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The Experience of Sharing with
Strangers: A Phenomenological
Study of Patients in an Acute
Medicine Unit
By
Helen Pickard
MScR
May 2018 (Amended November 2018)
1
The Experience of Sharing with
Strangers: A Phenomenological
Study of Patients in an Acute
Medicine Unit
Helen Pickard
May 2018 (Amended Nov 2018)
A thesis submitted in partial fulfilment of the university’s requirement for the degree of Master of Science by Research
2
Dedication to Susan Lynn Wiggans
3
This study is dedicated to the memory of Susan Lynn
Wiggans, my best friend and sister-in-law who lost her battle
with bowel cancer in March 2017 at the age of 55, not long
after I started this research. During the many weeks she
spent in hospital, Susan talked about her experiences and
often mentioned her fellow patients, usually describing in
detail their circumstances and suffering. She firmly believed
that the people around her impacted greatly on her
experience and as we talked I related her encounters to
those of my patients in Acute Medicine. It is because of
Susan that I embarked on this study. I wish she was here to
read it.
Acknowledgements
I would like to thank so many people for giving me the opportunity to complete my
Master’s by Research programme at Coventry University. It was only made possible
by the generous funding from the National Institute for Health Research for which I am
eternally grateful. I would also like to thank the many people I have met along the way,
particularly my Director of Studies, Diane Phimister, who has been an inspiration, and
without whom I may have been tempted to give up. Also thank you to Laurence
Baldwin and Katherine Brown, my supervisors who have given much support and
valued feedback. I am also very grateful to Dr Simon Fletcher and Dr Rob Simpson, in
the department of Renal, Acute and Emergency Medicine at my trust for believing in
me enough to let me take time away from the clinical area to pursue my research
interest. I hope I will make it worthwhile when my research begins to make a difference
to patients in the department. I would especially like to thank the participants who gave
their time and opened their hearts. I am grateful to everyone at the university
especially Jane Coad and Colette Clay, and also my clinical supervisor Bobbi Pawar,
all of whom made this journey possible.
Finally, I want to thank my husband David for all his patience and support and my son
Martin who has helped by comparing research notes as we supported each other
through our respective university journeys.
I am so glad I was able to do this; it has changed my entire career.
4
ContentsSectio
nDescription Page
numberDedication 3
Acknowledgements 4
Table of Contents 5
List of tables 7
Abstract 8
1 Study Aim 10
2 Background 10
2.1 Personal motivation 12
3 Literature Review 13
3.1 Background and Rationale for Review 13
3.2 Search Strategy 13
3.3 Summary of Studies 14
3.4 Quality Assessment of Studies 20
3.5 Findings from Literature 20
3.5.1 Ambiguous relationship 21
3.5.2 Enforced companionship 21
3.5.3 The importance of humour 21
3.5.4 Negative aspects of the relationship 21
3.5.6 Fellow patients as care providers 22
3.5.7 Learning from fellow patients 22
4 Methodology 23
4.1 Framing the study 23
4.2 Approach 25
4.3 Inclusion criteria 26
4.4 Sample selection 27
4.5 Data collection 27
4.6 Data analysis process 27
4.7 Reflexivity: Exploring the Impact of the Researcher 28
5 Ethics and governance 31
6 Participants 33
6.1 Jim 33
6.2 Elsie 33
5
6.3 Tracey 34
6.4 Pete 34
7 Data Analysis 34
8 Findings 41
8.1 Individual Insecurity 41
8.1.1 Sense of Vulnerability 41
8.1.2 Self-protection 41
8.1.3 Coping Strategies 42
8.1.4 The Need to Care for Others 44
8.2 Environmental Exposure 46
8.2.1 Hospital Environment as a Source of Stress 46
8.2.2 Observation of Activities Relating to Others 48
8.2.3 Feelings of Intrusion 50
8.3 Competition for Care 52
9 Reflection on Findings 53
10 Discussion 55
11 Conclusion 58
12 Limitations 59
13 Recommendations 59
14 References 60
Appendices 70
Appendix 1. Search History 70
Appendix 2. Data Inclusion/Exclusion for Papers Considering
Fellow Patients in a Hospital Context
72
Appendix 3. Proposed Semi-Structured Interview Schedule 73
Appendix 4. Participant Debrief Information 75
Appendix 5. Letter of Ethical Approval - University 77
Appendix 6. Letter of Ethical Approval – Research Ethics
Committee
78
Appendix 7. Participant Information Sheet 81
Appendix 8. Consent Form 84
Appendix 9. Master Table of Themes: Evidence from the
Data
85
6
List of Tables
7
Table numbe
r
Description Page
1 Summary of studies 152 Extract from transcribed interview -Tracey 363 Example of Superordinate Themes - Tracey 374 Areas of similarity and difference 395 Comparison Across Cases 40
AbstractIn undertaking this qualitative study, my aim was to explore the lived experience of
patients in the Acute Medicine Unit (AMU) of a UK teaching hospital, to find out how it
felt to witness the distress of other patients in that setting. My findings demonstrated
that fellow patients do indeed give rise to anxiety, but I did not anticipate the nature of
this at the outset.
Background
Although the clinical aims of the Acute Medicine Unit have largely been met, insofar as
they have improved mortality rates and quality of care (Royal College of Physicians
2007), there is little evidence to suggest that the patient’s experience of the process
has been given enough appraisal (Scott, Vaughan and Bell, 2009). The fact that
several patients share a ‘bay’ means that they are likely to be exposed to each other’s
situations, giving rise to additional anxiety. This research aimed to establish whether
such exposure is psychologically stressful for patients in the AMU.
Study Design
Interpretive phenomenological analysis (IPA), was used to guide the study design. A
purposive sample of 4 patients who were admitted to AMU were selected and each
consented to an audio-recorded semi-structured interview, which was then transcribed
and analysed according to IPA principles (Smith, Flowers and Larkin 2009). I obtained
ethical approval from the University, the NHS Research Ethics Committee and Health
Research Authority before commencement of the study.
Findings
Unlike other studies, where patients had shared learning and a sense of camaraderie,
there was no evidence of any meaningful interaction between patients in AMU. There
appear to be several unique features of the AMU, namely the transient nature of
patients, the disparate presentations and the underlying anxiety surrounding an
unplanned admission, which set the AMU apart from other areas studied to date.
There were three main themes relating to fellow patients which arose. The first was
individual insecurities, which demonstrated that some participants displayed coping
strategies to help them deal with fellow patients, many choosing to avoid others to
minimise anxiety. The second was environmental exposure to fellow patients which
meant that participants had to cope with exposure to sights sounds and smells
8
resulting from proximity of others. The third and most surprising finding was that some
participants viewed fellow patients as being competition for care, which caused
anxiety due to their uncertain prognosis. There was minimal evidence that witnessing
the distress of fellow patients caused distress to patients in AMU, which was not what I
anticipated.
Discussion
The findings differed quite considerably from those anticipated, which meant that I had
to extend the scope of the literature search, having failed to identify papers that
adequately illuminated the subject area at the outset. This demonstrated that
qualitative research findings are not always easy to anticipate. I imagined that, because
I had been traumatised by my experiences as a nurse by witnessing patient distress,
that patients might also find this exposure difficult. Only one participant demonstrated
any concern over something that they witnessed, which I found surprising.
Recommendations
Given that this is a very small study, it would be interesting to conduct further research
into the psychological impact of sharing a space with fellow patients in the AMU, and to
further explore the notion that fellow patients represent competition for care in this
environment, an important finding given the current demand for emergency services
and difficulties with recruitment.
9
1. Study Aim
On commencement of this study my aim was to find out how it felt to be a patient in the
Acute Medicine Unit (AMU) surrounded by other patients, many of whom are likely to
display distressing symptoms or behaviours and having to witness this distress.
2. Background
Acute Medicine is a relatively new medical specialty, which came about in 2009
following the publication of the Royal College of Physicians Acute Medicine Task Force
recommendations (2007) advocating the importance of getting the right person, to the
right setting – first time. It was introduced as part of the drive to improve the
emergency care pathway, to facilitate efficient assessment and treatment of the
increasing numbers of urgent, undifferentiated medical patients presenting to the
Emergency Department (ED), or the General Practitioner (GP) and subsequently to
hospital.
The AMU, designed to manage this demand, is consequently a standard feature in
most National Health Service (NHS) hospitals today (Bell, Skene, Jones and Vaughan
2008). Admission to AMU is meant to facilitate a rapid, thorough assessment to
determine the severity of illness and to establish an appropriate treatment plan. The
usual focus in Acute Medicine is to ensure that the assessment process for these
patients is efficient and safe (Royal College of Physicians 2007). The main priority is to
ascertain which patients are the most unwell and at risk of deteriorating and dying if
they are not appropriately treated (National Confidential Enquiry into Patient Outcome
and Death 2005), which ones can be safely discharged home, and which ones need
inpatient referral to a specialist medical team. Patients are assessed and signposted
according to their clinical needs and most importantly, receive review by a senior
doctor within the first few hours (Royal College of Physicians 2007).
This systematic approach to patient streaming, has meant that the introduction of
AMU’s has demonstrated an improvement in mortality rates and a reduction in length of
stay. However, there is little evidence that they have contributed positively to patient
10
experience (Scott, Vaughan and Bell 2009, Sullivan, Harris and Bell 2013). Indeed,
there has been very little research to date to assess the psychological impact of being
admitted to AMU.
The nature of the AMU means that patients come and go frequently throughout the day
and night. Their individual presentations will vary from being minor to severe and life-
threatening, and because these patients are only just being assessed, their
circumstances are not always clear initially. This means that those patients who are
relatively well may be co-located for a time with those who are extremely sick. Such
experiences have the potential to be highly distressing for patients, especially since
they themselves may be feeling vulnerable due to their own admission to hospital and
uncertain clinical condition.
Benner defines stress as ‘the disruption of meanings, understanding, and smooth
functioning so that harm, loss or challenge are experienced’ (Benner 1989: p 59).
Admission to hospital is very likely to result in such feelings, leaving some patients
feeling vulnerable. Aside from the need to reassure patients, there are other reasons
to be concerned about stress and anxiety in hospitalised patients. There is
considerable evidence to suggest that psychological stress can delay recovery from
illness. Stress has been found to delay wound healing and adversely affect immune
responses, which mean that recovery from infections and other inflammatory conditions
can be delayed (Marshall 2011).
If anxiety due to hospitalisation has the potential to inhibit recovery, it is essential that
hospital environments are designed to minimise stress. However, it is not easy to
shield patients from fellow patients given the arrangement of hospital wards in the UK.
In most hospitals, the rooms in the AMU will be divided into ‘bays’ of between four and
six patients, each with a shared bathroom. A small number of patients are nursed in
single rooms, although these are usually reserved for patients with, or at risk of
infection. The bed spaces in the bays are usually separated by curtains, to allow
patients some privacy when receiving personal care. The curtains do not, however,
prevent others around from hearing private interactions. As such patients sharing ward
spaces in this way are likely to be privy to a considerable amount of information about
each other, despite the best efforts of the staff to maintain confidentiality. Indeed, in his
essay on patient-patient interaction, Album (1989) suggested that, during an inpatient
stay, staff members are present for a relatively short period in comparison to the time
11
spent with other patients. It is possible, therefore, that these inter-patient relationships
are important, with the potential to have a psychological impact, either in a positive or a
negative way.
The focus of this study was on the effect of fellow patients in the AMU. In short how
did it feel to be a patient in AMU witnessing the distress of others during an unplanned
hospital admission?
