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Student Identification Number: 3525357.

EXPERIENCES OF CRITICAL CARE NURSES
CARING FOR ADULT PATIENTS WITH
GUILLAIN-BARRÉ SYNDROME.

A Dissertation submitted in partial fulfilment of
the requirements for the MSc (Adult Nursing).

Name: Forest Bennie-Slocombe.

School of Health and Social Care.
London South Bank University.

May 2018.

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DECLARATION.

I hereby declare that this dissertation is the result of my own independent investigation,
except where I have indicated my indebtedness to other sources.

I hereby certify that this dissertation has not been accepted in substance for any other
degree, nor is it being submitted currently for any other degree.

MSc Dissertation Entitled:

Experiences of critical care nurses caring for adult patients with Guillain-Barré
syndrome.

Word count: 13,162 words.

Student name: Forest Bennie-Slocombe.

Student Signature: __________________________

Student Identification Number: 3525357.

Date: 21st May 2018.

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Abstract.

Background: Guillain-Barré syndrome (GBS) is the most common cause of non-
traumatic paralysis in the United Kingdom; a complex presentation of symptoms that can
become life-threatening. 40 percent of adults with GBS require treatment on an Adult
Critical Care Unit (ACCU) where the majority of patient assessment, evaluation, and care
is delivered by the critical care nurse (CCN). However, CCNs on an ACCU in a central
London National Health Service (NHS) Trust reported challenges and factors impacting
upon the delivery of this care.

Aim: To explore the experiences of CCNs caring for adult patients with GBS on an
ACCU in a central London NHS Trust.

Methodology: A qualitative study was undertaken conducting semi-structured
interviews with five CCNs who had provided care for this patient group within the last
year on this ACCU. The data was analysed utilising the framework method described by
Pope et al. (2000).

Findings: CCNs experienced multiple challenges and factors impacting upon the
delivery of care. Six themes were identified emerging from CCNs experiences.

Discussion: Three core concepts were developed exploring the experiences of CCNs
caring for this patient group on the ACCU: caring for the aware adult patient with GBS
on an ACCU; previous experiences and perceptions of caring for the adult patient with
GBS on an ACCU; and the critical care environment.

Recommendations: Recommendations were focused upon supporting the CCN in caring
for the adult patient with GBS and the long-term aware patient on the ACCU.

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Acknowledgements.

I would like to thank a number of people for all of the support they have shown me
throughout the process of writing this dissertation.

Firstly, to GAIN: you do wonderful work for a patient group who need it most. Thank
you for your support of this study. My hope is that it helps critical care nurses provide
even better care for adult patients with Guillain-Barré syndrome on an ACCU in the
future.

To my supervisor Siobhan McLernon for going above and beyond in being available to
offer feedback, advice and guidance. It has been so, so helpful.

To the participants and the ACCU of this study. You are people and a place that work so
hard to care for all the patients that are placed into your care. In a weird way, they are so
lucky.

To Leigh Mason for being the constant resource for helping me to see a way forward and
getting this thing done.

To my Mum and Dad for their support, reflections, and willingness to review all and any
of my work. Even from the other side of the world.

To Jennifer Hoddow for the wise words of wisdom always offered and the constant
reassurance that it would all be fine. You have been fantastic.

And finally, to Tom, Chris, and Jim for always being around for a beer when I needed to
talk ideas through. Long may it continue.

Thank you all so much,

Forest.

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Dedication.

For Scott,

An inspiration in the war you wage daily for your recovery from Guillain-Barré
syndrome.

Keep fighting.

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Table of Contents

Title Page.……………………………………………………………………………….1
Declaration. ..................................................................................................................... 2
Abstract............................................................................................................................ 3
Acknowledgements. ........................................................................................................ 4
Dedication. ....................................................................................................................... 5
List of Figures.................................................................................................................. 9
Glossary. ........................................................................................................................ 10

1.0 Introduction. ....................................................................................................... 12
1.1 The adult patient with Guillain-Barré syndrome. .......................................... 12
1.2 GBS on an Adult Critical Care Unit. ............................................................... 12
1.3 Rationale for this study. .................................................................................... 13
1.4 Aim and objectives of this study. ...................................................................... 14

2.0 Literature review. .............................................................................................. 14
2.1 Introduction. ....................................................................................................... 14
2.2 Literature search................................................................................................ 15
2.3 Inclusion/exclusion criteria. .............................................................................. 15
2.4 Articles chosen for review. ................................................................................ 16
2.5 Discussion of the literature................................................................................ 16
2.5.1 Adult patients with GBS on an ACCU have complex nursing care
needs…………………………………………………………………………...16
2.5.2 Caring for this patient group is emotionally intricate. ............................... 18
2.6 Conclusion. ......................................................................................................... 21

3.0 Methodology. ...................................................................................................... 21
3.1 Introduction. ....................................................................................................... 21
3.2 Research theory.................................................................................................. 21
3.3 Study design........................................................................................................ 22
3.4 Research setting. ................................................................................................ 23
3.5 Ethical Considerations. ..................................................................................... 23
3.6 Sample. ................................................................................................................ 25
3.7 Data collection. ................................................................................................... 27
3.8 Data analysis. ...................................................................................................... 27
3.9 Conclusion. ......................................................................................................... 28

4.0 Findings............................................................................................................... 29

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4.1 Introduction. ....................................................................................................... 29
4.2 Themes. ............................................................................................................... 29
4.2.1 The aware patient........................................................................................... 29
4.2.2 The psychological aspects of recovery. ......................................................... 31
4.2.3 The long-term aware patient. ........................................................................ 33
4.2.4 The role of experienced CCNs. ..................................................................... 35
4.2.5 The ACCU setting. ......................................................................................... 37
4.2.6 Collaborative care. ......................................................................................... 38
4.3 Conclusion. ......................................................................................................... 39

5.0 Discussion. .......................................................................................................... 40
5.1 Introduction. ....................................................................................................... 40
5.2 Core concepts: the experiences of critical care nurses caring for adult
patients with Guillain-Barré syndrome on an Adult Critical Care Unit. ..... 40
5.2.1 Caring for the aware adult patient with GBS on an ACCU. ..................... 41
5.2.2 Previous experiences and perceptions of caring for the adult patient with
GBS on an ACCU. ............................................................................................ 44
5.2.3 The critical care environment. ...................................................................... 46
5.3 Limitations. ......................................................................................................... 48
5.4 Recommendations. ............................................................................................. 49
5.5 Conclusion. ......................................................................................................... 49

6.0 Conclusion. ......................................................................................................... 49
6.1 Introduction. ....................................................................................................... 50
6.2 Conclusion body. ................................................................................................ 50

7.0 Reference List. .................................................................................................... 53

8.0 Appendices. ......................................................................................................... 62
Appendix 1: PEO framework. ................................................................................. 62
Appendix 2: Study timetable. ................................................................................... 63
Appendix 3: Interview Guide. .................................................................................. 65
Appendix 4: Health Research Authority (HRA) – “not research” ethics
clearance.…………………………………….………………………66
Appendix 5: Ethics registration with ACCU’s NHS Trust Research and
Development (R&D) Department letter. ............................................ 67
Appendix 6: LSBU Research Ethics Committee approval letter.......................... 68
Appendix 7: Approval email from ACCU Matron. ............................................... 69
Appendix 8: Participant Information Sheet. .......................................................... 70

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Appendix 9: Participant Consent Form. .............................................................. 73
Appendix 10: Example of field notes - Field notes taken during P1 interview. . 74
Appendix 11: Daily staff safety briefing announcement. ..................................... 75
Appendix 12: ACCU staff email re. Recruitment................................................. 76
Appendix 13: Potential participant letter of invitation. ....................................... 77
Appendix 14: P1 Interview Transcript. ................................................................. 78
Appendix 15: P2 Interview Transcript. ................................................................. 95
Appendix 16: P3 Interview Transcript. ............................................................... 109
Appendix 17: P4 Interview Transcript. ............................................................... 122
Appendix 18: P5 Interview Transcript. ............................................................... 136
Appendix 19: The framework method: Step One – Researcher familiarisation
with data record. ............................................................................ 148
Appendix 20: The framework method: Step One – Key ideas. ......................... 149
Appendix 21: The framework method: Step Two – Index of in-vivo codes. .... 150
Appendix 22: The framework method: Step three – Numbered codes deduced
from in-vivo codes. ......................................................................... 152
Appendix 23: The framework method: Step Three - Extract of coding: P3
interview transcript. ...................................................................... 153
Appendix 24: The framework method: Step Four – Example of arranging data
to appropriate section of thematic framework. .......................... 155
Appendix 25: The framework method: Step Four – Themes and categories. . 156
Appendix 26: The framework method: Step Four – Charts of participants’
distilled summaries. ....................................................................... 158
Appendix 27: The framework method: Step Five – Three core concepts. ....... 177
Appendix 28: The framework method: Step Five – Themes and categories
within core concepts. ..................................................................... 180
Appendix 29: Social and demographic data collection information. ................ 182
Appendix 30: Email from National Institute for Health and Care Excellence
(NICE) re. Protocol for Guillain-Barré syndrome. .................... 183

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List of Figures.

Figure 1 Word cloud for P3’s experiences of the aware patient.
Figure 2 Intertwining categories within the long-term aware patient.
Figure 3 Intertwining categories within the ACCU setting.
Figure 4 The three core concepts within the experiences of CCNs caring for adult
patients with GBS on an ACCU in a central London NHS Trust.

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Glossary.

Adult Critical Care Unit.
A designated area of a hospital staffed by specialised medical professionals dedicated to
the care of critically unwell patients.

Categories.
Clusters of codes grouped into similar and interrelated ideas or concepts arranged during
data analysis.

Charting.
Entering summarized data into the framework method matrix.

Core Concepts.
Fundamental building blocks of our thoughts and beliefs that are the product of our
experiences.

Critical care nurse.
A licensed professional nurse specialised in caring for the critically unwell patient.

Critically illness.
A life-threatening multisystem process that can result in significant morbidity or
mortality; usually proceeded by a period of physiological deterioration.

Data.
Text that is either elicited, extant, or produced by transcribing interview or creating field
notes.

Guillain-Barré syndrome.
A rapid-onset, progressive muscle weakness caused by an immune response damaging
the peripheral nervous system.

Indexing.
The systematic application of codes to the whole dataset

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In-vivo Code.
A descriptive or conceptual label that is assigned to excerpts of raw data in a process
called ‘coding’.

Long-Term patient.
A patient with a chronic illness or disability who remains on an ACCU for a period of
time greater than seven days.

Matrix.
A spreadsheet contains numerous cells into which summarized data are entered by codes
and cases.

Multidisciplinary team.
A selection of health care workers who are members of different disciplines, each
providing specific services in the care of a patient.

National Health Service.
The publicly funded national healthcare system for England.

Thematic framework.
A structure for the data that is helpful to summarizing the data to support answering this
study’s aim and objectives.

Themes.
Interpretive concepts that describe or explain aspects of the data emerging from analysis
of the whole dataset. A number of categories fall under each theme.

Transcript.
A written verbatim account of interviews.

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1.0 Introduction.

1.1 The adult patient with Guillain-Barré syndrome.

Guillain-Barré syndrome (GBS) is the most common cause of non-traumatic paralysis in
the United Kingdom (UK); affecting over 1,500 adults per year (Kalman and Brannagan,
2008). It impacts men and women equally, with mortality rates reported between three
and 10 percent (van Doorn et al., 2008). GBS is a polyradiculoneuropathy; a collection
of symptoms, rather than an explicit disease process, affecting the peripheral nervous
system and, less frequently, the central nervous system (Richman, 2008; Gregory et al.,
2005). GBS is thought to be caused by a person’s own immune system mistakenly
mediating the lymphatic system to attack the myelin sheaths and/or axons contained in
the peripheral nervous system in response to a triggering event such as infection, surgery,
or vaccination (Hou et al., 2014). The damage caused is known as demyelination and
axonal degeneration. Normally, the myelin sheath and axon function to transmit nerve
signals between the peripheral nervous system and the central nervous system. Damage
leads to signal ‘short-circuiting’ which engenders disruption or complete blockage;
resulting in the neurological dysfunction evident in progressive peripheral neuropathy
(Lugg, 2010). GBS presents as a rapid, symmetrical, ascending muscle weakness
originating in the arms and legs, with or without pain, resulting in reduced function,
sensation, weakness and limb paralysis in the patient; beginning between five days to
twenty-one days following the initial triggering event (Hughes and Cornblath, 2005).

1.2 GBS on an Adult Critical Care Unit.

Approximately 40 percent of adults with GBS develop respiratory compromise, with 25
percent requiring mechanical ventilation (MV) (Parry and Steinberg, 2007).The aetiology
of this is multifactorial; but is primarily due to ascending weakness causing the
diaphragmatic muscles involved in breathing to fail (Dugernier et al., 2014). Decline in
respiratory function, and disturbances in the autonomic nervous system following
progressive demyelination and axonal degeneration, can cause the person to become
critically unwell; resulting in up to 40 percent of affected adults requiring in-patient
treatment on an Adult Critical Care Unit (ACCU) (Parry and Steinberg, 2007). An ACCU

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is a specialist unit within a hospital, staffed by medical support personnel specifically
trained to care for critically unwell patients who require life-saving treatments (Gain
Charity, no date). GBS represents a small but increasing proportion of ACCU admissions
per year; with a median stay of 30 days (Ancona et al., 2018).

GBS has no cure, with management of this patient group on an ACCU centred upon
delivering specific treatment options and supportive cares (Simmons, 2010). The critical
care nurse (CCN) working on an ACCU is an essential member of the multidisciplinary
team (MDT) delivering these interventions to the adult patient with GBS (Atkinson et al.,
2006). These interventions aim to accelerate recovery, decrease long-term residual
neurological deficits of the patient, and reduce potential complications such as
cardiovascular instability, optic neuritis and papilledema, nutritional deficiencies, bodily
fluid excretion difficulties, pressure sore development, and self-care deficit (Atkinson et
al., 2006).

1.3 Rationale for this study.

Brilli et al. (2001) described CCNs as delivering the majority of patient assessment,
treatment, and care for this patient group on an ACCU, resulting in a heavy workload.
Walsh (2008) suggested that caring for this patient group presents a challenge for the
CCN due to the complexity of their care needs being beyond those of a ‘normal’ ACCU
patient. A recent MDT meeting on an ACCU in a central London National Health Service
(NHS) Trust reflected these sentiments. During a discussion regarding the nursing care
of an adult patient with GBS who had been on this ACCU for over 100 days, it was noted
that there were many comments in the nursing documentation regarding the challenges
that CCNs were experiencing delivering care to this patient. The MDT observed that
these comments were similar to previously documented experiences of CCNs working
on the ACCU when caring for this patient group; yet not follow-up was initiated to
investigate these experiences.

Haldeman (2005) states that it is the responsibility of the CCN to ensure that nursing care
being delivered meets the specific needs of the patient. However, the CCNs on the ACCU
found it challenging to meet this patient groups’ care needs. As nursing is a multifactorial

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occupation, it is imperative to take into consideration the individual CCN’s experiences
when attempting to understand why CCNs on this ACCU found delivering care to this
patient group challenging (Spence Laschinger and Leiter, 2006). It is through exploring
these experiences of caring for this patient group that a deeper understanding and more
accurate interpretation is able to develop; uncovering what challenges and factors may
exist that impact upon the ability to meet these care needs (Kvale and Brinkmann, 2014).
As such, this study was undertaken to gain a better understanding from CCNs of the
challenges and factors that impacted upon care delivery to this patient group, as it may
help in determining if there is an opportunity to design more sensitive support in the
future for the CCN to meet the care needs of adult patients with GBS on an ACCU (Price,
2003).

1.4 Aim and objectives of this study.

The aim of this study was to explore the experiences of critical care nurses caring for
adult patients with Guillain-Barré syndrome on an Adult Critical Care Unit in a central
London NHS Trust.

The specific objectives of this study were:

 To explore the challenges that are perceived to exist when delivering care to this
patient group.
 To explore factors that may impact upon the delivery of nursing care to this patient
group.

2.0 Literature review.

2.1 Introduction.

This chapter will present the literature review undertaken as part of this study. It will
describe how the literature was located, selected and excluded, as well as critically
analysing literature relevant to the aim and objectives of this study.

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2.2 Literature search.

A review of the literature was undertaken to reaffirm the aim of this study and identify
the current strengths and gaps in knowledge around the experiences of CCNs caring for
this patient group (Holloway and Galvin, 2017). An initial literature review was
undertaken prior to commencing this study, accessing data from September 2017 until
December 2017. Review of the literature continued through May 2018.

2.3 Inclusion/exclusion criteria.

The literature review accessed data utilising electronic databases including: BioMed
Central; British Nursing Index (BNI); Cochrane; Cumulative Index of Nursing and Allied
Health Literature (CINAHL); NHS Evidence; and MEDLINE. Google Scholar was then
included. Bibliographies of retrieved resources also led to additional resources. Only
peer-reviewed resources published in the English language were considered. Resources
published in non-English languages, abstract-only form, and concerning paediatric
populations were excluded.

Search keywords were developed from a PEO framework (Appendix 1). Use of
alternative words, exact phrase, stop words, abbreviations, synonyms, wild-card symbols,
Boolean phrases, and truncation were incorporated. A proximity operator of n3 was
utilised. Extended search parameters were implemented incrementally up until 40 years
due to insufficiency of literature published in previous five years.

9,803 citations were located. 9,665 abstracts were excluded due to unsuitability in
addressing the research topic; with 138 abstracts of both qualitative and quantitative
methodology retrieved for full-text screening for relevance to this study’s aim and
objectives. Articles with qualitative techniques were preferred for being essential to
exploring experiences and obtaining insightful data on complex issues such as nursing
practice (Creswell, 2009). 16 articles were then reassessed for data extraction as most
closely addressing the study’s aim and objectives. A final seven articles were selected as
representative of nurses’ experiences in health systems with similarities in conditions,
values, and structure to those on the ACCU setting of this study (UK, United States of

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America (USA), Denmark and Canada.) (Berry, 2017). This was deemed necessary due
to insufficiency of literature set in the UK (Polit and Beck, 2008).

2.4 Articles chosen for review.

The six articles chosen for review were: five case studies exploring nurses’ experiences
caring for a specific patient with GBS (Anderson et al., 1985; Grove et al., 1987;
Hamblin, 2010; Hatfield, 2012; Samonds, 1980); one editorial on the role of the nurse
caring for the patient with GBS from the perspective of the CCN (Sulton, 2001) and one
fieldwork study on caring for aware patients receiving MV on an ACCU (Laerkner et al.,
2015).

2.5 Discussion of the literature.

Two themes emerged from the reviewed literature relative to the experiences of CCNs’
caring for adult patients with GBS on an ACCU.

2.5.1 Adult patients with GBS on an ACCU have complex nursing
care needs.

The first theme that emerged from the reviewed literature was that CCNs felt adult
patients with GBS on an ACCU have complex nursing care needs that can be challenging
to meet. In a reviewed case study from the USA by Samonds (1980) it described that even
when simplified to treating the symptoms of GBS and preventing complications, the
delivery of care is greatly important. However, the setting of this case study appears to
oscillate between an acute neurology ward and an ACCU, leaving it difficult to tell which
aspects of the nursing care discussed in this study applied to each of these two
environments. However, in a case study by Hamblin (2010) set on an 18-bed ACCU in
Canada, even managing symptoms and preventing complications became complex when
accounting for expert nursing assessment, intervention, advocacy, and care evaluation, as
well as applying pain management strategies, meticulous oral hygiene, exceptional skin
care, frequent position changes and regulation of the patient’s nutritional status.
According to Grove et al. (1987) in another case study from Canada, even patient rest is

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a responsibility of the CCN to account for what. Anderson et al. (1985) countered this,
arguing that what actually creates this complexity above all else is that this patient group
are invariably awake and aware on an ACCU.

Grove et al. (1987) recalled an aware patient, Kit, who grimaced whenever the nurse
approached to deliver care; noting that layer-upon-layer of complexity in delivering care
arose when the patient was unable to speak due to requiring MV as this patient group
often are. In a fieldwork study from Denmark involving observation and interviews of
CCNs, Laerkner et al. (2015) described changes in the management of patients requiring
MV necessitating less or no sedation on an ACCU; leaving them aware, able to interact,
and express personal needs whilst being critically ill. It went further, finding that CCNs
had difficulty understanding a patient who is trying to express their wishes non-verbally.
Laerkner et al. (2015) then qualified this by stating that whilst communicating with an
aware patient is not necessarily unique within an ACCU environment, the prolonged MV
often required for adult patients with GBS makes communication an ongoing challenge
for the CCN when balancing other cares.

In fact, Anderson et al. (1985) reported in a case study from the USA that for most CCNs
it is rare to care for a patient for longer than two weeks on an ACCU, let alone those
aware and unable to speak due to being attached to MV. Yet, in case studies by Anderson
et al. (1985) and Hamlin (2010), adult patients with GBS had stays on an ACCU of over
three months. These findings are in keeping with current data around the prolonged stays
this patient group has on an ACCU, making them part of the long-term aware patient
groups present on an ACCU (Hamblin, 2010). Laerkner et al. (2015) described that CCNs
adapt care delivery to the preferences of the aware patient; stressing that caring for this
type of patient requires a patience, awareness and situational grasp that differs from the
sedated patient. Indeed, Anderson et al. (1985) reported that this type of patient is seen
as being very demanding of their care, with CCNs reporting to being exasperated at the
persistent needs of this patient group, wearing the nurse down to the point of exhaustion
and requesting not to return to the patient the next shift. It became an ongoing battle for
the CCN to meet all the needs of the aware patient who are able to dictate care needs that
are often exacting and time-consuming, even without barriers to communication (Grove
et al., 1987). However, while these case studies provide a useful insight into the
experiences of caring for this patient group, it is not clear how the authors investigated
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these experiences. It is also not clear which form of data collection was undertaken,
causing difficulty in judging the validity of the literature by being unable to verify the
scientific method utilised when collecting the stated opinions of CCNs. This leads to
difficulty in drawing a definite cause and effect from the data.

The research of Hatfield (2012) was the only reviewed case study set in the UK. However,
the setting was a neurological rehabilitation environment rather than an ACCU. This
highlights a deficiency in the available data investigating what knowledge and experience
CCNs have around caring for this patient group in the UK, and how they meet their
complex care needs. To this point, the two case studies that most incisively explored the
experiences of CCNs caring for this patient group, Anderson et al. (1985) and Hamblin
(2010), were both set in North America-with Anderson et al. (1985) being over thirty
years old. To address this deficiency, it was necessary to explore, with clear research
methodology, the current experiences of CCNs caring for this patient group on an ACCU
in the UK to gain a better understanding of what challenges and factors were perceived
to exist that impacted upon delivering care to this patient group.

2.5.2 Caring for this patient group is emotionally intricate.

The second theme emerging from the reviewed literature how caring for this patient group
on an ACCU is an emotionally intricate experience for the CCN. Hamblin (2010)
explained that GBS is an emotionally challenging condition for both the patient and
CCNs delivering their care. This perception arose when caring for an adult patient with
GBS on a mixed general and cardiac ACCU and detailed the level of commitment,
cooperation and creativity required by CCNs to overcome these challenges. An editorial
from the USA by Sulton (2001) focused primarily on the pathophysiology of GBS and
the clinical management of this patient group, whilst touching very lightly on dealing
with the emotions of this patient group, with no mention made of CCNs experiences
delivering this care. However, this editorial did note that this patient group experiences
fear from multiple sources during their illness such as a lack of knowledge around the
disease, inability to communicate, loss of control, or pain. However, Sulton (2001) did
not stipulate if this is solely on an ACCU or continues throughout a patient’s recovery.
To counter this fear, Laerkner et al. (2015) determined that the interactions required with

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the aware patient on an ACCU required considerable emotional involvement by the CCN
to foster emotional closeness.

It is the CCN being aware of the patients’ needs, emotional states and trying to comfort
them whilst managing their other complex care needs that creates this emotional
closeness (Laerkner et al., 2015). Samonds (1980) reflected this, finding CNNs feel that
it’s within their role to attempt to ‘drain off’ the fears and frustrations of this patient
group. Hatfield (2012) postulated that CCNs shoulder an empathetic burden by putting
themselves in the ‘patient’s shoes’. Anderson et al. (1985) labelled this as ‘positive
transference’. It enables the CCN to develop a deeper understanding of how the patient
is feeling and what they are experiencing in order to anticipate their care needs. Hamblin
(2010) condensed this, theorising that by incorporating empathy into nursing practice, the
CCN strengthens the therapeutic relationship to enable care delivery.

Yet, incorporating empathy into care delivery through emotional closeness may also
create further emotionally intricate challenges for the CCN. Laerkner et al. (2015) found
it can lead to over-involvement, emotional exhaustion, and eventual psychological
burnout for the CCN. Grove et al. (1987) discussed that being cognisant of the emotions
experienced by this patient group on an ACCU may leave the CCN uneasy when
reassuring the aware adult patient with GBS if their health deteriorates. Hatfield (2012)
did not address this pitfall. This may be because she was a student nurse working without
a full nursing caseload; able to take the time to sit down, read the patients’ notes, discuss
her concerns with senior colleagues and then postulate upon the right response to the
situation. This is not always possible for the CCN as Grove et al. (1987) recounted
spending twenty minutes trying to understand a patient’s non-verbal communication,
eventually determining it was to move his legs one-half inch farther apart. In the eyes of
this CCN, it was worth the time spent to be able to deliver this care. Still, it is difficult to
reconcile this instance of spending such time developing emotional closeness with the
patient, with the time pressures on an ACCU of meeting the other care needs of this
patient group (Sulton, 2001). Grove et al. (1987) did not discuss how this kind of time-
consuming situation impacted upon future care delivery by the CCN. More breadth was
given within this case study to the cares required by this patient group than to the
experiences of the CCNs attempting to meet these care needs. It left the researcher

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wondering how such challenges and factors impacted upon care delivery to this patient
group from the perspective of the CCN.

Other reviewed articles attempted to explore these perspectives. Laerkner et al. (2015)
detailed the demanding but rewarding task of caring for the aware patient, riding high on
progress being made due to the emotional closeness felt between the CCN and patient.
Conversely, Anderson et al. (1985) described CCNs’ feelings of depression, helplessness,
and professional inadequacy in their care delivery when downturns in recovery were
encountered. However, these interpretations are from 1985, thirty-plus years before the
current demands of an ACCU in the UK. Already then, nurses were feeling the strain of
trying to deliver care in an empathetic manner: stating ‘I can’t go in there another time’
(Anderson et al., 1985, pp. 33); asking to be reallocated to another patient; losing their
temper with the patient or venting their frustrations to their colleagues. CCNs felt guilty
for not answering requests or understanding communication quickly enough; balancing
spending time providing emotional support with meeting the patient’s other care needs.
These were common concerns across all the reviewed articles. However, four of these
articles are over fifteen years old; a life-time in terms of the seismic changes that have
occurred in healthcare since then. Even the most recently published of the reviewed
literature, Laerkner et al. (2015), consisted of interviewing CCNs regarding aware
patients, rather than adult patients with GBS specifically, while the increasingly
ambiguous role of the CCN in the changing and evermore complex environment of an
ACCU.

In fact, there is limited current research available, both internationally and in the UK,
exploring the experiences of CCNs caring for the adult patient with GBS. There was a
preference for presenting experiences as part of a case study, despite this methodology
having a poorly regarded level of evidence. Following this, the researcher argued that it
was necessary to explore CCNs experiences to gain a deeper understanding of how they
found caring for a patient group that is emotionally intricate, particularly in regards to
exploring what challenges and factors impacted upon doing this on an ACCU currently
in the UK.

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2.6 Conclusion.

This initial literature review was undertaken to gain an understanding of the available
literature surrounding the experiences of CCNs caring for this patient group on an ACCU.
Despite an extensive literature search, there was limited current research available, which
meant data stretching back almost forty years was critically analysed. This data was
retrieved from varying ACCU settings in health systems similar to the UK, with only one
article from the UK itself. This affected its potential applicability, despite these
similarities, to the current experience of delivering care seen as emotionally intricate and
of a complex nature. Further exploration was required to understand what other
challenges and factors impacted upon delivering care to this patient group from the
experiences of CCNs on an ACCU.

3.0 Methodology.

3.1 Introduction.

The previous chapter highlighted that CCNs found caring for adult patients with GBS on
an ACCU to be emotionally intricate and of a complex nature in the review literature. It
was argued that further investigation was required into the experiences of CCNs caring
for this patient group to understand what other challenges and factors impacted upon
delivering care from the perspective of CCNs. Encapsulating this, the aim and objectives
of this study informed its methodological design. This methodological design will be
discussed including the research theory; study design; research setting; ethical
considerations; and sample utilised. The data collection and analysis methods employed
will also be explained.

3.2 Research theory.

Outlining the research theory utilised in this study clarifies what was considered a valid,
legitimate contribution to knowledge during all stages of the methodology approach
(Coghlan and Brannick, 2010). This study was qualitative, with an interpretivist
perspective taken to explore the experiences of CCNs caring for this patient group on an

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ACCU. This perspective was based upon this study’s ontological position that there is no
single reality or truth; rather each participant in this study experienced their own reality
or truth (Smith and Osborn, 2003). An understanding of the complexities and contextual
factors involved in these experiences could then only be gained from asking those who
experienced it (Crotty 2015). As such, the epistemological position of this study did not
seek a single reality or truth, instead, it sought to explore each participant’s subjective
understanding of their experiences caring for this patient group. It was then that the
researcher was able to interpret each participant’s reality or truth to elucidate the meaning
from their experiences (Biggam, 2015). Consequently, an Interpretive Phenomenological
Analysis (IPA) methodology described by Benner (1994) was utilised in this study
whereby the researcher aimed to ‘give voice’ and ‘make sense’ of each participant’s
experiences. This permitted an exploration where greater understanding was gained by
facilitating an intersection of the researcher’s and the participant’s interpretations as they
collaboratively unearthed meaning from their experiences (Smith et al., 2009; Hawamdeh
and Fakhry, 2013).

There were restrictions however in the strict application of IPA as a method for analysing
data collected from participants in this study. IPA methodology promotes a plausible,
transparent and detailed explanation of the meaning of data but requires an experienced
researcher to utilise it as a method for data analysis (Larkin and Thompson, 2011). As the
researcher of this study was new to qualitative research, a rigid methods process was
required (Brocki and Wearden, 2006). Smith and Firth (2011) state that IPA guidelines
are intended for adaption, borrowing techniques from another qualitative research
framework to familiarise and interpret the data. The framework method described by
Pope et al. (2000) was utilised as a guided step-by-step process exploring the connections
within and between the conceptual groups arising from the data to generate an
interpretation of the experiences of the CCNs caring for this patient group on the ACCU.
Utilising the framework method also allowed the researcher to counterbalance the natural
leanings of IPA towards inductive reasoning as it also encouraged deductive explorations
of the data to allow for all interpretations to emerge (Smith et al., 2009).

3.3 Study design.

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The aim of this study was to explore the experiences of CCNs caring for this patient group
on an ACCU in a central London NHS Trust. Following consultation with the ACCU’s
Research and Development (R&D) Department it was agreed that the aim and objectives
of this study would be part of a service evaluation. A timetable was constructed for this
study (Appendix 2). Semi-structured interviews were chosen as an appropriate research
method for data collection to achieve this study’s aim and objectives (Bowling, 2014).
No previous studies located during the literature search described utilising semi-
structured interviews of CCNs to explore their experiences caring for this patient group.
Elam and Fenton (2003) described semi-structured interviews as being best suited for
investigating sensitive topics. This was particularly precedent in this study as it was
asking participants to critically analyse their own nursing practice (Cai, 2016). Silverman
(2015) considered that interviews promote exploring participant experiences to discover
feelings, perceptions and thoughts around an activity. This approach allowed the
researcher to collect detailed, extensive data which could then be systematically searched
for patterns to provide an illuminating description of participants’ experiences (Kvale and
Brinkmann, 2014). An interview guide was developed following discussions with senior
CCNs with experience working on an ACCU and the dissertation supervisor (Appendix
3), as well as incorporating themes from the reviewed literature (Holloway and Galvin,
2017). This interview guide allowed the researcher to facilitate and steer, rather than
dictate, the interviews with participants (Smith and Osborn, 2007).

3.4 Research setting.

The research setting was a large ACCU in a central London NHS Trust which employs
approximately 220 CCNs from bands five-eight. This NHS Trust serves 2.5 million
people across the surrounding area, with the ACCU admitting approximately 3,000
patients per year. The ACCU has forty-four beds with a combination of critical care level
(Level Three) and high-dependency level (Level Two) patients and admits up to twenty
adult patients with GBS per year.

