cuckooland. I couldn’t say…I didn’t
know anything
Chaos
Dan
Yeah
really anxious, really scared (.) erm (.) a
little bit useless. I felt like (.) sometimes (.) a
piece of meat
Restitution
Mary
All the help the SLTs were giving me (.) oh it was
wonderful that. I don’t know if I (.) say (.) hadn’t
had that (.) I wouldn’t have made the same
recovery
Restitution
Simon
I need to thank my wife for starting me
immediately on the process of going to rehab
Restitution
Dan
((talking about using
mindmapping at work)) I
had that and it was a visual thing that really
made sense to me. I’ve gone back to doing what
I do normally now
Quest
Mary
This was the transition I think (.) to me (.) being
determined and having positivity
Quest
Simon
My wife tells me I’m a very positive person (.) so
I’m determined to overcome the struggles
Quest
Dan
Yeah, I’m more appreciative…I’m a little bit more
positive about things because where you are
and where you’re going are two completely
different situations…Nothing stops you! Nothing
can stop you (.) as long as you put your mind to
it.
References
Cruice, M., Hill, R., Worrall, L., and Hickson, L. (2010). Conceptualising
quality of life for older people with aphasia. Aphasiology, 24(3), 327-347.
Frank, A. (1995). The Wounded Storyteller: Body, Illness and Ethics.
Chicago: The University of Chicago Press.
Holland, A. (2006). Living successfully with aphasia: three variations on the
theme. Topics in Stroke Rehabilitation. 13 (1), 25-36.
Holland, A., Brown, K., Worrall, L., Davidson, B., and Howe, T. (2011).
Living successfully with aphasia: family members share their views. Topics
in Stroke Rehabilitation. 18(5), 536-548.
Parr, S., Byng, S., and Gilpin, S (1997). Talking about Aphasia.
Buckingham: Open University Press.
Simmons-Mackie, N., and Lynch, K. (2013). Qualitative research in
aphasia: A review of the literature. Aphasiology, 27(11), 1281-1301.
Introduction
A range of qualitative methods have been used in aphasia
research (Simmons-Mackie and Lynch, 2013) providing insight
into people’s lived experience of aphasia. Parr et al’s (1997)
seminal work found that the impacts of aphasia are extensive
and complex, and sparked interest in exploring the ‘insider
perspective’ and hearing the unique voices of people with
aphasia. Research has focused on how people live
successfully with aphasia (Holland, 2006; Holland et al, 2011)
and which aspects of quality of life they value as most
meaningful and important (Cruice et al, 2010). In this study we
used Frank’s (1995) illness narrative types (chaos, quest and
restitution) to analyse the perceptions of aphasia in three
participants with different aetiologies and experiences.
Method
Three participants were recruited, two people living with long-term
aphasia following stroke and one whose aphasia following
encephalitis had fully resolved. Participants were interviewed in their
own homes using an unstructured interview technique. Interview data
were transcribed, analysed and coded to identify narrative types and
themes within the stories.
Discussion
Chaos, restitution and quest narratives were identified in each of the
participants’ stories about their illness and subsequent language
impairment but a different balance of the narrative types emerged for each
individual. Themes were also identified within each narrative type, enabling
further interpretation of each participant’s perceptions of aphasia.
Similarities were identified with other insider perspective studies into
aphasia but the unique nature of each individual’s experience emerged.
Analysis of narrative types provided a useful insight into the way the
participants adjusted to their communication disorder and the effect it had
on their identity.
Results
Research Aims
To explore the use of narrative types in the stories of people with
aphasia
To consider different perceptions of aphasia in those who have
experienced a full recovery and those with long-standing
impairments
(.) = pause (( )) = contextual information _____ = stressed/emphasised
Thematic analysis led to
additional sub-themes being
identified within Frank’s
(1995) three narrative types:
Fear
Disintegration
Isolation
Mary – 63-year-old woman, married, 2 children.
Severe non-fluent expressive aphasia following
ischaemic stroke 11 years ago, 3 months as
hospital inpatient. Residual difficulties – mild
expressive aphasia, right side hemiparesis.
Simon – 64-year-old man, married. Severe non-
fluent expressive aphasia following ischaemic
stroke 5 years ago, 2 months as hospital inpatient.
Residual difficulties – mild expressive aphasia,
right side hemiparesis.
Dan – 54-year-old man, married, 2 children.
Moderate non-fluent expressive aphasia and
dysgraphia following acute cerebellitis (a form of
post-viral encephalitis) 3 years ago. Language
and motor difficulties now fully resolved, mild
residual memory difficulties.
Participants