2.1 Personal Motivation
The inspiration for this study has evolved over many years. My own experience as a
nurse of thirty-seven years in an acute hospital, has left me with indelible memories of
traumatic scenes in which I have witnessed extreme suffering, pain and death. For
many years I have been troubled by the fact that if I have witnessed such traumatic
events in my day to day role, isn’t it possible that patients nearby, but not involved in
the trauma will also have witnessed at least part of the ordeal? It is therefore
conceivable that patients may have been traumatised by the event, just as I was,
without having the benefit of any sort of debrief about what they witnessed or any
medical knowledge to allow them to rationalise events. Furthermore, isn’t it possible
that the inexperienced patient may find the less traumatic events that form part of my
day to life, to which I am oblivious, stressful. Things like drips, catheters and cardiac
monitors, which to me are simply tools of the trade, may induce panic in a person who
does not know what they are for. As a seasoned professional I worry that I, and my
fellow nurses, may have lost sight of the things that have the capacity to induce stress
in patients, and I was keen to explore the idea further.
The second driver relates to the specialty in which I work as a nurse; Acute Medicine.
Is it possible that the context of the Acute Medicine Unit (AMU) as a busy and
potentially chaotic environment, can exacerbate the potential for causing unnecessary
psychological trauma to patients because of the very nature of the specialty?
12
3. Literature Review
3.1 Background and Rationale for Review
There has been a long-standing debate about the need for a literature review prior to
conducting qualitative research, especially in studies using a phenomenological or
grounded theory approach (Fry et al 2017). Strauss and Corbin (1998) warned that
prior knowledge of a topic can hinder creativity and cloud judgement, leading the
researcher towards a predetermined line of enquiry or perspective thereby masking
original findings. However, it can also be argued that a literature review is an essential
component of any study, to enable identification of the gap in knowledge and provide
the rationale for the research (Todres and Holloway 2010). An exploration of the
existing literature is usually required before the proposal can be given ethical approval,
which means that it would be difficult to ignore (Fry et al 2017). For this reason, I felt it
was appropriate, to undertake a review of the literature prior to commencement of this
study to inform critical awareness of the subject, establish the most relevant resources
in the subject area and obtain a flavour of the prevailing research about patient
interactions with each other in various hospital contexts (Moule and Goodman 2014). In addition, it was important to establish that the proposed study was relevant and
original, as there would be very little point in duplicating previous work (Holloway and
Galvin, 2017).
3.2 Search Strategy
A systematic literature search was conducted in the online databases CINAHL,
Medline, PsycARTICLES and PsycINFO. The inclusion criteria for studies were
interaction with fellow patients in a hospital context. Studies were only considered
if they were published in English, as translation services were not available.
It is acknowledged that finding relevant qualitative research through systematic search
strategies can be difficult because of the lack of sensitivity and precision in relation to
search terms, and can result in the generation of many resources, which on closer
13
inspection prove to be irrelevant (Robson and McCartan, 2016). This issue made
searching laborious.
A search period from 1985 to 2017 was selected to maximise the identification of
relevant literature in an under-researched field.
The key search terms were fellow patient, co-patient, patient-patient or roommate
which generated 92,198 items. The inclusion of the terms adult, hospital; and stress or distress combined with AND, OR and NOT produced 393 items (Appendix 1). The
titles of these papers were reviewed, and 368 papers were excluded as they clearly did
not fit the inclusion criteria. An abstract review of the remaining papers identified 5
studies that were of interest. These were obtained in full text which confirmed that they
fit the inclusion criteria.
The reference lists of these papers were reviewed for any other papers that were of
interest. Four further papers were identified. A total of 9 papers were found which
discuss patient interactions with each other in a hospital context (Appendix 2).
Given that one of the studies was a meta-synthesis which included two of the identified
studies, the decision was made to discard the two duplicated studies, to prevent
unnecessary bias. This left seven studies of interest.
3.3 Summary of Studies
A summary of the included studies is found in table 1. The papers all considered
interaction between hospitalised patients in a variety of clinical settings including
Surgery (Kulik et al, 1993, Kulik and Mahler 1987, Laurson et al, 2016), Oncology
(Larsen et al, 2014, Anderson et al 2015) and Infectious diseases (Birkelund and
Larsen, 2013). None were specific to Acute Medicine or any other urgent care setting.
14
Table 1.
Authors Title Aim Methodology Participants Findings Quality Assessment (CASP)
1.
Larsen, Larsen
and Birkelund
2014
(Denmark)
A companionship
between strangers –
the hospital
environment as a
challenge in patient-
patient interaction in
oncology wards
To explore the
importance of patient-
patient interaction in
patients with cancer in
hospital
Qualitative
Ethnography -
Participant
observations and
individual
interviews
85 observed
20 interviewed
Patients had ambiguous views
regarding fellow patents and the
environment. Whilst the environment
enforced stressors such as loss of
privacy, dignity and control, there
was good company and support from
fellow patients.
Relationship
between
researcher and
participant not
clarified but
otherwise good
quality paper
2.
Anderson,
Larson and
Birkelund 2015
(Denmark)
A companionship
between strangers –
learning from fellow
people with cancer in
oncology wards
To identify and discuss
learning from
experience among
hospitalised patients
with cancer
Qualitative
ethnographic.
Participant
observation and
qualitative
interviews
85 patients
with cancer
observed in an
oncology ward
and 20
interviewed
Hospitalised patients with cancer
learnt about living with cancer from
sharing experience and information
with other patients. Patients were
deemed to be a credible source of
information as they had first-hand
knowledge. Fellow patients are a
source of support in this context not
distress.
Same study as
above but
different focus
Good quality
paper
3. Being a fellow patient To explore inpatients Qualitative 15 surgical The paper suggests that there are Not ethically
15
Laurson,
Lundby,
Danielson and
Rosenburg
2016
(Denmark)
to a critically ill patient
leads to feelings of
anxiety. – an interview
study
experiences being a
fellow patient to
patients who become
critically ill
phenomenological
study
patients many emotions and feelings elicited
due to proximity to critically ill fellow
patients. This led to anxiety for
many, due to feeling helpless and ill-
informed about what was happening.
There was discussion about the lack
of professional support, both due to
the lack of information and the lack of
attention resulting from the staff
attending to the sick patient.
approved (not
required in
Denmark for this
type of study)
other aspects
lacked clarity
therefore judges
to be low quality
4.
Birkelund and
Larsen 2013
(Denmark)
Patient-patient
interaction – caring
and sharing
To provide an
understanding of the
significance of
hospitalised patients
interpersonal
interactions with fellow
patients
Qualitative
ethnographic
approach using
participant
observation and
semi-structured
interview
16 observed
6 interviewed
in an infectious
disease ward
The findings show that patients
contribute to the help, support and
information received from healthcare
staff, suggesting that the patient
community is an important source of
support for patients. Patients
increasingly turned to fellow patient
for help as they represent a more
credible source of information
because of their shared experiences.
Concerns over
ethical approval
and recruitment
strategy
ambiguous. Not
high-quality paper
5. Stress and affiliation:
hospital roommate
To determine whether
room assignment with
Quantitative
approach using
53 elective
preoperative
Participants were assigned to a
hospital roommate who varied in
Quantitative study
16
Kulik, Moore
and Mahler
1993 (USA)
effects on preoperative
anxiety and social
interaction
another preoperative
patient to which the
patient felt affiliated
due to their shared
situation reduced
anxiety
questionnaires male patients
were studied.
The type of
surgery varied.
terms of the similarity of the
roommate's health problem and
surgical status. The similarity of a
roommate's health problem to that of
the patient exerted little detectable
influence. However, patients
assigned to a preoperative roommate
were more anxious compared with
those assigned a postoperative or
nonsurgical roommate. Affiliation was
also significantly greater with fellow
preoperative roommates compared
with postoperative roommates. The
possibility that the obtained
roommate effects on anxiety are
mediated directly by affiliation is
explored
of unclear design.
Aims of study,
design and
findings very
unclear. Judged
low quality
6.
Kulik, Mahler
1987 (USA)
Effects of preoperative
roommate assignment
on preoperative
anxiety and recovery
To examine the impact
that preoperative
roommate assignment
has on surgical
Quantitative
approach using
coding of
measures such as
27 male
coronary
bypass
Patients were randomly assigned to
roommates that were either
undergoing similar procedures or
different surgical procedures and
RCT design but
recruitment and
randomisation
process not clear.
17
from coronary bypass
surgery
patients and the role
that fellow patients
have on coping with
major surgery
self-reported
preoperative
anxiety,
postoperative use
of pain
medication,
postoperative
ambulation and
speed of recovery
patients who were either pre or post-operative
at the time of room assignment. The
paper suggests that the similarity in
surgical procedures had very little
impact on recovery, but allocation to
a post-operative roommate made a
difference to the recovery of the
patient. The claim is that observation
of the post-operative phase in a
fellow patient, before surgery
reduced anxiety, improved
ambulation and reduced the need for
pain relief post-operatively.
Results not
clearly displayed
so unable to
assess whether
all participants
accounted for.
Judged low
quality
7.
Larsen, Larsen
and Birkelund
2013
An ambiguous
relationship – a
qualitative meta-
synthesis of
To provide a clear
view of the existing
knowledge regarding
patients’ significance
Qualitative meta-
synthesis
7 qualitative
studies
originating
from Scotland,
There were 3 themes identified; the
fellow patient as an enforced
companion, the fellow patient as an
expert on illness and the fellow
Quality
assessment
process for
papers
18
(Denmark) hospitalised somatic
patients’ experience of
interaction with fellow
patients
to fellow patients
during hospitalisation.
UK, Norway
and Denmark
patient as a care provider.
Regarding being an enforced
companion, although interaction with
fellow patients was a good
experience for some, it was a source
of distress, sadness and
hopelessness for others. For some
witnessing other people’s illness was
a burden and impeded recovery.
ambiguous.
Unclear whether
ethical
considerations
clarified.
Otherwise fair
quality paper
19
3.4 Quality Assessment of Studies
All the papers were assessed for quality using the relevant CASP tool as detailed in table 1
(CASP 2018). Only two were felt to be of a high standard (Larsen et al 2014, Anderson et al
2015), the others having issues which affected the reliability of their findings.
The papers by Kulik, and Mahler (1987) and Kulik, Moore and Mahler (1993), which looked
variously at the effect of hospital roommates on postoperative recovery and preoperative
anxiety, were unclear about their objectives with the consequence that their results were
difficult to understand or attribute to the study. Interestingly they were the oldest of all the
studies and were possibly influenced by the methodological approaches prevalent at the
time. Perhaps a mixed methods approach might have given more credibility to the results,
given that the missing element in both studies was the patients perspective of their
roommate allocation, although both papers indicated the need for further study in the area.
The most recent study (Laursen et al 2016), bore the most similarities to this present study in
terms of its consideration of fellow patients as a source of distress. It looked at being a
fellow patient to a critically ill patient in a gastroenterology unit in Denmark, and how it felt to
witness this. Unfortunately, it was disappointing in the superficial and sometimes inaccurate
interpretation of the prevailing literature and limited explanation of methodology and findings.
Neither did it appear to have ethical approval, as the authors claimed that this was not
required in Denmark for a study of this kind.
Similarly, two other Danish papers (Birkelund and Larsen 2013, Larsen, Larsen and
Birkelund 2013) did not demonstrate robust ethical approval, which was a concern given the
nature of the studies.
The findings must therefore be considered in the context of the quality concerns.
3.5 Findings from Literature
The most striking observation was that none of the studies were conducted or published in
the UK. Most of the studies originated in Denmark with two originating in the United States
of America. Interestingly, there appeared to be a consensus across all the studies that the
importance of patient interactions with each other had been largely overlooked, in favour of
studies investigating patient-nurse or patient-doctor interactions, even though the greatest
proportion of patients’ time in hospital is spent with other patients in comparison to time
spent with staff members (Larsen et al 2014, Birkelund and Larsen 2013, Anderson et al
2015, Larsen et al 2013).