3.5 Ethical Considerations.

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Ethical permission for this study was sought through three separate routes: from the
London South Bank University’s (LSBU) Research Ethics Committee; the Health
Research Authority (HRA); and the ACCU’s NHS Trust R&D Department. The process
for obtaining this permission varied slightly. The HRA required no further registration as
this study was not considered research and could proceed (Appendix 4). This study was
then successfully registered with both the ACCU’s NHS Trust R&D department
(Appendix 5) and LSBU’s Research Ethics Committee (Appendix 6) following
completion of their respective requirements. Prior to beginning this study, discussions
were also held with the ACCU matrons and two emails were sent asking for written
permission to undertake this study, with approval being granted (Appendix 7).

This study addressed certain ethical issues. When conducting interviews it was essential
to ensure rigour to safeguard the reliability and validity of this study as well as reduce
potential bias (Bowling, 2014). To ensuring rigour, this study incorporated several
essential features in the research process that promoted systematic collection, analysis,
and interpretation of data that safeguarded trustworthiness, authenticity, and competence
in the findings (Holloway and Galvin, 2017). It did this by maintaining a systematic
approach to the research design; the methodical collection, analysis and interpretation of
the interview data; awareness of the importance of interpretation over perception or
assumption; and the preservation of detailed records of the semi-structured interviews
(Bowling, 2014). This reduced the potential biases which could have led to systematic
deviations from the true value of the data (Last, 1988).

Prior to beginning the interviews, each participant was given a Participant Information
Sheet (Appendix 8). It was also made clear verbally by the researcher that participation
or non-participation would not affect the on-going professional relationship between the
researcher and the potential participant. However, if the interview was completed and the
participant wished to withdraw from this study, then all data collected would still have
been analysed. It was then reiterated that each participant was anonymised immediately
upon entry into this study with a unique identifier which was a coded number. Only the
researcher knew this identifier. However, no participant withdrew from this study.

As words and ideas from participants were used, full confidentiality was not promised;
however identifiable information was carefully screened and when quotes were used they
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were only disclosed under the unique identifier (Holloway and Galvin, 2017).
Participants were also alerted that accounts of a breach in patient safety would be referred
to the adult safeguarding team of the ACCU’s NHS Trust. All field notes and consent
forms were scanned electronically and kept in a specific file on a password protected
computer. Paper copies were then disposed of in a confidential papers waste disposal bin.
All audio recordings, field notes, transcripts and other electronic material related to this
study will be kept securely for two years following submission of this dissertation. Upon
which time they will be destroyed securely as per LSBU data protection policy.

There was no direct benefit to participants for participating in this study. However, it was
made clear that findings could be beneficial to CCNs on the ACCU through future
improvements in practice. There was also a minimal chance of participation in this study
causing distress with interviews potentially touching upon sensitive or distressing topics.
If this were to occur then the interview was to stop and, if appropriate, the participant was
to be referred to the ACCU clinical psychologist. However, no participant became
distressed or requested referral. These steps were undertaken to ensure that the participant
was duly informed when they gave written consent to participate in this study (Appendix
9).

Lastly, awareness of the power relationship between the researcher and the participant
was also required (Biggerstaff and Thompson, 2008). The researcher utilised continuous
reflexivity within the IPA methodological approach through examining their own actions
with awareness of their dual role as researcher and charge nurse working on the same
ACCU as the participants. This was undertaken as conducting research in one’s own work
setting can be complex and difficult (Coghlan and Brannick, 2010). The researcher was
in a position of power and was clear in minimizing this inequality to the participant as
much as possible (Holloway and Galvin, 2017). In accordance with this, reflective field
notes were kept to document thoughts and feelings of the researcher to prevent role
conflict or confusion that could have prevented the researcher from performing either
role well (Appendix 10) (Brannick and Coghlan, 2007).

3.6 Sample.

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This study recruited participants using a purposeful, convenience sampling technique
(Patton, 2002). This approach was intentionally non-random as this study sought
participants sharing a common experience to explore a complex issue (Nicholls, 2009).
A small sample size of five CCNs was chosen as it allowed for a deeper exploration of
the research question to gain a greater understanding of the data to achieve this study’s
aim and objectives (Bowling, 2014).

The following criteria were implemented:

Inclusion Criteria:
 No restrictions on age, gender, or ethnicity.
 All CCNs currently working, full or part time, on the ACCU who had delivered
nursing care to at least one adult patient with GBS for at least one 11.5 hour shift
within the last year.

Exclusion criteria:
 All CCNs currently working, full or part time, on the ACCU who had
not delivered nursing care to at least one adult patient with GBS for at least one
11.5 hour shift within the last year.
 Self-exclusion.

Approximately 220 CCNs on the ACCU were invited to participate. Once 20 positive
respondents were identified, a maximum variation sampling technique was utilised to
select five participants for interview. The participants were purposely selected as being
representative of the diverse range of attributes, experience, and bandings present in the
CCN population on the ACCU (Palinkas et al., 2013). A further five nurses were asked
to remain on standby in the case of a participant excluding themselves from the study at
a later date. They were not required. One band seven, three band six, and one band five
CCNs were interviewed. One of the band six nurses was recently promoted into the role
(P5). The band seven also led the long-term patient teams on the ACCU (P1); whilst
another band six CCN also worked with the ACCU follow-up team (P2). There was a
noted lack of band five CCNs indicating interest in participating in this study.

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3.7 Data collection.

Upon permission being given, a notice was included in the weekly ACCU staff briefing
(Appendix 11), and an email with an invitation letter was sent to all the CCNs working
on the ACCU (Appendix 12; 13). This email was re-sent due to IT complications as not
all CCNs received the first email. CCNs who indicated interest in participating received
a Participant Information Sheet with further details of this study. Once sample criteria
was met and participants selected; interviews were conducted at a time convenient to the
participant in an interview room away from the ACCU where a ‘do not disturb’ sign was
placed on the door. However, one interview was still interrupted by staff entering the
room. These steps aimed to ensure that participants were more likely to reveal their
experiences (Elmir et al., 2011). Prior to commencing interviews, written consent was
obtained.

Each interview lasted between 30 to 40 minutes as pre-planned. A non-directive, open
approach advised by Van Manen (1990) was undertaken by the researcher, with each
interview building upon participants’ responses (Roche-Fahy and Dowling, 2009). This
reflected the concept that the interview is a journey of discovery between the researcher
and participant (Brinkman and Kvale, 2015). Each interview was tape-recorded and
transcribed verbatim by the researcher (Appendix 14; 15; 16; 17; 18) (Daggenvoorde et
al., 2016).

3.8 Data analysis.

The data was analysed utilising the framework method described by Pope et al. (2000).
This involved a five-step procedure that worked within the IPA methodology of sorting,
categorizing and interpreting qualitative data.

Step One:
 The researcher became immersed in the data (Appendix 19), repeatedly listening
to the tape-recorded interviews and reading the associated interview transcripts
until 21 key ideas, drawing upon deductive and inductive sources, were listed
(Appendix 20).

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Step Two:
 A thematic framework was identified encapsulating all issues by which the data
could be examined and referenced.
 A detailed index of the data was created with 50 in-vivo codes (Appendix 21).

Step Three:
 In-vivo codes rearranged and synthesized down to 16 key categories that were
given numerical codes (Appendix 22).
 Numerical codes systematically applied to the data; creating an index of 504
references across five interviews (Appendix 23).

Step Four:
 Data rearranged multiple times according to the appropriate section of the
thematic framework to which they related (Appendix 24); with six themes and 16
categories created (Appendix 25).
 Considerable abstraction and synthesis created charts containing distilled
summaries of experiences (Appendix 26).

Step Five:
 Charts utilised to create three core concepts that mapped the range and nature of
CCNs experiences as typologies, finding association between themes to interpret
the findings (Appendix 27; 28).

3.9 Conclusion.

This chapter described the methodological approach of this study. To explore the
experiences of CCNs caring for adult patients with GBS on the ACCU, an interpretive
approach was utilised. This emerged from the ontological and epistemological
perspectives of this study that each experience is unique to the individual, and it is through
interpreting individuals’ thoughts on their experiences that greater understanding can be
gained. To explore these experiences, this study conducted semi-structured interviews
with five CCNs working on an ACCU in a central London NHS Trust; selected utilising
a purposeful, convenience sampling technique. This study had the approval of the LSBU

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Research Ethics Committee, HRA, and the ACCU’s NHS Trust R&D Department. Data
was collected and analysed implementing an IPA methodology described by Benner
(1994); utilising the framework method described by Pope et al. (2000).

4.0 Findings.

4.1 Introduction.

This chapter will present the findings of interviews conducted with five CCNs between
February and March 2018; utilising illustrative participant quotes. Participants varied in
experience and seniority according to collected demographics (Appendix 29).

4.2 Themes.

Six themes emerged as central to CCNs’ experiences of caring for adult patients with
GBS on an ACCU in a central London NHS Trust:
 The aware patient.
 The psychological aspects of recovery.
 The long-term aware patient.
 The role of experienced CCNs.
 The ACCU setting.
 Collaborative care.

4.2.1 The aware patient.

All participants (P1-P5) perceived that the adult patient with GBS on the ACCU was
usually aware of the care that they were receiving from the CCN. Participants noted that
this patient group might initially be sedated on the ACCU to receive MV. However,
whilst this period of sedation was limited, the appearance of the patient remaining
unconscious persisted at times. P2 noted that it was important to be:

‘Mindful that these patients are awake and aware, but they don't look awake and
aware’. (P2)

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When caring for a patient that appeared unconscious, P5 stated:

‘We are doing general cares. We don't focus much on the person, we focus on the
body… we don't interact much with the person’. (P5)

However, participants noted that if the patient was aware; care was different. Participants
found it challenging as aware patients became more demanding of the care being
delivered to them. Participants stated they were constantly aware of the patient’s
condition, needs, and expressions; finding it difficult to balance this with trying to deliver
care in relation to the symptoms of GBS. Participants noted a factor in finding this balance
was communication between CCN and the patient, as P1 highlighted it was the:

‘Backbone of keeping your patients' sane’. (P1)

However, participants noted that there were barriers to communication as whilst the
patient was aware, they couldn’t always formulate a verbal response. Particularly if the
patient required MV. P3 noted that a patient’s communication could be as subtle as the
raising of an eyebrow or the clicking sound made by their mouth. P4 noted that the
communication tools, such as alphabet boards and motion sensor devices, implemented
to help the CCN overcome these barriers, often failed, delaying care delivery. Instead, it
required constant time-consuming attention, effort and ability by the CCN to facilitate
communication, as ineffective communication was as frustrating for the CCN as for the
patient. Ineffective communication also made giving autonomy in directing care delivery
to the aware patient another challenge for CCNs, often leading to wrong decisions around
care delivery being made, despite P3 noting:

‘Empowering the patient is what your role would be’. (P3)

P1 noted that empowering the patient meant speaking with them, making them central to
discussions around the choices in their care. This arose from participants’ beliefs that
encouraging the patient to engage in their recovery was integral to care delivery. P5
agreed, noting that by doing this, the patient:

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‘Understood that the care he was receiving could be even a better level of care
because if you are interacting, if you are not challenging people, these people are
going to look after you better’. (P5)

Figure 1: Word cloud for P3’s experiences of the aware patient.

4.2.2 The psychological aspects of recovery.

Participants identified the psychological aspects of recovery as being challenging when
caring for this patient group. Participants felt great empathy for this patient group and
imagined themselves or their loved ones in the patient’s situation. Participants were aware
of the patient being mindful of their current situation; with P2 describing this as a
necessary influence on the care they delivered as:

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‘You need to put a bit of a personal spin on it, or else you become really
disconnected’. (P2)

Participants found themselves becoming disconnected as patients’ became depressed and
frustrated at not having control over their recovery. P1 found it difficult to reassure the
patient as even the visiting neurology medical team were uncertain about their recovery
prospects. Participants found it particularly challenging when the patient became
withdrawn from their nursing cares due to their slow recovery. P5 thought that this was
a self-defence mechanism by the patient due to not accepting their current situation, rather
than a comment on the care they were receiving. P4 witnessed other CCNs venting their
frustration at this challenge in the staff break room, noting their feelings of failing in their
duty of care at times. P2 described the effects of these challenges on the CCN as:

‘Sometimes you do everything for this patient and they're still in pain, or they're
still uncomfortable. And you feel like you, could you have done more’. (P2)

‘You feel a bit disheartened that they've not had a good day’. (P2)

P5 postulated that these feeling arose from the underlying motivation of the CCN:

‘We like every single patient to be happy, to be calm, to be pleased, and not
complaining, but it's impossible’. (P5)

However, participants also felt rewarded by seeing the patient’s mood improve and
engaging in rehabilitation. P5 found that delivering care to the patient that was able to
meet their psychological needs resulted in:

‘He was happier, and he was friendly. He was as he is. So, he was acting as the
person he probably is, or he was’. (P5)

When this occurred, participants noted that this fed into professional satisfaction in seeing
the effectiveness of their care for the patient as:

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‘You're on a journey with this patient, and seeing them improve to the point where
they are making discernible advances in their recovery is rewarding for the nurse
and for the patient… being part of that journey with them is a special thing. It's
one of the great things about being a nurse’. (P3)

4.2.3 The long-term aware patient.

Participants not only viewed this patient group as the ‘aware patient’, but also as the
‘long-term patient’. They found similarities in care delivery with other long-term patient
groups. P1 described that a negative persona existed on the ACCU amongst CCNs around
caring for the long-term aware patient. P3 found caring for this patient group could be
very challenging. P2 felt that they could be demanding, difficult and time-consuming.
Participants also reported feeling they often had an envisioned one-shift limit for being
allocated to this patient group before they needed a break, reporting collective feelings
about anticipating a challenging shift after being allocated to this patient group.

“When I saw my name on the board and I was like 'oh my goodness. It's going to
be a long day. It's going to be really frustrating’. (P4)

This was noted for a number of reasons, from the emotionally intricate nature of care
delivery, to a general view amongst CCNs on the ACCU that allocation to care for this
patient group was not conducive to their professional development. Participants noted
CCNs feeling there was little to be learnt from caring for the adult patient with GBS.

‘This is a trauma intensive care, so a lot of the nurses want to be looking after the
sick trauma patients, and not look after the long-term patients’. (P1)

Another factor that may have resulted in CCNs having a negative perception of caring
for this patient group was the challenges in managing the complex care needs of this
patient group. Participants found that while managing most aspects of nursing care such
as blood pressure control, enacting MV care bundles, and MV weaning seen with the
‘normal’ ACCU patient to be within their skill-set and knowledge; meeting the other
nursing care needs of this patient group could be very time-consuming and exhausting.

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These other care needs consisted of being constantly asked for by any type of nursing
care by the aware adult patient with GBS; even when these were simple requests such as
mouth cares as described by P4.

‘You roll them and then they're not comfortable and you have to get people
together to roll them again… and they kind of wear you down a little bit
sometimes’. (P2)

Patient positioning was a particular challenge noted by participants as they regularly
found difficulties in managing this patient group’s pain concerns; as failure to do so could
result in the patient refusing to have their position in bed changed. P2 felt conflicted when
delivering such care when participants refused care the CNN knew was necessary for
recovery:

‘You almost feel like you're doing it against their will because where do you
stand? … If they don't want to roll, do you roll them?’ (P2)

This was compounded by the aware patient being able to communicate when their care
needs were sufficiently being met. Despite these challenges and perceptions, P1 admired
some CCNs going above and beyond expectations to deliver extra-ordinary cares that
were aimed at meeting the complex care needs of this patient group. These cares included
teaching patients Spanish, bringing them Coca-Cola from the supermarket, and ensuring
that patients could watch videos of interest. Participants also recognised particular benefit
to recovery in taking the long-term aware patient for trips outside the ACCU:

‘It's a massive thing for people to see that there's life outside of that hospital
room… I've never taken someone outside and they've hated it… They've never
turned around and said 'I don't want to do that again. I hated it'… They can see
that life goes on’. (P2)

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Nurses views
of the long-
term
patient.

Delivering
extra-
ordinary
cares.

Complex nursing
care needs of the
patient.

Figure 2: Intertwining categories within the long-term aware patient.

4.2.4 The role of experienced CCNs.

All participants had previous experience caring for this patient group except P4. They
used either their previous experiences of caring for this patient group or caring for what
they considered similar patient groups, such as patients with high-spinal injuries or
requiring slow-respiratory weans, when delivering care. They anticipated a slow
recovery. Participants described the influence of CCNs with previous experience and
knowledge of caring for this patient type. Participants described this as necessary as there
was a noted lack of formal training and guidelines around caring for this patient group.
In fact, participants felt it was vital to share knowledge with colleagues such as
identifying this patient group as the long-term aware patient to less-experienced CCNs as
they:

‘Might not know much about the condition. They'll just see someone that looks
unconscious. So it's definitely about educating staff’. (P2)

This was particularly evident when participants discussed role modelling care to less-
experienced CCNs who could see experienced CCNs being enthusiastic and engaged in

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caring for this patient group. P1 noted that this was important to help reverse the negative
perception held by others; showing the benefits of CCNs’ care felt by the patient, and
leading to more engagement with the long-term care teams. P2 also emphasised bedside
education by experienced CCNs for less-experienced CCNs to overcome the limited
availability of formal education opportunities to encourage enthusiastic care of this
patient group. However, participants noted formal education opportunities were not
limited to the care of this patient group; with P5 encouraging personal responsibility for
professional development to overcome this:

‘When you want to… develop your career, when you want to learn a little bit
more, you need to do on your own’. (P5)

Participants also used their previous experience as a factor to overcome challenges
around CCNs perceptions of this patient group to take the patient for trips outside the
ACCU. It enabled them to be proactive in care delivery:

‘Sometimes we make patients' too 'ITU-y' and that stops you getting them outside,
or taking them up to the top floor… there's lots of barriers in the way sometimes’.
(P2)

‘You need to be a little bit bolshie and put the spin on it because sometimes people
can be a bit cautious. And you never get the patient out. So sometimes you just
need to be a bit pushy, but safe’. (P2)

Yet, participants felt that experience could be even better utilised. Experienced CCNs
were encouraged to be pre-emptive in facilitating care on the ACCU to benefit the patient
and avoid sitting down at the end of the patient’s bed between cares, waiting for the next
scheduled intervention:

‘We could have had more initiative in regards to encouraging trips out, going to
the helipad, going to the pub… go that extra level, go that extra step’. (P1)

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4.2.5 The ACCU setting.

Participants highlighted environmental challenges and factors impacting upon care on the
ACCU. Participants found the ACCU was very busy and it was difficult to facilitate care
at times. P1 observed that this was primarily caused by staff shortages. This was
challenging for the CCN as they often had to choose between delivering cares to their
own patient or helping a colleague care for their own patient that was ‘sicker’. P4 noted
that this was distressing for the CCN, and often involved communicating with the aware
patient that their care might be delayed. CCNs worried that this appeared to be valuing
one patient group over another. Participants also noted delays in gaining access to
controlled medications and performing rolls:

‘It can take you fifteen, twenty, thirty minutes, one hour time to get enough people
to reposition the patient. It's quite distressing for him, and even for us’. (P5)

Staffing numbers on the ACCU also failed to take into account the complex care needs
of this patient group, making care delivery more challenging for participants, as P3 felt:

‘It should really be counted into the numbers as what's required I suppose…
although they may be low-acuity, the number of staff required to look after
effectively is actually probably higher than a normal HDU setting’. (P3)

Participants also felt that the layout of the ACCU was a factor impacting upon care
delivery. There were noted differences in placing the patient in a bedspace in a side-room
or bay. In a side-room participants recalled having more time to deliver cares for the
patient as there were fewer distractions than in a bay, such as other CCNs requiring your
help. However, participants also found that patients became isolated in a side-room, often
only seeing the CCN caring for them and visiting medical teams during a shift. Patients
became withdrawn, bored and lonely. P4 also noted that being one-to-one with no support
could be very stressful if the CCN was unable to meet the patient’s care needs. Whilst, in
a bay, participants considered that there was more stimulation and activity that
reintegrated the patient back into society, yet they ran the risk of being ignored due to the
acuity often found in bays. This was noted by P3:

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‘You'd think it would be more interesting for the patient to be surrounded by lots
of people. Where actually they probably getting less attention in that
environment’. (P3)

Participants also found it challenging to deliver care with equipment that was either
lacking or delayed in arriving on the ACCU in time for use. This included a distinct lack
of wheelchairs which was escalated via data-reporting in the NHS Trust. As such, P3 felt
a stockpile of equipment for ready use on the ACCU would help facilitate care delivery.

Acuity in the
environment.

Issues with Layout of the
equipment. environment.

Figure 3: Intertwining categories within the ACCU setting.

4.2.6 Collaborative care.

Participants perceived working with members of the MDT to be another factor impacting
upon caring for this patient group. P2 felt that this patient group benefited from MDT
collaboration. This was particularly evident in the incorporation of the MDT into long-
term care teams for this patient group. These teams were developed to ensure continuity
of care through organising, planning, delivering, and evaluating care by each discipline
of the MDT alongside the patient. This was to enable care delivery that was tailored to
the needs of the patient, which P1 felt was the best way to care for this patient group.

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However, participants also noted that MDT members became less engaged in the
patient’s recovery as the patient became a long-term aware patient. P5 observed the
ACCU medical team spending less time with this patient group than the participant felt
they should have; spending more with a ‘sicker’ or ‘newer’ patient. P1 reflected this,
finding the visiting neurology team weren’t as consistent in reviewing the patient as time
progressed, feeling they had little to add.

Participants noted that this level of engagement also occurred within the therapy teams;
being less than participants would have preferred. However, P1 noted this was due to
understaffing as:

‘We don't have enough physiotherapists… I think there is quite a lot of short-staff-
ness in the therapy teams’. (P1).

Participants felt that there wasn’t as much patient support available as required. P1
noticed strained relationships between CCNs and the physiotherapy team. This was felt
to have delayed rehabilitation and also added responsibilities to the role of the CCN.
Often instructions were left for physiotherapy cares for the CCN to deliver on top of their
own nursing cares:

‘I just had the feeling that it is everything on our shoulders… they gave us
instructions but I haven't seen them that often at the bed space’. (P4)

‘What it is going to get is more stress on us. Because we are 24 hour time with
the patient at his bed-space. We are doing things that we shouldn't, that we don't
have to do because of our role…. It's going to be back to the nurses’. (P5)

4.3 Conclusion.

This chapter presented the findings of the interviews conducted for this study. Six themes
were identified as emerging from the experiences of CCNs caring for this patient group
on the ACCU, describing challenges and factors that impacted upon care delivery.

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5.0 Discussion.

5.1 Introduction.

This chapter will discuss the findings of this study in the context of current knowledge.
Three core concepts were developed during data analysis utilising the framework method
described by Pope et al. (2000). Study limitations will be discussed alongside
recommendations.

5.2 Core concepts: the experiences of critical care nurses caring for adult
patients with Guillain-Barré syndrome on an Adult Critical Care Unit.

This study’s aim was to explore the experiences of CCNs caring for adult patients with
GBS on an ACCU in a central London NHS Trust. The objectives were to explore what
challenges and factors were perceived to impact upon care delivery to this patient group.
The literature review revealed two themes: adult patients with GBS on an ACCU have
complex nursing care needs and caring for this patient group is emotionally intricate. The
findings of this study correlate with these themes. However, further challenges and
factors impacting upon care delivery also emerged. Three core concepts were developed
to reflect the fundamental aspects of participants’ experiences (Severinsson, 2001). These
were: caring for the aware adult patient with GBS on an ACCU; previous experiences
and perceptions of caring for the adult patient with GBS on an ACCU; and the critical
care environment.

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Previous
experiences and
The critical care perceptions of
environment. caring for the adult
patient with GBS
on an ACCU.

The experiences of
CCNs caring for Caring for the
adult patients with aware adult patient
GBS on an ACCU with GBS on an
in a central London ACCU.
NHS Trust.

Figure 4: The three core concepts within the experiences of CCNs caring for adult patients with GBS on
an ACCU in a central London NHS Trust.

5.2.1 Caring for the aware adult patient with GBS on an ACCU.

Participants identified the aware adult patient with GBS on an ACCU as a factor that
impacted upon care delivery; perceiving that this patient group was invariably aware of
the care that they were receiving, creating challenges for the CCN compared to the
‘normal’ patient on an ACCU. Participants noted their ease with performing the
impersonal, generalised nursing care required by the ‘normal’ ACCU patient (‘normal’
being implied to mean sedated by participants); compared to caring for the aware patient
who was described as more challenging, demanding and time-consuming. These findings
are reflective of a study of CCNs experiences by Everingham et al. (2013) who found
caring for less sedated patients to be very demanding, and led to an increased workload
for the CCN. Tingsvik et al. (2013) established that this was because CCNs were more
accustomed to caring for the ‘normal’ ACCU patient and struggled to adapt to caring for
the aware patient and meeting their additional care needs; describing what can be
interpreted as a challenge for participants in this study.

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The participants’ experiences highlight the significance of this challenge, with caring for
the adult patient with GBS becoming increasing prevalent on an ACCU as: there is an
increasing proportion of GBS admissions per year (P < 0.03); they spend a significantly
longer time on the ACCU (25 v 4 days); and have higher APACHE III scores compared
to the ‘normal’ ACCU patient (47 vs 31) (Ancona et al., 2018). APACHE III scores relate
to a severity-of-disease classification system with higher scores corresponding to more
severe disease and a higher risk of death (Knaus et al., 1991). There has also been a
paradigm shift within critical care medicine moving away from heavily sedating patients
requiring MV for critical illnesses such as GBS (Moore, 2011), towards caring for
patients requiring MV with either less or no sedation (Roberts et al., 2012; Devabhakthuni
et al., 2012; Strøm and Toft, 2011). This was reflected by participants who remarked that
while this patient group was initially sedated when requiring MV, they were quickly
removed from sedation and became aware of their surroundings. This practice is backed
by a recent randomized clinical trial from Denmark confirmed the viability of utilising
no sedation whilst delivering care to patients requiring MV leading to significantly
shorter MV duration, as well as shorter ACCU and hospital stay when compared to
patients receiving heavy sedation (Strøm et al., 2010). With this move towards an
increase in the number of aware patients on an ACCU, the experiences of the participants
in this study may become more prevalent.

As such, the qualitative study of Tingsvik et al. (2013) explored CCNs experiences caring
for patients on an ACCU, concluding that the aware patient was the biggest factor
enabling the provision of individualized care, better communication, and the
establishment of the therapeutic relationship for the CCN. Participants in this study
agreed, emphasising the ability to engage and empower the aware patient as integral to
care delivery compared to the ‘normal’ ACCU patient. However, they also noted that the
aware patient was a challenge impacting upon care delivery. Participants managed the
symptoms of GBS, such as blood pressure control, enacting MV care bundles, and MV
weaning, with little problem; yet found their dedication to these tasks interrupted by
perceptions of being unremittingly requested by the aware adult patient with GBS to
perform other simple tasks such as re-positioning or mouth cares. Leading to participants
in this study to report the challenge in meeting all of these care needs requested by the
aware patient, and then feeling guilty when unable to do so.

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Another challenge was participants specifically reporting they struggled to communicate
with the adult patient with GBS when they required MV; particularly when interpreting
the nuances that patients requiring MV have in regards to their non-verbal attempts to
communicate, and the difficulty in reconciling the attention, effort and ability needed to
interpret these, which then take away from time required in delivering other nursing cares.
Happ (2011) found that when CCNs are unable to effectively communicate with patients,
they were likely to speculate on non-verbal behaviours leading them to make wrong
decisions over what care needs to be delivered. Leading to further delays in care delivery.
Participants in this study reported the frustration felt by both the patient and CCN when
ineffective communication led to these wrong decisions. Previous studies have
highlighted a lack of communication skills by CCNs resultantly leading to breakdowns
in communication with patients requiring MV (Carroll, 2007; Laakso et al., 2009).
However, in this study it was not through a lack of skill by participants that
communication was challenging. Participants related trying multiple avenues of non-
verbal communication such as the alphabet charts and technologically-advanced
communication devices to help overcome some of this ineffective communication.
However, the devices themselves were ineffective, continuing the ongoing challenge of
ineffective communication impacting upon care delivery.

Swash and Hutchison (2002) reflected the participants’ experiences in this study with the
challenges of communication, reporting that attempting communication was time-
consuming. This was in contrast to Merchant (2011) who indicated that a minute
proportion of time per shift (0.056%) was spent by the CCNs in verbal communication
with their patients. However, Merchant (2011) is unclear if this included non-verbal
communication, with participants in this study indicating they spent a disproportionate
amount of time dealing with non-verbal communication challenges and the fallout of
ineffective non-verbal communication with the adult patient with GBS. The frustration
of being unable to communicate remained: delaying care delivery, straining the
therapeutic relationship, and disheartening both the CCN and the adult patient with GBS.
Moreover, with an increasing prevalence of this patient group on an ACCU in the future,
these challenges may become more amplified (Strøm and Toft, 2011).

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5.2.2 Previous experiences and perceptions of caring for the adult
patient with GBS on an ACCU.

Another identified factor impacting upon care delivery was the previous experiences and
perceptions of caring for this patient group held by participants. Participants had
preconceived notions of this patient group being a long-term aware patient, with an
average length of stay longer than the ‘normal’ ACCU patient. Participants perceived
similarities to other long-term patient groups that they had cared for previously on the
ACCU such as patients with high-spinal injuries or requiring slow respiratory weans.
Participants attached negative perceptions around delivering care to the long-term aware
patient; specifically, that they were a challenging, demanding, and time-consuming.
Participants even noted anticipating a challenging shift when allocated to this patient,
before it had even begun. Minton (2015) found that caring for the long-term patient is
often challenging for CCNs due to the numerous problems created by their initial critical
illness. Recovery is usually slow, with multiple complications throughout their stay on
an ACCU, and patients tend to suffer psychological problems such as withdrawn
behaviour and depression. Participants noted all of these challenges when caring for this
patient group. These challenges add layers of complexity for the participants when
delivering care beyond those required by the ‘normal’ ACCU patient.

Participants reported a feeling amongst CCNs on the ACCU that there was little to be
learnt from caring for the adult patient with GBS. In fact, P2 noted the majority of the
CCNs on the ACCU would prefer to care for a ‘normal’ ACCU patient to continue their
professional development. This experience reflects a study by Tingsvik et al. (2013)
where 423 CCNs were surveyed in Australia for their attitudes towards delivering care to
the long-term aware patient, with only 17.7% finding it more satisfying than the ‘normal’
ACCU patient. While 54.3% strongly disagreed. However, the study of Tingsvik et al.
(2013) did not explain why these attitudes existed, and further exploration in a larger
study would be beneficial to investigate if they impact upon care delivery. However,
participants in this study reported that this attitude may have had more to do with CCNs
preferring the chance to sit down between delivering cares to the ‘normal’ ACCU patient,
compared to the perceived constant challenges, demands and time-consuming nature of
caring for the adult patient with GBS.

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Participants’ perceptions of this patient group as challenging, demanding, and time-
consuming may have also emerged because there was a lack of formal training and
education opportunities available related to this patient group to alter these perceptions.
In fact, due to a lack of formalised training opportunities specific to this patient group,
participants found delivering care was often reliant upon previous experiences of caring
for the long-term aware patient, if not specifically for the adult patient with GBS.
However, this required the participant to have this previous experience, and may have
been the reason why few band five CCNs volunteered to participate in this study-fear of
being exposed by the researcher as too inexperienced or unknowledgeable to
appropriately care for this patient group (Atherton & Alliston, 2011). In fact, experience
plays an even bigger part than anticipated when caring for the adult patient with GBS.
Minton (2015) found experienced nurses were less dependent on detailed knowledge of
the specific patient group, rather they relied on their previous experiences to anticipate
care delivery (Minton, 2015). All participants in this study apart from P4 had cared for
this patient group before in their nursing careers across different settings. They all
reported utilising their experiences when caring for this patient group in the planning and
implementing of care delivery. However, challenges may arise, as Rischbieth, (2006)
speculated, because, while CCNs possess a diverse skill set, there is an incorrect
assumption that all CCNs hold the same level of experience meeting this patient groups’
care needs. This can leave less-experienced CCNs struggling to meet this patient groups’
care needs, as participants noted the need to guide less-experienced CCNs in delivering
care to this patient group if they had been allocated to care for this patient group. This
may have be particularly important on the ACCU as there are no National Institute for
Health and Care Excellence (NICE) guidelines for less-experienced CCNs to follow
when caring for the adult patient with GBS (Appendix 30).

