Third party references and accompanying others. Catherine Robson

393 Pages·2014·5.95 MB·English

by  Catherine Robson

Seizure clinic encounters:
Third party references and accompanying others.

Catherine Robson

Submitted for the degree of Doctor of Philosophy

The University of York
Centre for Advanced Study in Language and Communication
Department of Sociology

March 2013
Abstract

There are two different types of seizures, epileptic and psychogenic non-
epileptic seizures (PNES) - the seizures can look the same and have the same
features. Despite the impressive increase in our biomedical knowledge it is
difficult for neurologists to differentiate between these seizure conditions; and
many of the tests used cannot, on their own, confirm a diagnosis. However, it is
crucial to get the diagnosis right because the choice of treatment critically
depends on the cause and nature of the seizures. Consequently, history-taking
and the interaction between patient and doctor remains key to the investigation
and correct and effective treatment of epilepsy and PNES.
Recent research indicates that the close examination of doctor-patient
encounters not only enables us to identify linguistic and interactional features
that help with the diagnosis of epilepsy and PNES, but also yields helpful
psychological insights into how people with seizures experience their disorder.
Previous work has alerted researchers (and neurologists) to the important role
that references to others not present during consultations (third parties) can play.
However, previous studies have not examined or described the use of these third
party references in detail. This thesis investigates the use of third party
references and seizure witness accounts by participants experiencing refractory
seizure disorders using secondary data collected during 20 one-to-one doctor-
patient consultations.
Moreover, patients are routinely invited to bring seizure witnesses and
companions along to their first as well as to subsequent visits to seizure clinics.
Despite the important diagnostic roles companions are thought to play in these
encounters, no previous studies have focussed specifically on their contribution
to the interaction between patients and health professionals. To help advance
what is known about accompanied interactions in the seizure clinic, 50 patients
attending a specialist outpatient seizure clinic consented to participate in an
observational study.
Findings from this research, funded by the charity Epilepsy Action, help
inform existing models of interactional criteria that distinguish between the
linguistic and communicative features of PNES and epilepsy patient seizure
descriptions. The findings suggest that doctors utilising the differential interactive,
linguistic and topical features of seizure patient talk need to carefully consider
how they conduct and structure these consultations, and recommendations are
offered in this respect. Finally, avenues of future research are discussed.
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Contents

Abstract 2
Contents 3
List of Tables 6
List of Figures 6
Acknowledgements 7
Declaration of Originality 8
Chapter one: Introduction 9
1. Introduction 9
1.1 Ethical consent and regulatory approval 14
Chapter two: The differential potential of interactional features in 15
seizure patient talk: a comprehensive review of the literature
1. Introduction 15
1.1 Aims and objectives 16
2. Methodology 17
2.1 Criteria for inclusion and exclusion 17
2.2 Development of a search set 21
2.3 Search strategy 22
3. Results 23
3.1 Communication profiles of patients with epilepsy and 23
patients with PNES
3.2 Initiation and focus 31
3.3 Description of periods of reduced consciousness 33
3.4 Subjective seizure symptoms 38
3.5 Formulation effort 40
3.6 Seizure metaphors 44
3.7 Labelling 47
3.8 Emotional displays 47
3.9 Coping styles 48
3.10 Third party witnesses 50
4. Discussion 52
4.1 Interactive resistance 52
4.2 Subjective capacity 56
4.3 Third party references 61
5. Limitations 63
6. Conclusion 66
Chapter three: Distinguishing features of third party references in 71
doctor-seizure patient encounters
1. Introduction 71
1.1 Aims and objectives 72
2. Methods 73
2.1 Participants 73
2.2 Interview method 74
2.3 Analytical approach 75
2.4 Coding frame development 76
2.4.1 Third party references 77
2.4.2 Seizure-related third party references 80
2.4.3 Spontaneous and prompted third party references 82
2.4.4 Patient’s relationship to the third party referenced 86
2.4.5 ‘Seizure-related third party references’ used in 88
‘catastrophising’ and ‘normalising’ accounts
2.4 Coding procedure 101
2.5 Statistical methods 103