20
3.5.1 Ambiguous relationship
Almost all the papers referred in one sense or another to the ambiguous nature of the
relationship with fellow patients. For many patients forming a relationship with fellow
patients was viewed as both a positive and negative part of their hospital experience. It
added to their ability to cope (Larsen et 2014), but sometimes this relationship also became
a burden and caused additional anxiety (Larsen et al 2013, Birkelund et al 2013, Larsen et al
2014, Laursen et al 2016).
3.5.2 Enforced companionshipThere was frequent reference to the notion of fellow patients as enforced companions
(Larsen et al 2013). Some found it to be noisy and inconvenient, due to patients smelling,
snoring or having noisy relatives (Larsen et al 2013). For many this enforced intimacy was a
source of distress, because patients were privy to almost everything relating to those around
them (Larsen et al 2013, Laursen et al 2016). Some patients reported feeling exposed and
vulnerable, being in constant view of others, and were keen to seek refuge from fellow
patients which was not always possible (Larsen et al 2013, Larsen et al 2014). This lack of
privacy could result in patients withholding information from the medical team due to
enforced ‘public privacy’, because other patients could overhear their private interactions
(Larsen 2014, Birkelund et al 2013).
However, there appeared to be a dilemma around wanting to be alone versus wanting to be
with others. Long periods of inactivity meant that for some, fellow patient interaction was a
welcome diversion, and when asked, many patients said that on balance they preferred to
share a room with others (Larsen et al 2013, Birkelund et al 2013, Larsen et al 2014).
3.5.3 The importance of humour
Several papers referred to the use of humour as a coping strategy. It was felt that humour
created a bond of fellowship with others because it relieved anxiety and was felt to be
liberating in the sense that it allowed patients to express their fears freely (Birkelund et al,
2013, Larsen et al 2013).
3.5.4 Negative aspects of the relationship
There was also a great deal reported that was perceived as being negative. Witnessing
dramatic events including the death of a fellow patient was seen to increase patient anxiety
about their own illness, especially in the face of apparent evasiveness from staff about the
event, leaving patents feeling unsupported (Laursen 2016, Larsen et al 2013). Worrying
about other patients became an additional source of distress, sadness and hopelessness for
some patients (Birkelund et al 2013, Larsen et al 2013, Larsen et al 2014).
21
3.5.6 Fellow patients as care providers
Several studies referred to fellow patients as care providers (Laursen et al 2016, Larsen et al
2013, Birkelund 2013). Some reported a distinct sense of community among fellow patients,
characterised by compassion and a need to look out for each other, which in some instances
was viewed as an obligation or burden (Larsen et al 2013, Laursen et al 2016). Patients
were seen to carry out small practical tasks such as clearing trays, or giving information
about ward layouts and routines, which some studies suggested helped maintain a sense of
independence (Birkelund et al 2013, Larsen et al 2013). Sometimes, however, patients felt a
sense of responsibility which resulted in them feeling frustrated as there was little they could
do to help (Laursen et al 2016).
3.5.7 Learning from fellow patients
Learning from fellow patients was another theme. One aspect related to learning ‘how to be
a patient’, which included ward rules such as use of bathrooms, timing of ward rounds and
observation of personal space (Anderson et al 2015, Larsen et al 2013). Another related to
fellow patients as experts in terms of the illness or disease. The studies that considered
patients who were similar in terms of their presenting illness, indicated that patients often
found that they shared a sense of fellowship due to their shared understanding of symptoms
and treatment. Patients often valued the information gained from fellow sufferers, whose
experience and advice they appreciated (Anderson et al 2015, Larsen et al 2013).
In summary, although there is some evidence around the significance of fellow patients
during a hospital stay. The evidence to date is of questionable quality.
All the papers included in this review asserted that the subject of fellow patients has been
largely overlooked. Indeed, there has been almost no research in the UK, and although
there has been research in other countries in this field, it cannot be assumed that this is
generalisable to the UK setting, as international health care systems vary considerably.
Similarly, there has been no research in the context of urgent or emergency care in any
country, which indicates that the present study has the potential to bring new insight into the
experiences of patients in this context. It is therefore fair to conclude that there is indeed a
gap in the evidence to which this study will contribute.
22
4 Methodology
4.1 Framing the Study
Before embarking on a research project, it is necessary to first ascertain the theoretical
framework which underpins the beliefs, ideas, concepts and assumptions guiding the
research approach (Mackenzie and Knipe 2006). This enables logical choices to be made
around methodology and research design, which in turn validates the approach.
Broadly speaking there are two main world views. Firstly, the positivist perspective, is based
on the belief that there is just one version of reality or truth. Positivist studies are usually
quantitative in nature, utilising deductive reasoning, within very fixed design methods, the
emphasis being on statistical analysis of quantitative data, in pursuit of findings which can be
generalised and applied to wider populations (Moule and Goodman 2014). The aim is
usually to prove or disprove a previously stated hypothesis and there is a view that findings
reflect the absolute, unequivocal ‘truth’, and the results established are totally independent of
the research process and the researcher (Parahoo 2014). Quantitative research usually
requires large numbers of participants or data sets before results are considered relevant
(Polit and Beck 2012).
The interpretivist perspective is an alternative viewpoint at the opposite end of the spectrum,
in which it is acknowledged that reality is subjective and is experienced differently by
different people dependant on their perception. Methodologies under the interpretivist
umbrella are mostly used to explore what it is to be human rather than to prove scientific
theory (Smith, Flowers and Larkin 2009, Parahoo 2014). ‘Truth’ may vary depending on
individual perception, which is dependent on many things including, culture, experience,
education and personal beliefs. This means that there can be ‘multiple realities’; different
perceptions of reality depending on each person’s perspective (Parahoo 2014).
Studies following an interpretivist approach are usually qualitative and are characterised by
the researcher flexibly interacting with the participants as opposed to observing and
objectively measuring phenomena. It uses inductive processes, with the aim of developing
contextual understanding of a phenomenon, the emphasis being on narrative information.
(Polit and Beck, 2012). Qualitative data is very specific to the context in which it is collected
and is therefore not automatically generalisable, but it seeks to present conceptual
frameworks or ideas which may, in theory, be applicable to other settings (Scotland 2012).
Unlike quantitative methodologies, qualitative research requires small participant numbers,
the focus being on depth of enquiry rather than breadth (Denzin and Lincoln 2011).
23
For the purposes of this study the research question focussed how it felt for a patient to
witness the distress of fellow patients in an AMU. The emphasis on feelings and the patient’s
own perspective suggested that it fitted best within the interpretivist camp, because it is
unlikely that ‘feelings’ can be objectively measured. Qualitative research methods share
several characteristics. These include a belief in multiple realities, inductive reasoning, a
commitment to the participants viewpoint, acknowledgement of the researcher’s participation
in the research and the reporting of data in a literary style rather than a numerical dataset
(Moule and Goodman 2014). However, although qualitative research methodologies
including ethnography, grounded theory and phenomenology, may share these
characteristics, they differ greatly in terms of the philosophical assumptions on which each
approach is based (Streubert and Carpenter 2011). It is the ability to articulate which
approach and philosophical traditions have guided the study that give it credibility (Lopez
and Willis 2004).
This study focused on the patients’ perspective of how they felt witnessing the distress of
fellow patients in the context of an AMU, so, having considered each of the possible
approaches, I felt that the question fitted most comfortably within a phenomenological
framework. Phenomenology essentially seeks to understand experiences from the
perspective of the participant; their ‘life-world’ or lived experience (Flood 2010). This
approach assumes that reality is best understood when ‘seen though the eyes’ of the person
who experienced the situation first-hand, which is expressed eloquently through their own
use of words and language (Matua 2015).
Phenomenology is a philosophical approach which was first described in the 18th century
and has over the years been developed and debated by eminent philosophers including
Husserl, Heidegger, Gadamer and Merleau-Ponty, though it was not initially developed as a
set of rules or procedures for conducting research (Earle 2010).
There are two main phenomenological approaches; namely descriptive (eidetic)
phenomenology and interpretative (hermeneutic) phenomenology (Lopez and Willis 2004).
The former was mainly advocated by Husserl during the early part of the 20th century. He
sought to study often mundane, human experiences in depth, to identify common themes or
‘essences’ as described by participants. Husserl believed that it was necessary for
researchers to suspend, or ‘bracket’ experience, knowledge and preconceptions so that they
approached the phenomenon in question neutrally, and simply described it without prejudice
(Todres and Holloway 2010). This attempt at objectivity was intended to increase credibility
of findings by filtering out researcher bias and exposing the pure essence of experience
(Denzin and Lincoln 2011)
24
The concept of bracketing was later contested by philosophers, including Heidegger, a
former pupil of Husserl, who believed it was not possible to truly bracket preconceptions, but
that researchers should instead utilise their knowledge and experience to add greater depth
to understanding how people experience phenomena in the way that they do (Parahoo
2014).
I concur with this interpretative view. I believe that it is unrealistic to think that true
bracketing can be achieved when the clinical area that is the subject of the research is such
a fundamental part of my knowledge and experience. It is impossible to ‘unknow’ what is
known, and in fact it is impossible to even begin to identify and isolate what is known after so
many years in clinical practice. Instead, my view is that this knowledge can be used to
enable the participant to give voice to what they are feeling; to help interpret feelings in a
way that the individual would not have been able to express. The active interpretation of
these ‘taken for granted’ concepts by the knowledgeable researcher can help to bring to light
deep-rooted phenomena. The resulting data set thus becomes an amalgamation of the
participants and researcher’s perspective, in stark contrast with the Husserlian, bracketed,
description of events and feelings. However, to give credibility to these interpretations, it is
essential that as the researcher, I demonstrate an awareness of my own impact on the
findings, critically analysing this influence and using it to enhance the understanding of the
data collected, a process known as reflexivity (Streubert and Carpenter 2011).
4.2 Approach
For this study, an interpretative approach, known as Interpretative Phenomenological
Analysis (IPA), as described by Smith, Flowers and Larkin (2009) was selected. The use of
IPA as a research methodology has grown greatly in the field of nursing research over the
last decade (Larkin and Thompson 2011). There are three distinct elements to IPA which
set it apart from other phenomenological approaches (Tuffour 2017). Interpretative
Phenomenological Analysis is underpinned by the principles of phenomenology as
collectively described by four phenomenological philosophers Husserl, Heidegger, Merleau-
Ponty, and Sartre, the overall aim being to understand the world from the lived experience of
the participant and the meanings that individuals attribute to their experiences (Tuffour
2017). Although the philosophers who influenced IPA have separately developed their own
perspectives on phenomenology, they all have very different perceptions of its perception
and application, which has generated some criticism of IPA as a research methodology
(Shinebourne 2011). However, Shinebourne (2011) suggests that IPA ‘operates within the
intellectual currents of phenomenology’ in terms of pursuing the meaning of human
experience to individuals, and the combined ideas from these different philosophers
25
complement each other and contribute to a ‘mature, multifaceted and holistic
phenomenology’ (Tuffour 2017).
The second key characteristic of IPA is hermeneutics, defined as the science of
interpretation (Benner 1994). This refers to the process that the participant goes through to
make sense of their experience, using their individual beliefs and prior knowledge to guide
them. IPA takes the notion of hermeneutic interpretation a step further, by introducing the
idea of ‘double hermeneutics’, which is defined by Smith Flowers and Larkin (2009:3) as the
researcher ‘trying to make sense of the participant trying to make sense of what is
happening to them’. This enables the researcher to tease out the underlying concepts and
give light to the ‘taken for granted’ aspects of a specific experience.