Participants stressed that in the absence of formal training opportunities to overcome a
lack of experience, it was within the role of the experienced CCNs on the ACCU to
provide guidance, education, and development to less-experienced CCNs through role
modelling. Previous studies found role modelling by experienced CCNs is an effective
strategy to improve care delivery by providing informal continuous professional
development (Viljeon et al., 2016; Wongrostrai et al., 2016). Participants noted that do
this encouraged more positive perceptions amongst CCNs in regards to caring for this
patient group. Such encouragement of positive perceptions amongst CCNs has greater
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significance when considering that the increasing prevalence of both the adult patient
with GBS and the long-term aware patient is one of the biggest issues facing an ACCU,
with numbers expected to double over the next 20 years (Minton, 2015; Boyd and Evans,
2016). Altering perceptions towards caring for this patient group was seen by participants
as integral in getting CCNs more engaged with the long-term care teams on the ACCU
set-up to best facilitate care delivery that meets this patient groups care needs going
forward.

5.2.3 The critical care environment.

Another factor impacting upon delivering care to adult patients with GBS on an
ACCU was the critical care environment itself. Participants noted that the ACCU
was very busy; making facilitating care very challenging at times. A recent Care
Quality Commission (CQC) report on the ACCU noted that occupancy rates were
greater than the Royal College of Anaesthetists (RCA) recommendation of 70%
occupancy. In fact, as an example, between January and March 2016 the ACCU had a
bed occupancy rate of 98.9% (Care Quality Commission, 2016). This consistent, extreme
occupancy rate left participants describing difficulties in recruiting staff to facilitate care
delivery such as performing rolls, controlled medication access, and patient trips outside
the ACCU. This was a noted source of frustration for the participants as they reported
CCNs want to deliver the best care that they can, but found they were often unable to do
so due to not having enough staff on the ACCU to help facilitate this.

In a review by McVicar (2003), sources of workplace challenges for CCNs were identical
to those experienced by the participants of this study: heavy workload, poor relationships
with other clinical staff, and the emotional demands of care delivery. In fact, additional
challenges identified by Salem (2015) could also be seen in participants’ responses:
shortage of resources; lack of co-operation among MDT members, and concern for the
quality of care being delivered by colleagues. Participants reaffirmed these challenges in
care delivery to adult patients with GBS when discussing caring for this patient group in
a bed-space located in either a side-room or bay. Participants found challenges in both
situations: finding care delivery delayed due to with minimal available support in a side-
room, and in bays witnessing their colleagues putting their own patients’ needs above

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others by asking CCNs to delay care and attention to their own patient in order to help
others. Both situations left participants distressed.

Participants described more challenges in the critical care environment when working
with members of the MDT. Atkinson et al. (2006) noted that CCNs are essential members
of the MDT managing the complex care needs of this patient group. However, successful
MDT care delivery requires the coordination and interaction between its team members
to achieve this. Participants noted that when this was achieved on the ACCU, care
delivery was effective. Yet often it was not, hindered again by staff shortages.
Participants felt particularly frustrated with the lack of therapists from the MDT on the
ACCU. They described how these shortages meant they took on delivering cares outside
of their clinical role; feeling themselves worn down, devalued, and stretched by this
additional workload to beyond the point of being able to deliver all the cares they wished
to. This may have then reaffirmed participants’ reported negative perceptions of caring
for this patient group.

These staff-shortages were reflected in a recent CQC (2016) report which described that
the MDT, whilst effective, lacked sufficient numbers of physiotherapists, to meet
recommended standards (3.5 FTE vs. 8.0 FTE). The daily presence of a physiotherapist
at the bedside provides additional professional monitoring of the patient (Parry and
Steinberg, 2007); yet participants noted because of the shortage of physiotherapists, there
was a missing link in the MDT care delivery chain. Participants reported being left with
instructions by physiotherapists for the delivery of physiotherapy cares, which required
finding the time to incorporate these into their own nursing care delivery, adding to their
already heavy workload. The CQC (2016) report highlighted that the minimum number
of sessions of physiotherapy per week required for patients undergoing rehabilitation was
not being met, with the impact of every missed day receiving physiotherapy lowering
muscle strength between 3 to 11 percent over following months and even years (Williams
et al., 2010). Participants noted the stress of trying to meet these deficiencies, finding this
pressure was amplified by being at patient’s bed-side at all times as the CCN. Mealer et
al. (2017) noted feeling stressed and over-worked for an extended period of time can lead
to burnout syndrome. Burnout syndrome is described as feeling demoralized,
overwhelmed or defeated by morally distressing situations (Henrich et al., 2017), which
interferes negatively both on a personal and professional level (Teixeira et al., 2013).
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Participants noted frustration and despair at failing to deliver all of the required care to
this patient group, noting a feeling that they could always have done more for the patient.
This may already be additional evidence of burnout syndrome when caring for this patient
group, in addition to the reported negative perceptions, perceived one-shift limit for
allocation, and the venting of frustrations to other colleagues noted by participants in this
study. For the ACCU, this may have an impact upon staff retention in the future as CCNs
look for employment elsewhere, away from an NHS Trust with the third lowest staff
satisfaction levels in the NHS (CQC, 2016). Participants noted their desire to deliver the
best care they could, and may look for a better resourced environment that allows them
to do so to avoid this burnout syndrome.

5.3 Limitations.

There are certain limitations to this study. During participant recruitment there was only
one reply from a band five CCN. It is speculated that this group either did not meet the
inclusion criteria requiring previous experience caring for this patient group, or may have
felt intimidated by sharing their experiences with the researcher who is also a senior
colleague. Although this study selected appropriately to try to display the reflections of a
wide selection of the CCNs working on the ACCU, it may have added more
enlightenment and benefit to also explore the perceptions of less-experienced band five
CCNs. Particularly in light of the role that previous experience plays in care delivery to
this patient group.

It is also noted that whilst this study illustrates a worked example of the framework
method described by Pope et al. (2000) as a means to ensure a rigorous process in its
methodology; the researcher found this process to be time-consuming, occupying double
the pre-allocated two weeks of the study’s timetable, and reducing the time spent writing
the findings and discussion chapters.

The findings also have limitations in that there is a small number of adult patients affected
by GBS, despite an increasing prevalence of this patient group on an ACCU. However,
there is a generalisability and applicability to the findings as they are also the experiences
of CCNs caring for a patient group described as the long-term aware patient on an ACCU,

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a group set to also become more prevalent on an ACCU as management of patients
requiring MV moves towards using less or no sedation.

5.4 Recommendations.

There are recommendations of this study: The development of a specific policy around
the delivery of care to the adult patient with GBS on the ACCU which would provide
guidance for CCNs, particularly those with less-experience, in caring for this patient
group. As would providing access to formalised training on the delivery of care to both
the adult patient with GBS, and the long-term aware patient on the ACCU. This could be
developed as a specific study day or in conjunction with an existing study day provided
by the ACCU. There should also be greater recognition of the acuity of the adult patient
with GBS by the senior nursing team on the ACCU. This would be shown through the
recognition of the challenging, demanding and time-consuming care needs of this patient
group in the allocation of CCNs to ensure appropriate support. This may mean an increase
in the staffing requirements on the ACCU. Increased funding is also required for both the
creation of a stockpile of useful equipment that is readily available to use, as well as the
further recruitment of MDT members to meet RCA standards; particularly
physiotherapists. This is in order to reduce the workload of CCNs to ensure they can
deliver the care they aim to. Further exploration into why CCNs prefer looking after the
‘normal’ ACCU patient compared to the long-term aware patient, and if this impacts upon
care delivery as part of a larger study is also recommended.

5.5 Conclusion.

This chapter presented a discussion of the experiences of CCNs caring for adult patients
with GBS on an ACCU in the context of current knowledge; particularly the challenges
and factors impacting upon care delivery as perceived by participants. These were
presented as three core concepts developed during data analysis. The limitations of this
study were discussed and recommendations were also presented.

6.0 Conclusion.

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6.1 Introduction.

This chapter will present the conclusion of this study, providing a summary of the main
findings.

6.2 Conclusion body.

GBS is the most common cause of non-traumatic paralysis in the UK, with a complex
presentation of symptoms that can become life-threatening, requiring treatment on an
ACCU for longer than the ‘normal’ sedated patient. On an ACCU it is the CCN who is
in most contact with adult patients with GBS, delivering the majority of patient
assessment, evaluation, and care. This study explored the experiences of CCNs caring for
adult patients with GBS on an ACCU in a central London NHS Trust; with particular
focus on what challenges and factors were perceived to exist that impacted upon care
delivery to this patient group. Three core concepts emerged from the findings of this
study exploring the experiences of the participants on the ACCU. These were: caring for
the aware adult patient with GBS on an ACCU; previous experiences and perceptions of
caring for the adult patient with GBS on an ACCU; and the critical care environment.

Participants found caring for the aware adult patient with GBS on an ACCU to be a factor
impacting upon care delivery. Participants perceived that this patient group was
invariably aware of the care that they were receiving, creating challenges for the CCN
compared to the ‘normal’ patient on the ACCU. This may have been because participants
were more accustomed to caring for the ‘normal’ ACCU patient and struggled to adapt
to the aware adult patient with GBS and their additional care needs. Participants found
this patient group challenging, demanding and time-consuming in the delivery of their
cares. This was despite Tingsvik et al. (2013) concluding that the aware patient was the
biggest factor enabling the provision of individualized care, better communication and
the establishment of the therapeutic relationship. In fact, participants found
communication with the adult patient with GBS requiring MV to be especially
challenging; particularly when interpreting the nuances that this patient group had in
regards to their non-verbal attempts to communicate, becoming frustrated at the difficulty
in finding the time, energy, and ability to interpret these while delivering other nursing

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care. In fact, participants found that this would take time away from delivering these other
nursing cares and often led to delays in care delivery by the CCN.

Participants also found that their previous experiences and perceptions of caring for this
patient group were a factor impacting upon care delivery. Participants had preconceived
notions of this patient group being a long-term aware patient through perceiving
similarities to other long-term patient groups that they had previously cared for on the
ACCU. Participants found they attached negative perceptions around delivering care to
the adult patient with GBS, anticipating a shift that would be challenging, demanding,
and time-consuming, as well as hindering professional development. However,
participants in this study also reported that this may have had more to do with CCNs
preferring the chance to rest between delivering cares to the ‘normal’ ACCU patient
compared to the constant challenges of delivering care to the adult patient with GBS.
These negative perceptions may also have emerged due to a lack of formal training and
education opportunities specific to this patient group. Participants reported relying upon
their own previous experiences and knowledge, as well as role modelling care delivery
to less-experienced CCNs in the attempt to overcome these challenges, alter the negative
perceptions reported to be held by CCNs on the ACCU, and ensure that care delivery met
the needs of this patient group.

Another factor impacting upon care delivery was the critical care environment.
Participants reported that the ACCU was very busy with extreme occupancy numbers
and staff-shortages in both the CCN and therapy teams. Participants found this made
facilitating care very challenging at times; describing difficulties recruiting staff to
facilitate care delivery such as performing rolls, controlled medication access, and patient
trips outside the ACCU, as well as having to deliver cares that were outside of what they
felt was their role as a CCN. This particularly related to performing aspects of
physiotherapy care. This was a noted source of frustration for the participants, feeling
they were unable at times to deliver the best care that they could due to this added
workload. This was also related to participants reporting a heavy workload, poor
relationships with other clinical staff, and the emotional demands of caring for the adult
patient with GBS. Leaving participants feeling worn down, devalued, and stretched by
this additional workload that impacted upon care delivery and could potentially impact
upon future staff retention on the ACCU.
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This study achieved its aim and objectives. It explored the experiences of CCNs caring
for adult patients with GBS on an ACCU in a central London NHS Trust, whilst also
exploring the challenges and factors perceived to impact upon care delivery to this patient
group. It presented recommendations that identify the opportunity to design more
sensitive support in the future for the CCN to meet the care needs of this patient group
on this ACCU. It also highlights the need for further exploration into why CCNs prefer
to care for the ‘normal’ ACCU patient in comparison to the long-term aware patient to
investigate if this impacts upon care delivery in a larger study.

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8.0 Appendices.

Appendix 1: PEO framework.

Population and their Problems. Nurses.

Exposure. Guillain-Barré syndrome,
polyneuropathies, locked-in, adults,
critical care.
Outcomes and Themes. Lived-experiences, feelings, perceptions,
opinions, emotions, nursing care.

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Appendix 2: Study timetable.

Sep. Oct. Nov. Dec. Jan. Feb. Mar. Apr. May
‘17 ‘17 ‘17 ‘17 ‘17 ‘17 ‘17 ‘17 ‘17
Identification
of Service
Evaluation
Topic
Identification
of strategies
to address
the Aim and
Objectives of
the Service
Evaluation
Classroom-
based
tutorials with
lecturers and
supervisor

Review of
Literature
related to
Service
Evaluation
Development
of Proposal
for Ethics
Committee
Approval to
conduct
research
involving
data
collection to
address
Service
Evaluation
Aim and
Objectives
Submission
of Proposal
for LSBU
Ethics
Committee

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Conduct data
collection
from
interviews

Collate and
interpret
collected
data
Analysis of
collected
data to
address the
Service
Evaluation
Aim and
Objectives in
the format of
12,000 word
Research
Dissertation
Hand-in
Dissertation

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Appendix 3: Interview Guide.

Social and Demographic Data Collection.

Participant Unique Identifier:

Job Title:

Band:

Length of experience working on ACCU:

Questions (and prompt if required).

1. Could you tell me about your experiences of delivering nursing caring for adult
patients with Guillain-Barré on the ACCU in the last year please?

1. Do you think that you had enough prior knowledge to look after this patient
group?

2. From your experience of caring for a GBS patient do you think any challenges
exist whilst delivering nursing care?

Thank you.

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Appendix 4: Health Research Authority (HRA) – “not research” ethics clearance.

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Appendix 5: Ethics registration with ACCU’s NHS Trust Research and
Development (R&D) Department letter.

Received: 03/11/2017, 14:19

Dear [Withheld for confidentiality],

The following quality improvement project:

ID: 8719
Title: MSc in Nursing - Experiences of critical care nurses caring for adult patients with
Guillain-Barré syndrome: A Service Evaluation

... has now been endorsed by [Withheld for confidentiality] (Clinical Effectiveness Lead
for this project). You may begin your project.

Kind regards,

[Withheld for confidentiality].
Clinical Effectiveness Unit.
[Withheld for confidentiality].
Tel: [Withheld for confidentiality].

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Appendix 6: LSBU Research Ethics Committee approval letter.

School of Health and Social Care
103 Borough Road
London SE1 0AA
T: 020 7815 7815
F: 020 7815 8099
www.lsbu.ac.uk

Senior Lecturer Karen Sanders
School of Health & Social Care
T: 020 7815 8485
E mail: sanderkl@lsbu.ac.uk
9th February 2018

Dear [Withheld for confidentiality]

18/A/03 – Experiences of critical care nurses caring for adult patients with
Guillain-Barré syndrome.

Thank you for your e-mail dated 3rd February 2018, and the attachments responding to
the approval conditions detailed in my letter sent on 23th January 2018. You provide a
satisfactory response to all the conditions.

The Ethics Committee approves study 18/A/03.

We wish you well with your study.

Yours sincerely

Senior Lecturer Karen Sanders
Chair of School of Health and Social Care Ethics Committee

Cc: Supervisor name – [Withheld for confidentiality].

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Appendix 7: Approval email from ACCU Matron.

Received: 23/11/2017, 18:28.

Dear [Withheld for confidentiality],

I am sorry for the late response to your email. [Withheld for confidentiality] and I are
happy for you to proceed once it has been approved for the R&D department. I am sure
this will prove a very interesting study and wish you all the best.

Kind regards,

[Withheld for confidentiality].

Matron.
ACCU.
[Withheld for confidentiality].

T: [Withheld for confidentiality].
M: [Withheld for confidentiality].
E: [Withheld for confidentiality].

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Appendix 8: Participant Information Sheet.

Experiences of critical care nurses caring for adult patients with Guillain-Barré
syndrome

You are invited to take part in a service evaluation. Before agreeing to participate,
please read and understand what this service evaluation is aiming to achieve and why it
is being carried out. Please read this Participant Information sheet carefully. If you have
any questions about this service evaluation, please ask me for more information.

Thank you for reading this and for considering participating in this service evaluation.

What is the purpose of this study?

The aim of the service evaluation is to explore the experiences of critical care nurses
caring for adult patients with Guillain-Barré syndrome (GBS) on an Adult Critical Care
Unit (ACCU) in a central London NHS Trust.

Why have I been asked to participate?

You have been chosen to take part in this study as you are currently working on the
ACCU and have delivered nursing care to at least one adult patient with Guillain-Barré
syndrome for at least one 11.5 hour shift in the last year.

Do I have to participate?

No, all participation is entirely voluntary. If you do participate, you will need to sign a
consent form and you will receive a copy of this. If at any point you decide to
withdraw, you do not have to give a reason, and there will be no consequences for you
doing so. However, if the interview has already taken place, then all data collected from
you will be kept and used for analysis.

How is the service evaluation going to happen?

If you do participate, you will have one confidential interview with me. This will last
between 30 to 45 minutes maximum and will take place in an interview room at the
hospital on the 4C ward, away from the ACCU. A ‘do not disturb’ sign will be placed
on the interview room door. The interview will be audio recorded and the recording will
then be transcribed verbatim by myself afterwards. Your transcript will be anonymised
with a unique identifier for confidentiality and will be kept in a specific file on a
password protected computer. Only I will know your unique identifier. Besides me, the
only person who could see the transcripts or hear the audio files will be my dissertation

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supervisor at London South Bank University (LSBU). You will be asked to sign a
consent form and will be given a copy of this to keep.

What are the risks of participation?

You may become upset talking about an experience or a difficult time at work. If so, the
interview will stop, and we will discuss whether or not to re-start at some point in the
future. You will then be offered the chance to contact the ACCU Clinical Psychologist,
[Withheld for confidentiality], to arrange further support. Her contact telephone number
is [Withheld for confidentiality] and her email is [Withheld for confidentiality].

Please note that if you divulge anything during the interview which identifies a breach
in patient or staff safety, then Trust policy regarding reporting incidents will be
followed through referral to the Adult Safeguarding Team in the Trust.

Are there any benefits to taking part?

There is no intended benefit for you taking part. However, it is hoped that the
knowledge gained by this service evaluation will improve nursing care delivered to this
patient group on the ACCU in the future.

Participation may also be useful for you as a reflective experience as part of your
revalidation process with the Nursing and Midwifery Council (NMC).

How will my details remain confidential?

If you agree to participate, your personal details and quotes will automatically be
anonymized with a unique identifier to identify your contributions on all recordings,
transcripts and upon publication. All audio recordings, transcripts and other material
may be shared with my LSBU supervisor, but only I will know your unique identifier.

What happens to the transcripts and audio recordings?

All transcripts and audio recordings, as well as all other electronic material related to
the service evaluation, will be destroyed two years after the service evaluation has been
completed as per LSBU data protection policy. Until that time, all electronic material
will be stored on a password protected computer that only I can access.

Has this service evaluation got ethical approval?

Yes. It has been registered with the Trust’s Research and Development (R&D)
Department as a service evaluation. The project has also been reviewed and approved
by the School of Health and Social Care Ethics Committee at LSBU.

Can I see the findings?

Yes, you will be able to read the service evaluation once it has been completed and
successfully passed. The findings and any recommendations are expected to be shared
on the critical care nursing Band 5, 6, and 7 study days via presentations delivered by
the Researcher. It is also hoped that findings will be disseminated via relevant peer

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reviewed journals.

What if I have further questions or concerns?

If you have further questions related to the service evaluation please contact me directly
by telephone or email. If you have any concerns or complaints about the service
evaluation, then please contact [Withheld for confidentiality] my academic supervisor at
LSBU, or [Withheld for confidentiality], Clinical Effectiveness Lead for this project.

Contact details are below:

Researcher: [Withheld for confidentiality].

Telephone Number: [Withheld for confidentiality].

Email Address: [Withheld for confidentiality].

Academic Supervisor: [Withheld for confidentiality].

Telephone Number: [Withheld for confidentiality].

Email Address: [Withheld for confidentiality].

Clinical Effectiveness Lead: [Withheld for confidentiality].

Telephone Number: [Withheld for confidentiality].

Email Address: [Withheld for confidentiality].

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Appendix 9: Participant Consent Form.

Research Project Consent Form
Full title of Project: Experiences of critical care nurses caring for adult patients with
Guillain-Barré syndrome.

Researcher Name: [Withheld for confidentiality].
Researcher Position: Charge Nurse.
Contact details of Researcher - email [Withheld for confidentiality]. Telephone:
[Withheld for confidentiality].

Taking part (please initial in the box) Initials

I confirm that I have read and understood the information sheet/project
brief and/or the student has explained the above study. I have had the
opportunity to ask questions.
I understand that my participation is voluntary and that I am free to
withdraw at any time, without providing a reason.
I agree to take part in the above study.

Use of my information (please initial in the box) Initials

I understand my personal details such as phone number and address
will not be revealed to people outside the project.
I understand that my data/words may be quoted in publications,
reports, posters, web pages, and other research outputs.
I agree to the interview being audio recorded.

I agree to the use of anonymized quotes in publications.

____________________ _________________ _____________
Name of Participant Signature Date

____________________ _________________ _____________
Name of Researcher Signature Date

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Appendix 10: Example of field notes - Field notes taken during P1 interview.

Participant Unique Identifier: P1.
Date of Interview: 16.02.2018.
Time of Interview: 13:30.
Length of Interview: 34:35.

Observations

 Four to five minutes of what feels like rehearsed answers to begin the
interview. As though P1 had pre-thought about the topic and planned
answers.
 Emphasis made on both the positives and negatives of the MDT in care
delivery. Interact well. “Best way” to care for patient group. Need more staff
in therapy teams. CCNs doing their jobs?
 Real lack of equipment on the ACCU – escalating to higher levels via
DATEX. This seems to be delaying care such as getting patient out of bed and
off of ACCU.
 Role-modelling: way to get other CCNs engaged in care. Real negative
persona held by others towards caring for the demanding patient. Is the
workload too much or is it laziness on behalf of CCNs?
 P1 speaking about the patient who was on the ACCU for over 100 days. I also
know this patient and make sure to keep my distance as the researcher from
engaging in ‘story swapping’. Instead, let P1 share truth of her experience of
caring for this patient.
 Long-Term Care Team. P1 is the current clinical lead for this project on the
nursing side of things. In-depth knowledge of this. Very positive about its
impact and potential. Wonder how other participants will feel about this
project.
 Emphasis on the benefits of getting patients off of the ACCU. Normality. To
the pub. Re-engage with the world outside. Aware of being too
‘institutionalised’ and this impact on CCNs and care delivery.
 As experienced CCN she views it as within her role to push CCNs to not be
lazy and sit at the end of the patient’s bed doing the minimal nursing care.
Has seen this happen before enough to feel this.
 Interrupted once by two band eight nurses from another department coming
into interview room. Despite interview room being booked for interview and
do not disturb sign on door. Asked myself and P1 to leave room as they had a
meeting, despite my reassurance I had booked the room in advance. Bullying-
type behaviour as seniority ‘card’ pulled, despite being in the presence of a
senior band seven. Forced into finding a secondary location which eventually
was found and suitable to continue interview.

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Appendix 11: Daily staff safety briefing announcement.

Hello,

You are invited to take part in a service evaluation to explore the experiences of critical
care nurses caring for adult patients with Guillain-Barré syndrome (GBS) on an Adult
Critical Care Unit (ACCU) in a central London NHS Trust.

This will involve interviewing critical care nurses who have delivered nursing care to at
least one adult patient with Guillain-Barré syndrome for at least one 11.5 hour shift in
the last year on the ACCU. This is to gather information that deepens understanding
around this subject.

Please see the email from [withheld for confidentiality] for further information and
contact details if you are interested in participating.

Thank you.

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Appendix 12: ACCU staff email re. Recruitment.

Hello,

You are being invited to take part in a service evaluation to explore the experiences of
critical care nurses caring for adult patients with Guillain-Barré syndrome (GBS) on an
Adult Critical Care Unit (ACCU) in a central London NHS Trust. This is part of the
dissertation for [Withheld for confidentiality]’s Masters of Science in Adult Nursing
degree at London South Bank University (LSBU) and is due for completion in May
2018.

This will involve interviewing critical care nurses who have delivered nursing care to at
least one adult patient with Guillain-Barré syndrome for at least one 11.5 hour shift in
the last year on the ACCU. This is to gather information that deepens understanding
around how critical care nurses experience delivering nursing care to this patient group.
It is hoped that the knowledge gained could be used to improve the nursing care being
delivered to patient group.

Participation will involve one individual, confidential interview with [Withheld for
confidentiality]. The interview will last between 30-45 minutes maximum.

Participation is entirely voluntary, and you can withdraw at any time.

If you are interested in being part of the study, please contact me via email at [Withheld
for confidentiality] or via my telephone number [Withheld for confidentiality]. I will
arrange to give you further details and we will go over a Participant Information sheet
together. If you do decide to take part in the service evaluation, you will need to sign a
consent form as part of LSBU policy.

Thank you for your time, and please contact me if you have any questions about the
study.

Yours sincerely,

[Withheld for confidentiality].

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Appendix 13: Potential participant letter of invitation.

Experiences of critical care nurses caring for adult patients with Guillain-Barré
syndrome

Hello,

I am inviting you to please consider participating in a service evaluation to explore the
experiences of critical care nurses caring for adult patients with Guillain-Barré
syndrome (GBS) on an Adult Critical Care Unit (ACCU) in a central London NHS
Trust. This project is for the dissertation for my Masters of Science in Nursing degree at
London South Bank University (LSBU) and is due for completion in May 2018.

This will involve interviewing critical care nurses who have delivered nursing care to at
least one adult patient with Guillain-Barré syndrome for at least one 11.5 hour shift in
the last year on the ACCU. This is to gather information that deepens understanding
around how critical care nurses experience delivering nursing care to this patient group.
It is hoped that the knowledge gained could be used to improve the nursing care being
delivered to patient group.

Participation is entirely voluntary, and you can withdraw at any time.

If you are interested in being part of the study, please contact me via email at [Withheld
for confidentiality] or via my telephone number [Withheld for confidentiality]. I will
arrange to give you further details and we will go over a Participant Information sheet
together. If you do decide to take part in the service evaluation, you will need to sign a
consent form as part of LSBU policy.

Thank you for your time, and please contact me if you have any questions about the
study.

Yours sincerely,

[Withheld for confidentiality].

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Student Identification Number: 3525357.

Appendix 14: P1 Interview Transcript.

Researcher: So let's just start with your demographic details for P1. What's your job
title? #00:00:08-2#

P1: Ah, I'm a band 7. Senior sister. #00:00:10-9#

Researcher: Wonderful. And how long have you worked on this ACCU? #00:00:13-3#

P1: Four years. #00:00:14-4#

Researcher: Cool. So I'm going to start with the first question and it's basically just to
delve into everything to start with. Can you tell me about your experiences of delivering
nursing care for adult patients with Guillain-Barré on the ACCU in the past year?
#00:00:27-9#

P1: So I am, sort of, the ambassador for long-term patients on the ACCU and, um, I get
involved with all our long-term patients. I think we've only had one patient in the last
twelve months who had Guillain-Barré Syndrome, which was actually a different kind of
Guillain-Barré Syndrome because it was transverse from the feet up, and he was with
us... For nearly a year. So I only did one full shift with him but I would constantly be
checking on him every day so I was I was able to continuously see how he was
progressing. I didn't get involved initially at the start because he was unresponsive, but
probably was locked in, of what he came about, cause he could hear things were going
on. But because his Guillain-Barré was different, it was transcending from the feet up he
was actually, all his motor functions took a lot longer to come back, like regards to eyes
opening and speaking and so forth, and it's normally the other way for normal Guillain-
Barré Syndrome. So there was some issues there that maybe potentially he was more
awake than we were treating him and that was something that we needed to take on board
and look to address next time we look after someone. But all our patients... with regards
to his care and so forth, um, we created a long-term nursing care team for him to get some
continuation of care for him, they knew his routine, he knew their routine. Obviously
nurses have a routine they don't even realise. So we were able to build trust with him and
he was able to build trust in us. Um, throughout his time here... it was ups and downs. He

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had to be in a side room for a short period of time and we thought this was a good thing
because it will help with his sleep pattern and so forth, but we ended up moving him into
a four-bedded bay because we think he became a bit depressed, and he needed more
stimulation, and actually this was quite a big turning corner for him. Um, although his
sleep was not as well as it could have been, for stimulation wise he definitely came out
of the depression, he started to rehab a little bit quicker, and went from there. Of the
issues that we really had with him, um, I think, yeah, depression and lowness because
also he was from Australia, so we were having to contact his family which I then became
the main person with contacting his family in Australia to give them updates, ah, and he
couldn't type or anything so then I would type what he wanted me to type, and then went
from there. But I think actually the nurses did really well, they created a Facebook, um,
they were using Facebook for him so he could message his family. So they were really
good with that. Um, he had a really great support network with regards to, because he
worked for a tour company or something and they were really good in coming and seeing
him and keeping his vibe up. Um, but he didn't progress as quickly as normal, like
Guillain-Barré patients that I've looked after before and he had, I think, quite a lot of
long-term, he'd had it before as well, and he'd responded within two weeks, and so this
was much more difficult for, even us, to determine whether he was going to get any power
back or anything like that so it was really hard to know. And also, we thought it would
be much quicker, but after talking to the neurologists, who were really quite hands on as
well, they were able to, um, give us more information about if he was going to be able to
walk again and get his fine motor, his motor skills in his hands. But yeah, I think the care
they did here was really good. We also took him out of the unit and tried to, sort of, like,
give him a bit of normality as much as we could. We do work in an extremely busy
intensive care so it can be difficult to facilitate this but I think the nurses that were within
his care team, which I think is the ultimate best way to look after these patients, um, was
ideal. He was here for so long so I can't remember everything, it was like, there were so
many, there was probably more issues, you know, with regards to bowels and so forth,
and blood pressure and stuff when he initially came, um, but from the rehabilitation point
of view I think there are some areas that we definitely need to work on, but I think we
don't do too badly, and we have picked up on it a lot in the last couple of years.
#00:04:44-9#

Researcher: Cool. That's a lot of information straight away. #00:04:48-8#
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P1: Sorry. #00:04:49-2#

Researcher: No, that's great. So, let's just break it down a bit in terms of, so your role
was the leader of these care teams, and not particularly immediately day-to-day hands on
with these patients, but you're still coming in and providing care for this patient,
intermittently, how was that, being that, almost in that overseeing role, how did you find
that? Kind of trying to, do you think you were trying to direct the nurses or were they
self-directing, or was it hard for you overall just to have that role? #00:05:18-0#

P1: Most of time most of the nurses that were in that team would just get on, but they
also knew that they could come speak to me so they would come speak to me if they felt
something was not right, and also I would go in there and speak with [the patient] or
speak with the nurses, and the doctors as well, and they would say maybe something is
not right. And that's why I said we need to get him out of the side room and try something
new because that's not working... Sorry, say that question again? #00:05:46-5#

Researcher: How are you functioning in that role in terms of is this from prior experience
of looking after these patients that you're trying to direct this? #00:05:53-0#

P1: I actually, no. I've looked after them before in a neuro hospital. I did a lot of
Myasthenia gravis there, no Guillain-Barré in there, but I fell into the role. But it was
really as much developed, and then it really started pushing it and I think because I was
more on top of the nurses and keeping an eye on these patients more, the nurses sort of
like, a bit weary that they needed to up their game and make sure that they keep high
standards because coming in, checking on them. But also I'm quite approachable and
open, and I would take on, you know, that they were worried about something they would
tell me and they would see that I would initiate change to make sure that, you know, he's
getting better care. #00:06:30-0#

Researcher: Were you doing that specifically because he, this patient, was a GBS patient
or would you do this for all long-term? #00:06:36-1#

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P1: So, any patient that is over seven days on the unit and is responsive. So it's not, they
have to be responsive and they must be engaging with rehabilitation, they go under, they
are classified as long-term patients. He didn't fall under the long-term patient initially
because we were not sure of his conscious level. #00:06:54-5#

Researcher: Ok. #00:06:54-6#

P1: So with rehabilitation, like if the patient is semi-conscious and they're not seeing
what we're doing to them, there might not be as much benefit to have a consistent long-
term care team there. So it wasn't until later on when he started becoming more engaging
that we then developed the team for him and went from there. #00:07:11-2#

Researcher: Ok, and was that like an overall team decision, say doctors, nurses, long-
care team that put him on the long-term team, or was it you, or was it a nurse at the bed
space? #00:07:21-2#

P1: Ah, it was probably, like, we have a long-term care meeting on Thursdays, but I think
it was one of the nurses came up to me and said 'you know, he's been here for seven days
do you think a team would be ideal?' #00:07:34-5#

Researcher: Ok. #00:07:34-5#

P1: And then went from there. But it can be that, or it can be at the meeting, the MDT
meeting, from the, which includes the therapists - speech, SLT, and the consultants, on
Thursdays. So they sometimes highlight it. It comes from various... otherwise I'll just
have a look at the handover and have a look at the patients and then just develop them.
#00:07:53-2#