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3. Results 105
3.1 Clinical and demographic features of patient groups 105
3.2 Third party references. 106
3.2.1 ‘Spontaneous seizure-related third party references’ 106
3.2.2 ‘Prompted seizure-related third party references’ 107
3.2.3 ‘Seizure-related third party references’ – relationship to the 107
patient
3.2.4 ‘Normalising - seizure-related third party references’ 108
3.2.5 ‘Normalising - spontaneous - seizure-related third party 108
references’
3.2.6 ‘Normalising - prompted - seizure-related third party 109
references’
3.2.7 ‘Catastrophising - seizure-related third party references’ 109
3.2.8 ‘Catastrophising - spontaneous - seizure-related third party 110
references’
3.2.9 ‘Catastrophising - prompted - seizure-related third party 110
references’
3.2.10 Diagnostic differentiation: ‘Seizure-related third party 111
references’ used in ‘catastrophising’ and ‘normalising’
accounts
4. Discussion 111
4.1 Third party references 112
4.2 ‘Seizure-related third party references’ – relationship to the 113
patient
4.3 ‘Seizure-related third party references’ used to ‘catastrophise’ and 116
‘normalise’
5. Limitations 120
6. Conclusion 122
Chapter four: The presence of accompanying persons in medical 124
interactions: a comprehensive review of the literature
1. Introduction 124
1.1 Aims and objectives 127
2. Methods 128
2.1 Search strategy 128
2.1.1 Inclusion criteria 129
2.1.2 Exclusion criteria 129
2.2 Data extraction and analysis 131
3. Results 132
3.1 Study characteristics 133
3.2 The proportion of patients accompanied to medical visits and 134
accompanied patient and companion characteristics.
3.3 Methods used in observational studies of accompanied patient 138
interactions
3.3.1 Quantitative methods 139
3.3.2 Mixed methods 143
3.3.3 Qualitative methods 146
3.4 The effects of companions in observational studies of (recorded) 148
accompanied adult patient interactions.
3.4.1 Duration and participant discourse spaces. 149

3.4.2 Formation of coalitions 152
3.4.3 Role of the companion 152
3.4.4 Topical areas of discussion 157
3.4.5 Participant behaviours and patient outcomes 158
4. Discussion 161
4.1 Comparability of studies 168
5. Limitations 174
6. Conclusion 176
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Chapter five: Duration and structure of initial (diagnostic) 178
accompanied and unaccompanied neurology outpatient encounters
1. Introduction 178
1.1 Aims and objectives 179
2. Methods 180
2.1 Data collection 180
2.2 Procedure 181
2.3 Statistical methods 184
3. Results 185
4. Discussion 188
5. Limitations 193
6. Conclusion 194
Chapter six: The effects of spouse or partner seizure-witness 196
companions in seizure-clinic encounters
1. Introduction 196
1.1 Aims and objectives 197
2. Methods 198
2.1 Data collection 198
2.2 Sample selection 198
2.3 Statistical methods 199
2.4 Qualitative methods 200
2.4.1 Descriptive research methods 200
2.4.2 Qualitative analyses: a hybrid approach 202
2.4.3 Procedure 206
2.4.3.1 Companion involvement mechanisms 207
2.4.3.2 Subjective seizure symptoms 208
3. Results 210
3.1 Statistical results 210
3.2 Topical consultation and history-taking phases 213
3.3 Companion involvement mechanisms 219
1) The companion was invited by the doctor 220
2) The patient invited the companion 240
3) The companion self-initiated 246
3.4 Subjective seizure symptoms 255
4. Discussion 271
4.1 Companion involvement mechanism 274
4.2 Subjective seizure symptoms 284
5. Limitations 285
6. Conclusion 288
Chapter seven: Conclusion 291
1. Introduction 291
2. The differential potential of interactional features in seizure patient talk 291
3. Distinguishing features of third party references in doctor-seizure 294
patient encounters
4. Accompanying persons in medical interactions 296
5. Accompanying others in seizure clinic encounters 301
5.1 Duration and structure of initial (diagnostic) accompanied and 301
unaccompanied neurology outpatient encounters
5.2 The effects of spouse or partner seizure-witness companions in 303
seizure-clinic encounters
6. Accompanying others in seizure clinic encounters – future directions 306
and recommendations
7. Conclusion 313
Appendix 314
Glossary 371
List of References 372