The third characteristic of IPA is ideography, which is concerned with understanding ‘the
perspective of particular people, in a specific context’ (Shinebourne 2011). This means that
it is well suited for use in nursing research, as it enables nurses to explore individual patient
experiences in very precise contexts. This means that the uniqueness of the patients
experience in the Acute Medicine Unit can be considered.
From a pragmatic perspective, another advantage of using IPA, from the perspective of a
novice researcher, is the fact that it has been defined and described as a research approach
that is easy to replicate in clinical practice (Biggerstaff and Thompson 2008). This contrasts
with other phenomenological approaches which seem to exist as philosophical frameworks,
which are not easy to translate into practical research methodologies.
4.3 Inclusion Criteria
The study was conducted on the Acute Medicine Unit (AMU) in a UK teaching hospital. Four
participants were selected according to the following inclusion criteria:
Adult (over 18 years)
Patient being discharged home from AMU following appropriate recovery
Not acutely unwell
Able to understand the research process and consent to interview
Able to speak English fluently
26
4.4 Sample selection
The sample size of four was based on a recommendation of between three and six
participants for a Master’s level study of this nature (Smith, Flowers and Larkin 2009: 51). A
purposive sample was used which is defined as being a selection of individuals that are
expert in the phenomenon of interest, in this case, sharing a room with other patients in the
AMU and witnessing their journey (Etikan 2016).
4.5 Data collection
Each participant consented to taking part in an audio recorded semi-structured interview
conducted by the researcher (Appendix 3), which took place in a quiet room on the ward
prior to discharge home. I then personally transcribed the interviews.
The participants were all patients accessed on the day of discharge from the Acute Medical
Unit (AMU). I approached the nurse in charge of clinical care for the patients to ask whether
they fit the inclusion criteria for the study. All patients had been given a participant
information sheet some time prior to their discharge decision in line with ethical committee
approval. Those patients who fit the criteria were approached by the nurse in charge of their
care and asked whether they wanted to take part. I then approached those in agreement
and consent was obtained. I had not been involved in the patient’s care and had no prior
knowledge of the circumstances of their admission or treatment. Their personal details were
therefore not known to me prior to the first meeting and any information discussed was
offered during the interview.
4.6 Data Analysis Process
The transcribed interviews were analysed according to Smith Flowers and Larkin (2009), in
the following way:
1. The researcher attempted to become immersed in the interview, by listening to and
reading the transcript many times.
2. Exploratory notes were made about the content of the interview and the language
used, which reflected the researchers understanding of what was being said.
3. Both the transcript and the exploratory comments were reviewed to identify the
themes emerging from both transcript and researcher notes
4. These emergent themes were then grouped together into super-ordinate themes,
according to their similarity and in some cases their evident contradictions. The
27
process of de-contextualising the transcript in this way enabled the researcher to
uncover the essence of the experience.
5. The process was repeated for each transcript separately
6. Finally, all the cases were brought together to look for patterns and connections or
contrasts between the cases.
7. Findings were shared with the research supervisors to sense check interpretation of
findings.
4.7 Reflexivity: Exploring the Impact of the Researcher
I kept a diary of the process for each case, which allowed a record to be kept of my thoughts
and feelings and how they may impact on the research (Berger 2015, Clancy 2013).
The aim of phenomenological research is to explore and understand the everyday
experiences of participants, and to give consciousness to hitherto taken for granted
phenomena (Polit and Beck 2012, Matua 2015). To achieve this, researchers commonly
use in depth interviews as a data collection technique, which demands close interaction
between the participant and the researcher. These interactions are not objective
observations because they demand dynamic interface between the participant and the
researcher, which means that the researcher has the potential to influence the participants
response. It is therefore essential that the researcher adopts a reflexive approach, to
provide transparent information about their own position and personal values (Walker et al
2013). Reflexivity is defined as the responsibility of researchers to examine their influence
on all aspects of the research process and to critically analyse this to attain as objective a
view as possible, always being aware that subjectivity cannot be totally eradicated (Streubert
and Carpenter 2011). Without this reflexive stance the validity of the findings is likely to be
called into question. (Newbury 2011). According to Berger (2015) the personal perspective
of the researcher influences the way in which they view the world, use language, pose
questions and interpret the information gathered from participants, so it is vital that the
researcher is mindful of their impact from the outset.
In relation to the present study, my motivation as a researcher came from my previous
experiences as a nurse and being traumatised by the things I had witnessed. My view was
that patients who had witnessed similar events could have been equally traumatised, an
assumption that may or may not be correct, but one that established my position. From the
outset I had to make a conscious effort not to express this to the participants, but to hear
their accounts and appreciate their unique perspective. In recognition of my potential bias, I
decided not to define ‘distressing’, but instead to leave it to the participants to define, if
28
indeed they perceived any distress at all. This was an important decision as I was able to
appreciate their perspective which I would not necessarily have predicted. It also changed
my position somewhat, from being an expert in the field to a novice, as I was learning new
information from the expert participants rather than imposing my ideas (Newbury 2011).
I was also aware of my dual position of senior nurse within the department and researcher,
and I wondered how this might influence the research. Clancy (2013) suggested that such
power relationships are important as they affect the way that participants view the
researcher and can influence what they share. Participant perception of my nursing role
may have influenced the way they regarded me, so I decided to try to augment my
researcher role and minimise my nursing identity by not wearing a uniform. However, in the
interests of transparency, I did explain to participants that I was a Consultant Nurse attached
to the clinical area as well as a researcher, which may have had the opposite effect by
making the participants perceive an even greater power imbalance. This could have
affected what they chose to share with me. I noticed, for example, that Elsie was keen to tell
me about a member of staff, which may on reflection have been because of her perception
of my nursing role, and her impression that I could recognise or reward the individual after
the event.
As a novice researcher, I sometimes struggled with my role as a researcher in the
department that I worked in. I felt myself being drawn back to my caring role at times during
the interviews and I had to consciously distance myself from this. I had recognised the
potential for this to happen when I was designing the study. For example, in recognition of
the fact that participants might find the process unsettling, I initially planned to follow them up
to make sure they did not need support. I reflected on this and realised that this was not
necessary for the research but was the result of my nursing instinct. Following discussion
with my supervisors I opted to provide participants with the contact details of organisations
that could offer psychological support if they needed it after the process, which was deemed
appropriate by the ethics committee (appendix 4). Role confusion of this nature has been
well documented in situations where nurses conduct research in their area of work and has
led to premature conclusions and critical observations being missed, because the researcher
is native to the environment (Clancy 2013). It has also been documented that insider
research can have advantages as it gives a greater understanding of the culture being
studied and allows an established intimacy which promotes both the telling and the judging
of truth (Unluer 2012). It was therefore necessary to be aware of and balance all these
factors when conducting this research.
Possible confusion over my role had the potential to confuse the function of the interview for
the participants. A research interview is not intended to be therapeutic intervention, but it is
29
possible that participants may view it as such, revealing more than anticipated and running
the risk of manipulation as the researcher exploits the situation by probing even further
(Newbury 2011). Carolan (2003) suggested that rather than being therapeutic the
relationship can be viewed as reciprocal, because both parties gain something from it,
although I took care not to overstep the boundary into offering therapy. I did, however, have
a feeling that participants seemed relieved to have the opportunity to express themselves in
the interviews.
As well as ensuring participants were well supported I came to understand the importance of
researcher support. One interview, the one with Tracey, was very difficult for me. She
shared some extremely traumatic personal experiences which was very hard to hear. She
told me that she had suffered abuse at the hands of more than one relative, and that she
was estranged from her mother as a result. Her family ties had ended with the recent death
of her sister at the age of 41, leaving her with no social or psychological support.
I had very mixed feelings during this interview. Firstly, I felt extremely guilty for troubling
Tracey with my small project, when she had so much to worry about and I considered
discontinuing the interview after the first few minutes. However, given that Tracey
understood the process and had signed the consent form without coercion, I decided it
would have been disrespectful and patronising for me not to let her continue. I felt that she
had a right to be heard and I had a duty to empower her through the research. Her
background and experiences and therefore her life world, were different to mine so it was
especially important to try to see the AMU experience from her perspective. In fact, she
gave some fascinating insight that was unexpected for me and made me appreciate the
unpredictable nature of qualitative research and therefore the value in doing it (Gerrish
2011).
I admit to feeling slightly alarmed by her disclosure during the interview and, worried that I
might struggle to keep it on track. For a split second I considered my own agenda rather
than Tracey’s, but I recognised this early in the interview and tried to let it take its natural
course. As an experienced nurse I was well equipped to deal with difficult conversations
and I was concerned that a clumsy attempt to stay on script might seem to trivialise or
dismiss the importance of the intimate details that Tracey was sharing, so I tried to handle
the situation by actively listening and allowing her to speak. I managed to gain some
valuable information despite the slightly unorthodox approach.
I felt very self-conscious to begin with about the interview process, especially during the first
interview. It was harder than I had imagined trying to keep to the semi-structured guidance
whilst appearing to have a spontaneous conversation. During the first interview with Jim I
felt restricted by the rigidity of the schedule until I realised that the interview guide is exactly
30
that; a guide, and that it did not need to be rigidly adhered to, as it was important to have
enough flexibility to explore emerging ideas. Despite this realisation, I still felt that there
were questions that with hindsight I wished I had asked. I would like to have explored the
notion of ‘compassion’, mentioned on several occasions by Pete, in terms of what that meant
to him and how it made him feel. I sensed that I was missing an important essence because
I had not explored it fully.
The presence of the audio recorder seemed intrusive at first, but I was surprised at how
quickly it was forgotten as the interview got underway. That was true for all the interviews,
except for Elsie, who seemed to be inhibited by the presence of the machine because she
spoke freely and animatedly when it was switched off. Al-Yateem (2012) noted that when
interviews were not recorded they tended to be more spontaneous and sociable for some
participants, so it is worth considering that the mode of data collection can have an impact
on the findings.
Although I tried to ensure the interviews were being conducted in a safe, quiet area I realised
when I replayed the recordings how noisy the environment was. I was able to hear distant
voices telephones and nurse call bells ringing, and I wondered whether this had impacted on
the participants in terms of how relaxed they felt, although I do not recall even being aware
of the noise at the time. I had to remind myself that this is possibly because I am native to
the environment in a way that the participants are not, and it occurred to me that had I
conducted the interviews away from the ward altogether this might have been more
comfortable, and it might also have addressed the perceived power imbalance by providing
neutral ground for both parties, but having detailed the plan in the ethics application I was
not at liberty to change it easily.
The role of reflexivity in qualitative research is to acknowledge the impact of the researcher
on the planning, conduct and interpretation of the findings and researcher awareness of their
own motivation and positionality in relation to the research is vitally important to ensure that
research findings are valid and reliable (Walker et al 2013).
Having explored my own perspectives in this regard I have attempted to adopt an objective
stance, although my own humanness prevents me from being able to achieve this
completely.
5. Ethics and Governance
Arguably, the most important aspect of a research study, especially one that involves
patients, is to ensures that the study design fully addresses any ethical dilemmas that may
arise. The major ethical issues considered during the study design phase were: informed
31
consent, the principles of beneficence (benefits of participation) versus non-malificence (no
harm done because of the process), respect for anonymity and confidentiality (Fouka and
Mantzorou 2011).
Ethical approval for the study was required both from the university, as the study was part of
an academic award (Appendix 5), and the NHS Research Ethics Committee and Health
Research Authority (Appendix 6), as the study involved patients, to demonstrate that
appropriate consideration had been given to all these concerns.