Researcher: Ok, cool. And as it was going along, were there any sort of issues from your
experience, or things that arose that you, you sort of remember about it all, in terms of
were there challenges, rewards? What was going on that you can remember? #00:08:11-
4#

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P1: I think the challenges was making sure that he had a good support network because
his family were Australia, so keeping that connection open and encouraging his friends.
But he then, but we were able to do that because he was also developed quite strong
relationships with the nurses, and I think they were really helped him get through it and
support him. So it was challenges, but I think we addressed it in other ways. Um, issues
we had with him, is that what you were saying? #00:08:40-7#

Researcher: Yeah, issues, challenges. #00:08:42-5#

P1: Challenges were the depression, definitely. Um, and... Just his expectations as well,
because he probably was like 'why am I not recovering quicker because I recovered
within 2 weeks before?' and him just losing all his own, like, um, independence, because
he was completely dependent on us to do everything. Um, I'm sure that was definitely
really depressing and challenging for him. Um, and also, whether, we, whether he wanted
to stay in this country for his rehabilitation or go back to Australia. #00:09:17-4#

Researcher: Ok. #00:09:17-4#

P1: So he had a UK passport so he was entitled, although he didn't have a GP, he was
entitled to all of his cares here, but then he needed to get a GP otherwise he couldn't get
his rehabilitation. He had no address so there was a bit of a delay in referring him for
rehabilitation, so that was another challenge that you had as well. Um, but he chose to
stay here so we must have been doing something right [laughs]. Also we did try look at
repatriating him when he was a little bit more depressed, um, and, he... To transfer him
would have cost, like, £70,000, and we were trying to get him to a level where it may
have cost a little bit less, but he had to be able, you know, to be in control his bodily
functions, he had to be able to sit in a chair for two hours, and that was not, we couldn't
do that. #00:10:02-7#

Researcher: Ok, and was this, like, weighing on your mind these challenges, or how
were you dealing with this kind of challenges? Like, you've talked about the solutions,
but how did you get to these solutions? Were you just creating them yourselves, were you
talking to other people? #00:10:15-5#

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P1: Yeah, so we were talking to the neurology team, we were talking to his family, we
were talking to [the patient] a lot, with the physiotherapists were talking to him a lot. Ah,
and we actually had a big meeting with [the patient] in there, with his family, and the
neurologists, and everything, bringing up ideas of what he was thinking, what he was
wanting to do. I think we only did that twice, and it was really good because he was in a
side room and we made the meeting about him. He was right in the middle and we all sat
around him and discussed it, and then he would talk to us because his family could only
come over for so many weeks and then they had to go home. So we were ensuring that
was happening at that time and then we would come up with ideas that would make [the
patient]'s journey while he was here better, and I think we wanted to make sure he was
getting as much information as he could have so he could make the decision. So it was,
yeah it always a multidisciplinary team decision, these ones, yeah but bringing...
#00:11:12-2#

Researcher: That sounds quite labour-intensive in terms of time-intensive. Is that taking
you, say if you're in charge of your... Got your own duties, aside from this, is that taking
a lot of your time out or is it? #00:11:22-7#

P1: It does. Well, I'm really lucky in my position that I get non-clinical time. So within
my non-clinical I've been able to facilitate that. It can be really, time, it is time...
Especially for maybe the physios' and stuff like that, it can be very time-consuming, but
I think that you get it paid back in making sure that the patient is happy. #00:11:46-8#

Researcher: That kind of satisfaction? #00:11:48-1#

P1: Yeah, exactly. #00:11:49-1#

Researcher: And you were talking a bit about this collaborative effort and this MDT and
that kind of thing [INTERVIEW INTERUPTED BY PEOPLE ENTERING INTERVIEW
ROOM]. Alright, just to continue after that interruption. Going back to that talking about
the collaborative effort between the MDT, and how people are interacting. How were you
finding that as, sort of like, the one leading overall the care, I guess you could say, from
the nursing point of view? #00:12:16-0#

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P1: When it works, it works really well. But unfortunately I don't work every Thursday
so I can't come to that meeting and I have tried to encourage, like, the people on the team
or the nurses in charge to go to that meeting on that Thursday, but unfortunately it's fell
on deaf ears so it doesn't always happen. But, um, we would email quite religiously and,
um, they've actually started writing on CRS the full, um, meeting minutes so that anybody
can have a look at what was discussed at the long-term meetings, and we've sort of
continued to feedback to each other about things. So if I wanted more input from physio
then I could email them, and if they wanted more nursing they could email me. And it
was always in the loop, and people always would know that I'm here and if they wanted
more information they could email me or call me. I think that, it's sort of like, from a
nursing point of view, they saw I'm, like, will sort everything out if they have any issues,
and then I branch off to the therapists, cause our relationship isn't exactly strong with the
nursing staff and our therapy staff. But then I am in the middle and I branch it and then
we go from there. #00:13:19-5#

Researcher: Ok, that's interesting to hear. So you, you've got these intense needs for
professional collaboration but the relationships seem to be a bit distance or strained?
#00:13:28-6#

P1: They sometimes break down and they can be a bit strained at times. Sometimes
they're great, it just depends on the characters I think as well. #00:13:35-4#

Researcher: Ok. #00:13:35-4#

P1: But I think being there and them seeing that I'm quite… That we need them and we're
working collaboratively together, they're a bit better. It has gotten a little bit better in the
last couple of years. #00:13:50-5#

Researcher: Ok. And how was it, that's sort of, we're talking, in that regard, OT's,
physiotherapists, social... #00:13:57-3#

P1: Speech language therapists, psychologists... not so much the occupational therapists.
Oh no, she was for splints. Splinting. So OT, SLT, physios, psychology, medical,
neurology. #00:14:21-7#
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Researcher: Ok. And how were you finding as leading this, and this sort of situation,
dealing with the doctors and the medical team, so not just... first of all start with the
ACCU team, how were you finding they were, compared to in this experience?
#00:14:36-9#

P1: The consultants rotate, so they can all have varying takes on the long-term patients.
The majority, they're really, really good, quite enthusiastic, always looking at ways to get
patients onto the rehabilitation programs early, or getting speech language in to try and
help increase communication. For a while he couldn't speak because he didn't have the
muscles in his mouth so he was able... He was looking through the, he had something on
the tip of his nose and then he was able to spell stuff out until that broke [laughs]. But,
they were really good. They were always trying to look at innovative ways to make his
experience here better. And they're actually really good with long-term patients, the
medical side. The neurology side were really good in regards to updating [the patient]
and his family when they came, but they weren't maybe as consistent, didn't come as
much, but they didn't have much more to add because there were some queries about him
having some IVIg, so like, they weren't maybe as fast as they could have to come and
sort that kind of stuff out. #00:15:39-6#

Researcher: Ok, that's cool actually. #00:15:40-7#

P1: And also they were a bit, they didn't really know, like, because he had such a rare
kind of Guillain-Barré, it wasn't like your standard, so they were sort of like finding their
feet with it as well. And there was no real way of predicting what he was gonna, how he
was going to recover, if recover at all. #00:15:57-2#

Researcher: Do you think that had an impact on the nursing staff in terms of when you
can see the supposed 'experts' being a bit unsure of how it’s all going to go? Do you
reckon that was, from your point of view, affecting the way nursing was going, or did it
affect the way that you were viewing it? #00:16:12-2#

P1: Yeah, because you want to try and reassure your patient and, sort of like, make sure
they're updated on everything that's going on, and if you can't give any information that
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is positive or have any kind of prediction for the future, it's sort of like disheartens the
nurse and it'll dishearten, you know, can't reassure your patient that, you know, that this
is what he's got to look towards. You know, sitting in a bed all day just waiting for some,
you know, his hand to move or something like that. #00:16:37-4#

Researcher: Cool. #00:16:39-7#

P1: Although when he did ever have any movements because we also did, like, a staffing
diary. The nurses got well excited and keep writing heaps and heaps and heaps in his
diary like 'oh my gosh you're moving your finger!' [Laughs]. So they were more excited
for him probably when he started getting better, than he was himself [laughs]. #00:16:58-
1#

Researcher: And, so those are, like, sort of management issues that you found. Do you...
can we talk a bit about maybe some of the feedback you were getting from the nurses or
things that you found yourself about nursing care challenges or rewards or things like
that, that were good, bad, whatever you want to use the word, that you were getting
feedback about? Say like, we're talking ventilators, or pain, or something like that?
#00:17:21-8#

P1: Yeah, pain was probably a massive issue for the patient, and he, so he was like having
heaps of side effects. Of what I remember he was having heaps of side effects to
Morphine. We started him on Tegretol which worked a treat. But the neuropathic pain is
like the worst pain ever, so there was a lot of that to make sure they weren't over sedating
him but ensuring he had enough pain relief. And I think for a while, like, when we were
wanting to turn him he was really reluctant because he was in so much pain. Didn't want
to get into the chair because he was just, his back and everything was just so painful. So,
that was really slowing down our rehabilitation, and the nurses may have been a bit more
reluctant to push him and I think he could get quite frustrated at some times, and get a
little bit, swear at the nurses on the odd occasion. Through pure frustration and also pain,
but that probably slowed him down a bit I think. So pain, what were some other things
that he had issues with... I don't think he had any issues with pressure sores, I think we
were pretty bang on that. He did have issues with loose stool for quite a long time, not
because it was infectious, just I think, like I don't he didn't have any tone and that was,
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he was probably frustrated with that because he kept opening his bowels and he had no
control over that. And that sometimes prevented us rehabbing him as well because, you
know, he had a BMS in. That was probably a problem. Pain, depression, bowels... splints,
delirium, not sleeping at night time. Completely lost his, um, for a while, day-night
pattern. Lost that completely. Had to get that back. #00:19:07-8#

Researcher: How were you doing that? #00:19:10-7#

P1: So, we were... he would start on, like, Zopiclone, Melatonin, trying to increase his
daily activity, or routine to increase more, um, activity, like being in a chair, being awake,
physio, and, um, just also, like, making sure the windows were open, if we could take
him outside, we would take him outside. Stuff like that. I think he was on Amitriptyline
as well. #00:19:37-2#

Researcher: You also talked about moving in and out of a side room and helping with
the depression and things, what was all that about? #00:19:46-5#

P1: I don't know if there is any literature behind it or anything but it was more like we
should just try it to see what was happening because he was becoming very withdrawn in
himself and refusing to rehab, and sometimes being in that side room you've got just the
nurse with you all day long can be really isolating, and you're just looking out a window.
And he'd probably been in a side room for maybe like two months and it was just to give
it a go, like, so he could see there was a world outside this side room. He had been out in
the wheelchair, no he wasn't getting out in the wheelchair that much either. So, and also
it gave him sort of like, he could see there was life after that side room because I think
you could just think 'I'm sitting in the side room, there's no-one else around, and I'm going
to be in here forever'. And you couldn't see any light in the end of the tunnel, and when
he came out he saw there was more life around. You know, we put him in the corner of a
side room, and he still had windows so he had that natural daylight coming, and we
decorated it, everything, as he needed but he could see the nurses and other patients
coming and going and, I don't know, it was weird, he just turned around once we put him
into the four-bedded bay. That doesn't always work and that's probably against
everybody’s recommendations in literature in regards to, like, sleep pattern and so forth

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like that, but it worked for him and I think you just need to try anything to... #00:21:00-
1#

Researcher: And how did you bring that about? Was it because you were in charge, or
did you put forward to say whoever was in charge of moving things around? #00:21:07-
9#

P1: Yeah, I put forward that he needs to get out of that side room, and if that was feasible,
to run it past the consultants and the physios, which I think they did. They agreed and we
came to the conclusion that we did that. #00:21:19-4#

Researcher: It's quite a, as you said, you think it might have been against literature or
whatever, common understanding, whatever you want to call it. How did that make you
feel, just being, being brave enough, sort of, to make that recommendation? Did you feel
like you had to work up to that point or justify it or what? #00:21:41-0#

P1: Um... No. Just, I think I was just... Sort of like... I think that people had faith in maybe
that wasn't a bad idea themselves as well, and they could see where I was coming from
and they listened to my argument where I was thinking that we have to try something
because nothing's working at the moment. And also because I'm the long-term
ambassador, you know, they have to listen to me [laughs]. #00:22:12-4#

Researcher: Did you find that often, like, that you would have to fight that corner or
fight, a sort of, a recommendation you would make in this sort of situation, this long-term
GBS patient? #00:22:22-1#

P1: I don't think I had to fight. Everyone was quite good with it, but I felt like there was
maybe, we could have had more initiative in regards to encouraging trips out, going to
the helipad, going to the pub, like just to try... There's maybe not as much initiative from,
like, your floor ward staff. It would be like, I would organise it and then they would go
'ooh'. Like, really push for it 'you've got more staff, we need to go'. So I think from that,
the nurses are getting better, but they need to be more pushed to, like, go that extra level,
go that extra step. This is a trauma intensive care, so a lot of the nurses want to be looking
after the sick trauma patients, and not look after the long-term patients. But actually the
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long-term patients can be more complex and more fun than the really sick, sick ones. But
it's finding that, it's like, whether he'd be better treated in a neuro intensive care, specific,
or within a big trauma unit like ours. It's hard to determine which is, where the best place
to treat these patients is. And I think we did quite well with him, but it would be
interesting if other specific, like at the National Neuro, they have that special neuro
medical intensive care, whether they would've done something different than we had
done, you know, and gone from there. #00:23:41-8#

Researcher: And, you talked about trying to get the nursing staff to show a bit more
initiative, how, how do you think that would come about? Is that something say more
education, or is it more training, or is it, just more staff to get people on the floor to give
them time to think or what? Because you said it is a busy trauma unit so... #00:24:00-5#

P1: Yeah, I mean it would be great to have a little bit more staff on the floor. We're
always short but, I think, like, role modelling, like seeing that, me going with the patient
out on the wards and then you saying 'this is what we are going to do', then they then saw
that I wanted to do that, and they then saw, also, how much it benefited the patient, like
how much they loved it. And then all of that energy was also fed back to the staff nurse,
as we were also bathing this patient as well, and that was with a new hoist that was coming
out, this new thing that we are doing, and he had, like, so much satisfaction from that.
And just seeing how much he enjoyed it then fed back to the nurses. And then they started
doing it more often because they knew how much it meant to the patient. But it was just
me at the start, encouraging, encouraging, to, you know, let's not just sit there and watch
him sleep. Let's get him up. Let's get him going. Let's get him out. #00:24:50-5#

Researcher: And do you think that that is the best way to, sort of, deal with a patient like
this? As a nurse is to, sort of, act as a role model, and try create a, sort of, level of
expectation? #00:25:00-6#

P1: Yeah, and be, be stimulating to your patient. Don't just sit there at the end of bed and
watch him sleep. Put your, you know, your arm splints and so forth on him and then just
sit back and wait for your next set of obs. You need to be very engaging with these
patients, especially when they've got no relatives. Speak to them. Talk to them. You
know, read to them. If you've got time to do it, you need to do these things. And that's
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what they need the most. Because they've got nothing, they're completely vulnerable, but
if they can see that someone is giving just a little bit more, they'll give a little bit more
back, and it's just finding that balance. #00:25:35-9#

Researcher: And were you doing, were you communicating all this verbally or by action
do you think, or did you ever have to sit down with people and say 'look, actually... Buck
up your ideas'? Or was it enough here, in your experience, with these other nurses just by
doing it a few times in front of them that they, sort of, took the hint? #00:25:54-1#

P1: I think doing it in front of them and, as well, like, probably not formal sit down with
them, but in passing I would be like 'do you think we should be doing this?' You know,
and they were like 'yeah that could be a really, really good idea. Yeah, we could do that'
and I think me actually going to the bedside and helping them, and them feeling confident
to do it more helped. I think that was probably the most, because they were seeing I wasn't
just saying 'you should do it', but being actually hands on. Then they were doing it more
often. #00:26:21-2#

Researcher: You talked about, sort of, this rewarding feeling that nurses were getting
from basically seeing the patient was enjoying it. Um, what's your sort of, how else were
you seeing that? Were you seeing it in better performance? Or, was it being fed back to
you? #00:26:37-8#

P1: Yeah, I think just his generally level of being, his episodes of being low were less.
Um, but also, I think he felt like he was part of, like, a family because there was so many
aspects with him. There was, he really liked motorcycling, so then, like, nurses were
going out of their way to make sure that he had seen, like, a video from them. They were
just going off their own back to, like, make sure he was feeling, like, not isolated. And
that there was a world outside. It's hard to say. I can't really explain it. But they were
going over and beyond by the end of it, you know, like, because they could see how much
he was liking it. And you know, he was laughing, and he was rehabbing much faster at
the end. He rehabbed really quickly. Even his weaning from the ventilator. So, I think
seeing his rehab, less low points, were probably signs that he was, you know, in a good
state of mind. #00:27:34-6#

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Researcher: And was this, so you said by the end the nurses were doing this, so this
wasn't happening from the start? #00:27:40-6#

P1: I think initially because his rehab was really difficult, because he couldn't speak, he
couldn't engage, he couldn't open his eyes, it was hard to, like, get that relationship with
him, build that relationship with him. That's why we don't do the teams with people that
don't engage. Because we need, it's finding that trusting relationship. So the nurses
couldn't quite understand what he needed because he wasn't able to communicate it. And
they also, it was later on that we started developing more of a relationship with his friends
and his mum and dad. And they would email us things that he would like, and then we
could initiate it. But then it was, sort of, like when he was not quite awake yet he probably
could have done with those things but we didn't know how much he was able to engage,
he was understanding, or whether he was awake. Which, it sounds like he was awake.
#00:28:34-6#

Researcher: Ok, and... Just to process that information. So you talked about things like,
the nurses were doing things like making sure he was watching a motorcycle race and
things like that... #00:28:50-1#

P1: Yeah, and a band. I think there was a band that he, they did like a band, like a charity
thing for him. Yeah I mean, it was like, he really liked this band and they did a dedication
for him and it was on Facebook and in the, yeah... #00:29:03-7#

Researcher: That's cool. And, do you see that happening with, say, every GBS patient?
Was this a specific one? You say you've only really seen one, this long-term one, this
year, what about any patient, GBS patient that ends up in ITU, so this was a long-term,
that came into your long-term prerogative? #00:29:25-4#

P1: So the only one, the only other one, GBS patient, others, I've seen is when I was at
my other Trust, which was a neuro-medical intensive care. I was only there for on a
rotation basis. But they responded a lot quicker, but they were more, like, blood pressure
was a lot more unstable. The unit I was in was 'the worst Guillain-Barré' that would be.
So I was never, their rehabilitation was quite varied as well, but they were do heaps more
innovative stuff. They were doing lots more IVIg, they were doing, like, UV therapies.
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Um, I think they were taking patients out and so forth, but they were normally really,
really unstable these patients, and it was just getting their blood pressure right. But I was
never there for, they were never there for as long as the patient that was here... But they
were pretty good there, but they didn't take them out as much. And I think also with, here,
we don't have as many chairs, like wheelchairs, and I think that may have delayed his,
you know, getting off the unit, stuff like that. #00:30:33-1#

Researcher: Ok. #00:30:33-4#

P1: I'm just thinking is there anything else we did there? I wasn't there long enough, it's
too long ago. #00:30:37-5#

Researcher: And just the last, sort of, the last bit just before we finish up. Just sort of
reflecting on, so we've talked a lot about good and some bad things, the challenges and
rewards that have been with this patient. Talking about the unit as a whole because you're
sort of running this long-term care for this patient group, what's your experience of how
the unit's actually dealing with this? Were you finding there were obstacles that were
blocking you from trying to do stuff? Or were there things that were really well
facilitated? Things like that. #00:31:10-7#

P1: I think when I took it over, for, like two years ago, the long-term, there was a real
negative, like, persona, about long-term patients. Nobody wanted to look after them. No-
one felt, like, was enthusiastic about them. But because I've come along, I'm quite
enthusiastic and engaging and really hands on with long-term patients, It's sort of, like,
changed the morale and the attitude towards these patients. And people are more keen,
they're more active in regards to feeding back to me. Say someone's not got a team, they'll
come and see me. And they're sort of seeing the benefits. And we also do the, what's the
thing where they come back, the return, the patients' come back and talk about their
experience here. Oh my goodness, why? It's just gone out of my head... follow-up clinic!
#00:31:56-8#

Researcher: Follow up clinic. Ok. #00:31:57-6#

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P1: Yep, so I think they've been coming onto the unit and they're seen as these long-term
patients as well, and that's helped as well. Challenges; physio, we don't have enough
physiotherapists. We didn't have an occupational therapist for, like, most of last year, we
have one now finally. We don't have a full-time speech language therapist. I think there
is quite a lot of short-staff-ness in the therapy teams, and also equipment. There's quite a
lot of that we don't have as well. That could help more in the future. #00:32:29-4#

Researcher: And how would you identify what equipment that you would need? Or what
would be the equipment, say for example? #00:32:35-2#

P1: Well, the wheelchairs is probably the big thing. And that has been identified through
DATIX to try increase its requirement by going up the tiers for priority in regards to
buying because we're in financial measures. So they've been doing DATIXs' for that. In
regards to, like, the communication aspect whether he had the dot on his nose and he was
able to point at the letters, I've only seen that once and it broke, and then it never really
had any follow-up. But I think that's probably also we didn't have a speech language
therapist to keep pushing that, and we were trying to push it as well, but it's, you know,
quite new technology, and that would be something that really needs to be looked at a bit
more because communication is, like, your backbone of keeping your patients' sane.
#00:33:17-4#

Researcher: Is there anything specifically from the nursing point of view you could think
of that need to be identified or rewarded, or whatever you want to say? #00:33:25-2#

P1: I think the long-term patient teams work hugely in regards to rehab and weaning from
ventilation. I think they're really, really good. Maybe more training on long-term patients
which I was trying to facilitate, but, um, it was a bit more difficult in regards to holistic
care and psychological care. They do a psychological day here now but maybe theirs
needs to be more emphasis on looking after your long-term patients. And even, like, with
regards to, like, massage and stuff like that. Looking at those things more. I think maybe
we're not as good at that. There's these things we can bring in, and I think his friends...
sorted that out. The massage. And now we do it for all our long-term patients. You know,
we have got that phone number. So, maybe just our holistic care we need to up a bit more

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- massage, reflexology, yeah, those little things. Because we're all acute, acute and we
need to shift it slightly and have more emphasis on that. #00:34:29-2#

Researcher: Cool. Well, thank you very much for talking with me today. That's all done.
Very nice. Thank you. #00:34:33-7#

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Appendix 15: P2 Interview Transcript.

Researcher: So, this is just to start the interview with P2. Just to start with some
demographic details, to start with. So, what's your job title and band? #00:00:10-7#

P2: Sister. 6. #00:00:13-5#

Researcher: Cool. And how long have you worked on this ACCU? #00:00:16-1#

P2: Ah, Eight years. #00:00:17-7#

Researcher: Ok, cool. And that's demographic details. So, now just onto, like, this loose
structuring of questions. Can you tell about your experiences of delivering nursing care
for adult patients with Guillain-Barré on the ACCU in the past year? #00:00:30-0#

P2: Um, so, yeah, I've looked after GBS patients in different stages. So initially, they're
normally, well in my experience, they've been quite unconscious, not aware of, well
they're aware of their surroundings but they're quite locked in. So initially I can remember
the neurology doctors telling me to, like, 'open the patient's eyelids and talk to them
because they can't do it themselves'. So that's quite difficult trying to remember that the
patient is aware, they've just got, you know, locked-in syndrome so they can't formulate
a response. And then as they move, progress down, obviously they become a bit more
demanding because they've lost all control. So I find them a difficult group of patients to
manage as they become more like the respiratory wean patients. So, you know, they might
not have use of their arms and legs, not being able to communicate properly, so they get
quite frustrated. And we can all, ah, you know, patients that start tapping and clicking
become quite annoying. So I think, yeah, they remind me a lot of, like, the spinal patients
that we have where once they're quite established on the unit people don't really want to
look after them, and it's difficult to recruit them on nursing teams. Which I think helps
them to have some consistency, but they're quite rewarding patients because it's good to
see their progress if they progress, progress quite quickly. And they tend to be on the unit
for quite a long time. So I think you can formulate a, form a relationship with them which
you can't do with some patients. So good and bad stuff really. We all remember one
particular patient, so, but yeah we've had a few recently. There was a lady quite recently

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who we just saw in the clinic, but, um, then I remember a guy from a few years ago that's
come back to speak to staff about his experiences. So... They're patients that we remember
I think because we don't get them very often, but they are on the unit for months rather
than days or weeks aren't they? So you get to know them quite well. #00:02:42-9#

Researcher: All right, cool. There's quite a bit in there so if we can just break that kind
of stuff down and just work through it. So you started first with, kind of like, that quite
acute stage where they're sort of unconscious... #00:02:54-7#

P2: Yep. #00:02:54-9#

Researcher: Just to delve into that a bit more. So, the neurologists were telling you to
open eyes so they could see you. Were they telling you any other kind of stuff?
#00:03:03-2#

P2: I think I remember them saying, you know, 'always say what you are doing' and stuff.
And I mean, we kind of do that, well I kind of do that with patients anyway even if they're
sedated I'll say, you know, 'we're going to roll you now' and stuff. But, I think they just
would say, to just remind me that the patient is aware. They just, you know, they can't
show it. So, yeah, I can't really remember... Just explaining what we were doing, and then
when he was, you know, it was speaking to the patient and updating him on his condition,
you know, he's going to have plasma exchange and this kind of thing. And he would come
along and, like, hold his eyes open for ages which I used to think that that might be a bit
painful but the patient didn't really remember it. So, yeah, I can't think of anything else.
Just to keep talking to them really. #00:03:55-5#

Researcher: Was that different to looking after the normal kind of patient, the sedated
patient? Was that changing your attitudes or the way you were caring for that patient?
#00:04:03-9#

P2: I mean, I guess knowing that they're aware because, I mean, when patients are sedated
and paralysed you kind of think, you know, they're not really awake and aware, so I guess
it's being mindful that these patients are awake and aware, but they don't look awake and
aware. So I guess... I would treat them a bit differently to someone that's sedated because
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I don't want them to have, to be frightened or worried about stuff that's going to go on if
they are awake and aware underneath. Does that make sense? #00:04:37-9#

Researcher: Yeah. Is that your only concern while they're in that kind of stage?
#00:04:41-5#

P2: I guess I want them to be comfortable. I don't want them to not be aware of what's
happening to them. So, like, if we're going to roll them, if we're going to suction them, I
tell them that's what we're going to do so they can expect it. If it's a sedated patient I'll
just be saying, like you know, 'the tubes coming down now', whereas if it's someone with
GBS and they're awake and aware I might be, like, explaining a bit more why I'm doing
it. So why we need to make them cough. I guess you treat patients a little bit differently
when you know that, when they look like they're asleep but they're not. #00:05:19-7#

Researcher: And how were you finding your colleagues in this kind of stage? Were they
doing the same thing as you? Or did you feel, like, different? #00:05:28-2#

P2: I guess I think if you're looking after the patient and you're aware, because I
remember the neurologists were quite adamant that he was awake and aware, but I guess
if you were in a bay you... Well, I know from patients' experiences they've talked about
where nurses have had conversations and, you know, they didn't realise that the patient
was awake and aware. So I guess it's about be mindful about what you're saying. Making
sure that the people around you, because the patient will look asleep and staff might just
assume that the patient is asleep. So I guess it's being mindful that, you know, like we do
with awake patients, or this patient's GCS fifteen, or, you know, obeying commands so
just be careful what you say. I guess we should be professional like that all the time, but
it doesn't happen, I know [laughs]. One of the previous patients that comes back with
GBS, talks about some conversations that he heard nurses have, which is a bit
unprofessional. But he laughs about it now, but at the time I guess it's really frustrating
for them that they're awake and aware and there's nothing they can do about it. It must be
horrible. So I guess we just, we should be more mindful. Just because someone looks
asleep, they might not necessarily be asleep. We should be professional, and we should
be talking to them like they're awake like you or I, I guess. #00:06:50-9#

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Researcher: And does your role working also in the Follow-Up Clinic, and seeing these
patients come back, has that altered you, your views on this, do you think? #00:06:58-
9#

P2: Definitely yeah. Yeah... Even not just GBS patients, but some patients that, you
know, these tube-tolerant, lightly sedated patients, they do remember a lot of stuff. So for
GBS patients that are, you know, awake and with it. They can recall conversations. I
remember the guy who comes back to give talks, he remembers conversations crystal
clear that nurses had. And the nurses remember having those conversations. So it's quite
interesting. Really interesting. So, yeah, it does change. It just makes you more mindful.
To just have the authority to, like, be assertive to others so that they're a bit mindful as
well. #00:07:42-1#

Researcher: And did you find that you had to be assertive? Kind of, like, almost role
model that kind of behaviour quite often? #00:07:49-1#

P2: Yeah, yeah. I think with junior members of staff as well, because they might not be,
might not know much about the condition. They'll just see someone that looks
unconscious. So it's definitely about educating staff. And, you know, handing over, or,
telling the people around you. I definitely think we could do that better. #00:08:12-4#

Researcher: And how would we do that better? Is that through better mentoring? Or is
that through at the bed space? #00:08:17-6#

P2: Yeah. Through education. At the bed space. Education. You know, we have a neuro
day, I'm not sure GBS is covered on the neuro day. Just like spinal. I do think there's
conditions that we see that we could treat, that the nursing care could be better. And I
think education plays a big part in that. I'm talking to the PDNs about spinal, so I think
some of our spinal management could be a lot better. Probably goes hand-in-hand with
GBS stuff as well. It's all the long-term patient stuff, sometimes the nursing care can be
better. #00:08:54-7#

Researcher: Well, that's the thing you, almost to jump ahead, you were talking about this
difficulty trying to get nurses to engage with these long-term patients, and these ones that
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are here for quite a while. And this is segway-ing away from that acute and more into that
rehab stage, how often are you finding, are you finding that quite often that nurses are
wanting to be allocated somewhere, or be with somebody... #00:09:16-6#

P2: Well, everybody wants the sickest patient, don't they? So, people don't want to look
after the long-term patients, the awake patients that become a little demanding because
they've lost that control I think. So there's, you know I think, the two main patient groups
we see are the long-term spinal patients and the GBS patients. And the long-term
ventilated patients. You know, people don't want to be looking after someone who has
been in an ACCU weeks and months. Because, I mean I find it really rewarding, but if
you asked a hundred nurses I'm sure the majority would say they would rather take the
sick patient, or, you know, the young trauma that's got lots of injuries. Which is a shame
because it's really rewarding looking after those patients. You know, even, like, giving
them a shower or, you know, putting their favourite TV programme on like massively
changes their day. So, I think they're quite rewarding to look after, but people don't see
them as particularly educational, or for furthering their development. #00:10:20-9#

Researcher: Do you think that's come because you've had a lot of experience in ITU,
sort of, move towards enjoying that more interaction? #00:10:31-4#

P2: I don't know... I think I've always kind of enjoyed looking after them. I'm not saying
that I want to look after that kind of patient every shift. And I know with some patients
you've kind of got a one shift limit with them. You don't mind looking after them like one
shift, but you don't want to go back to them the next day. Because they are quite, like, not
demanding. Well, they are demanding and they're difficult. They take a lot of your time.
And sometimes you do everything for this patient and they're still in pain, or they're still
uncomfortable. And you feel like you, could you have done more? Or you feel a bit
disheartened that they've not had a good day. They are, I think, they are a difficult patient
group. #00:11:10-7#

Researcher: And what are some of these demanding behaviour, or these challenging
behaviours? #00:11:16-1#

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P2: Pain is a big issue. Back pain. Isn't it? GBS patients have always got back pain and
never comfortable. They end up on poly-pharmacy of analgesics. Positioning, you know,
always want, you roll them and then they're not comfortable and you have to get people
together to roll them again, you know, and they kind of wear you down a little bit
sometimes. And sometimes you can have a really good day and they're, like, really
grateful. You wash their hair, and, you know, but some days you just feel like you just
can't win. And that, some days you just think 'I can't come back to this patient tomorrow
because I feel like...' It makes you feel bad because, you know, you can't make a bit, you
know, you can't make their day better, almost. #00:12:05-4#

Researcher: Is that your job, do you think, as a critical care nurse looking after a GBS
patient? #00:12:10-3#

P2: Yeah... Yeah. #00:12:13-7#

Researcher: So not just taking care of their nursing needs but somehow to improve their,
sort of, situation per day? #00:12:22-8#

P2: Yeah, I mean, to somehow to improve their psychological mood. You know, I'm all
about taking patients outside, or, I'm going to the helipad this afternoon with a long-term
patient. So there's definitely things that you can do to improve their day. And it makes
you feel better if your patient's a bit happier. They might engage in rehab more and, you
know, they don't want to just sit in bed watching TV, they're motivated to do stuff. So
that makes you feel good as well as make them feeling good, I think. #00:12:52-7#