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List of Tables

Table 1: Clinical and demographic features of patients with PNES 106
and epilepsy
Table 2: Group differences in the number and type of third party 107
references made by patients with PNES and patients with
epilepsy
Table 3: Analysis of patient-third party reference relationship 108
categories by diagnostic group
Table 4: Group differences in the number of normalising third party 109
references made by patients with PNES and epilepsy
Table 5: Differences in the number of ‘catastrophising - seizure- 110
related third party references’ made by patients with PNES
and epilepsy
Table 6: ‘Catastrophising seizure-related third party references’ used 111
in consultations with people with epilepsy and people with
PNES
Table 7: ‘Normalising seizure-related third party references’ used in 111
consultations with people with epilepsy and people with
PNES
Table 8: Clinical and demographic features of accompanied and 185
unaccompanied consultations
Table 9: Differences in the length (minutes) and total number of words 186
spoken in unaccompanied and accompanied consultations
Table 10: Differences in the number of words spoken and discourse 186
spaces of participants in unaccompanied and accompanied
interactions
Table 11: Differences between and correlation of the discourse spaces 188
of participants in unaccompanied and accompanied
interactions
Table 12: Clinical and demographic features of PNES and epilepsy 211
patient groups
Table 13: Differences in the discourse spaces of participants in 212
interactions with seizure patients accompanied by their
seizure-witness spouse or partner.
Table 14: Patients with PNES or Epilepsy accompanied by their (seizure 213
witness) spouse: differences in the proportion of the total
number of words spoken (%) by participants

List of Figures

Figure 1: EpiLing ‘interview’ structure 74
Figure 2: Patient-third party reference relationship categories 86
Figure 3: Thematic analysis of 'positive' and 'negative' contexts 90
Figure 4: Topical history-taking phases 214
Figure 5: Companion involvement mechanisms summary 219

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Acknowledgements

This thesis would not have been possible without sponsorship from Epilepsy
Action, and special thanks go to Margaret Rawnsley for her constant kindness
and support.

I am also indebted to all those who agreed to participate in this research.
Attending an initial (diagnostic) consultation in a specialist seizure clinic can be a
daunting prospect. I am eternally grateful to the people who participated in this
study for sharing their experiences and for allowing me to record their
consultations. I also need to thank the neurologists working in the seizure-clinic
at the Sheffield Royal Hallamshire who consented to having their practice
recorded.

I owe a huge debt of gratitude to my supervisors, Paul Drew and Markus Reuber.
Both have provided excellent supervision and endless enthusiasm for the
research project over the last three years. I also need to thank them for
supporting me through challenges that lay beyond the bounds of academia.

I could not have completed this thesis without the unwavering support and
encouragement of my family, friends and loved ones.

There is a poignant line in the film Stand by Me (1986): “I never had any friends
later on like the ones I had when I was twelve. Jesus, does anyone?” I am
fortunate enough to still have the friends I had when I was twelve. Faye, Jo,
Charlene, Lindsey and Nat, thank you for picking me up and dusting me off more
times than I care to remember.

I need to thank my wonderful brother and sister, Stuart and Angela, for always
given me something to fight for. I also thank my beautiful nieces, Faith and
Violet, for never failing to remind me what life is really all about.

Special thanks go to my partner Raymond, who has provided endless cups of
tea, shared in all the ups and downs associated with writing a thesis, and has
believed in me when I haven’t had the strength to believe in myself.

Finally, I need to thank my parents. My father passed away six weeks before I
started my first (undergraduate) degree at York and my mother passed away
before this thesis was completed. Ah reckon thai’d both b’reet chuffed wi thea
lahl lass.
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Declaration of Originality

In accordance with the University regulations, I hereby declare that I am
responsible for the work submitted in this thesis, that the original work is my own,
and that neither the thesis nor the original work contained therein has been
submitted to this or any other institution for a higher degree.

A version of Chapter three has been published in the journal Seizure: The
European Journal of Epilepsy and a version of Chapter five has been published
in the journal Epilepsy and Behavior.

Robson, C., Drew, P., Walker, T. and Reuber, M. (2012). Catastrophising and
normalising in patient's accounts of their seizure experiences. Seizure: The
European Journal of Epilepsy, 21(10), 795-801.

Robson, C., Drew, P. and Reuber, M. (2013) Duration and structure of
unaccompanied (dyadic) and accompanied (triadic) initial outpatient
consultations in a specialist seizure clinic. Epilepsy & Behavior 27(3), 449-454.

Signed: .......................................................................................................

Date: ...........................................................................................................