Informed consent is an essential element of any study in which participants provide
information from which they may be identifiable (Streubert and Carpenter 2011). It enables
participant autonomy because they can choose whether they want to take part, based on
adequate understandable information being made available (Polit and Beck 2012). To this
end, potential participants were given a participant information sheet at least 8 hours prior to
their anticipated participation which explained the purpose of the research in detail and the
process that would be followed, to give them time to think about whether they wanted to take
part (appendix 7). They were reassured that their decision to participate or not would not
affect their care or any other aspect of their hospital stay. All participants were asked to sign
a consent form prior to their interview, which explained that they had the right to withdraw at
any point up to two weeks after their interview, if they should change their mind (appendix 8).
They were given my contact details in order that they could do so if they chose.
The unpredictable nature of qualitative research means that it can be difficult to foresee what
will arise from the interviews, especially when the subject under scrutiny has the potential to
distress the participants, as it did in this case. It has been suggested that although some
participants may find the opportunity to discuss their observations cathartic, others may find
that they continue to be moved by them, cognitively and emotionally beyond the research
experience (Murphy et al 2016). Gerrish (2011) pointed out that sensitive research has the
potential to distress both participants and researchers, so it is important that both receive
appropriate support during and after the process. To this end the participants were given a
participant debrief sheet, which gave contact details for organisations that could help if they
felt that further psychological support was required (appendix 4). I had access to
experienced supervisors who were able to offer support if required. The safeguarding of all
contributors in this way is an essential part of any research study to ensure that the study
does not pose a risk to the participants, researchers, or organisational reputation because of
the research activity (Silverman 2010).
32
The potential risks to the participant in terms of their physical welfare was assessed, so that
they could only be recruited after the acute phase of their illness had settled, and they were
well enough to go home (Houghton et al 2010). I consulted with the clinical team caring for
the patient to ensure that the patient fit the inclusion criteria before approaching them to ask
if they want to participate in the study.
The issue of confidentiality and anonymity can be problematic in qualitative research. Small
sample sizes and the narrative nature of findings can be challenging, as participants may be
able to recognise their contributions in the final report (Streubert and Carpenter 2011).
Participants were reassured that pseudonyms would be used in order that they could not be
identified (Guenther 2009), and transcripts of interviews and other identifying information
was stored as encrypted electronic files accessible only to me, to ensure that it remained
confidential. Participants were assured that all data pertaining to them would be destroyed
on completion of the project. Because I consulted the clinical team about the patients’
suitability to participate, I did not require access to personal details or medical notes, so
these did not form part of any data collected.
6. Participants
6.1 Jim
Jim was a 62-year-old married gentleman admitted following an episode of palpitations. He
worked at the hospital in a clinical role and had become acutely unwell whilst at work. He
had been admitted to AMU from the Emergency Department (ED) around 4pm the previous
day and was being discharged home around 2pm on the day of the interview. He was under
the cardiology team already following a similar episode, although he had not been admitted
to hospital with this problem previously but had been followed up in cardiology clinic. He had
spent two weeks in hospital some years ago with cellulitis in his leg, but this was the first
time he had been to AMU.
6.2 Elsie
Elsie was an 80-year-old lady admitted with chest pain. She had been in hospital just over
twenty-four hours at the time of the interview. She had been in hospital on several
occasions with angina and had been under the care of the cardiologists two years
previously. More recently she had been in hospital for cataract surgery but did not recall
33
ever being admitted to AMU. Elsie had a large caring family who offered a great deal of
support.
6.3 Tracey
Tracey was a 40-year-old lady who had been in hospital for a day and a half at the time of
her interview having arrived at 3am the previous day. She had been admitted with breathing
problems which she said was probably asthma, but she thought her symptoms were
exacerbated by panic attacks. Tracey had very difficult social circumstances with very little
support. She was single and lived alone in a small flat with her dog for company, her children
having been taken into care by social services. She was estranged from her mother having
been abused by her mothers’ partner and her own former partner. Her sister had died at the
age of 41 and Tracey was still grieving for her, especially as her sister had been her only
source of support. Tracey had never been in hospital before but had visited her sister in
hospital before she died.
6.4 Pete
Pete was 70 years of age and had been admitted twenty-four hours previously with left arm
pain thought to be cardiac in origin. He had been in hospital many times over the last 10
years, mainly with cardiac problems, and had coronary artery stents in place. He was
married with good family support and, as a Christian who attended church regularly, drew
strength from his spiritual beliefs. He explained that during a previous routine hospital
admission for a urinary problem he had suffered what he described as a ‘depression
breakdown’, which had been very traumatic for him. He did not recall ever having been in
AMU before.
7. Data Analysis
Following data collection, each transcript was analysed in accordance with guidance from
IPA advocates (Smith, Flowers and Larkin 2009, Pietkiewicz and Smith 2014), to try to gain
an in depth understanding of each participant in relation to their experience in the AMU
surrounded by other patients.
Reading and re-reading the transcripts enabled me to become immersed in the data and to
begin to understand and properly hear the participants perspective. Pietkiewicz and Smith
(2014) suggest that the aim of this is to ‘try to step into the participants’ shoes’ as much as
possible to gain understanding of how they felt. I also listened to the recorded interviews
34
several times, which allowed me to recall the moment, and focus on the small details, such
as tone of voice, pauses in speech and recollections of body language that enhanced the
conversation giving it greater depth and meaning.
The next stage was to make some exploratory notes in the right-hand margin alongside the
transcript, about things that occurred to me during the interview and during my study of the
transcript. These were varied in nature and included observations about the use of verbal
and non-verbal language, ideas and thoughts about what the participant was trying to say
and whether there appeared to be congruity between the spoken and unspoken meaning.
The transcript and exploratory comments were further analysed and emergent themes
developing from the joint dataset formed from the transcript and my exploratory notes were
identified and written in the left-hand margin. The short extract from Tracey’s transcribed
interview (table 2) illustrates the process used.
35
Table 2
Emergent themes
Transcript (interviewer in italics) Initial Exploratory notes
Scared
Nervous laughter
People coming and going
Transient area
Childlike responses
Trying to detach herself from the situation. Coping strategy
Dilemma about whether to call for help
Links patient with her sister
Fears death of another patient
Bad outcome for another patient would be a loss for her
Use of sign language to emphasise points
It was scary…You know………I can’t put the hospital down because they do do a lot for people but…. the only thing I can put it down its very cold [laughs]
Right. Yes…yes. It’s been very cold this last few days hasn’t it. You’re right.
I have been stressed just watching other people coming and going. Coming and going and I’m like.. I want to go home.
Right. So that made you feel stressed did it? That other people were coming and going?
[nods]
OK. And did you hear anything that was being discussed with the other patients about…by the doctors or the nurses.
I was just concentrating on my dog to tell you the truth, and I was concerned about the lady opposite me with her breathing…But..shall I get the nurse…? But..it brought me back memories of when I lost my sister…
Yes? Did it make you feel scared?
Mmm. I thought.. Oh I’m losing another one..
Right. So you were worried that that lady was going to die?
Mmm…… ‘cause I ain’t being nasty…you do get…good help in here but not like sort of [clicks fingers indicating urgent]
Again, states that she found the experience scary
laughter and sudden change of topic add odds with ‘scary’
Repetition of coming and going. Implies constant movement of people.
Very insecure around others ‘stressed’ afraid to stay fight or flight
Childlike response
Teacher/pupil relationship?
Dog as distraction
Trying not to focus on others. Seeking comfort zone. Thinking about her sister. Other patient bringing back memories of her sister’s death.
Dilemma. Undecided. Conversing with herself
Immediate connection to the other patient. Bad outcome for the other patient would be her loss. Note eye rolling.
Fears the other patient might die.
Delay in care. Doesn’t feel staff respond quickly enough. Anxiety due to lack of visibility of staff. Colloquial language emphasises the point
Sign language emphasizing pointMmm – reluctant to own up to her fear
36
The next step was to collate all the emergent themes and try to find connections between
them, which could be developed into super-ordinate themes. This process was time
consuming and involved moving backwards and forwards to and from the dataset, arranging
and rearranging themes until they fit together, and it also enabled me to begin make sense
of the interview. During this stage some themes were discarded if they overlapped or were
repeated.
This process allowed discrete ideas and concepts to be identified because the data was no
longer linear and confined to the interview format as it had been at the transcript stage
which, I found, enabled deeper analysis of the emerging ideas. Table 3 demonstrates this
process by illustrating an excerpt from the analysis.
Table 3. Example of Superordinate Themes - Tracey
37
Caring Self
Aspiration to help others
Limited ability to help others
Dilemma about whether to call for help
Need to care for others
Well brought up
Cares for others not herself
Responsible for the dog
Not well brought up
Lost children to social services
Not able to care for others
Aspirations of normality
Vulnerable self
Previous history provoking present response
Previous difficult life history
Vulnerable due to prior abuse
Previously homeless
Links with drug addiction implied
Memories of abuse inescapable
Crying out for help
Not able to cope at home
Chaotic lifestyle
Abuse as a justification for chaos
Vulnerable at home
Abandoned by family
Incorrect use of medication
Self-persecution
Lack of self-care
Observer/Watcher
Lack of hospital experience
Obvious that room would be shared in hospital
Feels exposed
Being watched feels sinister
Threatened by others
Hostile environment
Observing others
People coming and going
Observing another patient
Dog as witness
Having analysed one transcript, the same process was repeated for all the transcripts in
turn. Each was treated as a discreet case study and I was conscious not to think about or
refer to the other cases until all the cases had been analysed, in order not to influence them
adversely. I made a conscious effort to dissociate myself from the prior interviews in order
that I could give my full attention to the new data without prejudice.
The next step was to look across the cases to find out whether any overlap or similarity was
found in the themes, or indeed, whether there was any stark contrast between cases.
On studying the themes emerging from the transcripts, I sensed that each participant
independently demonstrated themes that made them feel both positive about the experience
and at the same time negative or fearful, as though they were trying to come to terms with it
or find some kind of balance in order to help them cope with the experience. I thought this
was significant as it seemed to illustrate the vulnerability that participants felt in this situation.
Self-protection strategies were also identified across all the cases to further demonstrate the
need to defend themselves against uncertainty.
This idea was used to map the themes to gain a better understand of each participants
perspective and to identify areas of similarity and difference (Table 4). The overarching
themes from each participant were surprisingly similar, despite their individual dissimilarity,
which was not expected at the outset.
In order to check my assumptions, I shared my analysis with my Director od studies and
both supervisors, to make sure that my assumptions were correct and to ensure that I was
not missing anything. It is essential to try to ensure validity in qualitative research through
some form of external review. Validity is defined as being how accurately the interpretation
represents the participants perspective, given that the researcher plays an integral role in the
data collection and interpretation (Cresswell and Miller 2000). Using such an approach
increases the ‘trustworthiness’ of the findings.
38
Table 4. Areas of Similarity and Difference
Negative Themes
Feeling under threat
Self-protection Themes Positive Themes
Regaining control
Jim Vulnerable self
Intruder
Observer
Detached self
Critical self
Personal knowledge
Caring self
Elsie Vulnerable self
Observer
Detached self Caring self
Personal knowledge
Tracey
Vulnerable self
Observer
Personal knowledge
Detached self Caring Self
Pete Vulnerable self
Personal knowledge
Intruder
Observer
Detached self Caring self
Personal Knowledge
Having gained an idea from the mapping exercise about where the themes sat, they were re-
examined to gain further insight into the components of each, which were amalgamated to
enable meaningful comparison across the cases. Table 5 shows a summary of the merged
themes with an indication of their commonality. Appendix 9 shows an excerpt of some of the
data which has been amalgamated in accordance with the amalgamated themes.