Researcher: And so you talked about pain, and I guess, low mood, or depression, or
whatever you want to call it, or just lack of engagement. What other issues do you think
are quite demanding? So it's obviously stuff that's taking up your time and seems to be
bothering other nurses to get help and things like that? #00:13:14-4#

P2: I think they want to eat and drink, and they might not be able to eat and drink, and
that's frustrating. You know they can't do stuff for themselves. I think that loss of control,
that loss of independence, is a big thing. Having to get someone else to do something for
you. If they can't communicate then that's really frustrating for them. There's a whole
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heap of things and I guess they get, they get frustrated and low because they don't see an
end to that. Or they don't get better a little bit every day, it's a long process isn't it? So it
must just be feeling really frustrating. So I think at best we can just show a bit of empathy,
and just try and make things a bit better for them. Try and give them short-term goals.
You know, push them. Bit of, what's that... 'Cruel to be kind'. So I'm a bit like, you know,
some of these patients don't want a roll, and you just, you know, have to kind of be a bit
assertive and explain why they need to roll. Because if they get pressure sores they're
going to need to be in hospital a lot longer. That kind of thing. So you need to push these
patients. Not, just let them sit in bed watching TV all day. Not rolling for twelve hours.
You kind of need to provide the rationale of why you're doing stuff. Give them something
to look forward to. #00:14:44-1#

Researcher: So do you think, it seems like this is, sort of, the psychological management
of these patients, do you find it difficult managing the symptoms of GBS particularly?
Things like blood pressure management, or keeping pressure areas under control. All that
kind of stuff? #00:15:02-6#

P2: It's difficult, like, if they refuse to roll. You feel bad. You almost feel like you're
doing it against their will because where do you stand? It's like the spinal patients as well
isn't it? If they don't want to roll, do you roll them? Or do you… So you kind of need to,
just, take a bit of time and explain why you're doing it I think. And I think most of the
time in my experience they come around, but you know, sometimes it's the pain so it's
hard when you can't get on top of their pain. I think managing blood pressure and stuff
like that is fine. They don't really generally have too much cardiovascular problems. But
a lot of it is psychological. The physical stuff, I think, tends to be pain, and, you know,
sometimes the lack of weaning from the ventilator. And the slow weaning from the
ventilator can be really frustrating for them. It can be quite frustrating for us. You know,
like, you're trying to wean them and they seem to be doing quite well and then the next
day they are, like, really tired. You kind of feel like you've pushed them too hard. That's
a bit difficult. #00:16:12-5#

Researcher: Ok, and do you feel, like, quite alone trying to manage these things, in the
psychological, or are you getting support from other people on the unit? #00:16:21-9#

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P2: Yeah, I think the physios are good. And, you know, I would question, if the physios
were wanted to wean someone and I thought they were weaning too quickly, I'd question
that. I think the support is quite good on the unit. We've got the psychologist. So yeah, I
don't feel like I'm ever alone looking after them. The medical team are open to
suggestions, you know, if you say, like, the pain relief wasn't adequate I think they would
listen. But that might come with experience because I've been on the unit for a while. So
I think, like, a junior member of staff might struggle maybe. They might not have the
insight into the condition to know what to ask for... But, yeah... I think we've got quite a
lot of support. #00:17:14-0#

Researcher: And you said with your experience you sort of felt comfortable or felt able
to go in and advocate for you patient with these other teams... #00:17:24-0#

P2: Yeah. #00:17:28-1#

Researcher: How do you feel like as an objective outsider these teams would be if a
junior member of staff came up to them? #00:17:34-5#

P2: Um, they might not be very well received [laughs]. I mean, it depends, like, if I
personally, if I want, not want something, that's not the right way to saying it. Say if the
physios wanted this weaning plan and I couldn't stick to it because the patient was getting
tired, I would go to the physios and I would provide my rationale for why I wasn't able
to do that. I think if a junior member of staff was able to provide a rationale, I would hope
that was well received. Same with, like, going to the doctors for pain relief. I would say,
you know, 'I've done this, this, and this. I've given him that. They're still uncomfortable.
Maybe we should try this, because of x, y, and z'. I think as long as you can provide a
rationale, and some more junior members of staff might be confident to do that. It depends
on the individual. But I wouldn't, you know, if somebody was coming across problems
then they should be escalating that to more senior people. So if they're getting, if they're
asking for something because of this, and they're not getting it, then they should know
they can escalate that to nurses in charge, or more senior people, because it's down, down
to patient safety and the benefit of the patient at the end of the day isn't it? #00:18:57-7#

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Researcher: And you talked about the physios and medical team being quite good at,
sort of, caring for these patients, or being open to your suggestions about how to care for
these patients... #00:19:09-7#

P2: Yeah. #00:19:10-4#

Researcher: Where, what are your experiences of that? In terms of do you have examples
or what makes you say that? #00:19:17-4#

P2: Yeah, just in my experience I've been able, I guess because I've looked after these
patients for a while, I know, you know, most of the time they have pain so I'll be thinking,
you know, do we have enough pain relief? Different types of pain relief. Have we spoken
to the pain team? So I think the medical team are quite open to suggestions on that front.
The physios are quite good at listening to us I think. Even like psychology, I think I've
got quite a good relationship with [the ACCU clinical psychologist] because I work with
her in the clinic, but, you know, I'd be happy to go over to her and say 'is there anything
else that we can be doing for this patient?' So I think there it is quite well received from
the MDT... I think we look after these types of patients as a team quite well. I don't know.
#00:20:14-2#

Researcher: And... Do you have much to do, say, with the MDT long-term teams or
things like that? #00:20:20-9#

P2: Yeah, I've been to some of the long-term ward rounds which have [the ACCU clinical
psychologist] there, and will have a consultant, and will have physios, on a Thursday. So
I think everyone's considerations are taken on board with the next step for these patients.
So I do feel like we approach them with a good MDT approach. And it's never just the
doctors guiding things. I think the patient, and the nursing, and the physios' thoughts are
taken into consideration. I think we do that quite well. I think the way that they're
managed by everybody is quite good, as a whole. #00:21:02-6#

Researcher: And so you've talked about that you've had a lot of experience looking after
these patients. Where is this, is this the experience that's helping you to look after them,

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or do you, have you gained specific knowledge about GBS from courses, or have you
developed it on, sort of, on the job? #00:21:19-9#

P2: I used to work at the National, which is a neuro hospital. I didn't work on neurology,
I worked... but we didn't really have many GBS patients. But we had them in the medical
ITU. And then I've done the Neuro course, so we learnt about GBS in the neuro course.
And just from looking after them, and reading up on the condition and how we treat it,
and how it's caused. Especially with the recent patient who had it for the second time. So
that was quite interesting. So I was reading about that, and that's really rare. So, yeah, just
from being interested and, like, neurology and neurosurgery is my point of interest I
suppose, from my previous job. #00:22:06-0#

Researcher: And what sparked that interest in GBS do you think? #00:22:10-6#

P2: [Laughs] I don't know really. They are, it's interesting. It's an interesting condition. I
think neurology is a bit crazy with, like, Myasthenia gravis, GBS, all these crazy
neurological conditions. So it's interesting. It's just something that interests me. I don't
really know where it comes from [laughs]. But, I just think it's something that's, just...
Not really any fault of your own. It's just one of things that can happen to any of us I
suppose. It makes you feel a bit vulnerable. It could happen to you or me, I suppose. And
how would I feel in that position I suppose? And how would I want to be treated?
#00:22:56-7#

Researcher: Do you think that's at the forefront of your mind, or it's just sitting at the
back there any time you look after them? #00:23:02-3#

P2: I think it's quite at the forefront. I'm always thinking if this was me in this bed 'what
would I want?' Or, you know, like, 'how would I like want my day to go?' or 'how would
I want to be spoken to?' Yeah, I totally put myself in that position. Or a member of my
family. I think 'how would I want them...?' I do that with every patient really. You know,
that could be anyone, that's someone's mother, brother. You know, you need to put a bit
of a personal spin on it, or else you become really disconnected and you don't really, not
like I take my work home with me, but I think you can just switch off and be quite cold,
whereas you need to, I think you need to be thinking this could be me, or a member of
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my family. Do you know what I mean? I mean I don't know if that's just me, but I always
kind of make it personal... Treat people how you want to be treated. #00:23:55-7#

Researcher: Cool. And you talked again, just to go through this kind of this more rehab
phase, you talked about getting patients outside, and getting them engaged almost with
the world... What are you doing for that in terms of your processes? #00:24:16-1#

P2: So, like, what, how do you mean? Like, why do I do that? #00:24:21-1#

Researcher: Well, first of all, why do you do that? #00:24:23-0#

P2: I don't know. It just think it must be horrible to be stuck within the same four walls.
I think it would be 'I like being outside', or just a change of scene. Like, we see it in
patients all the time, like, there was a HDU patient a few months who was just really low
mood, not engaging, been in hospital for like six months. Got him up on the helipad and
he was like a different man the next day. And we see that, I see that all the time. The guy
that I'm taking up later, put him the shower last week, he didn't want to get out of the
bath, loved it. You know, it makes a massive difference getting people out of that bed,
out of that four walls that they're in. I think it's a massive thing for people to see that
there's life outside of that hospital room. And getting outside, seeing other people,
definitely think that's beneficial. #00:25:13-9#

Researcher: That's a nice sentiment, and then how do you achieve that? Do you just take
the initiative yourself, or are you building up to it with other team members? #00:25:23-
0#

P2: Yeah, I think it depends on the patient but you build up to it. You know, they need
to be able to... Well, we've taken people out on their beds haven't we? But generally they
need to be able sit in a chair for a while. You can't always assume that you're going to
have an anaesthetist, so you need to be happy with their airway. You've got a trache that's
been in a while so you're not too worried if it falls out you can't put it back in again. So
you do go through the safety aspects of it. Um, but then you just think you just need to
just crack on and do it sometimes. You know, you can fluff around. Like, who we've got
at the moment... You know, sometimes we make patients' too 'ITU-y' when they're, kind
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of, in the rehab phase. And if there were more beds available they might be in a rehab
place which might not necessarily have an anaesthetist for example. So, you know, you
make them a bit too 'ITU-y' and that stops you getting them outside, or taking them up to
the top floor. Do you know what I mean? It's like there's lots of barriers in the way
sometimes. So I think sometimes you need to be a little bit bolshie and put the spin on it
because sometimes people can be a bit cautious. And you never get the patient out. So
sometimes you just need to be a bit pushy, but safe. And, just, you know, try not to make
them too 'ITU-y'. Like, their rehab is going to make them come on leaps and bounds. So
you did hit a bit of resistance sometimes with getting these patients up and out.
#00:26:54-0#

Researcher: And what's empowering you to do that? Is that experience? Is that from
doing it a lot of other times? #00:27:00-9#

P2: Again, yeah. Like, thinking what I would want in that situation. So, I would want a
change of scene as much as possible. I would want my hair washed. I would want to have
a bath as much as possible [laughs]. You know, like when you're sick and you brush your
teeth, you feel so much better right? When you don't feel well and you have a shower,
you feel so much better. It's just doing things that make people feel better. And what
would I want? And you just see it. You see patients respond to it really well. Like, I've
never taken someone outside and they've hated it. They've never turned around and
they've hated it. They've never turned around and said 'I don't want to do that again. I
hated it'. They do. They like getting out and about. They can see that life goes on. Maybe
at some point down the line they will reintegrate back into society. Like, they see
something different to the walls that they're in. So it does make a difference. #00:27:55-
9#

Researcher: And do you feel you're alone doing this on the unit, or do you see lots of
other staff doing it? #00:28:02-4#

P2: I think recently in the last couple of years people have come around to it a lot more.
I think I can definitely see, like, when I first started here I remember one of the consultants
was all for it, and she used to write it in the day plan, in the old hospital, because we used
to have a garden and nobody would do it because they thought it was too much work, or,
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you know, something would happen... We had a nice little garden and no-one every got
took out there. So I do see it more now, and we don't even have a garden, but patients,
you know, we'll get them up to the helipad, or get them outside. I think the nurses quite
like getting out as well [laughs]. Go for a cigarette [laughs]. #00:28:43-5#

Researcher: Well, it does sound like a lot of work to get these patients outside.
#00:28:47-1#

P2: It doesn't have to be a lot of work. I do think sometimes people over-complicate it.
Do you know what I mean? I think because patients are sat in ITU, I do think people
think, you know, 'I've got to have this, this, and this'. And it's like they probably would
be in a rehab by now if there was unlimited rehab beds wouldn't they? We do try to make
them a bit too 'critical care-y' I think, sometimes. We do over-think it. We load them up
with loads of equipment that they don't really need. #00:29:17-1#

Researcher: So you could streamline it? #00:29:19-4#

P2: So less is more, less is more, yeah. So we do over-complicate it. We make it more
difficult than it needs to be. And we take loads of people. Sometimes we don't all those
people. So, keep it simple. #00:29:30-8#

Researcher: You think 'simple' would mean more of these kinds of activities?
#00:29:34-1#

P2: Yeah. I think, like, the shower hoist that [ACCU staff nurse] got. You take one look
at that thing and you're like 'oh my God, how am I going to get someone in there?!' It
looks like a lot of work, but once you actually do it it's not too bad. So I think if you get
more people doing it, like taking people outside, you get more people doing it and
realising it's not that bad. Then hopefully people will do it more. There's no reason why
some of these patients aren't going out all the time. And now they're building critical cares
with roof gardens, and piped gases and suction outside. So there's obviously benefit to
taking patients outside right? #00:30:09-6#

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Researcher: Yes. And that's sort of that, a lot of that's covered, sort of, that second
question there about, that talks about challenges, but you also mentioned earlier on about
some, these rewards and you've interspersed your whole conversation about how
rewarding these patients can be. Can you think of any other rewarding situations or
experiences you've had with these GBS patients? #00:30:34-1#

P2: Um, I think just seeing them progress really. Like, even if they don't make massive
progression every day, it's rewarding to see them make little things, you know, they're
doing longer off the ventilator, longer on CPAP, longer on trache mask. I think little, little
steps like that. And when they can start moving their arms and legs again, start eating and
drinking is a big thing. So, I think, just having short-term goals... Um, and that's obviously
good for them and their families. Yeah, it's difficult when they don't progress very
quickly, I think, everyone gets a bit frustrated. The patient and the staff. Because we do
have some patients that are here forever, and they don't really, takes them a long time
doesn't it? I think they're on a long path and you just need, not every day is going to be a
good day. #00:31:47-0#

Researcher: Cool. And that note we will end the interview. Thank you very much for
doing that. #00:31:54-6#

P2: Thank you. #00:31:59-1#

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Appendix 16: P3 Interview Transcript.

Researcher: OK. Starting with P3. Welcome. Um, just to get your social and
demographic data first. So, your job title and band please? #00:00:14-1#

P3: Band 5. And it'll be critical care nurse. #00:00:22-2#

Researcher: Wonderful. And length of experience working on the critical care unit?
#00:00:26-3#

P3: Six years. #00:00:27-8#

Researcher: Wonderful. Ok, so now, just to the questions for this, sort of, this
conversation. Could you tell me about your experiences of delivering nursing care for
adult patients with Guillain-Barré on the ACCU in the past year? #00:00:41-8#

P3: So, I've come across two patients that I've looked after Guillain-Barré, and they
would be sporadic. As in, it wasn't routinely that I would be allocated to those patients.
So it might be intermittent allocation. #00:01:06-2#

Researcher: Why do you think that was? #00:01:07-8#

P3: So there were nursing teams set up. But a lot of the time due to acuity or staff
shortages, these would be honoured only, probably in a, sort of, one-in-three basis I would
say. #00:01:27-9#

Researcher: Ok. #00:01:28-5#

P3: So, that would be due to patient location on the unit, requiring non-agency staff to
look after the patient, might be difficult, in terms of skill-mix in bays. The patient's I've
looked after have been a mixture of side rooms and bays. And... Ah... That would make
it challenging in a way that if you had a regular member of staff in a side room then they
may not be able to take part in certain activities such as teaching or, ah, supporting junior

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nurses by the bedside. So for that reason it's been sporadic. I wasn't named on the nursing
team. So, although I was aware of the patients that would be there for quite a long time.
#00:02:28-4#

Researcher: Ok. Do you think that was quite impactful, that, kind of, effect on
allocation? #00:02:35-2#

P3: Definitely... I think for the patient, primarily. But then secondarily, for if you're one
of the nurses coming in, the patients seemed to develop quite fixed routines and
preferences and activities that they might like to take part in. You might not be acutely
aware of what they may be. So you'd need a coaching through that during handover or by
the patient themselves. And I think that can be frustrating for the patient and for the nurse
because... Ah, I think they build up, I think routine is quite important to them. Just because
of the nature of the syndrome basically. So if you mess that up then it can be quite
frustrating for the patient. #00:03:34-2#

Researcher: And you talked about frustrating for you as the nurse as well. Why is that
frustrating? #00:03:40-0#

P3: Because you want to be doing, you want to be doing a decent job. You want to be
caring for the patient in the best possible way. So, for example, when it comes to, maybe
like, social media or something like that, I wasn't aware of the importance of social media
to this patient. And so, having to, you know, go through the log-ins and the, you know,
the time you need to spend doing that, was new to me. So, yeah. #00:04:07-2#

Researcher: Ok. Can you think of any other things that were, say, frustrating around
that? #00:04:13-8#

P3: Um, well, so you're not particularly sure of what films they might have watched
already, or what preferences they had in cases, I mean there were notes made about how
the patient would like to do these things. So, I suppose good communication between
yourself and the patient is essential in order to make the day run smoothly and to, you
know, have a good working relationship with that patient. I think that's easier in a side
room when you're, as in when you're just one-to-one with the patient because, you know,
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there's, um, you don't get distracted from you're job at hand. So, um, if you are in a bay,
then it's quite easy to leave the patient and get distracted with other jobs that are, so, that
don't require your close attention. You know, so even if it's discussing the patient next
door, or going to that patients, you know, the next patient a-long's bed space. While you're
doing that you're not with, you know, your allocated patient. So, if you're doubled with
another patient, then I suppose that can be quite frustrating for the GBS patient, because
you've not got their undivided attention. Especially when communication is at a premium.
So I've looked after patients where very subtle, very subtle communication, um, triggers,
you know, like raising of an eyebrow, or even a, you know, click of the noise, you know,
using the mouth or whatever. So that can be, that can go missed if you're in a bay.
Ironically. Because you'd think it would be more interesting for the patient to be
surrounded by lots of people. Where actually they probably getting less attention in that
environment. #00:06:04-9#

Researcher: So, can you think of other benefits, say, of side rooms versus bays?
#00:06:11-0#

P3: So, I mean obviously in a bay there's a lot more going on for the patient to be
observing, good or bad I suppose. So whether there is just activity, human interaction
between, you know, conversations that they can, you know, not necessarily be involved
in, but be, you know, aware of stuff going on around them. Say if there's an admission or
a discharge or something, then, you know, they could be watching. You know, it's
something. I know it sounds mundane, but actually if you're stuck in a bed all day then
that would be, you know, an event I suppose. Also if you're listening in to people
communicate with each other, then I suppose that keeps your brain going and, you know,
something that you might miss in day-to-day life which would be, you know, mundane
conversation. And if you're not getting that, and it's all directed at you, rather than around
you... #00:07:11-1#

Researcher: And do you think that's important for the GBS patient? This need to feel
involve or this need to connect back with the mundane? #00:07:18-3#

P3: Yeah! So where, I mean you have to try and make the hospital environment as close
to a... Take it away from the clinical, sort of, um, sterile environment that the hospital
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environment can be. And if you've got a white ceiling with one window, the same view,
where you might not be able to see the sky, or you might not be able to see people coming
and going, and, you know, then I think that is important. I mean the fine line between
having a, you know, nurses undivided attention in a side room, and having something
going on around, you can put, then again not having as much attention paid to you.
#00:08:05-2#

Researcher: It's kind of a catch-22 isn't it? #00:08:09-0#

P3: Yeah. #00:08:10-5#

Researcher: And how do you decide which is better? Or are you involved in those kind
of decisions? #00:08:16-6#

P3: No. But I think a lot of times it's down to bed pressures. Infections. If the patient has
developed an infection, and they require barrier-nursing that, you know, if they have
loose stools or whatever, then a side room is required then that takes the, I suppose that
would take the, ah, decision-making out of it. I mean at that point where you can turn
their space, their room into a more long-term patient environment where you might be
able to reposition the bed, get rid of equipment that may be really needed. You know,
getting entertainment systems, you know, radios, TVs, what are they called... [Points to
iPad in interview room]? #00:09:06-2#

Researcher: iPads? #00:09:08-8#

P3: iPads. That kind of stuff. Yeah, I would probably make it easier to turn it into a more
friendly environment for the patient if it was a side room. #00:09:21-3#

Researcher: Is that still achievable in a bay though? #00:09:24-6#

P3: It is. Although ITUs are very strange places full of strange nurses who like things the
way they are. You know, as in not quite 'hospital corners' but ordered, uniform kind of,
you know, trying to the patient look... I mean what is good is to get the patient into the
chair, to move the bed out of the way, to get them into a position where they might have
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a good view of the window or maybe, you know, set them up with a TV set-up or
something like that. And if not, then trips out. If staffing allows, then, you know, a trip
out of the unit, out of that bed space, and go off to outside. Down the corridor. Even if
it's just a trip around the unit. #00:10:17-3#

Researcher: And again, why do you think that's important? #00:10:19-6#

P3: Change of environment. To get your brain, you know, get your brain working. To
make you feel not so institutionalised I suppose. #00:10:31-9#

Researcher: And who's helping you to make that decision? #00:10:35-4#

P3: So this would be, this should be nurse-led. It should also be promoted by the nurse-
in-charge and facilitated as a priority. So to free up a runner, or to get the nurse-in-charge
themselves to come and give a hand. Because it is definitely, for safety issues, would be
a two man job. Particularly if the patient is on a ventilator. #00:11:00-1#

Researcher: Is that your experience that it has been a priority? #00:11:03-1#

P3: No. So, the unit that we're talking about is an exceptionally busy unit with, which
may often be short of staff, and, and so facilitating nurses breaks would probably be
prioritised above, above, ah, you know, trips out or... I mean it should really be counted
into the numbers as what's required I suppose. Particularly if a long-term patient is on the
unit. So, although they may be low-acuity, the number of staff required to look after
effectively is actually probably higher than a normal HDU setting. #00:11:48-9#

Researcher: Ok. And just to go back over some of the stuff you've said. So, you were
talking about communication and the nuances of communicating that you've found. How
were you, is this something that you were told about? How did you learn about these
nuances? Is it just through experience that you learnt to develop this? #00:12:07-3#

P3: Yeah, well every patient is different obviously. But they do tend to build the same,
they come to the same conclusions quite a lot of the time. Maybe tapping, clicking noises.
I mean when, when the communication methods are as subtle as a look or an eye-brow
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raise, then it's really important that you're there to see them. Especially if the patient sees
something as being important, whether it's, you know... Well it could be anything. You
know, there's stories of people coming in, turn the TV off when it's night-time, or this
nurse has decided that it's night-time, but the patient hasn't actually finished watching the
telly or something. They've just come in, turned it off, turned the lights down. Then
actually getting your point across if you can't communicate effectively is, could be
extremely frustrating... I imagine. #00:13:09-8#

Researcher: And does that come into it, imagining what it's like? Does that affect how
you care for... #00:13:14-5#

P3: Yeah. I mean you can't really put yourself in that situation unless you been in that. I
mean you can't mentally picture what it's going to be like to be in that situation. Because
you've had all of your, um, not liberties, but you've had all of your, a lot of your choice
making taken away from you. Whether that's to do with routine or your health, you know,
requirement at the time. Making decisions can be, the smaller decisions become more
important I suppose. #00:13:47-3#

Researcher: And how do you as a nurse deal with that? That deprivation of choices?
#00:13:54-9#

P3: Um... I mean that's quite a deep question I suppose. Where, um, I suppose that's down
to individual nurses. I mean, personally, I feel heartbroken for the patient that they're in
that situation. And because they do become quite challenging to look after in certain ways
in that they grasp onto small decisions, you know, as in, whether it's having pillows
placed in a particularly way, or this, you know, how long they might want to spend on
social media, or on, you know, listening to a certain record. You know, whatever, I
suppose it becomes really important to them and I don't think we put enough importance,
enough impetus on the patient to make these decisions, you know. So I suppose
empowering the patient is what your role would be, I suppose, in that situation. Giving
choices and listening to those choices. Whether it's, you think the patient should be going
out for a trip and the patient doesn't want to. You know, then do you put your, you know
the patient is going to benefit from this, but do you then push it with the patient, that they
should be getting out if they're saying that they don't want to, you know? #00:15:31-5#
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Researcher: It becomes quite tricky doesn't it? #00:15:33-8#

P3: Because you don't want to put your, you don't want to put your... I can't think of the
word... Agenda on the patient. #00:15:50-3#

Researcher: And that's I think, that is the tricky thing isn't it? You said you were very
aware that they hold on to their, or their big decision making has been taken away and so
they're very aware of their small decisions and they grasp onto them. And then you've got
to counteract it with delivering nursing care that might actually go against what they're
wanting to do with their day. #00:16:10-5#

P3: Exactly! Yeah. So, I mean Guillain-Barré patients are very, as in they're a specific
type of patient to care for. So where they're not just the depressed patient in the bed who
doesn't want to be touched. You need to be collaborative in their recovery because it's not
necessarily so that they're not going to get better from this, it's that they're different from,
you know, spinal injured patients who can't necessarily feel what's going on below a
certain level, and can, would have maybe a very negative outlook on the future. Whereas
Guillain-Barré patients are rehab-able, you know? And it's important that you get them
motivated and working with you in that. So I think although obviously it's still a very
difficult time for them thinking about the future and how much they're going to recover
and everything, but I think if you put the importance on, get them to engage with the
importance of rehab and recovery and activities and keeping their brain active. And
preventing them going into this deep funk. Then, you know, I think keeping them
involved can prevent that. #00:17:40-2#

Researcher: So you spoke about challenges and that sounds like a big challenge, is just
trying to find that balance, keeping them involved, but then balancing their, their
decision-making versus what's needed for them. Can you think of other challenges that
maybe you've come across? #00:18:01-4#

P3: Um... So availability of, say, equipment, whether that's communication tools. At the
time when they're ventilated, you know, something that's quite user friendly. Availability
of things such as wheelchairs which may not be routinely available on the unit and that
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might not be suitable for a trip outside for safety reasons. For example, like, one that may
not have arms on it. You know, you might be able to slide them off the bed, put them
onto the chair and get them into a good position, but it's not a suitable chair to be taking
them further than fifteen feet. Because they're at risk of sliding off that, but you can't strap
them in because that would be restricting the patient's movement. So, yeah... Equipment
would be a big thing. Even things that, you know, once they do get use of their hands,
you know, big handled cutlery, or a big handled pen, or something they could use to,
cups, things like that. #00:19:23-4#

Researcher: That would come under, sort of, the OT prerogative. Do you have much to
do with these members of the MDT themselves, such as the OTs, or the physios or
anything? #00:19:34-8#

P3: No. They're few and far between. I think they're under a lot of pressures in the Trust
and maybe the acute, we don't see them on the acute unit too much I suppose. Maybe
they're more involved in discharge planning and home care. And so, obviously early
referral would be preferable in getting them engaged early. #00:20:03-3#

Researcher: And how would you utilise that more as a nurse, sort of having this more
early, sort of, referral to them and their involvement? #00:20:12-7#

P3: I suppose having the equipment ready when you're going to need it, rather than once
you need it making the referral and then having to wait. So if you've got a patient who
you know is going to be long-term on the unit and will be ready for more intensive rehab
activities, then early referral would enable a smoother transition into the next stage of
care I suppose. #00:20:40-2#

Researcher: And how do you know that, or how do you suspect a patient would be for
long-term care on the unit? #00:20:45-7#

P3: I suppose if they're slow weaning off the ventilator, they might be trached. You know,
they might be showing muscle degradation which would give you an inkling into, you
know, maybe... Strictures on their limb movement. Once they're developing these kind
of symptoms, um, it will be clear, I suppose, that they're going to be there for a period of
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time. And rather than it being in the acute phase bit... #00:21:21-6#

Researcher: Have you had much with, say, the long-care, long-term care team on the
unit? #00:21:29-1#

P3: So, yes. I was involved with a long-term care team for a patient. However that would
be, as you mean in the named teams for a patient? Nursing teams? #00:21:44-3#

Researcher: No. There's that, on the unit, there's an overall long-term team that organises
a lot of this stuff, and talks about all long-term patients once a week. And I was wondering
if you had anything to do with them? #00:21:55-6#

P3: No I didn't have anything to do with that. I was aware that it existed. #00:21:58-9#

Researcher: You are aware of it? #00:22:00-0#

P3: Yeah. Yeah. #00:22:01-7#

Researcher: Cool. And, well, to go back in and touch on more that stuff you said about
that it's quite heart-breaking to look after these patients, but then you've also known that
they potentially can get better compared to, say, the person with a spinal injury. Where is
that; how is that still heart-breaking? Or why is that heart-breaking for you? #00:22:23-
7#

P3: Well, I mean these patients have been living a full life, you know, sporting activities,
you know, having thriving personal lives, you know, social lives, and then to have this
happen to them quite suddenly, and have a devastating effect on their health and
wellbeing, and put a question on when they're going to get better. Then, I suppose, that's
just as sad as say someone who has, you know, been involved in a major accident. I
suppose the difference is that it can, you may have a quicker recovery with, if you've just
broken bones, or, you know, pelvic injury or something like that. You should hopefully
be able to develop movement as and when, you do early mobilisation for that. But where
these patients may be having trouble with hypo-ventilation and, um, have to connected
to a ventilator for quite a lot longer than these patients, then I suppose long-term patient,
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caring for patients with long-term conditions can be very challenging in that respect. To
keep up the motivation on both sides. #00:23:47-4#

Researcher: So the nursing and the patient? #00:23:48-2#

P3: Nursing and the patient, yeah. And I think if one of those wanes, then the other will
go quickly as well. So keeping the patient motivated, I mean, having a patient that knows
what they want and when is probably better than having someone who is completely
withdrawn. So, you know, that can be with nurses as well. So if you allocate the wrong
nurse, so to speak, to a patient, who may, the nurse may have an agenda for that day that
might be different to the patient they're caring for. That can have a knock-on effect for
the following day shift as well. Or the following shift. #00:24:28-8#

Researcher: And how do you keep up that motivation for firstly the patient and then
yourself if you feel like its waning? Do you have any tricks? #00:24:36-7#

P3: I suppose with me I like talking to the patient a lot, getting them involved, having a
bit of a... You know, building up a relationship with the patient where you can gain trust.
Gain the patient's trust. I suppose if you're showing willing, then hopefully the patient
will respond to that. #00:25:09-6#

Researcher: And that seems to work for the patient, but what about for you? How do
you keep getting motivated to come to this situation? #00:25:16-2#

P3: Ah... So this is where, I mean I suppose if you're building a relationship with a patient
and you've got their best interests at heart, then that comes naturally... Um, where I
suppose if you've got a good working with that patient then you can kick off from where
you were the last time you met them. The last time you cared for them. If the patient is
quite withdrawn that's where it becomes quite challenging because they've heard your
techniques before and then, you know, they might just not be engaged in taking part.
#00:25:56-3#

Researcher: And that's where it almost links back to your intermittent allocation to these
patients... #00:26:03-2#
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P3: Yeah. #00:26:03-5#

Researcher: And where it becomes very hard. And these long-term teams seem to work
quite well... #00:26:08-3#

P3: Yeah. Exactly. And I think keeping, coming up with a plan, and the long-term care
team would come up with a plan of maybe having them in a particular room, that had a
particularly good view, or that would could get rid of, you know, decant equipment that's
not needed out of there, to make it into a more user-friendly environment for the patient
and the nurse. That's beneficial. And I suppose coming up with a plan of, you know, the
routine that they like during that day, where there's a, you know, a day planner, you know,
going through what times they'd like to do certain activities. They maybe, you know, they
might not want a wash before they go to bed at night, they might want it in the morning.
All of this kind of malarkey. So that is important for the patient and the nurse, isn't it?
And it does give better idea of how to care for these patients. #00:27:02-8#

Researcher: And where are you getting this knowledge on how to care for these patients?
Have you done training on it? Have you done readings? How have you sort of developed
it? #00:27:11-9#

P3: No, I've developed it over time, just experience I suppose. There is no specific
training on how to care for these long-term patients in place. There is discussions on how
we should be making the rooms more user-friendly. However... When you get to the point
where you only have a certain amount of side rooms in a unit that can be used, then having
a particular bed set up in a, I don't know, double side room or, where you might need, can
be quite challenging... So, patients’ movements around a unit aren't always guaranteed.
Does that make sense? #00:28:00-0#

Researcher: It does. And what would you recommend then to, is it only to gain
experience through looking after these patients? Do you think we should have courses or,
do you reckon there should be formalised training? #00:28:12-7#

P3: Definitely. #00:28:13-8#
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Researcher: Should there be mentorship? #00:28:15-0#

P3: Yeah. I think there should be formalised training. Just as there is respiratory study
days, cardiac study days, renal study days. Looking at different systems. There should be
how to care for long-term patients... And, you know, how to get in touch with services...
And maybe get the OTs to come down and talk to us about what challenges they have.
And what services are available, and what they can provide, and at what point. Getting
the physios to discuss, you know, ventilator weaning plans, and getting the nurses more
involved in that. Um, maybe having a long-term care link nurse in each team, that'd be
an idea. So, they are available. You know, they have the expert knowledge, always
someone on your shift with expert knowledge on how best to care for that patient... Yeah,
or maybe even having a stockpile of useful equipment. Spending some of the donation
money that, you know, some of the money that's available in the unit on patient long-
term equipment. #00:29:29-1#

Researcher: And how do you think that would, firstly, benefit the patient, say doing
some of these things, and improving education, and improving availability of resources?
And things like that. #00:29:38-6#

P3: I think having more consistent nursing staff. So where it might be that once, you
know, you're not in a patient's long-term care team, but you're still on board with how to
care for these patients. And maybe what resources are available to you if you're not, you
know, some communication tools and such things. Um, yeah... #00:30:06-3#

Researcher: Cool. And just lastly, can you think of anything rewarding that you've found
in your experience looking after these patients? #00:30:13-7#

P3: Definitely. You're on a journey with this patient, and seeing them improve to the
point where they are making discernible advances in their recovery is rewarding for the
nurse and for the patient, obviously as well as the patient. So, being part of that journey
with them is a special things. It's one of the great things about being a nurse. #00:30:42-
0#

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Researcher: Wonderful. Well, that's time already. Thank you very much for your time.
#00:30:48-7#

P3: De nada [laughs]. #00:30:50-2#

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Appendix 17: P4 Interview Transcript.