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Chapter one: Introduction

1. Introduction

Psychogenic non-epileptic seizures (PNES) are defined by their superficial
resemblance to epileptic seizures. However, unlike epileptic seizures, PNES are
not the result of abnormal electrical discharges in the brain, but are generally
interpreted as physical manifestations of psychological distress and the result of
dissociative processes (Reuber, 2008). Given the similarities in the visible
manifestations of epileptic seizures and PNES, the differentiation between
these two seizure disorders can be difficult, even for the most experienced
clinicians. However, it is crucial to get the diagnosis right because the choice of
treatment critically depends on the cause and nature of the seizures. People
with epilepsy are treated with anti-epileptic drugs (AEDs), and people with
PNES are treated with psychotherapy.

Despite recent progress in imaging technology and improved access to
investigations such as video-electroencephalogram (EEG) monitoring, tilt-table
tests and implantable electrocardiograph (ECG) recorders, history-taking from
patients remains central to the diagnostic process (Angus-Leppan, 2008).
Interictal tests such as brain magnetic resonance imaging (MRI) and EEG can
show nonspecific changes or appear normal in over two-thirds of patients
presenting after an unprovoked epileptic seizure (Angus-Leppan, 2008 and
Kotsopoulos, de Krom and Kessels, 2003). The same tests can show
(unexpected) abnormalities in more than one-fifth of patients with PNES
(Reuber et al, 2002a). In addition, (expensive) video-EEG telemetry captures
typical events in only one-half to two-thirds of patients referred for testing
(Benbadis et al, 2004; Ghougassian et al, 2004 and McGonigal et al, 2004).

To date, only a modest number of studies have focussed on the diagnostic
value of different aspects of history-taking when patients present with transient
loss of consciousness. For instance, it has been shown that clusters of factual
items (such as the presence of presyncopal symptoms or postictal confusion)
can differentiate well between epileptic seizures and syncope (Kotsopoulos, de
Krom and Kessels, 2003; Sheldon et al, 2002 and Hoefnagels et al, 1991).
However, it is not clear that this approach works reliably for the differentiation of
epilepsy and PNES. For example, a number of studies have demonstrated that
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some clinical features traditionally used by doctors to inform their diagnosis
(such as seizures from sleep or pelvic thrusting) have no predictive value
(Geyer, Payne and Drury, 2000 and Duncan et al, 2004).

In view of this, it is perhaps not surprising that studies in different clinical
settings have identified misdiagnosis rates ranging from 5 to 50% (Benbadis et
al, 2004; Scheepers, Clough and Pickles, 1998; Howell, Owen and Chadwick,
1989 and Smith, Defalla, and Chadwick, 1999), with an average estimated as
ranging between 20% and 30% (Stokes et al, 2004). Most patients with PNES
are initially thought to have epilepsy, and it typically takes several years for the
correct diagnosis of PNES to be made (De Timary, Fouchet, and Sylin, 2002
and Reuber et al, 2002b). This means that many patients are exposed to
inappropriate, ineffective and potentially dangerous drug treatments that may
actually exacerbate their condition, cause iatrogenic injury or even death
(Trimble, 1982; Benbadis, 1999 and Reuber et al, 2004). It is also important to
consider the cost implications of misdiagnoses. The total treatment cost
attributable to erroneous diagnoses of epilepsy has recently been estimated to
be £138 million per year for NHS and social care services in England and
Wales alone (Juarez-Garcia, Stokes and Shaw, 2006).

The research presented in this thesis is part of a multidisciplinary programme of
study involving sociologists, linguists and neurologists at the Universities of
Sheffield and York (UK). Building on previous work using an approach derived
from Conversation Analysis (CA) and carried out in Bielefeld, Germany (Guelich
and Schoendienst, 1999; Schoendienst, 2001; Furchner, 2002 and Surmann,
2005, cited in Schwabe et al, 2008), the programme aims to improve the
effectiveness of the history-taking process for the purpose of distinguishing
between epileptic seizures and PNES.

So far researchers have demonstrated that the observations made in
conversations with German patients can be replicated in English clinical
encounters (Schwabe, Howell and Reuber, 2007), that patients with epilepsy
and PNES use different metaphoric conceptualisations for their seizure
experiences (Plug, Sharrack, and Reuber, 2009b and Plug, Sharrack, and
Reuber, 2011), that they prefer different labels for their seizures (Plug,
Sharrack, and Reuber, 2009c) and that patients with epilepsy are more likely to
volunteer subjective accounts of seizure symptoms than patients with PNES
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