39
Table 5. Comparison Across Cases
Negative Concepts –Feeling Under Threat
Jim Elsie Tracey Pete Similarity
Vulnerability Yes Yes Yes Yes 4/4
Observations of others Yes Yes Yes Yes 4/4
Previous bad experiences
Yes Yes Yes Yes 4/4
Feelings of intrusion Yes Yes Yes Yes 4/4
Self-Protection Measures
Jim Elsie Tracey Pete
Detachment from events Yes Yes Yes Yes 4/4
Positive Concepts -Regaining Control
Jim Elsie Tracey Pete
Care for others Yes No Yes Yes 3/4
Care for self No Yes Yes Yes 3/4
Positive personal experiences
No Yes No Yes 2/4
40
8 Findings
The findings seemed to fit within three distinct categories:
The impact of individual participant factors on their ability to cope.
The fellow patient in the context of the hospital environment and their impact on
participant anxiety.
The notion of being in competition with fellow patients for care.
8.1 Individual insecurity
8.1.1 Sense of Vulnerability
Not surprisingly, each of the participants was, to a greater or lesser degree, anxious about
their own welfare, and the uncertainties about their condition and treatment, which resulted
in making them feel vulnerable.
Tracey: I thought I were a gonner. (para 14)
Pete: I was a little bit worried whether I was going to be having another angiogram or
something. (para 170)
Jim: I haven’t got all my medication here. I’ve still not had medications that I should
normally have. (para 145)
Consequently, everything else that happened to them was experienced in the context of this
uncertainty. I felt that this was important, because it indicated that they may have been
prepared to tolerate circumstances that they would not have tolerated in any other setting,
such was their need for reassurance.
8.1.2 Self -protection
It seemed that all the participants used some form of self-protection given their evident
vulnerability in a new and uncertain environment. One such strategy was the avoidance of
interaction with fellow patients.
Jim: No. I erm. I tend to very much... Ok Just try and blank stuff out. That’s my bit.
(para 45)
Elsie: No. I think they were all too poorly and I was too exhausted really. (para 36)
Tracey: Just said hello to an old lady that was it. (para 50)
Pete: So, I didn’t try and take a lot of it in because it’d not my business anyway.
(para 62)
41
Despite having told me in some detail about numerous things that they had witnessed, they
all tried to deny any knowledge of their fellow patients in the above excerpts. This was of
interest because it demonstrated the importance of being able to maintain a distance from
events that the participants were not able to control. My perception was that these
avoidance strategies were important defence mechanisms and the participants seemed to
be trying to block out unpleasant or unexpected events which had the potential to cause
additional anxiety.
All the participants showed evidence of trying to remain detached from events that they were
witnessing. For example, Jim’s very impersonal, factual description had the effect of
removing him from the situation so that he could assume the position of detached observer
rather than participant in the events:
Jim: You’ve got those two and somebody that… and another one that was just
trying to get out of bed. (para 31)
The very objective use of ’those two’ and ‘another one’ does not seem to acknowledge the
fellow patient as an individual, but more as an inanimate object. My perception was that this
dehumanisation was a way to remain detached from the scene to help him seek refuge from
the situation.
Tracey’s strategy was to focus on her dog, which she indicated was her closest companion
Tracey: I was just concentrating on my dog to tell you the truth. (para 66)
This meant that she did not need to engage with anyone else around her.
Pete, despite being able to relay significant details about his fellow patients, including
overheard conversations, also tried to deny that he had any knowledge of them.
Pete: I think I heard a few things, but I’ve got…my hearing isn’t brilliant, so
sometimes I can hear voices, but I can’t define the words. (para 60)
It is possible that he had a problem with his hearing, but his body language suggested that
this was a deliberate attempt not to get too involved. This may have been his way of turning
a blind eye to events that he did not consider were his concern, or a deliberate attempt to
protect himself from issues that were too difficult to comprehend.
8.1.3 Coping strategies
Each of the participants seemed to have strategies that they employed to help them to cope
with their situation. Pete, for example, used his spirituality as a coping mechanism. He
talked about his beliefs and the importance of his religion and he seemed to want to help
others to feel better.
42
Pete: Because I believe that when you spread happiness or try and lift somebody up,
you’re also taking your burden away, by not dwelling on your own burden. (para 92)
It was interesting to note that, although his aim was to ‘spread happiness’, he admitted to
carrying a burden, that he was trying to dispel. It was not clear whether this was related to
his present admission and concerns over his welfare, or some other issue that he had not
disclosed. It seemed that the objective, therefore was to gain happiness from such
interactions as well as spread it, and as such, fellow patients were important in helping him
to cope.
This was reinforced when he referred to self-pity.
Pete: Not to dwell too much on myself, self-pity, you know. (para 92)
The indication was that Pete was struggling to cope despite his outwardly composed
appearance. I sensed that he was afraid that his prior mental health problem may resurface
during this admission, which made him extremely anxious, and he was relieved when he
was told he could go home.
Elsie coped by focussing on the nursing staff which seemed to give her a great deal of
reassurance.
Elsie: She is so, so dedicated. It’s like…mind-blowing. But they all are. I’ve got no
complaints about any. Night staff, day staff, nobody. (para 84)
Use of a colloquial term like ‘mind-blowing’, followed shortly by the conversational use of the
word ‘rejoinder’ demonstrated how articulate she was, and her expressive outburst illustrated
the esteem she placed on the nurse.
Elsie: She can stop and give you a few seconds of her time if you say something,
come back with a rejoinder, or a funny remark. (para 90)
This illustrates the relief she felt at being kept safe through another hospital visit. There was
a sense of inevitability that at some point she would die like her friend and she seemed to
indicate that she had once again been reprieved.
Jim’s coping strategy was to try to help to redesign the hospital process to make it less
distressing for patients.
Jim: Short of actually having…soundproof blinds or shuttering within a ward. Could
be a possibility really rather than just curtains. (para 105)
43
Jim: You couldn’t really have them in individual rooms ‘cause you never… you’d
have to have a nurse for everyone looking after them all the time and that’s …
obviously not…not conceivable. (para 55)
This very practical approach enabled him to think aloud and to work through the issues that
concerned him, which served to relieve his anxiety. This approach was most likely a product
of his professional role in the hospital, but it allowed him to reassert himself in a practical
sense and to once again take control of his situation.
Tracey appeared to have the fewest coping strategies of all the participants, as she did not
have any meaningful human relationships to look towards, and her history of abuse meant
that she had a lot of emotional issues, which were manifest in her somewhat chaotic
lifestyle.
Tracey: No. I haven’t cooked for days and days and days and days at home. I’ve
only just ate what the hospital’s given me. That’s it. I just can’t be bothered. In life,
day to day any more. (para 179)
The above excerpt revealed the extent of her vulnerability. It appeared that Tracey did not
have the means to look after herself nor the will to do so. The use of ‘days and days and
days and days’ suggested a long-term struggle to cope alone, and more worryingly the fact
that she could no longer be bothered with day to day life made her extremely vulnerable.
Under these circumstances it was interesting that she should have taken any interest in her
fellow patients, given, that in the scheme of things, this episode could have been perceived
as being of little importance. The fact that she was so markedly affected, especially by a
patient who looked like her sister, demonstrated how exposed she was. It also indicates the
importance of her relationship with her sister and possibly served to remind her of her loss.
8.1.4 The Need to Care for Others
A common theme across all the participants was their instinct to want to care for their fellow
patients.
Pete: I always try to talk to people. Make them feel comfortable. (para 50)
Tracey: I do care for other people besides myself. That’s how I’ve been brought up. (para 90)
Elsie: I just feel sorry for them really because there’s such……..such a lot they’re putting up with. (para 99)
44
This tendency to care for others seemed to affirm their humanity and to give them a sense of
themselves in a situation where they were at risk of losing their personal identity. It felt as
though they were searching for positive experiences that they were able to control, as there
was a definite sense that they were not in control of themselves, which caused significant
anxiety.
However, the need to care for others sometimes became something of a burden. Jim, who
explained that he worked in a hospital, was acutely aware of his fellow patients. He was torn
between offering help and keeping out of the way, and he rationalised this by suggesting
that he may have been at risk of litigation if he stepped outside his professional boundary.
Jim: Being an employee I find it more difficult to think actually...I could land myself in
it. (para 171)
It might be argued that concern over professional boundaries could be considered a
somewhat tenuous excuse, for preferring to keep out of the way of the other patients, but it
was interesting that Jim felt he needed an excuse in a situation where he had no obligation
to help anyone. As a patient he would not be criticised for not getting involved, but as a
human being he clearly felt differently.
Jim: There’s times I thought I could have helped slightly I think. (para 173)
The above statement felt to me, to be an admission of guilt. The fact that Jim felt obliged to
help, coupled with the fact that he perceived patients were not receiving appropriate help
was significant.
Tracey also worried that fellow patients needed her help.
Tracey: And you’re thinking…oh…can you help them or stuff like that. (para 40)
Despite her misgivings around people, she still felt there was a need for her to help, although
she admitted that the only assistace she would be able to offer was to call for a nurse.
Pete was cognisant of the burden of responsibility and expressed his view that he did not
want to be adversely affected by it.
Pete: I think mentally you have to be careful you don’t take too much of their
problems onto your shoulders (para 58)
He appeared to take a conscious decision to disengage from the other patients to protect his
own mental wellbeing. The reason for this was clarified when he explained that he had
suffered an acute mental health crisis during a previous admission for an unrelated physical
problem. Pete seemed to me to be desperate to talk about other hospital admissions
despite my wish to focus on the current admission, and the reason for this became clear
when he explained the trauma he had suffered ten years before.
45
Pete: Whatever was happening to me, I didn’t fully understand it myself because I
was going through that process of a slight depression breakdown. (para 117)
The episode may have been triggered by his admission to hospital, but it was not recognised
by the clinical staff at the time. Pete described feeling very unwell at the time and the
recalled experience had clearly impacted on his current admission, because although his
instinct was to maintain a respectable distance from others so as not to intrude, he was also
desperate to make sure that other patients did not have to suffer in isolation the way that he
did on that occasion.
Pete: it was as if I was having to deal with it all myself (para 119)
Clearly every admission to hospital since that episode has had the potential to re-ignite his
fear, making him automatically vulnerable. This prior experience had left an indelible mark
which he seemed to relive in subsequent stressful situations. Recognition of the importance
of previous experience was an important finding as it demonstrated that patients bring with
them prior learning, not all of which will be positive, but which needs to be considered in the
current circumstances.
8.2 Environmental exposure
8.2.1 Hospital environment as a source of stress
Participants had all been placed in a room shared with other patients and all of them
appeared to accept that this as a normal and expected part of a hospital stay, and they were
all resigned to it.
Jim: It’s the expectation of what…of being admitted and being checked through. I
know it’s going to happen. (para 97)
Elsie: It wasn’t pleasant, but it was inevitable, and I accepted that. (para 56)
Pete: sometimes you have to accept situations, don’t you? (para 164)
Even Tracey, who had never been admitted to hospital before accepted this as an
expectation of hospitalisation.
Tracey: you know…it’s a hospital really. (para 34)
Tracey’s response, which seemed to indicate that I had asked a nonsensical question,
shows that the multi-bedded ward arrangement is an expected and largely taken for granted
element of a hospital stay.
46
In fact, Elsie was reassured by the shared environment as her experience had been that
single rooms were reserved for patients who were dying, so for her, placement in a shared
room was a sign of hope.
Elsie: Was I put in the side room? No surely not. Not for a cataract. No I can’t er…I
can’t think of ever being in the side room. Where I don’t think it’s a very good sign if
you’re put in a side room, because my friend was. (para60)
Elsie seemed to be very conscious of her age and seemed to relate everything happening to
others to their age, which suggested that dying due to old age was her biggest fear.