Researcher: So, starting P4 interview. Can I get your job title and band please?
#00:00:08-2#

P4: Sister. Band 6. #00:00:11-1#

Researcher: Wonderful. And how long have you worked on this ACCU? #00:00:13-3#

P4: Four years. #00:00:14-7#

Researcher: Cool. #00:00:15-7#

P4: Over four years. #00:00:17-3#

Researcher: So, this is just to start the, with the opening question. Can you tell me about
your experiences with delivering nursing care to adult patients with Guillain-Barré on the
ACCU in the past year please? #00:00:27-9#

P4: So, I've just looked after only one person and it was very, very exhausting. Basically
[laughs]. I think, yeah, you see it's very difficult to explain because, actually, if you look
at them, I just look at him when he was, kind of, awake, right? So he could communicate,
as in, like, he could say the words. So you, you know, you're supposed to read from the
lips, but I just felt, like, really frustrated. Because I couldn't get what he was saying. Oh
my goodness. And, um, yeah, basically it was, it was always a long day because that shift.
It was kind of like, you know, he was asking very simple questions like 'change my
position', 'do this' and 'do that'. But it was, like, it always takes ages with this kind of
patient. And it's frustrating for both sides. Like, for him, because, you know, people can't
understand him. And for me as well because there is no, really, communication between,
between the two of us. And this is so important. And actually, um, I remember, I think,
one day I just got to the point where I was, like, 'listen, I'm not really sure if you realise
but you are really hard work'. And it's like 'we're trying to do our best'. Like, you know?
And it's kind of like 'well, it's not like we don't want to, we don't want to understand what

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you're saying, but we just can't. You know, there's like three people around me'. And it's
like 'we can't get what you're saying'. So, this, like, alphabet and everything, sometimes
you just got lost. You just got to the, like, third letter and forgot what was the first one.
And for him it was like 'oh my God! Why can't you get what I am saying?' Or when he
was spelling, I think another is I'm, I'm not, you know, I'm not English, so it was kind of
like he was spelling something, and then he spelt something wrong. And I'm, kind of, like
'am I, am I going crazy?' I was like 'this is not that word'. Because half way through you
kind of, like, you can guess what he is trying to say, right? And I was, like, 'ok. So it's not
that word. And we're not going that direction right?' So it was really, really frustrating...
I'm not sure what you're asking for? Is it, um...? Tell me more about this question? As in,
like, how was it for me? So when I saw my name on the board and I was like 'oh my
goodness. It's going to be a long day. It's going to be really frustrating. Like, you know,
I'd be very frustrated at the end of the day. And hopefully he is going to be in a good
mood. I think that would make a difference as well, I think... And you need to be so
patient. And I don't think I am patient enough. You know, I'm kind of like 'ok. Right. All
right then'. And for you, it's like if you think about it, it doesn't really matter if you're leg
is, like, you know, five centimetres to the right or to the left, right? Because it's ok,
pressure relief, blah, blah, blah. Everything has been done. It is perfect. But for him, I can
imagine he was in pain, and he was in, like, you know, in bed for how like how many
months right? So, everything was important. And I was, like, 'how many times can you
change, like, in day, the hands' position, and, you know, do this and everything?' It's, it's
really hard. Its hard work I would say. #00:03:48-0#

Researcher: Cool. I mean, that's a great start. So, you, let's just go right through all that
kind of stuff... #00:03:53-2#

P4: Well, there's a lot of things to think of you know. #00:03:56-3#

Researcher: Well, you spoke at first about it's really challenging... #00:04:01-7#

P4: It is. #00:04:02-1#

Researcher: And can you talk more about, like, say, the emotional, or is it nursing care
challenges? Is it difficultly managing the GBS patient in terms of their symptoms? Or is
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it just a lot of that emotional, exhausting, personal care? #00:04:18-6#

P4: No, it's everything. I think it is a combination of everything. Because you think about
yourself, right, and, um, yeah, if you're patient enough you can just do it all over again,
like, you know, ever, like, two hours. But then you get to the point when you're exhausted.
Right? And you just get fed-up. And he can see that. And sometimes, you know, people,
what they used to do, they would just, kind of ignored him. When he was trying to say
something. And it was kind of like they ignored because, I don't know, they were, like,
exhausted. Because they did, like, they tried to do something, but there's like, there's not
that much you can do for these kind of people. Because there's, they're like, ok, they're
not comfortable because of the symptoms. So they're on painkillers and this kind of stuff.
So, for this, like you know, no I don't know. What devices you can use? Pillows. Like, I
don't know, those funny, like you know, cushions, and those kind of stuff. It's like there's
not that much we can do for him, you know? We can change the position. But then you
change the position and it's, it’s ok for five minutes. And then he's not comfortable again.
Why is he not comfortable? Is he in pain or it's just in his head he's like that? Or he just
wants, like you know, I don't know. That's, that's very difficult. And that is like
communication. When he couldn't speak. It’s like, 'ok, he wants to tell us something'. 'Ok,
well you're not comfortable. Ok, so what's wrong?' And he, sometimes we got to the point
'I don't know what's wrong with me. Just leave me alone'. You know, I think that it is
frustrating. Because you try to do your best and you fail. Because so many, like you know,
so many reasons. #00:05:59-1#

Researcher: And how do you deal with that? #00:06:01-7#

P4: Well, I try to be honest. As in 'listen, that's what I can do for you. You know, you're
not comfortable. I can give you painkillers if it's pain. We can change the position and
we can try this and that', but I was just at a point where I was, like, 'ok, fine. I've done
everything that I could. What do you want me to do? Do you have any ideas?' And he
was like 'oh yeah, you can do this and that. Or, like, no. Just leave me alone'. And I was
like 'ok'. Maybe sometimes you, like, you know, I need kind of like instructions, like,
'Ok, do you want to watch the telly or something?' Kind of like distracting him from the
situation where he is at the moment. Or like talk something. Talk about normal life as in,
like, 'oh yeah, by the way there was something...' you know. Something different than
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he's seen for a long time. Because he has been in the same room for, like, how many
months? Long enough... To be bored and, you know, fed-up, I think. I think. I personally
find it really challenging. And I did say to him 'listen, it's not like I don't want to help
you, but I'm struggling, you know? And you need to know that. And I'm trying everything
what I can really'. #00:07:16-5#

Researcher: What about your colleagues in this? Were you getting support? Were you
noticing they were dealing with it differently? Or were they also in the same boat as you?
#00:07:26-7#

P4: Sometimes it was really annoying because, you know, if you think about it, he was
in the bay, and he is sick. This kind of patient, they are very sick. But if you compare
them to the other ITU patients, right, um, they are sicker. Or maybe. They are maybe,
you know, they need more attention, and then, time, and it's like, yeah, basically attention.
And if you're really busy, they will just call you, it's like 'can you give us a hand?' and I
was like 'well, I'm in the middle of doing something' 'Yeah, but it can wait'. Right. 'Well,
you think that can wait, but my patient is not happy, is in pain. I actually am busy. I can't
help'. You know? And some of them, they're like really good. 'Ok, Ok, that's fine'. But
after a while everyone is like 'Ok, so what have you been doing?' You know? 'Just come
and give us a hand!' So, I think, I think it depends. #00:08:20-7#

Researcher: And what's that depending? Do you think that's like maybe they've not
looked after these kind of patients? Or they don't have the knowledge about what these
patients are like, that's causing that frustration? Or is it just like their own work load is so
high that they just can't see outside their own box? #00:08:35-3#

P4: Sometimes yeah. Sometimes it's just we're very short of staff and you're kind of, like,
'enough!' And, ok, I was like 'Sorry, I'm really sorry. We've just got a new admission.
Can I just come back to you because I just need to give them a hand?' And you know, I
think, it was one situation when he told me, and it was like he was asking me about me
about something and they just called me, and I was like 'ah, I'm really sorry. I'm doing
something because [the patient] asked me to do something' and he said to me 'go and help
them, I can wait'. #00:09:07-6#

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Researcher: So he could see that you were conflicted in what to do? #00:09:11-2#

P4: Yeah, yeah, yeah. And I was like 'thank you, I'll be back as soon as I can' you know,
and he was like 'yeah, yeah, yeah, they are really busy right?', and I was like 'yeah, kind
of. They've got a new admission'. And he was like 'yeah, I can wait'... So that was... yeah,
but again, he was maybe in a good mood and this kind of stuff. But sometimes, like, you
know, he'd ask for painkillers and, obviously, getting the keys just takes ages. So, he was
like 'where are my painkillers?!' You know, I'm kind of like, 'I'm really sorry, I'm trying
to get the keys. But obviously, you know, you need two people to do that, and it's like,
you know, it's break time, blah, blah, blah'. And he got really, really frustrated. Which, I
don't blame him, you know, but this is what it is. It's, like, really difficult. This kind of
thing. It's, like, really difficult, time consuming. Whatever he wants to do. And he didn't
really ask about, like, very special things, like you know. I don't know. Brush my teeth
or something. Really normal stuff. Basic, basic nursing care. But you just, sometimes you
don't have time, you know? #00:10:15-4#

Researcher: And where could you create more time do you think? Would it mean more
people helping you? Would it be, you said it took ages to get the keys to get out, sort of,
controlled medications, and things like that. I mean, could there be things that could be
streamlined to increase that? Or equipment that could be more readily available to enable
you to do things like brushing your teeth and rolls and things? #00:10:40-8#

P4: Yeah, maybe. I think, when he was in a side room. I think it was just too much
because it was twelve hours, just one face, you know, and you just, I don't know, you just
get bored. Again. When you're in a bay you've got more interactions, but then you don't
really have that much time for him because they always ask you to help them. Or they
just expect you to help. I'm kind of like 'I'm really sorry, you know, this is my patient. He
needs me now'. Yeah, well, I don't know. The thing is it's really difficult... Maybe physio.
I'm not sure they were, like, involved, like you know, enough. As in, because they provide
enough splints and this kind of stuff. I don't really know... I think it would be nice to see
a face like 'ok, the plan for today is this and that. So what kind of position do you like?
Like, I don't, I don't know... They'll probably, I think there's like... It's really, really hard
[laughs]. #00:11:47-4#

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Researcher: Well, there's two things there. To start with you were talking about side
rooms’ verses bays... #00:11:54-4#

P4: Yeah. Because this is what I can compare to, you know? #00:11:57-8#

Researcher: And what was your experience? You talked a little bit about the differences
between bays and side rooms. What were your experiences? Did you enjoy one more than
the other? Do you recommend one more than the other for this patient group? #00:12:10-
8#

P4: Well, when you're in a side room you've got more time. Because it's just, you know,
just you and the patient, right? But then like I said, he is, like... There would be just ward
round and maybe someone to come relieve you. If you needed to change the position you
struggled to get the people. Right? And, um, I think he, I think it was, like, really boring
for him being in a side room because you can't see the other people that often. And you've
just got, can you imagine? He doesn't like the nurse and he's going to stay with them for,
like, 12 hours. I would be like 'oh my God!' You know? I just noticed people ignored
him. And that was like, I just hated that. #00:13:04-7#

Researcher: Do you think he noticed? #00:13:06-0#

P4: Yeah! And it was like 'oh my God!' It's like, you know, I think it's better to say to
him, like, 'listen, I'm really trying, but I just can't understand what you're trying to say'.
And not just ignore him and not say anything, because that must be horrible. Because,
you know, you'd just think, like, 'ok, you're with me and you're supposed to look after
me, but you're not doing anything'. And it was like you couldn't even see that they'd make
an effort to do something, you know? That must be terrible for the person because it's
like why would you think this? Yeah. So I think once you're in the bay you've got, like,
more people and there's always someone who's got, you know, pops in and says 'hi, how
are you doing?'. And, yeah, even if you start your day with a really, really low mood or,
like you know, you think 'oh my goodness. It's going to be a really bad day', but then
someone comes along and just chats to you and brightens your day up. As in, like you
know, can just change a little bit. Or maybe, I don't know, distract you. There is something
going on, you know, I don't know, good or bad, you know, an admission or someone, like
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you know, so you're kind of like 'oh, ok, so actually you know, I'm in a very bad position.
I'm in this bed, but, you know, the guy next to me is, I think, is very sick'. You know?
This kind of thinking. It's really hard to say from the patient point-of-view, but I think
from my point-of-view as the nurse looking after, I feel more comfortable because I could
always say, like 'you know what, I'm really sorry. I just can't get what you're saying but
I will ask the nurse like you know, the other nurse who is working with me to, I don't
know, maybe she will get it' you know? #00:14:50-1#

Researcher: So in that bay you'd have that access to, or a bit more support? #00:14:53-
1#

P4: Yeah. And there is like, if you're one-to-one, it's so much pressure. I just feel like 'oh
my goodness. If I don't get it, he will just get madder with me'. And it would be like,
terrible, you know, for the rest of my day, you know? But then once I was in a bay and I
was like 'ok, fine. So listen, I tried and the other person tried and we can't get it. I'm really
sorry. Could we try in like, you know, the other way? Or what can we do, like, or just,
you know, can you just give us a break for five minutes and we will come back to you
again'. #00:15:22-9#

Researcher: Cool. I mean it is, it does sound tricky. And whether there is a right answer
or not, can we be sure? No-one really knows. #00:15:33-4#

P4: Yeah. #00:15:34-5#

Researcher: But it's just, sort of, there's positives and negatives to both it seems. The
other thing you were talking about were physios and maybe they could be a bit more
involved. What has been your experience of other members of the MDT in these kind of
patient cares or these patient management? In terms of the OTs, physios, um, the medical
team, the long-term care team? All that kind of stuff? #00:16:01-9#

P4: Um... I'm just thinking about... I think our doctors, consultants, they were pretty good.
They're like every day, you know, there's not that much change in these kind of patients,
like every day, you know? But they were always like, always try to see some, like you
know, something. As in 'oh you learnt Spanish yesterday. How did it go?' Something
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positive. And it was like 'oh you've got, like, you know, a new picture on the wall or
something'. That, that I think, it was really good. Because that makes you think, like you
know, 'I'm here, for like three or four months, but they still care about me'. It's not like
'Ok, no changes. Just continue the care because this is what we've been doing really'. So
unless they've change something, as in pain management and this kind of stuff. But
actually I think that just gives you a, I don't know, you can always say something like
'I'm not comfortable. These painkillers don't really work for me. You know, can we just
do something else?' And they were like always for him. The doctors. Physios... I don't
know... Physios, there were not more, I think, I just had the feeling that it is everything
on our shoulders. As in they were like 'Ok, so we've provided the splints, you have to use
it, you know...' Like they, they gave us instructions but I haven't seen them that often at
the bed space to be honest. But maybe it was just me, you know? OT, I don't know. The
same. Obviously [the long-term care team nurse leader], and, you know, I think that was
a good idea, I think that was a good thing. To just create a group who actually, like, look
after him. So it was kind of like they you know what he likes, and obviously, you know
all of his habits and this kind of stuff. But, that's another thing. They did discuss with him
actually 'do you like this person? And do you feel comfortable around this person?'
Because if you allocate randomly just thinking 'yeah, they just get along very well' and
actually he hated the person. I don't really know how it works... And I think that, you
know, letting the patient know he should be involved in his care. As in, like, someone
going and asking him like 'listen, this is what we are trying to do. What do you think we
can improve? Do you have any suggestions? What do you like? What don't you like?
What can we do to make your life happier? #00:18:49-7#

Researcher: And what do you think that does by including the patient? #00:18:52-2#

P4: Um... what did we do? #00:18:57-0#

Researcher: No. Why do you think it is important? #00:18:59-5#

P4: Because it's about him, right? We are for him. As in like, sometimes some devices
don't really work, or, you know, that worked for one person but not for you. So it's kind
of like, I don't know, but I think we should just need to ask him. Because it is about him
right? Yeah, so I think [the long-term care team nurse leader] did a good job. #00:19:22-
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9#

Researcher: And did you have much to do with, say, other visiting teams, like the pain
team, or the neurologists, or anyone else involved with this patient group? #00:19:31-4#

P4: I don't have, I don't really have that much experience because I haven't seen a pain
team. #00:19:39-4#

Researcher: Ok. #00:19:40-2#

P4: I don't know. Actually hold on a minute. I think, yeah, they were trying to provide
some, um... Devices or something, and this is what he said to me 'oh this lady, she got so
excited because there's going to be, it's like a perfect solution for me' and I was like 'what?
So how did it go? Did it work for you?' And he was like 'not really'. And I was kind of
like 'did you tell her?' And he said 'oh no!' I was like 'why not? We need to know that!'
You know, if we think, and that's another thing, if we think it's going to work for him,
then we need to ask him. I don't know if this lady came back and asked him how was it?
Did you like it? And obviously he was trying to be nice and saying 'yeah, that was cool'
but actually it wasn't... So, that's another thing. #00:20:27-1#

Researcher: Would you get that often where the patient would almost confide the truth
in you having maybe been polite to other people or to other colleagues? #00:20:38-4#

P4: Yeah, I think so. Because you're trying, you know, you can see that they try to do
something for you, you know, they make an effort and you're kind of like, you know, you
think you're going to be rude saying like 'no, I'm really sorry. I didn't work for me'. But
actually this is what it is. We just want the truth because otherwise we won't be able to
help you. We may just find another solution, or another device, or another brilliant idea.
But you just need to be honest. But I don't blame him because it's kind of like, you know,
if you see that person five minutes, you know, every Sunday, then there's kind of
relationship. There's no trust. And you don't, you don't really know how that person is
going to react. You know, maybe she is going to be like 'oh my goodness, I've spent, I
don't know, twelve hours searching for this machine and you don't really like it?!' So,
yeah. But if he would communicate that with us nurses, I would be like 'ok, yeah, he said
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to you that it was fine, but he said to me actually that it wasn't that great'. You know, I
think it's us in a team. And I think if you're in twelve hours with someone you do get this
connection. Really. So you can tell like honestly 'do you like it or not?' #00:21:59-4#

Researcher: And did that put you in an awkward position having to tell other
professional that actual truth almost? Did you feel like you were the bearer of bad news
then? #00:22:09-5#

P4: No. I, actually, I think he was nodding as like 'yeah, yeah, yeah'. And I was like 'what
are you saying? You said to me you were not enjoying it, right?' And she was like 'oh,
did you not?' And she was really sweet because she was like 'oh, I'm really, really sorry.
We tried' and everything. So, yeah. I think, I don't know... At the end of the day, it's kind
of like 'we are here to help you'. And whatever I need to say I will do it. #00:22:35-8#

Researcher: So he came to realise that through your relationship with him? #00:22:42-
2#

P4: Yeah. #00:22:43-0#

Researcher: Was that from the get-go or was it like you said that you develop it over
these twelve hour shifts? That he, sort of, develops this trust in you? #00:22:51-8#

P4: I think you need to be honest, like I said. I was very honest with him at the very
beginning. I didn't say 'I was trying to'. Like 'Ok, let's do this, let's do that'. But then I got
to the point where I was like 'listen, I am just only a human being, you know?' And, um,
yeah, I got frustrated as well. I was like 'well, you are not happy because of something.
But look at me, I'm trying. You know, for two hours getting you in the right position, and
I just can't do it. I just don't know what else I can do?' And he goes 'oh, hang on a minute'.
Actually, I think I did say to him 'listen, you are hard work. You know that?' And he goes,
like 'no. Why?' And I was like 'well, imagine, we can't communicate. This is so difficult.
I know, I know, you've been here for a long time. But listen, people actually, I think...'
This was really bad, but I think I did say 'people are refusing or requesting not to go back
to you because you've been horrible to them'. And it was kind of like, he was swearing
and everything at them. And I was like 'we don't need that. Everyone is here to help you.
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And we try to do our bests, you know?' Unless, you know, I do understand some of the
nurses I know were like sleeping, they were like ignoring him and this kind of stuff. 'If
you've got a good reason to be upset, I do understand. But you're upset with me and I'm
trying so hard. I've been like, changing the pillows every five minutes, like because it was
too flat, too fluffy, and this kind of stuff'... You know? And I was like 'I can't do it
anymore!' And he was like 'ok. Fine'. And he even said 'sorry' or something. And this
kind of stuff, then you think about it. What you did. And how you behaved towards
someone. And then I was like 'ok. Fine'. And the next time I was like 'I will try to do it,
but let's see how it works', you know? And he was like 'Ok, are you going to do it again
and pretend that I'm comfortable?' And I was like 'no. I'm going to do it again and then if
you're not comfortable, we can push you back on the back' or something. But I was always
honest. As in 'but then you need to give me a break. Because it is too much. And he was
like 'ok. Fine'. #00:25:18-6#

Researcher: And you talked about other people refusing to look after this patient, or
these patients in general, what were you hearing about that? Was it just anecdotal or were
you hearing specific instances where people were requesting? #00:25:31-8#

P4: Ok, maybe not refusing and not requesting to go back to him, but you know,
sometimes on breaks or something people were like 'oh my goodness, he's not in a good
mood. Today has been a nightmare. I can't do anything to please him'. And this kind of
stuff. And I think it was just the frustration... Of, 'oh my God. Such hard work!' You
know? That's what I was saying. It depends, he was in pain. He had, like you know,
maybe a bad day. He was in a really low mood. And you just maybe don't have that
connection with the patient. Or you're just scared to say what you really think. And you
try to do your best. And it's like, you know, he got you really frustrated. You got really
frustrated. And it was kind of like 'I can't do it anymore. I need a break'. You know? Or
it just got to the point where you're not trying that hard, you know? And it's kind of like
'I will just do the minimum. I will just roll him every four hours because he did swear at
me' for example. Right? Yeah, I think it was really hard. It was really hard. #00:26:40-
4#

Researcher: And where did you learn these skills on how to deal with this kind of
behaviour or have this resilience to this to this kind of behaviour? Have you had courses
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or have you studied GBS or anything like that? #00:26:54-9#

P4: No. I think it was just my experience... I know GBS is different, but it's like, you
know, the nursing care is very similar to spinal patients. You get the same reactions, the
frustrations and this kind of stuff. Obviously these are different diagnosis and like, you
know, that. But yeah, so I think previous experience and, obviously, every single patient
is like, you know, different. So you just need to find the way really. I think
communication is the key. Find some way you can communicate. And it's kind of like
'ok, I'm telling you this' and you will get, I don't know, nodding or like [makes clicking
sound with mouth]. Which is really difficult, like I said previously. But yeah, and I think
you just need to be honest with the patient all the time. If you try to pretend that won't
work. Then they can see that they can trust you. #00:28:01-5#

Researcher: And were there any rewarding experiences in this, kind of, caring for these
patients? #00:28:10-8#

P4: Yeah, of course, you know? I don't know... When they say thank you. Or I brought
him like, you know, I don't know, it was a coke. He was moaning that he wanted a coke.
And he was like 'oh my goodness. You brought me a coke. Thank you so much. It means
a lot to me'. And I was like 'ok, come on. It's just, you know, a coke'. And he was like
'yeah, I know. But for me this is a coke. I haven't been drinking this for like, I don't know,
five, five months'. And I was like 'well, did you like it?' And he was like 'ugh, it was too
sweet!' And I was like 'ok, you ruined everything, but that's ok' [laughs]. But this kind of
stuff. You know? They're just so, so grateful I think for little things... And you just don't
even realise that sometimes, I don't know, just you can get a picture, or like, you know,
their favourite food and they will be like grateful forever. #00:29:09-5#

Researcher: And what makes you do those steps, like say bringing in, say, a coke for a
patient like that? #00:29:15-8#

P4: [Laughs] I don't know [laughs]... I think it’s something to do with personality... How
much you can give to the patient, you know? Sometimes you would just go to the limits,
like 'ok, fine' and that. You just do it. I don't know? #00:29:47-9#

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Researcher: Do you see everyone doing that kind of stuff? #00:29:50-1#

P4: Do I see what sorry? #00:29:51-6#

Researcher: Do you see everyone doing, or other nurses doing that kind of thing?
#00:29:55-2#

P4: Not, not everybody. Really. But, it's again, I would just go with personality. You
know? And it's really difficult to say. You just, that's the same question like 'why do you
choose to be a nurse?' That's the same one. I don't know? Because I wanted to help people.
And it's like, yeah I just wanted to help him because, you know, I could do it. Like, I
couldn't, I couldn't fix his problem. I couldn't like, you know, do this and do that. But if
he asked me like 'could you bring this' and I was like 'yeah. Of course'. Because that is
what I can do... To make you feel better. If that would make you feel better, to make you
happier, then I will do it'. Why not? #00:30:39-9#

Researcher: And do you feel that's your job as a nurse or just as a person to do that? To
try and make them feel better outside of general nursing cares? To try do these little things
during the day, or outside of your day? #00:30:54-7#

P4: I think it's because they're, I don't know, it's the person. But then again, I'm a nurse
and I'm dealing with these people so they look at me as a nurse, but I think it's more to
do with personality. I really, I am. And I would do it. Like you know, if I am on a street
and I see like, you know, a guy begging for money, I would just him a sandwich. But you
would say I am doing this because I am a nurse and I'm trying to help him? Or because I
am a good person? No. There is a, she is doing this, I don't know, maybe she is a good
person. But now I am in a hospital and they see me, I think, like you know, as a nurse. I
would say both. #00:31:42-8#

Researcher: I think that's a fair answer. Um, and that's time already. So we'll wrap it up
now. So, thank you very much for taking your time to share your experiences. #00:31:54-
0#

P4: You're very welcome. Good luck. #00:31:56-5#
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Researcher: Thank you. #00:31:57-2#

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Appendix 18: P5 Interview Transcript.

Researcher: Ok, to start the interview with P5. Can I just get your job title and band
please? #00:00:07-8#

P5: Charge nurse. And band 6. #00:00:11-5#

Researcher: And how long have you worked on this ACCU? #00:00:14-7#

P5: More than three and a half years. #00:00:15-5#

Researcher: Wonderful. Ok, into the questions now. Can you tell me about your
experiences of delivering nursing care to adult patients with Guillain-Barré on the ACCU
in the past year please? #00:00:27-8#

P5: Well, to be honest I haven't worked much with them because it isn't a usual disease
on our unit, but I remember taking care of a guy for a couple of shifts. At least. I saw him
at the beginning when he came in to us. From the time he was intubated, even before he
was trached. So, these days, first days, were more easy, easy, way easier to work, to look
after him. Patient intubated, patient doesn't complain, don't usually complain because he
is sedated. He is on, he was on the ventilator. So it’s, the care he received was carrying
on the general care we can offer our, to every single patient. But everything got a little
bit more challenging after a few times, when he was, well, he was trached. And he was,
the time after he was extubated, he stayed with us for a few months. When problems
started appearing, kind of, the patient started with complaining about quite a lot of pain,
being in pain. Patient, breathing wasn't much difficulty for him. He was breathing quite
well. But I think the worst thing was for him pain. Was a young guy, probably even...?
Kind of feeling that he was getting stressed. He was looked after by young, young people.
Being not 'useless' but he couldn't do much on his own. So I think he was getting quite
stressed too. So the most challenging activity with him was mobilising. He was getting
quite, he was in quite a lot of pain. So getting painkillers was sometimes difficult as we
can't, we need to get the CD keys. Sometimes it takes longer, not as soon as he'd like to
get his painkillers. And then as his joints and muscles and everything, he was

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deteriorating. So yeah, he was quite stiff, difficult to mobilise. Sometimes complaining
he didn't want to be turned. I think this was quite a stressful limit for him. Or when the
times he had to be changed, so cleaned because, well, he was opening bowels. So, young
person, being impossible to do on his own. So, he wasn't quite happy, not happy, but he
was getting stressed. Because he needed to be rolled. He was in pain. We need to clean
his bottom. Young people, young person, so I think he, after the month he was admitted
here, he was quite, quite stressed. He was quite stressed through all of these kind of cares.
What else? #00:04:13-7#

Researcher: Ok. No, that's great. So, let's just go through that because that's a lot of good
information there. And you sort of talked about the way that this patient progressed along
this journey from when he first came in, when he was intubated, sedated, you almost felt
like he was a normal ITU patient... #00:04:32-5#

P5: Yeah. #00:04:33-5#

Researcher: Where you are treating him with the stock-standard sedated patient kind of
care grouping things, or care bundles. We'll start there and then move on to when, as you
said, he became a bit more, say, challenging as he became more awake and, sort of, more
interactive. So at the beginning there, what were you doing for him as a stock-standard
ITU patient? In terms, you said, he was nice and not challenging then almost? #00:05:03-
3#

P5: Sorry, you say at the beginning? #00:05:06-0#

Researcher: In that initial, when he first came in. What were you doing for him then?
#00:05:10-2#

P5: Well, we were doing for him standard care. So he was on the ventilator, so normal
stuff. Ventilator care bundles. So, always, so he was on the ventilator. Receiving normal
care from the ventilator. So secretion-wise, or changing the HME or taking care of his
mouth cares. Parts of the ventilator, ventilator care bundle. So to avoid ventilator-
acquired pneumonia. Then I think he never had much, much, I don't remember having
problems with his breathing or because of the, I think, I can't remember if he got a
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ventilator-acquired pneumonia. I think he didn't acquire ventilator-acquired pneumonia,
but I can't remember now. It was more than a year ago probably... So, basically sedation-
wise, he was under sedation for sure. But I think more the problem it was on the...
changing his positions. It was the most challenging for him while even on the ventilator.
Quite stiff. Deteriorating. More difficult even to control his, his pain. #00:06:55-6#

Researcher: That's alright. So why was that at the first stage not very challenging? You
know, when they're almost like the normal ITU patient almost? #00:07:04-8#

P5: Yeah. So a sedated patient we can't do much with the, the patient. So, we are doing
our best. We are doing general cares. We don't focus much on the person, we focus on
the body. Just looking after his numbers. So we don't, we don't interact much with the
person. So the patient is intubated, not responding much to us. Just taking care of his vital
signs, but not much else the person. #00:07:41-6#

Researcher: And so as he became, say, more long-term, or became more awake off
sedation, progressing along, tracheotomised, he became more challenging? #00:07:54-
5#

P5: He became more challenging for, one side he became more challenging. He was a
young person so I think he was getting stressed being in a bed. Because his body was
deteriorating but his mind was clean. So it was ok. So he knew what was happening but
he wasn't able to help us, even at all. So the way that he was behaving, he was getting
scared or worried about how the disease was going to develop, or it was going to get
worse, was going to get better. So I think for a time he was a quite challenging guy
because of that. Because, probably he thought he was going to be disabled for the rest of
life. But there was a time he was feeling more comfortable with us. Interacting much,
much better. So his body was quite deteriorated for a while, but he, he was more friendly,
he was getting more friendly with the staff. Even trying to learn from the Spanish people.
Um, always making jokes. Trying to take it easily or getting more involved, even with
the team. There was a time after that, that at the beginning not much people wanted to
work with him because it was quite challenging. But then I think he was quite pleasant
and a quite, quite friendly person. So everyone, there was a love, and quite a lot of people
wanted to work with him because it was more easy to take care of him. #00:09:53-7#
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Researcher: So he became easier to take care of as he began to interact more and, sort
of, develop more this relationship? Why was it challenging, do you think, why was it
challenging when he was in that initial stage where there wasn't this relationship? Is it
that you feel sympathy for him? Or are you, is his behaviour so challenging? Is it just the
workload? What's going on? #00:10:16-2#