Elsie: I mean, I know I’m 80 but they looked to be even older than me. (para 54)
So, from this perspective, she felt relieved by the fact that the nurses were not overtly
worried about her and trusted that she was not so ill as to warrant the special treatment
afforded by a side room.
However, there were indications that the arrangements were not palatable to everyone even
though they were expected:
Jim: It certainly affected my rest because there was that much of erm coming and
going and shouting and wanting and doing. (para 59)
The sense of relentless activity in this sentence, ‘coming and going and shouting and
wanting and doing’, suggests that the AMU is busy throughout the day and night. It depicts
noise, movement, nursing activity, patient demand in a way that could only be appreciated
by those subjected to it.
Similarly, the sense that activity is repetitive and perhaps also superfluous is implied in the
term ‘reassessed and rechecked’. This is a hint at a criticism that contradicts his prior
apparent acceptance of the ward arrangement.
Jim: They have to keep being visited and reassessed and rechecked. (para 105)
Jim also rather sarcastically refers to a bleeping monitor to further illustrate how he felt about
being disturbed.
Jim: So, he’s got his wonderful Phillips monitor that’s…that’s bleeping every half a
minute (para 59)
This apparent contempt for the monitor points to an underlying irritation at the level of
disturbance that Jim experienced from other patients. He added that the patient attached to
the monitor was also irritated and had a headache because of it. Interestingly this shared
suffering seemed to suggest a degree of camaraderie brought about by a shared
experience, although there was no sense that this shared experience developed further into
any sort of relationship.
47
Pete similarly referred to the constant activity around other patients which appears to have
impacted on his rest.
Pete: I mean the nurses have been in and out all night taking blood pressures (para
56)
Pete: When you’re in the wards because of the bleeping and the activity throughout
the night you don’t get much sleep. (para 125)
Tracey likewise referred to the continuous ward activity as being a source of distress:
Tracey: I have been stressed just watching other people coming and going. Coming
and going and I’m like… I want to go home. (para 62)
Repetition of the phrase ‘coming and going’ once again gave an impression of relentless
activity, which was enough to cause Tracey to want to leave the hospital early.
Although the high level of activity did not specifically relate to the witnessing of other
patients’ distress, it was a direct consequence of sharing a space with other dependant
people and resulted in participants being disturbed.
8.2.2 Observation of activities relating to others
The arrangement of the environment meant that participants were all able to describe the
patients that they had seen during their stay in hospital in some detail, although not
everything that was witnessed was watched. Much of it was, in fact, overheard.
For example, Jim was able to describe in some detail an interaction between two nurses and
a patient with a catheter, based only on what he overheard from behind the curtain.
Jim: He was actually probably suffering some more discomfort than he needed to
because of the way that his catheter tube was routed, and he was wearing
underwear with it that was far too tight that was clamping it in the wrong place. (para
163)
This description leaves very little to the imagination, such that the care may as well have
been delivered in public. This was also Jim’s view, who clearly felt exposed in the ward
environment.
Jim: Well you can pull your curtains round but it’s no…no privacy in terms of …of
what’s going on, what’s being done or what they’re having to do with them (para 89)
The participants were all able to describe things that they had seen that they had found
distressing.
For example:
48
Pete: One gentleman was getting out of bed and he was covered in his own excreta
and I found that quite horrifying. (para 96)
The word ‘horrifying’ is very powerful and indicates the extent to which Pete was affected by
something that he saw. He explained that he did not historically deal very well with
unpleasant odours stating that a baby’s nappy had the same effect on him at home. The
combination of visual and olfactory stimulation left him feeling physically shaken.
Pete: It’s very, very off-putting and I felt physically sick. (para 103)
The use of the phrase ‘very, very off-putting’, demonstrated how vehemently he objected to
this experience. I had the sense that he blamed the staff for causing him to have been
exposed to this situation and making him feel vulnerable.
Similarly, Elsie, who tried her best to remain detached by not engaging with other patients in
any meaningful way admitted that she had witnessed events which she found ‘upsetting’.
Elsie: Some of them looked as if they were unconscious, to be honest. (para 44)
Elsie: it is upsetting to see other people in distress. (para 52).
Tracey’s reaction to one of her fellow patients was particularly marked. She compared this
patient, who also had apparent breathing difficulties, both to herself, because of a perceived
shared diagnosis, and moreover, her own sister, who died of a presumed asthma attack at
the age of 41.
Tracey: It was like looking at my sister. You know what I mean? (para 149)
This association caused Tracey significant distress, because of the memories it evoked.
Tracey thought that the patient even looked like her sister which made the association much
more distressing.
Tracey: My sister has got the same hairstyle as [patients name] (para 155)
Tracey’s use of the present tense: ‘my sister has got the same hairstyle’ indicated that she
had not come to terms with her loss, which made the situation even worse for her by reviving
her grief for her sister.
Even the simple act by the nurse of pulling the curtains around the bed of the fellow patient
to deliver care, caused so much stress that she started to suffer physical symptoms of
anxiety, because Tracey assumed that this meant that the patient was in danger as her
sister had been.
Tracey: But…the only thing is…[they] shut the curtains, you know...’cause it did
panic me a bit. I was having a bit of…sharp pains last night. I thought Oh… no I’m
losing another one. (para 96)
49
Tracey had not disclosed her anxiety to the nursing staff, who would not have been aware of
the association and therefore the acute anxiety it provoked. The revelation that co-location
with a random patient could be so distressing as to cause her to rehearse her grief and to
suffer a panic attack was significant.
8.2.3 Feelings of intrusion
The way the ward was organised meant that Jim and Pete felt that, at times, they were in the
way or making a nuisance of themselves. This is demonstrated in Jim’s statement:
Jim: Although I’m there and ill, I’m not that ill and you feel like… I almost felt like it
would be looked at like I had almost been sent back like I was last time so not
actually me feeling particularly ill. (para 23)
Jim seemed to be saying that in comparison to his fellow patients, his condition was not
severe enough to warrant a hospital admission, and he therefore thought he should have
been ‘sent back’ home. This hesitant, disjointed sentence reveals his uncertainty and guilt
about being, in his view, unworthy, when others are clearly more in need. I noticed that Jim
displayed a similar rambling style at other points in the interview, when he appeared self-
conscious about giving an opinion that might have been considered contentious or
uncomfortable for him.
Jim: problems that weren’t being addressed that might have been able to...or…or…
in a… in a…slightly better…… you know way of looking at it. (para 43)
In the above excerpt he was critical of the nursing staff for, in his opinion, missing something
but found it difficult to tell me, which made his discomfort almost tangible.
Pete also suggested that he felt in the way at times and was not always sure whether it
would be appropriate to engage with fellow patients or their relatives.
Pete: They stopped till eleven o’clock, but I didn’t want to intrude too much on their
space…… I didn’t want to push it because they were very anxious about him. (para
74)
Pete clearly enjoyed the company of other people, but in this context, he felt unsure about
whether to engage with them. It appeared that he was desperate to understand the rules in
a situation where there were no rules. Consequently, he had been forced to navigate the
situation for himself, which he found difficult. The environment clearly made him feel
exposed.
50
Tracey differed from the other participants, because she seemed to suggest that her fellow
patients were intruding on her rather than the other way around. She was very conscious of
being watched by others, which she found to be ‘scary’.
Tracey: People watching you…….
Er….just looking over
…………….and you’re looking at them as well. (para 36-40)
There was a sinister quality to the way in which she described the sensation of being
watched and watching others, which was unnerving. The slow deliberate pace with long
pauses indicated that she found the situation almost menacing, as though she was being
hunted, and needed to be prepared to fight back. The above excerpt demonstrated how
exposed and vulnerable she felt in the ward, which I found disturbing.
Her distrust of others was explained over the course of the interview, as Tracey disclosed
that she had suffered mental and physical abuse in the past involving family members and
she no longer had any family support. She talked in a matter of fact way about some very
distressing events that she had been subjected to in the past. For example:
Tracey: My mum disowned me a long time ago. She went out with a paedo who
raped me. (para 133)
The trauma she described was at odds with the way in which she described it, which
suggested that she was trying to detach herself from the ordeal. Not surprisingly, she was
very wary of people, preferring to spend time with her dog, who she felt she could trust. This
disclosure put her fear at being surrounded by strangers in a hospital environment, into
context. On more than one occasion she described her fellow patients as being ‘nice and
quiet’, which may have indicated that she had begun to feel more comfortable over time,
once the initial perceived threat, was alleviated.
Tracey: They have been ever so good to tell you the truth. Nice and quiet. (para 92)
However, it felt more likely that Tracey was trying to say that she could not relate to the other
patients because they were ‘nice and quiet’, and therefore not like anyone she knew. This
was more apparent when she talked about the patient previously likened to her sister in
which the phrase ‘nice and quiet’ became almost derogatory.
Tracey: She seems to be nice and quiet, you know
She’s alright…I’m not putting her down she’s a very poorly girl. (para 145-147)
51
It seemed that she could not relate to this patient or any other, which possibly further
enhanced her loneliness in the ward despite being surrounded by people.
8.3 Competition for care
Perhaps the most unexpected finding was the notion that some of the participants indicated
that fellow patients were a source of competition, which made them indirectly a source of
anxiety. Pete and Jim had both expressed concern for their fellow patients, and it was clear
from their accounts that they wanted patients who were sick to receive good care. However,
there was also a palpable indication that they viewed fellow patients as competition for care.
In a busy environment, where they were clearly being disturbed they were also having to
wait for things to happen in terms of their own medical needs. Jim described how he
anxiously waited for information for several hours, whilst observing others receiving care.
Jim: That was from seven o’clock, to eight o’clock, to nine o’clock, to ten o’clock,
when I didn’t even know whether to tell my wife to come, (para 137)
The passage of time and the interminable wait is almost tangible in this excerpt, and
although he did not directly refer to the feeling of being in competition this was insinuated,
especially as Jim had been witness to a great deal of the care delivery for fellow-patients.
The nurses were clearly busy, but not with anything that would assist his situation.
For Pete this concept was more overt. He recalled his experiences whilst waiting for a bed:
Pete: You’re in a line with other people and some people have probably…..got
erm…..worse conditions than myself. (para 158)
The idea of being ‘in a line with others’, especially at a time when Pete was not sure about
the severity of his own illness was clearly very distressing. The word ‘erm’ in this sentence
expressed a multitude of unspoken feelings. Queueing is a very British concept and there
was a hint in this sentence that, despite his obvious fear, he understood that there were
people in front of him which, although inconvenient was perfectly correct. The dichotomy in
this situation is tangible and very uncomfortable for Pete as it directly affected his perception
of his own wellbeing.
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9 Reflection on Findings
Having reviewed the findings I realised that they uncovered some things that I had not been
expecting when I first started this study. My initial literature review had focussed on patient-
patient interaction and had uncovered a small number of papers that discussed this
relationship in anticipation of what I might find. Having conducted the research I found that
none of the participants dynamically engaged with their fellow patients, and in most cases
actively sought to distance themselves from them. I had focussed on finding out whether
witnessing the distress of fellow patients caused anxiety for patients, but I had not
anticipated that the mere presence of other patients would be an issue, regardless of
whether they displayed any distressing signals. All of this forced me to re-evaluate my
position and consider the need to search for literature that would illuminate my findings
better.
There were, in fact, many sources of anxiety, for the participants in the context of the AMU.
Uncertainty for the participant in terms of their own status was a cause for concern which
appeared to almost override any concern for others. This uncertainty as to whether the
participants felt safe, in terms of their own prognosis, gave rise to a surprising discovery,
namely their perception of fellow patients as a source of competition for care. I had not
anticipated this. I had failed to account for the fact that participants may not have had all
their basic needs met, including the need to feel safe. This theory was proposed by Maslow
(1943) when he looked at the things that motivated human beings. The need for the
fulfilment of basic physiological needs and the needs to feel safe, will surpass the need for
human relationships and the ability to care for others.