P5: I think, probably it was because of that. So, young guy in a bed, without moving,
probably getting worried about what's going to happen with him. Was he going to be in
a wheelchair, or even in a bed, for the rest of his life? I think it was a quite worrying stuff
for a young person. So I think he was a, kind of... How can I say? Um... Ok, I will tell
you so. It was this kind of self-defence. It's not because of the care he was receiving. It
was because he wasn't accepting, or it was going to be quite difficult for him to accept
that his, this disease, probably could be there forever. He was, he was going to be
dependent on another person, another carer, for the rest of his life. Being a young person,
that is not 'normal', the 'normal' life for a young person. #00:11:37-6#

Researcher: And how as a nurse are you dealing with that? #00:11:41-6#

P5: I think it's difficult. So, it's difficult for every single nurse... We like to, we like every
single patient to be happy, to be calm, to be pleased, and not complaining, but it's
impossible. Almost impossible. You as a nurse are trying to give your best, but every
single patient reacts in a different way. So, and when, I think, when there is that young
person who can be disabled for the rest of their life I think it is more issue, a more
stressing, it's more stressing, yeah. #00:12:27-9#

Researcher: Ok. And do you... How are you approaching dealing with that stress, or
handling that stress? Were you talking to colleagues, were you getting support from
people? #00:12:41-7#

P5: For myself? #00:12:44-1#

Researcher: Yeah. #00:12:44-7#

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P5: I think I don't need it. So for me, I'm quite a strong person. I don't need to, just, I can
get home, I can talk to my partner how the day was, but I don't need that extra support
from another, from another team, or from external person to get better. So the things that
happen at the hospital, is at the hospital. So I don't think I am going to get to any problems
at home, and I'm not going to, I need home to left on my own. #00:13:22-0#

Researcher: Ok. And how were you looking after this patient in terms of your experience
with them? Were you getting knowledge from books, or did you learn on the job? How
were you learning to look after, or how did you know how to look after this patient? The
GBS patient? #00:13:39-8#

P5: Well, the GBS patient I remember from previous experience. I used to work in a
neurology ward in Spain. So I remember looking after guys that had Guillain-Barré, or
even with Multiple sclerosis. So I used to work with these kinds of patients. So, basically
from my previous experience as a nurse, away. Then I met a young guy in Spain in his
twenties, he developed Guillain-Barré. He developed it when he was in his twenties. I
knew people from years ago. And then, yeah, kind of some personal reading that you can
do in your own time. Yeah. #00:14:36-1#

Researcher: So you were relying on that previous experience in this role here? Were you
getting any help from the unit? Or were there teachings or anything like that? #00:14:47-
4#

P5: Not really. Not really. I think there is basic stuff. On the unit, there are basic stuff.
For cardiac, neuro, respiratory, but when you want to, to develop your career, when you
want to learn a little bit more, you need to do on your own. There is no special, special
training for this kind of stuff. We have general training, but not specific training. There
is, so there is the neuro ITU course, but it's not available for everyone. There's a few
places there per season, per year. So, you want to learn, you have to do on your own.
#00:15:32-8#

Researcher: And were you... Passing on your knowledge to other colleagues? To, you
know, your experiences of previous GBS patients in this case, or in these cases? Or were
there interactions between the nurses about how to look after this patient? #00:15:52-2#
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P5: Um... As every single patient, with every single colleague, it's always good to share
your knowledge. If someone is not aware of even this situation, or every single, or another
different disease, I think it's good to share what you know so that other people can be
more involved. Or can understand better every single disease. Yeah. #00:16:20-2#

Researcher: And how were your interactions with other members of the MDT? So, the
doctors, physios, occupational therapists, all that kind of stuff, in this patient group?
#00:16:30-6#

P5: With these specific patients... I can't remember much if how much people were
involved, how many people were involved with this specific patient. But I think... They
need more, more attention than what they have. So I think physios with these kind of
patients, physios should be quite important to be involved. I think they don't spend as
much time as they should with this kind of patient. This kind of patient is going to
deteriorate. His muscles are going to deteriorate. His muscles, his joints, are going to
deteriorate quite a lot. I think we should give him more attention. For example, on the
physio-wise. So, occupational therapy I think... I have never seen one on our unit for three
and a half years. I think I have never seen it. I've seen them on other units where patients
are going to be discharged. But as our patients are not going to be discharged home, I
think they are not coming out. So, I think this patient needs to be discharged to another
place, to the ward, or to another hospital, and then they will be involved. I've never seen
an occupational therapist in here. #00:18:15-6#

Researcher: And what would happen if there was one here? Do you think it would be
useful? #00:18:19-6#

P5: Probably. For sure. Because this patient is going to need quite a lot of attention at
home. Probably he is going to need care. Or he is going to need full-time care. It depends
on the disability he gets when going home. But, yeah the person who deals with his needs
when at home in his daily life, daily activities. For sure. Where he is sleeping. What
support he is going to need. #00:18:56-0#

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Researcher: And how is that impacting on your job as the nurse, not having, say, the
physio there as much as you want, or not having the OTs there as much as you, or not
having the OTs show up at all? Does that increase your workload? Does it change the
way you look after this patient? #00:19:09-5#

P5: I think what it is going to get is more stress on us. Because we are twenty four hour
time with the patient at his bed space. We are doing things that we shouldn't, that we don't
have to do because of our role. So the patient, for example, his muscles, his joints, his
muscular is going to deteriorate quite a lot. The patient is getting in pain, the patient is
getting stressed. So the patient needs, I think, more physio input. So, finally it's going to
impact on our tasks. Or what we are doing every day. It's going to, to increase the stress
the patient is getting. It's going to be back to the nurses, they are the ones who are twenty
four hours by the patient. #00:20:13-6#

Researcher: And how about the medical team? Were you having much to do with them?
#00:20:17-7#

P5: The medical team can be. When the patient is a new patient, they are going to be
more involved. They are going to be keeping an eye on him closely. But then when a
patient has been here for twenty, thirty, fifty days, they're just coming around asking how
he is. They're not going to spend much more time. It's a busy place also. They don't see
this patient as, they see this patient here as a chronic, or long-term patient with us, they're
going to spend, probably, less time visiting him than a 'sicker' or a new patient. Yeah, I
think they’re going to spend less time with him than they should do. Yeah. #00:21:08-
3#

Researcher: What does that do to you as the nurse in that bed space? How does that
impact you, the medical team showing less time or attention? #00:21:16-9#

P5: So, yeah it is going to impact on the nurse. They are the ones who are twenty four
hours, twenty four hours by the patient. Yeah. The patient is going to, when the patient
has been here longer, the patient is going to be more demanding, and the person who is
going to be by him is the nurse. No. Not other teams. So, you are going to impart a higher
work on us. Even, not work load. Work load and stress on us. Yeah, because the patient
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is going to be more demanding. And sometimes you can't, you can't deal with everything
what the patient would need. Would need. #00:21:56-9#

Researcher: That leads nicely into, so we were earlier talking about that acute phase
when they first come, sedated, ventilated, and as they moved along that spectrum of
getting better, more long-term, more chronic. You talked a lot about the challenges such
as pain and, say, ventilation. Can you talk a bit more about that? What were the specific
challenges? Or were there specific good parts as well about looking after that long-term
chronic patient stage? You talked about it was quite rewarding once the relationship built
up, were there other instances of that? Or were there more challenges you can imagine,
you can think of? #00:22:31-7#

P5: Say again sorry? #00:22:33-0#

Researcher: Were the more instances or experiences that were rewarding, say that nice
relationship? Or were there more challenges such as pain management and rolls and
muscle degradation and things like that, that you can think of? #00:22:46-8#

P5: I don't understand what you are asking me now? [Laughs]. #00:22:49-0#

Researcher: What were the rewards and challenges? #00:22:52-3#

P5: The rewards? Ah, the rewards! I think, so this was a young person so the good thing
at least is that there was a time he was happier, he was feeling better with us. So, I
remember looking after him or helping just with some basic care, we can make fun. We
can tell jokes, or making fun of where he was from. There was a time that it was more
pleasant to work with him. So, yeah, this is nice because, even, he was involved in trying
to, to learn some, some Spanish. So, it is more rewarding than, it was a time that he was
happier, and he was friendly. He was as he is. So, he was acting as the person he probably
is, or he was. So, young person who wants to get far, have good relationship with, with
others. So this was a time that it was quite, quite rewarding with working by him, or just
helping other nurses to look after him, or to do some basic care on him. So, or for
example, when we used to prepare him to go for travel. For travel, for a journey?
#00:24:18-8#
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Researcher: For a journey? Or a trip? #00:24:20-6#

P5: For a trip. Not travel. Travel is to travel. Yeah, when we were preparing him for a
trip. Putting him in the wheelchair, going around, showing him different places. Even just
going to the corridor where he can see from the window was quite, he was quite happy
with just this kind of stuff. So, yeah he was happier. People who were looking after him
were happier too. I think the environment around him was better. #00:25:02-3#

Researcher: Why do you think that was a better circumstance for him? Was it the ability
to interact with other people? That was improved so therefore he was in a better mood?
#00:25:12-4#

P5: Yeah. I think it was everything? Mood. Yeah, mood... Yeah, probably he understood
that the care he was receiving could be even a better level of care because if you are
interacting, if you are not challenging people, these people are going to look after you
better. Not that they are going to look after you better, but the level of care you are going
to receive is going to be better. But they are going to be happier to talk to you, to share
information... Or just... Even personal feelings. It's going to be a more friendly
relationship than just being there in a bed, 'I'm going to look after you. It's time to change
your position. I don't want to know anything about you'. So if you are interacting with
the team, with us, it's going to be a better relationship. And even you're going to be more
loved than being a dick. So yeah, there was a time he was quite a funny person, friendly.
We were trying to always get a nice smile from him. #00:26:38-1#

Researcher: And did you have, so you talked a bit about going for trips, how was that?
Did you have experience taking him out for trips? #00:26:47-3#

P5: I don't remember if it was him. I've been involved with other ones, but I can't
remember if I prepared him once for a trip. But I know he went for a few trips out of the
unit. I think he went once even... I think he went once even on the bed downstairs. I think
he went even once to A&E, to the A&E entrance on the bed. #00:27:21-7#

Researcher: Ok. #00:27:22-5#
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P5: Yeah. I think it is quite good for him. It's not always to be in a room, with quite a lot
of noise, distressing stuff, people, noisy. So I think these kind of new experiences are
good for every long-term patient in the unit. We used to, it is true that we used to do with,
with different people, we tried to do these kind of trips. I think they are quite nice for this
patient. They are going to be here for long. But, and probably they can feel even better.
They can feel that, they can understand that we are trying to do different things. We are
trying to do our best. And we try for them to get better experiences. #00:28:15-0#

Researcher: And you talk about these long-term patients, do you have much to do with
the long-term care team around him? #00:28:20-8#

P5: Long-term? #00:28:22-1#

Researcher: The long-term nursing care team, or the care team, sorry. #00:28:24-5#

P5: The teams that we are... #00:28:26-4#

Researcher: The ones that you are on that only look after specific patients. And there
this is also, on the unit, there's an overall long-term team that look at all long-term
patients. #00:28:35-2#

P5: Well, yeah. I think this is a good idea. So, you know the patient. You know everything
he likes, what he dislike. So you can be more focused on what this patient needs, what
this patient really enjoys. You can get a better understanding of why he's here. What his
feelings are. So I think a care group for this kind of long-term patient are quite good.
#00:29:09-4#

Researcher: What about the overall unit ones, about the ones that also involve the
physiotherapists, and the doctors, OTs, that all talk together once a week? Did you have
anything to do with them? #00:29:21-5#

P5: To do, one week to see him? #00:29:24-4#

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Researcher: You know, every Thursday the ACCU has a long-term care team that talks
about them. Did you have anything to do with them? #00:29:32-3#

P5: No. No. I know there are the meetings, they have long-term meeting, and then co-
ordinator, the senior sister co-ordinator used to send us a plan, or just a review of what is
new, or what the plan is? #00:29:50-4#

Researcher: And how did you find having that kind of plan sent to you? #00:29:55-1#

P5: Yeah, well, I think it is alright as you can probably start thinking what his next step
is. Or if they've been trying to deal with some patient’s needs. Yeah, I think they're quite
nice. #00:30:18-2#

Researcher: Ok. And just lastly, just to talk about. You talked a lot about the challenges
of trying to manage his pain. How were you getting on top of it? How were you meeting
that challenge of managing his pain? #00:30:36-3#

P5: I think, so it's quite important for them. We have the painkiller for sure, but then
having a good environment. Some stuff to do. Always with this kind of patient can have
kind of distractions; TV, radio. I think he used to have an iPad from the unit. So a TV,
something to do, not to always focus on the pain. Some kind of distraction as I told you.
TV, or iPad, radio, instead of just medication, medication, medication. Something, that
even just have a chat with him. So he's not always focused on the disease. And then,
position management. So this patient is for long in a bed. Laying in a bed, so it's quite
important probably. So, air mattress that he was on for sure. But then good position
changes. Often, probably more often than normal. Always asking him if he has, kind of,
a special posture to, or any pain in a specific joint or part of his body. Always we try to
relieve this kind of pain. Physical pain just with a position, positioning, re-positioning
him as much as he needs for example. #00:32:13-1#

Researcher: Was that taking a significant amount of your time up trying to position him
right? #00:32:17-1#

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P5: Yeah. Because sometimes it is difficult to get even people. He used to be at the
beginning in a side room, and then he was moved to a bay. On a bay it is easier to get
people, to get staff. In a side room, it's time. You don't depend on you, so you depend on
others. So if this patient is getting stressed because of the pain or whatever, it can take
you fifteen, twenty, thirty minutes, one hour time to get enough people to reposition the
patient. It's quite distressing for him, and even for us. On a bay it's a little bit easier, but
even with this kind of patient you're going to need two extra staff, and it's not always easy
to take them around. So, yeah... So, sometimes it is time. Sometimes it's staff. #00:33:11-
2#

Researcher: Wonderful. That's already time there. So, thank you for your time to speak
with me. Yeah, that's wonderful. #00:33:18-2#

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Appendix 19: The framework method: Step One – Researcher familiarisation with
data record.

Participant: P1. P2. P3. P4. P5.
Conduct √ √ √ √ √
interview.
Listen to √ √ √ √ √
recording of
interview.
Transcribe √ √ √ √ √
interview.
Re-listen to √ √ √ √ √
recording of
interview.
Check √ √ √ √ √
transcript for
accuracy.
Re-listen to √ √ √ √ √
recording of
interview.
Re-read √ √ √ √ √
transcript.
Re-listen to √ √ √ √ √
recording of
interview.
Re-read √ √ √ √ √
transcript.
Re-listen to √ √ √ √ √
recording of
interview.
Re-read √ √ √ √ √
transcript.
Key ideas √ √ √ √ √
listed.
Re-listen to √ √ √ √ √
recording of
interview.
Re-read √ √ √ √ √
transcript.
Add √ √ √ √ √
additional
key ideas to
list.

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Appendix 20: The framework method: Step One – Key ideas.

Deductive:

Challenges.
Factors impacting care delivery.
Complex nursing care needs.
Emotionally challenging.
Knowledgeable and experienced nurses.

Inductive:

Equipment.
Rarity.
Uncertain recovery.
Therapeutic relationship.
Communication.
Empowerment.
Side rooms vs. bays.
Continuity of care.
MDT relationships.
Staffing.
Rewards.
Nursing attitudes.
Treatment implementation.
Patient behaviour.
Empathy.
Engagement.

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Appendix 21: The framework method: Step Two – Index of in-vivo codes.

1. The relationship between nurses and patient.
2. The impact of routine on the relationship between nurse and patient.
3. Trust in the relationship between nurse and patient.
4. The importance of empowering the patient.
5. Reward for nurses seeing progress in patient recovery.
6. Empathy for patient.
7. Impact of patients’ behaviour.
8. Impact of empathy on nursing care delivery.
9. Impact of patient engagement with nursing cares.
10. Meeting social support needs of the patient.
11. Feelings of frustration when communication efforts fail.
12. Impact of MDT on nursing care delivery.
13. Engaging with members of the MDT.
14. Desire for more MDT involvement.
15. Colleagues not recognising nurse workload.
16. Difficulty accessing colleague support for cares.
17. Impact of staffing on nursing care delivery.
18. Impact of ACCU environment on nursing care delivery.
19. Feelings of isolation for patient and nurse in a side room.
20. Turning bed space into user-friendly environment.
21. Impact of exposure to other patients in bay.
22. Decision-making process between placement of patient in side room or bay.
23. Awareness of own and colleagues nursing practice.
24. Impact of long-term care teams on patient care delivery.
25. Communicating with colleagues.
26. The difficulties of communication between patient and staff.
27. Senior nurses’ role modelling nursing care delivery to junior staff nurses.
28. Nurses’ previous experience with patient group guiding current practice.
29. No formalized training around patient group available on ACCU.
30. Lack of available equipment on ACCU hindering patient rehabilitation.
31. Patients’ worries about their illness.
32. Nurses’ interests in their own professional development.
33. Nurses’ attempts to improve patient experience.
34. Treating patient group as a long-term patient.
35. Recognising the aware patient.
36. The complex workload involved in meeting patients’ nursing care needs.
37. Lack of patient engagement with cares.
38. Anxiety about allocation to patient.
39. Frustration with aspects of nursing care delivery.
40. Re-integrating patient into ‘normal’ life.
41. Rarity of GBS patients on ACCU.
42. Recovery is slow and difficult to predict.
43. Patients’ feeling loss of control.
44. Patients’ reaction to nursing care.
45. Experiences taking patient off of the ACCU.
46. Managing patient pain concerns.
47. Providing aspects of holistic care.

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48. Meeting care needs is time-consuming.
49. Managing multiple aspects of nursing care.
50. The failure of communication tools.

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Appendix 22: The framework method: Step three – Numbered codes deduced
from in-vivo codes.

1. Recognition of the aware patient.

2. Barriers and effectiveness in communication.

3. Empowering the patient.

4. Empathy.

5. The psychological needs of the patient.

6. Rewarding.

7. Nurses views of the long-term patient.

8. Complex nursing care needs of the patient.

9. Delivering extra-ordinary cares.

10. The source of knowledge.

11. Experience in practice.

12. Acuity in the environment.

13. Layout of the environment.

14. Issues with equipment.

15. Multidisciplinary working.

16. Availability of long-term care teams.

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Appendix 23: The framework method: Step Three - Extract of coding: P3
interview transcript.

P3: So, I mean obviously in a bay there's a lot more going on for the patient to be Codes
observing, good or bad I suppose. So whether there is just activity, human interaction
1, 2, 3,
between, you know, conversations that they can, you know, not necessarily be involved 4, 5, 7,
in, but be, you know, aware of stuff going on around them. Say if there's an admission or 11, 12,
13.
a discharge or something, then, you know, they could be watching. You know, it's
something. I know it sounds mundane, but actually if you're stuck in a bed all day then
that would be, you know, an event I suppose. Also if you're listening in to people
communicate with each other, then I suppose that keeps your brain going and, you know,
something that you might miss in day-to-day life which would be, you know, mundane
conversation. And if you're not getting that, and it's all directed at you, rather than around
you... #00:07:11-1#

Researcher: And do you think that's important for the GBS patient? This need to feel
involve or this need to connect back with the mundane? #00:07:18-3#

P3: Yeah! So where, I mean you have to try and make the hospital environment as close Codes
to a... Take it away from the clinical, sort of, um, sterile environment that the hospital
1, 3, 4,
environment can be. And if you've got a white ceiling with one window, the same view, 5, 7, 8,
where you might not be able to see the sky, or you might not be able to see people coming 9, 11,
12, 16.
and going, and, you know, then I think that is important. I mean the fine line between
having a, you know, nurses undivided attention in a side room, and having something
going on around, you can put, then again not having as much attention paid to you.
#00:08:05-2#

Researcher: It's kind of a catch-22 isn't it? #00:08:09-0#

P3: Yeah. #00:08:10-5#

Researcher: And how do you decide which is better? Or are you involved in those kind
of decisions? #00:08:16-6#

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P3: No. But I think a lot of times it's down to bed pressures. Infections. If the patient has
developed an infection, and they require barrier-nursing that, you know, if they have
loose stools or whatever, then a side room is required then that takes the, I suppose that
Codes
would take the, ah, decision-making out of it. I mean at that point where you can turn
their space, their room into a more long-term patient environment where you might be 1, 3, 4,
5, 8, 9,
able to reposition the bed, get rid of equipment that may be really needed. You know, 11, 12,
getting entertainment systems, you know, radios, TVs, what are they called... [Points to 13, 14,
16.
iPad in interview room]? #00:09:06-2#

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Appendix 24: The framework method: Step Four – Example of arranging data to
appropriate section of thematic framework.

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Appendix 25: The framework method: Step Four – Themes and categories.

Themes. Categories.

Recognition of the aware patient.
The aware patient.
Barriers and effectiveness in
communication
Empowering the patient.

Empathy.
The psychological aspects of recovery
from GBS. The psychological needs of the patient.

Rewarding.

Nurses views of the long-term patient.
The long-term aware patient.
Complex nursing care needs of the
patient.
Delivering extra-ordinary cares.

The source of knowledge.
The role of experienced CCNs.

Experience in practice.

Acuity in the environment.
The ACCU setting.
Layout of the environment.

Issues with equipment.

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Multidisciplinary working.
Collaborative care.

Availability of long-term care teams.

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Appendix 26: The framework method: Step Four – Charts of participants’
distilled summaries.

The aware patient.

Recognition of the aware patient.

P1.
Patient initially unresponsive, stopped nursing engagement despite being aware.
Need to think more about this as patient could have benefited from earlier
engagement with long-term care team. Difficulty building relationship when patient
was not interacting due to reduced conscious level. Patient aware much earlier than
nurses’ realised. Patient sitting in bed all day, just waiting for progress. Nurses
excited, writing in patient diary, with any signs of progress; more excited than the
patient. Noticed when nurses’ would not be engaging patient. Patient developed
strong relationships with nurses over time until he felt part of the family. Found that
trusting relationship.

P2.
Be mindful that these patients are awake and aware, even if don’t appear so. You
treat them differently to a sedated patient, explaining more when delivering nursing
care. With a sedated patient it will be basic instructions; whilst a patient with GBS I
will be providing a rationale for nursing cares, telling them what to expect as I don’t
want them to be frightened or worried. Being mindful about what you and others
around you are saying. Previous patients' experiences of nurses having
conversations, not realising the patient was aware. They remember a lot of stuff. It
must be horrible. So be professional at all times. And the aware patient becomes
demanding. They are a difficult patient group, you can do everything for this patient
and they're still in pain or uncomfortable. They’ve lost control. I want them to be
comfortable. Feel like you could have done more.

P3.
Patients with GBS are a very specific type of patient to care for. They’re not just the
depressed patient in the bed who doesn't want to be touched. You need to be
collaborative with them in their recovery, you don’t want to put your own agenda on
the patient. Routine is quite important to them, they develop quite fixed preferences
and activities that they might like to take part in. You need to build a relationship
with the patient where you can gain the patient's trust. If you're showing willing to
acknowledge their views and needs as an aware, active participant in their care, then
hopefully the patient will respond to that. If you've got their best interests at heart,
then that comes naturally.

P4.
It's very difficult to explain because if you look at them, they are awake. There’s not
much change in this patient group, day to day. You're building a connection for

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twelve hours. It was really important to make them feel cared for, even three or four
months after admission. If you're one-to-one, it's so much pressure. If you fail to
understand what they are trying to communicate, the patient will get madder with
you. It’s really important to be honest from the very beginning, talking with the
patient. Explain that you’re trying to do your best. Then they can see that they can
trust you. This patient group is hard work, you can spend two hours trying to get
them in the right potion, and you just can’t do it. And they feel like you don’t care or
aren’t trying. And you get frustrated. Then you think about it. What you did. And how
you behaved towards someone because of that frustration. It would be terrible the
rest of my day.

P5.
When the patient was sedated in the first days after admission, he was much easier to
look after, didn’t complain, not responding much to us. We are doing general cares,
looking after his numbers, just taking care of his vital signs. We don't focus much on
the person, we focus on the body. Once he awoke, he became more challenging. He
was getting stressed, complaining, having difficulty as a young man being cared for
by other young people. His body was deteriorating but his mind was clean. He knew
what was happening but he wasn't able to help us at all. It was this kind of self-
defence. It's not because of the care he was receiving. It was because he wasn't
accepting his condition. As nurses, we want our patients to be happy, calm, pleased,
and not complaining, but it’s not possible with this patient group.

Barriers and effectiveness in communication.

P1.
Communication is the backbone of patient sanity. Difficult communicating with
patients with reduced conscious levels, with patient aware much earlier than nurses
realised. Need to speak with patient to evaluate care effectiveness. Very difficult when
unable to understand patient needs. Utilising alternative methods of communication
when patient couldn’t speak because of weakness in mouth muscles; however these
broke and had no follow-up. No MDT members available to support nurse with
communication tools. New technology available but lack of understanding of how to
use. Social media utilised to keep connections with support networks open and
encourage friends to engage.

P2.
It’s really frustrating for the patient if they can’t communicate. Keep talking to the
patient. Take time to explain what you are doing and update them on their condition.
Especially if you’re performing interventions such as suctioning, rolls or starting
plasma exchange. You do that even when they are sedated, but more so when you
know they’re aware. You don’t want them to be frightened or worried about what’s
going on.

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P3.
Good communication between yourself and the patient is essential in order to make
the day run smoothly and have a good working relationship with that patient. If the
patient can’t communicate effectively and get their point across, it can be extremely
frustrating. Every patient is different, but they tend to come to the same conclusions
in terms on non-verbal communication techniques when they can’t speak such as
tapping and making clicking noises. Sometimes these communication methods are as
subtle as a look or an eye-brow raise, and it is really important that you're able to see
them as communication is at a premium. And if the nurse is busy or distracted, then
the subtle triggers of communication can be missed.

P4.
When you’re on-to-one with the patient, it’s so much pressure to understand what the
patient is trying to communicate. You fear their reaction if you don’t understand, it
will be terrible for the rest of the shift. They will be frustrated. It is difficult when you
can’t communicated. You need to be honest that you are trying to understand because
communication is key. You need to find some way to communicate. Reading lips was
very frustrating, because I couldn’t get what the patient was saying. He would swear
at me. Communication tools like an alphabet board had issues, you would get lost in
the letters, he would spell the word incorrectly, I would forget the letters, and he
would get angry. It’s difficult when English isn’t your first language and the patient
is spelling words incorrectly and thinking it’s your fault. It was really frustrating.

P5.
When problems started appearing, he was complaining a lot about pain. It took time
but eventually he was feeling more comfortable with us, he was friendly with staff,
trying to learn Spanish from the nurses, making jokes. Interacting more,
communicating his care needs appropriately, and it became a better relationship
because communication was easier.

Empowering the patient.

P1.
Motor function took longer than normal to return. Sitting in bed all day, waiting.
Difficulty determining recovery timeline, disheartening not being able to reassure
patient. Created pure frustration for the patient. Lost all independence, completely
dependent on nurses for everything. The patient has got nothing, is completely
vulnerable. No control over bowels, preventing rehabilitation. No light at the end of
the tunnel. Moving into bay helped with perspective. Important to be stimulating and
engaging patient. Ensured patient knew what was happening and collaborated on
ideas to improve patient journey. Don't just sit at the end of bed and watch them
sleep. Speak to them, talk to them, and read to them. If you've got time, you need to
do this. It’s what they need the most. Build a relationship with the patient. If they see
someone is giving more, they'll give more back.

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P2.
Often this patient group stays on ACCU longer than necessary, hindered by lack of
rehabilitation beds being available; yet we keep them too 'ITU-y'. Need to remember
this patient group are motivated to engage in rehabilitation, they don’t want to just
sit in bed watching TV. Need to be assertive and push the patient to see that they will
reintegrate back into society one day. They like getting out and about. They can see
that life goes on. Remember an ACCU consultant that prescribed trips off of the
ACCU to empower the patient through getting outside of their four walls and see that
rehabilitation is beneficial. Rehabilitation is going to make them come on leaps and
bounds. They're on a long path but not every day is going to be a good day. Give
them short-term goals to push them, cruel to be kind. Explain nursing cares such as
rolls and suctioning, so they are aware of what we are doing. Can be complicated as
you almost feel like you're doing it against their will sometimes. Wonder where you
stand when you know it will be beneficial but the patient refuses nursing cares.

P3.
It’s important to engage the patient with the importance of rehabilitation, trying to
motivate them during an emotional difficult time. Involve them to keep their brain
active and avoid going into a deep funk. Need to be collaborative in planning and
delivering their nursing care, such as ideas outlined by the long-term care teams or
using their routine to create a day planner that outlines certain activities. Working
with the patient to determine when they might like a wash during the day or when
they want to go to sleep at night. Having a patient that knows what they want and
when is better than having someone who is completely withdrawn and disengaged. Of
particular importance is that this patient group has had a lot of their choices taken
away from them. Creating a routine that allows elements of decision making is
important, as even small decisions become more important. Facilitating choices such
as placing pillows in a particular way, or how much time is spent on social media or
listening to music are examples of empowering small decision-making.

P4.
Be honest, talk with the patient. The patient would ask very simple requests, and it
always takes ages to complete these. Everything has to be done perfectly, it’s his way
of control. This patient group will never be comfortable because of the symptoms, but
you need to still try to work with them. Ask the patient how we can help them, have
them lead the care. I gave options, did the patient have any ideas. Because it is about
him. We are there for him. This patient group needs more attention and time. Time
spent trying devices and strategies to help with the symptoms. Involve them in
deciding what works or not. Explaining delays in care so the patient can understand
the reasons, even if they don’t agree. Sometimes it meant trying to distract him from
the situation, from the moment. I encouraged him to be honest in how he feel about
cares, and his communication with other colleagues. You have the close relationship
as the bedside nurse, need to encourage the patient to build that with other members
of the MDT.

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P5.
The patient was stressed as a young person being reliant on others for all his cares,
to clean his bottom, to be rolled. This was not normal for him. His body was
deteriorating, but his mind was clean. He knew what was happening but he wasn't
able to help us. He was behaving in a manner that was challenging because he was
scared or worried about how the disease would progress. As a nurse you are trying
to give your best, but every single patient reacts in a different way. I remember
looking after him or helping just with some basic care, making jokes while doing it.
Trying to involve him in normal life, teach him some Spanish. To engage and
empower him. He became more pleasant to work with. He was happier, and he was
friendly. He was as he probably is normally. He became motivated by having a good
relationship with the other nurses. He was feeling more comfortable with us. He
realised that it’s possible to have a more friendly relationship than just being there in
a bed, isolated. If you are interacting with the team, with us, it's going to be a better
relationship. We can help you more. And even you're going to be more loved than if
you’re being a dick.

The emotions of recovery.

Empathy.

P1.
Aware of patients fears around recovery progress. Patient lacking control, loss of
independence and dependence on nursing staff for cares. Disheartening that you
can’t reassure patient adequately due to own uncertainty around recovery prospects.
Witnessing the patient withdrawing into self and refusing to rehab as he couldn’t see
light at the end of the tunnel. Feel that patient has nothing, completely vulnerable.
Relatives overseas, difficult to offer much support. Hard that patient couldn’t speak,
engage, or open his eyes.

P2.
Imaging self in the patient’s position in reference to nursing care delivery, how
would I want to be treated? Feel that GBS is not any fault of the patient, it is
indiscriminate in who it affects. Makes you feel vulnerable. Empathic feelings always
at the forefront of mind when delivering nursing care. How would I like my day to
go? How would I want to be spoken to? Put a personal spin on it to avoid being
disconnected, don’t want to switch off and be cold. Do it with every patient.

P3.
Feel heartbroken for the patient that they’re in this situation, but can’t mentally
picture self in their situation. Sympathy for the devastating effect on the patient’s
health and wellbeing that GBS has had, going from living a full life with activities
and personal lives to a sudden change in their situation. Particularly with the
question of if they’re going to get better. Sad that recovery is so much slower than
other conditions, but in context of other patient groups such as those with spinal

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injuries who have different prospects of recovery. Each nurse will have an individual
reaction.

P4.
I can imagine that the patient was in pain, stuck in his bed for many months.
Everything was important. I don’t blame the patient. It wasn’t special things he asked
for, brushing his teeth, normal stuff. Basic nursing care. It was what he could control.
Sometime he was in pain, sometimes it was a bad day. It’s difficult. It must have been
really boring and lonely; can you imagine? And if you are being ignored by the
nurse, or the nurse falls asleep, he had a good reason to be upset. I do understand.
This must be terrible for them to see the person that is supposed to care for them
behaving this way. We should be asking what we can do to make your life happier.

P5.
He knew what was happening but he wasn't able to do anything. He was scared or worried
about his future recovery, whether he would need care for the rest of his life. Every patient
reacts in a different way. He was stressed because of the pain and needing help with all his
cares, the loss of independence. You feel sympathy for him. This was not a normal life for a
young person. As a nurse you are trying to do your best, and it helps to know what the
patient likes and dislikes, so then you can be more focused on what the patient needs, what
they really enjoy. You are trying to make them feel happier.

The psychological needs of the patient.

P1.
Ups and downs throughout patient’s time on ACCU, particularly low mood.
Frustration and depression as progress not as quick as normal. Difficulty reconciling
having previously had GBS with a quick recovery. Inability to reassure patient
disheartening for both nurse and patient. Patient became withdrawn and refused to
rehab. Great support network coming in to see him and keep his vibe up.

P2.
A lot of their battle during recovery is psychological. They can have a really good
day and be really grateful, motivated to engage with rehabilitation more. Main issues
are low mood and frustration as can’t see the end to their illness, that they don’t get
better every day. Frustration with slow weaning from the ventilator or not being able
to eat or drink. The loss of control and independence is a big thing. It can be
disheartening for the nurses when the patient has not had a good day, feel like you
can’t win. A good day of rehabilitation can be followed by the next day full of
tiredness, with the nurse feeling like they pushed the patient too hard.

P3.
Getting your point across if you can't communicate effectively is extremely frustrating
for the patient with GBS. Particularly if the nurse is doubled with caring for another
patient and each patient has not got the nurse’s undivided attention. Heard stories of

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nurses coming in to the patient’s bed space, turning the TV off when this nurse has
decided that it's night-time, but the patient hasn't actually finished watching the telly,
this can be abusive to the patient. Patients can become depressed if they have not
engaged with the importance of rehabilitation, recovery and activities to keep their
brain active. If the patient is quite withdrawn it becomes challenging because they've
heard the engagement techniques of the nurse before, and it can be difficult to find
new ways to reengage them.

P4.
He was really in a low mood. Dealing with not being comfortable and in pain. The
patient was in the same room for months, sometimes for twelve hours he would just
see the one face. Long enough to be bored and fed-up with that face. At times not
having a connection with the nurses, he didn’t like some of them, and then having to
spend twelve hours with them. He would be frustrated, swearing at nurses. Getting
upset with nurses, even when they are trying so hard, changing the position of pillows
every five minutes. Nurses would hope he was in a good mood. That would make a
difference to their day.

P5.
There was a stress-limit for the patient when it came to changing his position. It was
challenging from the very beginning. He was stiff and deteriorating. We were doing
our best but he was stressed and in pain. He would refuse to be rolled at times.
Delays in getting pain relief would be very distressing. He was worried about if he
would get worse or if he was ever going to get better. Scared what was going to
happen to him in the future, would he be in a wheelchair or even a bed for the rest of
his life. Failing to accept that he was ill and dependent on others. It all increased
stress on the patient. There were times later when he was happier. When he
interacting with the nurses, having a good relationship with them, feeling a love in
the relationship.

Rewarding.

P1.
Delivering nursing care is very time-consuming, but paid back in making patient
happy. Nurses would be more excited than patient with progress, evidence of how
much the patient benefited from cares. Particular reward in seeing how much patient
loved trips off of the ACCU. Energy fed back to nurses after bathing the patient.
Realised that if patient sees you giving a little bit more, they’ll give a little bit more
back too. Noticed low mood episodes were less. Perceived that patient felt like part of
a family due to compassion in nursing care delivery.

P2.
Personally find it really rewarding to deliver nursing care to this patient group. It
makes you feel better if your patient's a bit happier. That makes you feel good. Put a
patient in the shower last week, he didn't want to get out of the bath, loved it. You just
see it. You see patients respond to it really well. Nurses like just seeing them

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progress, even if they don't make massive progression every day. It's rewarding to see
them make little steps like doing longer off the ventilator, longer on CPAP, longer on
trache mask. When they can start moving their arms and legs, start eating and
drinking, is a big thing.

P3.
The nurse is on a journey with the patient, and seeing them improve to the point
where they are making discernible advances in their recovery is rewarding for both
the nurse and patient. Being part of that journey with them is a special things. It's one
of the great things about being a nurse. Evidence of the work the nurse has been
putting in because you want to be doing a decent job. You want to be caring for the
patient in the best possible way.

P4.
I want to help people. He was moaning that he wanted a Coca-Cola, so I brought him
in one. And he was like ‘oh my goodness. You brought me a coke. Thank you so
much. It means a lot to me’. He was happy. This patient group are so grateful for the
little things, you don’t even realise it sometimes. Get them their favourite food and
they are grateful forever.

P5.
When the relationship between patient and nurse improved, he was a pleasant and
friendly person. There was a love, and quite a lot of people wanted to work with him
because it was easier to take care of him. We could make jokes, make fun of where he
was from, and teach him Spanish. It was more rewarding at this stage because he
was acting as the person he would normally be. It was even rewarding to help others
look after him. People were happier looking after him, probably because he
understood that the care he was receiving could be at an even better level when he
was interacting and not challenging people. We were trying to always get a nice
smile from him.

The long-term aware patient.

Nurses views of the long term patient.

P1.
Experience of patient with GBS being on ACCU for nearly a year, classified as a
long-term patient. Nurses would rather look after sick trauma patient than long-term
patients. A negative persona exists around delivering nursing care to a long-term
patient. No-one feels enthusiastic. Personal belief that long-term patients are more
complex and fun than really sick patients. Need to change the morale and attitude
towards working with these patients. Spent time encouraging nurses to attend long-
term team meetings, fell on deaf ears.

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P2.
Main long-term patient groups seen on the ACCU are patients with GBS, spinal
injuries, and slow respiratory weans. Every nurse wants allocation to the sickest
patient, they don’t want to look after a long-term patient, not someone who has been
on the ACCU for weeks or months. Ask one hundred nurses and majority would like
the young trauma patient with lots of injuries. Don’t view patients with GBS as
particularly educational or furthering professional development. They are difficult
and demanding, take a lot of your time. Some days you just feel like you can't win. I
wouldn’t want to be allocated to this patient group every shift. Sometimes you have a
one shift limit. But also they are really rewarding. Simple things like showering them
or putting on their favourite TV show can massively change their day.

P3.
Not routinely allocated to this patient group, very intermittent. Aware of patients with
GBS on the unit. Patients with GBS are a specific type of patient to care for. Caring
for patients with long-term conditions can be very challenging, particularly keeping
up the motivation on both sides.

P4.
It is always a long day when caring for a long-term patient. When you see your name
on the board allocated to this patient group you think it's going to be a really
frustrating day. They are very sick, but not compared to other patients on the ACCU.
They need more attention and time, you are always busy but you’re colleagues are
always asking for a hand with their patient because they think the long-term patient
can wait for their cares. Their patient is more important because they are sicker. It’s
frustrating. Nurses refuse or request not to be allocated to the patient because of
negative patient behaviour. They are such hard work.

P5.
There was a time when the patient was first admitted that people didn’t want to work
with him as he was quiet challenging. It’s difficult for every single nurse. We like our
patients to be happy, to be calm, to be pleased, and not complaining, but it's
impossible. Almost impossible with this patient group. As a nurse you are trying to
give your best, but every single patient reacts in a different way. We are the ones with
the patient twenty-four hours per day, and when the patient has been here longer, the
patient is going to be more demanding, and the person who is going to be dealing
with them is the nurse. It is a high workload because the patient is going to be more
demanding. And sometimes you know you won’t be able to meet all their care needs.

Complex nursing care needs of the patient.

P1.

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Caring for patient group is difficult with heightened needs around holistic care and
psychological nursing care needs including aiding support for family overseas, use of
social media, facilitating trips off unit to restore normality, weaning from the
ventilator, bowel managements systems, and blood pressure management. Pain was a
massive issue, restricting rehabilitation. Side effects to pain-relief medications.
Neuropathic pain is the worst pain. Pressure areas were well managed. Day-night
pattern was disrupted and required intervention. Patient became very withdrawn into
himself. Became main contact person for patient’s family overseas. Liaising with
nurses and MDT as leader of long-term care teams. On top of the nurses to make
sure they were keeping up standards. Initiating change when necessary to ensure
better care. Looking into long-term rehabilitation needs including sourcing GP
details, local services, and repatriation services. Very time-consuming. Emailing
details from long-term team meetings to staff to keep in the loop. Pushing members of
the MDT for movement of patient from side room out into bay. Encouraging staff to
engage with the patient through trying to change the morale and the attitude towards
these patients.

P2.
Pain is a big issue. Patients with GBS have always got back pain and are never
comfortable. Managing the poly-pharmacy of analgesics, speaking with the pain
team. Re-positioning constantly as they aren’t comfortable. You have to get people
together to roll them again, that wears you down a little bit. Managing blood
pressure and stuff like that is fine, they don't really generally have cardiovascular
problems. This is standard ACCU patient management. But a lot of it is
psychological. To somehow improve their psychological mood. I'm all about taking
patients outside or to the helipad. To do so you can't always assume that you're going
to have an anaesthetist, so you need to be happy with their airway, assessing the
safety aspects of it. Try to reduce the barriers. There’s definitely things that you can
do to improve their day: giving them a shower or putting on their favourite TV
programme, getting them in the bath or washing their hair.

P3.
Every patient is different and you want to be caring for the patient in the best
possible way. Physical aspects include weaning off of the ventilator, monitoring
muscle degradation and strictures, placing pillows as per patient instructions, and
mobilising into chairs. Changing the environment where possible, away from the
sterile hospital bed space into something more personal and friendlier; one where the
patient can see people coming and going, is important. Promoting stimulation
through repositioning the bed, using entertainment systems, facilitating interactions
with staff and watching the goings on in bays, and going off of the ACCU. Reduce the
feeling of institutionalisation, even if it’s just a trip down the corridor. Especially
when you know the patient will be on the ACCU for a while.

P4.
It's time consuming, whatever the patient wants to do. It is a combination of
everything. He didn't really ask about very special things, just bush my teeth and

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things like that. Really normal stuff. Basic, basic nursing care. But you sometimes
you don't have time because you are changing the pillows every five minutes, because
it was too flat or too fluffy. How many times can you change the hands' position in a
shift? Its hard work. He'd ask for painkillers and getting the keys for the CD
cupboard just takes ages, you need two people to do that and it's break time so no-
one is available. It’s frustrating for both nurse and patient.

P5.
When the patient is sedated, they receive the general cares of the ACCU patient,
monitoring the vital signs. When he awoke and was still on the ventilator, he was
receiving the normal cares on the ventilator as part of the ventilator-acquired
pneumonia prevention bundle, changing the HME, mouth care, and clearing
secretions. His breathing wasn’t much difficulty to manage. Pain management, and
getting painkillers was difficult. Changing position and mobilising was the biggest
challenge, he was stiff, whilst his joints and muscles were deteriorating. Sometimes
complaining he didn’t want to be turned. Cleaning his bottom involved positioning
and re-positioning him. Taking him for trips outside. Putting him in the wheelchair,
going around, showing him different places. Even just going to the corridor where
he can see from the window, he was quite happy with this. Providing the patient with
a good environment full of distractions, chatting with him to improve his mood.

Delivering extra-ordinary cares.

P1.
Nurses went above and beyond, off their own back to reduce patient’s feelings of
isolation. Efforts made to support him and help him through it. This care was really
good. Saw how much patient liked it. Engaged in patient’s interest of motorcycling,
made sure he saw the videos. Dedication from favourite band on social media.
Decision made to move out of side room to brighten mood, resulted in laughing,
faster rehabilitation and a good state of mind. As patient couldn’t type, would type
for him to keep updated with family overseas. Encouraged friends to keep in contact.
Investigated rehabilitation options for the future. Took him on trips off of ACCU to
see there was a world outside, see more life around. Go to the helipad, go to the pub.
Even still, nursing staff could’ve had more initiative to encourage trips out.

P2.
You need to push these patients. It makes a massive difference getting people out of
bed, out of the four walls that they're in. Can’t just let them sit in bed watching TV all
day, not rolling for twelve hours. You take one look at all the equipment and think
how am I going to get someone in there? It looks like a lot of work, but once you
actually do it it's not too bad. I think the nurses quite like getting out as well. It
doesn't have to be a lot of work. I do think sometimes people over-complicate it. I've
never taken someone outside and they've hated it. They've never turned around and
said 'I don't want to do that again. I hated it'.

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P3.
Activities and strategies to keep the brain active are important to prevent patients
from becoming disengaged in their recovery. This includes, if staffing allows, trips off
of the ACCU to offer a change of environment; getting the patient into chair, moving
the bed out of the bed space, and getting into a position where they might have a
good view of the window or TV; or setting up entertainment systems such as radios,
TVs, or iPads. Spending time to go through passwords and log-ins to ensure
preferences over films and records are facilitated. Trying to turn the ACCU into a
friendlier environment for the patient so that it doesn’t feel so sterile, and having to
work against barriers such as particularly nurses and traditions on the ACCU to
achieve this.

P4.
I just wanted to help him because I could. I couldn't fix his problem, but if he asked
me to bring him in something like a Coca-Cola, I would. Because that is what I can
do, to make him feel better, to make him happier. It’s just a coke to me, but for him,
he hadn’t had it for five months. It made a huge impact. Bringing in a picture or
favourite food makes such a difference. Am I doing this because I am a nurse and I'm
trying to help him or because I am a good person? I would say both. I think it’s
something to do with personality. About how much you can give to the patient.

P5.
We were teaching him Spanish as part of trying to improve his mood and engagement
with the nursing staff. He was happier and friendlier. Putting him in the wheelchair,
going around, showing him different places. Even just going to the corridor where he
can see from the window, he was happy with this. I think he even went once on the
bed downstairs, to the A&E department entrance. I think these kind of new
experiences are good for every long-term patient on the ACCU. They are going to be
here for long and I think they are quite nice for this patient group as a change of
environment and routine.

The role of the experienced CCNs.

The source of knowledge.

P1.
Only had one patient in the last twelve months with GBS. Previously looked after
patients in neurology setting with the worst, unstable GBS. Saw innovative treatments
there. Require more training around looking after patients with GBS, particularly as
a long-term patient. Unsure of best practice in certain areas of delivering nursing
care. Wonder if a neurology intensive care unit would’ve done things differently.
Aspects of rehabilitation need to be improved, despite improvements over the last few
years. ACCU is very acute-care focused, need to shift emphasis slightly.

P2.

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GBS is an interesting condition, neurology is a point of interest from previous job
caring for patient group in a medical ITU. Have undertaken a neurological study
course which incorporated GBS. Main knowledge about delivering nursing care
comes from previous experience and reading around the condition. Learning also
initiated by encountering new patients. Patient group comparable to other long-term
patient groups seen on the ACCU such as patients with spinal injuries. Reassurance
in delivering care gained from previous success with strategies and experience of
certain situations such as mobilising this patient group.

P3.
I've been sporadically allocated to two patients with GBS. There is no specific
training on how to care for this patient group, and nursing care was delivered from
experience. There should be formalised training, such as a care for the long-term
patient study day. The development of nurses with expert knowledge on each line and
shift would be helpful. Better awareness of what resources are available in terms of
equipment and members of the MDT would enhance the delivery of nursing care due
to understanding of accessible services.

P4.
Every single patient is different. GBS is different, but the nursing care is very similar
to patients with spinal injuries. You get the same reactions, the same frustrations.
Why is the patient not comfortable? Is he in pain or it's just in his head? Try to
understand. I've looked after only one person with GBS, but I want to help people. I
think it’s something to do with personality. How much you can give to the patient. No
previous training on GBS, just relying on previous experience of similar patient
groups. Trying to do your best.

P5.
I haven't worked much with this patient group because it isn't a usual disease on the
ACCU, but I remember taking care of a patient for a couple of shifts. There is no
special training around caring for this patient group. On the ACCU there is basic
stuff available. We have general training, but no specific training. There is the neuro
ITU course, but it's not available for everyone. There's a few places per year. So if
you want to learn, to develop your career, you have to do so on your own. I based
delivering nursing care on previous experiences caring for the patient with GBS, as
well as my previous experience as a nurse generally. I used to work on a neurology
ward in Spain. So I remember looking after guys that had GBS. I met a young guy in
Spain in his twenties, he developed GBS. I remember people from years ago. And
then, personal reading that I did in my own time.

Experience in practice.

P1.

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Senior nurses caring for patient group on the ACCU, leading by example. Educating
junior nurses by demonstrating cares informally at the bedside, installing confidence
and using enthusiasm to change perceptions. Establishing what nursing care the
patient requires. Being innovative with meeting nursing care needs, junior nurses
seeing the difference in the patient’s reaction. Organising extra staff to facilitate
delivery of cares and patient trips off of the unit. Encourage junior staff to stimulate
and engage with the patient.

P2.
Aware that junior nurses might not have much understanding about GBS, so role of
senior nurse to educate staff. Be assertive with others to be mindful of the patient
being aware through handover and ongoing communication. Need to do this better
on the ACCU. Bedside education for junior nurses is required. Need to be bolshie at
times to overcome barriers to delivering nursing care such as bathing and getting off
of the unit for trips. Try to encourage nursing staff not to over-complicate cares, keep
it simple, but safe, to overcome obstacles. Such as, if you get more people taking
people outside, you get more people realising it's not that bad and doing it more.

P3.
More consistency in nursing staff allows for better continuity of care. Having long-
term care team members with better understanding of the needs of this patient group
to pass on to junior staff helps those not on these teams stay up to date with the
routines, preferences and needs of the specific patient being cared for; as well as
being able to offer advice around the resources such as communication tools that are
available for facilitating the delivery of nursing care. Having expert knowledge on
how to best care for this patient group helps overcome a lack of formal training
opportunities being available.

P4.
I was very honest with him from the very beginning. Sometimes on breaks nurses
would say that their shift has been a nightmare, they couldn’t please the patient. Such
hard work. It was just frustration. Sometimes I noticed nurses ignore him. I hated
that. It was exhaustion trying to meet his care needs. But also maybe the nurse wasn’t
being honest. I felt more comfortable saying I’m sorry, but I’m trying. I couldn't
always fix his problem, but if he asked me to bring him something, I would. Because
that is what I can do. I think it’s something to do with personality. How much you can
give to the patient.

P5.
As with every single patient, with every single colleague, it's always good to share
your knowledge. If someone is not aware of a situation or a different disease, I think
it's good to share what you know so that other people can be more involved. Or can
understand better every single disease. You as a nurse are trying to give your best,
but every single patient reacts in a different way. It’s important to do your own
reading to develop your knowledge and career.

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The ACCU setting.

Acuity in the environment.

P1.
The ACCU is an extremely busy unit and facilitating nursing cares can be difficult.
Shortage of staff is an issue, would be great to have more. Most of the time, nurses
initiated care delivery, but needed additional support at times that was difficult to
provide. Left asking if the ACCU or a specialist neurological intensive care would be
the best environment to treat this patient group; would they do something different
there?

P2.
You can’t always assume that additional staff will be available to help with the
delivery of nursing care, particularly airway-trained medical staff required for taking
patients with artificial airways off of the ACCU. You hit a bit of resistance sometimes
with getting these patients up and out. Strategies are required to overcome these. The
nurse needs to assess the safety aspects such as if you've got a trache that's been in a
while, you're not too worried if it falls out you can't put it back in again if you have
those skills. Then you might be happier to go out without an anaesthetist.

P3.
The ACCU is particularly busy, often short of nursing staff. Facilitating nurses’
breaks and patient safety is prioritised over the delivery of certain nursing cares such
as trips off of the ACCU. However these cares should be facilitated by the nurse-in-
charge or runners as a priority because it is definitely, for safety issues, a two person
job. Particularly if the patient is on a ventilator. When long-term patients are on the
ACCU, they should really be counted into the staffing numbers as while they may be
low-acuity, the number of staff required to meet their care needs effectively is
actually higher than a normal High Dependency level patient. The presence of
agency staff also affects the allocation of non-agency staff, to account for patient
location on the unit and skill-mix in the bays. This can affect a regular member of
staff in a side room by being excluded from certain activities such as teaching or
supporting junior nurses by the bedside.

P4.
If you are in a bay and there is an admission or another patient that is sicker, their
nurse will ask you to help with their patient. I am busy but they expect me to give a
hand. It is really annoying. Sometimes the ACCU is very short of staff and it is very
stressful. It create the situation where you need to ask your patient if it is ok to go and
help others. To sacrifice their own care needs. I was really sorry.

P5.

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The ACCU is a busy place. It is difficult to find people to assist with the delivery of
nursing care. Finding nursing staff available the get the keys for the CD cupboard
was sometimes difficult. It took a long time, and not as soon as the patient would
have like. This adds more stress onto the nurse as you are twenty four hours per day
with the patient, you are the one they feedback to.

Layout of the environment.

P1.
Difficult to know what is best for the patient with GBS who becomes long-term:
having a bed-space in a side room or bay. Side rooms might help with sleep pattern
and can create a nice, personalised environment; yet can lead to feelings of isolation,
depression and boredom. Tried moving patient into bay to gain more stimulation.
Turning point for patient. Not sure if in-line with best practice recommendations, but
worth trying. Staff had faith that it might be a good idea.

P2.
Whether in a side room or a bay, it makes a massive difference getting people out of
that four walls that they're in. They can see that life goes on.

P3.
Caring for this patient group is easier in a side room as you're one-to-one with the
patient, reducing the chance of being distracted from the job at hand. It is more
interesting in a bay, to be surrounded by people, observing things, good or bad,
whether there is just human interaction, conversations that they’re not necessarily be
involved in, or even watching an admission or discharge. That keeps your brain
going in being aware that life is going on around them. It sounds mundane, but if
you're stuck in a bed all day then that would be an event. Somethings that you might
miss from day-to-day life. But in a bay it's easy to leave the patient to support
colleagues. It’s a fine line between having a nurse’s undivided attention in a side
room, and having something going on around you in a bay, but not having as much
attention paid to you. Sometimes, the decision-making is taken out of it when a side
room is required for a certain patient type such as those needing barrier-nursing.

P4.
When this patient group is in a side room, you've got more time to deliver cares
because it's just you and the patient. But it’s a lot of pressure, one-to-one. Its twelve
hours for the patient looking at the one face. They get bored. There would be just
ward round and maybe someone to come relieve you for breaks. If you needed to
change the position you struggled to get the people. In a bay you’ve got more
interactions, but then you don't really have that much time for delivering care to your
patient because your colleagues are always ask you to help them. Or they just expect
you to help them. But then someone can come along and chat to the patient and it
brightens their day up. There is something going on, good or bad, even an admission,

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or they can see another patient that is very sick and it puts their situation into
perspective. It’s this kind of thinking with side rooms and bays.

P5.
When the patient moved from a side room out into a bay he was happier. People who
were looking after him were happier too. I think the environment around him was
better. I think it is quite good for him. Because sometimes it is difficult to get people
to help with the delivery of nursing care in a side room. In a bay it is easier to get
people, to get staff. In a side room, it's time. You can’t be self-sufficient, you depend
on others. It can take you fifteen, twenty, thirty minutes, one hour time to get enough
people to reposition the patient. It's quite distressing for him, and for us as nurses.

Issues with equipment.

P1.
Shortage of equipment on ACCU delaying rehabilitation. Wheelchairs to take
patients out of bed space the major shortage. Incident reporting undertaken to
highlight needs and move up the tiers of priority. Aware of restrictions on the
purchasing of equipment due to NHS Trust being in financial measures. New
communication equipment broke, not followed-up; despite necessity for delivery of
nursing care.

P2.
We load patients up with lots of equipment that they don't really need when
attempting to them off of the ACCU. This can create barriers to the delivery of
nursing cares as nurses feel overwhelmed by the thought of trying to manage these.

P3.
The ACCU needs a stockpile of suitable equipment which may not be routinely
available, facilitating rehabilitation for long-term patients earlier and more
frequently. This includes appropriate wheelchairs for taking patients off of the
ACCU, and OT specific tools such as big-handled cutlery, pens, and cups.

P4.
You use a lot of devices for positioning the patient such as pillows and cushions.
Communication tools like the alphabet board became really frustrating. Sometimes
he was spelling something, and then he spelt something wrong. I’m not English and
you feel like you’re going crazy, trying to guess what he is saying.

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P5.
The most challenging activity with him was mobilising. He was in quite a lot of pain.
Getting painkillers was sometimes difficult as we need to get the keys to access the
CD cupboard. Sometimes it takes longer than he'd like to get his painkillers.

Collaborative care.

Multidisciplinary working.

P1.
Neurology team input with advice around recovery, particularly useful with nurses’
finding their feet with rarity of GBS. Very good at updating patient and family when
they came, but not as consistently available as could have been. Not enough members
of the MDT on the ACCU, particularly physiotherapists. No full-time SLT.
Relationships between nurses and therapist teams strained at times, very character
dependent. ACCU consultants’ enthusiastic, exploring options around the
rehabilitation programs and increasing communication with patient. Nurses seeking
advice from senior nurses and doctors if they felt like something wasn’t right. As a
senior nurse, tried to be approachable for communication in order to initiate change
in interest of patient care.

P2.
Multidisciplinary considerations taken on board when caring for this patient group.
We look after this patient group as a team quite well. Suggestions from nurses well
received by the MDT members, don’t ever feel alone as a nurse caring for a patient
with GBS. Medical team open to suggestions, however wonder if a junior nurse may
struggle to approach the MDT members with concerns. Comfortable discussing
ventilator weaning strategies with physiotherapists, providing rationale that would
hope was well received. Confidence to engage with MDT members might come with
experience. Good interpersonal relationships with individual members of the MDT
through working with them in other capacities, allowing for easy referral of patients
to their services.

P3.
Getting the occupational therapists involved is important, however they are few and
far between. They are under a lot of pressure in the Trust, and they are not
particularly seen in the acute setting. However, early referral for early involvement is
preferable. They could help get equipment ready when you're going to need it, rather
than once you need it making the referral and then having to wait. Another facet
would be getting the OTs and physiotherapists to come and talk with the nursing staff
around what services are available, what they can provide and specific aspects of
care delivery such as ventilator weaning plans and getting the nurses more involved
in these cares.

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P4.
I’m not sure the physiotherapists were involved enough. They provided enough
splints and equipment, but more in-person instruction for the nurse and patient would
have been helpful, nice to see a face. It felt like everything was on the nurses’
shoulders. They left instructions, but were not seen in the bed space very often. Same
goes for the OTs. The ACCU consultants were really good, trying to find positives
and changes every day, even when there was not much change. It was difficult for the
patient to build relationships with other teams that felt like they would show up for
five minutes once per week. No trust. No honesty from the patient in communication,
afraid of offending them and not sure how they would react. Instead, would
communicate with the nurse to act as a liaison between them and the MDT.

P5.
This patient group needs more attention from the MDT than they get. It is more stress
for the nurses to do things that aren’t in our role. Doing aspects of the roles of the
MDT members. It is quite important for the physiotherapists to be involved, they don't
spend as much time as they should with this patient group. This kind of patient is
going to deteriorate. Their muscles are going to deteriorate. They need more
attention. I have never seen an OT on the ACCU in three and a half years. These
patients will need ongoing support as they move on, and it is a worry for the patient
not knowing plans for the future. It is more stress for the nurses to do things that
aren’t in our role. The medical team keep a close eye on a new patient, but after a
patient has been on the ACCU for twenty, thirty, fifty days, they're just coming
around asking how he is. They’re not going to spend much time with him, they will
spend more time with the sicker or newer patients. It puts more work and stress on
us.

Availability of long-term care teams.

P1.
Created long-term care teams to facilitate continuation of care. Any patient over
seven days on the ACCU and engaging with rehabilitation are classified as long-term
patients. Patient wasn’t initially classified as a long-term patient as unsure of
conscious level. Referral to this team comes from several sources. Teams are the
ultimate best way to look after these patients, did a good job. Organised big meetings
with MDT, family and patient at the centre. When it works, it works really well. I'm
quite enthusiastic, engaging and really hands on with long-term patients, changed the
morale and the attitude towards these patients. Nurses are keener, more active in
regards to feeding back and referral. Nurses’ seeing the benefits. More training on
care for the long-term patient is required. Need to shift emphasis at times and
improve holistic care; incorporating massage, reflexology.

P2.
Have been to some of the long-term care team meetings, good for taking into
consideration each MDT members’ views on the next steps for the patient being
discussed. It’s collaboratively driven, rather than strictly the doctors guiding things.

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Encouragingly, the nurses’ and physiotherapists’ thoughts are taken into
consideration.

P3.
The long-term care teams give better guidance of how to care for this patient group.
They help come up with particular plans such as having the patient in a particular
room with a good view, or recommending decanting equipment that's not needed out
of the bed space, to make it into a more user-friendly environment for the patient and
the nurse. That's beneficial.

P4.
I think they are a good idea. To create a group who look after the patient, they know
what he likes, all of his habits. They did discuss with him about allocation to ensure
he felt comfortable with the nurses. Asked what do you think we can improve? Do you
have any suggestions? What do you like? What don't you like? What can we do to
make your life happier? Because it's about him.

P5.
I think this is a good idea. They know the patient, everything he likes, what he
dislikes. It allows the nurse at the bedside to be more focused on what the patient
needs, what the patient really enjoys. You can get a better understanding of why they
are on the ACCU. What their feelings are. For this kind of long-term patient these
teams are quite good. They start thinking what the next step is and the patient can
understand that we are trying to do different things to help them in their recovery.

Appendix 27: The framework method: Step Five – Three core concepts.

Core Concept: Caring for the aware adult patient with GBS on an ACCU.

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The Caring for the
psychological aware adult
The aware
aspects of patient with
patient.
recovery from GBS on the
GBS. ACCU.

Core Concept: Previous experiences and perceptions of caring for the adult patient with
GBS on an ACCU.

Previous
experiences and
The role of perceptions of
The long-term delivering care
experienced to the adult
aware patient.
CCNs. patient with
GBS on the
ACCU.

Core Concept: The critical care environment.

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The critical
The ACCU Collaborative
care
setting. care.
environment.

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Appendix 28: The framework method: Step Five – Themes and categories within
core concepts.

Core Concept: Caring for the aware adult patient with GBS on an ACCU.

Themes. Categories.

Recognition of the aware patient.
The aware patient.
Barriers and effectiveness in
communication
Empowering the patient.

Empathy.
The psychological aspects of recovery
from GBS. The psychological needs of the patient.

Rewarding.

Core Concept: Previous experiences and perceptions of caring for the adult patient
with GBS on an ACCU.

Themes. Categories.

Nurses views of the long-term patient.
The long-term aware patient.
Complex nursing care needs of the
patient.
Delivering extra-ordinary cares.

The source of knowledge.
The role of experienced CCNs.

Experience in practice.

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Core Concept: The critical care environment.

Themes. Categories.

Acuity in the environment.
The ACCU setting.
Layout of the environment.

Issues with equipment.

Multidisciplinary working.
Collaborative care.

Availability of long-term care teams.

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Appendix 29: Social and demographic data collection information.

Participant P1. P2. P3. P4. P5.
Unique
Identifier.

Job Title. Senior Sister. Sister. Critical care Sister. Charge
nurse. Nurse.

Band. Band Seven. Band Six. Band Five. Band Six. Band Six.

Length of Four years. Eight years. Six years. Four years. Three and a
experience half years.
working on
ACCU.

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Appendix 30: Email from National Institute for Health and Care Excellence
(NICE) re. Protocol for Guillain-Barré syndrome.

Received: 09/11/2017, 18:32

Dear [Withheld for confidentiality],

Thank you for contacting NICE with your enquiry on protocols for Guillain-Barré
syndrome.

To date, NICE has not published a guideline on the treatment of Guillain-Barré
syndrome.

Topics for the clinical guideline work programme are referred to NICE by NHS
England, the Department of Health or Department for Education. We have not been
asked to develop guidance on every condition and topics for new guidelines will be
informed by NICE quality standards. Topics are selected on the basis of a number of
factors, including the burden of disease, the impact on resources, and whether there is
inappropriate variation in practice across the country.
You can access the current list of quality standards, referred, published and in
development on our website.

You may find useful information by doing a search on the NICE evidence search or
from the NHS Choices.

I hope this information is helpful.

Kind regards,

[Withheld for confidentiality].

[Withheld for confidentiality].
Communications Executive (Corporate Communications).
National Institute for Health and Care Excellence.
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom.
Tel: [Withheld for confidentiality].
Web: http://nice.org.uk

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