I realised that the initial literature review had not included any literature which described the
impact of hospitalisation and the uncertainty that arises which has the potential to change
life, which on reflection seems to be more pertinent. What is it that makes patients feel
vulnerable? This realisation underlined for me the debate about whether an initial literature
review is in fact beneficial in qualitative research, because the research has the potential to
uncover unanticipated findings and may also steer the research off track (Fry et al 2017).
There was a risk that my analysis could have been hampered by the initial literature review
as I was expecting to be able to slot my findings into similar categories. It took some time
before I realised that the literature I had selected bore very little relevance to the findings of
this study.
I was initially puzzled by the fact that most participants actively disengaged from fellow
patients, when other studies had shown that patients were a source of comfort and advice
(Anderson et al 2015, Larsen et al 2014). I attempted to rationalise this by thinking about
53
what the participants were telling me was concerning them. It seemed that a source of
concern was their perceived uncertainty. They were uncertain about their diagnosis, the
severity of their condition, the treatment options, the waiting time, what exactly they were
waiting for. All these factors clearly created a degree of anxiety that was tangible throughout
each of the interviews. The presence of other patients in this context was an additional
stressor, and it seemed that most patient’s chose to disengage from them in order to cope
with the situation by removing a potential source of anxiety.
I decided to look for papers that discussed the impact of the healthcare environment. Galvin
and Todres (2013) consider the healthcare environment in terms of the extent to which they
enable patients to be treated as individuals, whilst acknowledging that the target driven focus
of modern healthcare organisations serves to dehumanise care causing patients to feel
alienated and anxious. There were many elements of their work which resonated with this
study, as they describe the continuum between humanisation and dehumanisation in the
healthcare context. This includes their perspectives on the importance of individuality or
‘uniqueness’ versus ‘homogenisation’ in care settings where patients perceive a loss of their
personal identity (Galvin and Todres 2013).
Another element that I had not considered in my initial literature review was the impact of the
crowded environment on patients. There is evidence that crowding in emergency
departments can induce symptoms of Post Traumatic Stress Disorder (PTSD) in certain
groups, partly as a result of uncertainty over prognosis. (Edmondson et al 2013). A busy
environment such as AMU therefore had the potential to cause anxiety because of the high
levels of activity and constant movement of patients. This aspect was evident in all the
interviews, which suggested that the aggregation of patient’s activity had the potential to
cause stress much more than individual patients did.
The importance of the physical environment and personal space therefore became evident
and literature pertaining to this was sought (Schopp et al 2003, Cassidy 1999 and Oliver
2002). The concept of privacy relates to a person’s decision to deny or grant access to their
personal self (Schopp et al 2003). Individuals are free to decide what they admit into their
personal or their conscious space to enable them to keep unwanted stimulation at bay.
Several texts gave an insight into the mechanism of ‘witnessing’ or acknowledging events
which participants may have demonstrated in a bid to protect themselves from emotional
harm. (Eifried 2003, Campbell and Davis 2011).
54
10 Discussion
The aim of this study was to establish how it felt to be a patient in the AMU witnessing the
distress of fellow patients and it was shown that patients in the AMU were indeed aware of
other patients. It seemed that very little of what was found mirrored findings from the initial
literature search. One shared concept, however, was that of patients as enforced
companions (Larsen et al 2013, Laursen et al 2016) brought about by the obligatory sharing
of space in the hospital ward. This resulted in participants witnessing unconscious patients,
unpleasant smells, overheard conversations and bleeping monitors, which they suggested
was stressful. The study showed that although participants anticipated the nature of the care
environment they seemed to tolerate it under duress. Most participants indicated that
sharing a space was an inevitability to be endured, indeed, Jim openly expressed a
preference for a single room, as he considered the invasion of privacy to be problematic.
Only Elsie saw sharing a space as a positive experience, because for her a side room was
synonymous with end of life, so she was reassured to be in a room with others.
It has been shown that the maintenance of privacy and the provision of private space allows
for a feeling of personal control, which is central to positive human experience (Schopp et al
2003). Removal of this fundamental provision is therefore likely to threaten the sense of
being in control and therefore the ability to cope with the experience appropriately (Cassidy
1999). Studies have shown that invasion of personal space causes an increase in physical
arousal, because the inappropriate closeness is perceived to be a threat to wellbeing (Oliver
2002). In a major life event such as a hospital admission, where there is already a perceived
threat to personal safety, additional stress is therefore unwelcome (Fridh et al 2015).
The importance of privacy in UK healthcare settings is well recognised. Both the
Department of Health (2010) and the Nursing and Midwifery Council (2015) demand that
patients have the right to privacy, dignity and confidentiality. Despite the importance placed
on privacy and confidentiality, it seemed that the arrangement of the care environment in this
study meant that these fundamental necessities were very difficult to secure. This created a
sense that individuals were striving to gain control of their situation, and the contrasting
nature of the positive and negative themes identified seemed to embody the apparent
struggle which ensued.
This perceived conflict is illustrated by Galvin and Todres (2013) in their framework on the
humanisation of care which describes a series of concepts which are required to achieve
self-actualisation as a human being, and the sense that there is a continuum between
humanisation and dehumanisation for each concept.
One of the concepts, the notion of sense of place versus dislocation, which moves a person
from a comfortable feeling of belonging, to unfamiliar territory where a ‘sense of strangeness
55
arises’, seemed to resonate with this study (Galvin and Todres 2013). There is a definite
sense that the participants are trying to find out where they fit, and how they should behave,
in a situation where the guidance for patients is less than clear.
Not surprisingly, participants demonstrated noteworthy self-defence strategies to enable
them to cope with their situation. This included denial that they had witnessed anything
significant, even though they had previously described witnessed events in some detail.
According to Lazarus and Folkman (1991) the use of denial implies a degree of helplessness
about being able to change the current situation, which means that the participants had to
find a way to protect themselves from what they could not change. Whilst denial may be
thought of as a maladaptive and therefore negative coping style as it implies an impairment
of the concept of reality (Wright and McKeown 2018), Taylor (2017) suggests that it can be a
positive strategy to prevent exposure to unnecessary stressors, which seemed sensible,
given that there was no benefit in this instance, in allowing the welfare of patients to impact
on unrelated individuals. The notion of denial and the need to seek refuge from fellow
patients was also present in other studies, even though on the whole patients in these
studies found companionship from fellow patients, therefore highlighting the ambiguity of the
relationship (Larsen et al 2014, Larsen et al 2013 and Laursen et al 2016).
As in other studies, participants reported an inclination to want to care for their fellow
patients (Laursen et al 2016, Larsen et al 2013, Birkelund 2013) although in this study such
a desire did not develop into any meaningful care delivery or companionship. Indeed, there
was very little communication between patients, apart from occasional brief chats. This
apparent contradiction between the desire to care for others and the evident need to
maintain a safe psychological distance from them created a dichotomy which illustrated the
tension felt by participants in this study. It is possible that the reason for this tension was
that all the participants had a very short stay in hospital, meaning that there was not much
time to form relationships, however, the researcher sensed a desire to actively keep fellow
patients at a distance and not to fully engage with them, that was not necessarily linked to
limited exposure.
This is possibly because acknowledgement of the suffering or discomfort of another person
meant that it had to be accepted as being real. According to Campbell and Davis (2011) the
concept of ‘offering presence’ is an integral part of bearing witness to suffering. They
suggest that mental, emotional, and spiritual presence as well as mere physical attendance,
is part of witnessing and acknowledging another person’s feelings, which suggests that
choosing not to engage emotionally allows the experience to be overlooked allowing a virtual
distance to be maintained. Bearing witness to suffering had the potential to make
participants more conscious of their own vulnerability (Eifried 2003), because it meant
56
identifying with the other person as a human being and admitting that they shared similarities
and therefore weaknesses. This notion was further evidence that patients felt the need to
protect themselves from psychological damage, which they perceived to be a threat of
hospitalisation in the AMU.
One interesting finding that was not seen in other studies was the notion that fellow patients
represented competition for care, which had the potential to threaten the wellbeing of some
of the participants. The struggle between needing reassurance about their own welfare and
being conscious of fellow patients’ needs care was tangible in both Pete’s and Jim’s
account, which resulted in perceived guilty feelings. According to Nencini and Meneghini
(2013), when a situation provokes an experience of guilt, several different emotions are
activated, such as shame, sorrow, anxiety, embarrassment, and anger, all of which would
add to the sense of alienation being experienced by the participants in their uncertain
situation. This is further illustrated by the fact that all the participants felt that they were
intruding on their fellow patients, as though they were outsiders who did not belong, which
echoes Galvin and Todres (2013: 104) ‘alienated isolation’ concept, in which they describe
the need for the ‘interpersonal warmth of one’s people’ to avoid feeling lonely in a room full
of unrelated individuals.
Another concept which featured in other studies was the idea that fellow patients were a
source of new information and learning (Anderson et al 2015, Larsen et al 2013). This
notion was not found in this study. None of the participants indicated that they had had a
conversation with a fellow patient which resulted in them finding out new information. In
other studies, patients who shared a diagnosis were observed to learn from each other
about the disease process, and what to expect from treatment (Birkelund and Larsen 2013,
Anderson et al 2015), which gave rise to a sense of comradery and support not evidenced in
this study. Moreover, it has been shown that relationships between patients who share a
similar diagnosis or surgical intervention can positively affect recovery, further illustrating the
impact fellow patients can have (Lijia et al 2017). What is not known is whether a lack of
positive stimulation from others in this way can adversely affect patients. It is possible that
the AMU offers a unique environment in this respect. The short length of stay in the AMU,
and the fact that Acute Medical patients present with a diverse range of problems which
other patients do not necessarily identify with, make it different from any of the other
environments studied to date. Another important issue is the fact that the stay in the AMU
was unplanned and therefore unexpected. It is likely that patients were anxious about their
wellbeing which may have heightened their anxiety (Fridh et al 2015). This means that there
is a need for support and reassurance that does not appear to be fulfilled, even partially by
relationships with fellow patients. The camaraderie between patients evident in other
57
studies did not appear to be present in this environment, which means that only source of
support available to patients in AMU is from the staff. This is a significant finding as it points
towards an area requiring further investigation.
Another important finding was the extent to which previous knowledge of hospitalisation
influenced the participants experience on this occasion. This either had a positive or a
negative impact on expectations during this admission. Tracey’s extreme response to the
patient opposite who looked like her sister and Pete’s memory of his prior mental health
issues during a hospital stay, demonstrated that patients bring with them a wealth of
complexities which do not appear to have been acknowledged, but which affected their
experience. There is a growing body of evidence which points to the importance of
psychological wellbeing on physical health (Hernandez et al 2018, Thew et al 2017), and to
apprehend psychological needs they would first need to be assessed and acknowledged.
The AMU is a busy environment which does not focus on psychological assessment, much
less intervention, the emphasis being on physical assessment and treatment (Royal College
of physicians 2007). As such staff would be unlikely to be aware of the experiences and
apprehensions of the participants, although this was not tested in this study.
11. Conclusion
This study has demonstrated that the AMU is a difficult environment for patients to navigate.
Patients have diverse conditions with varied acuity and as such they may find it difficult to
relate to fellow patients. This lack of camaraderie means that patients do not have any
support network in AMU other than that provided by staff, especially since family members
are restricted by visiting arrangements. The understandable anxiety felt by patients being
admitted to hospital and the prevailing lack of companionship indicate that AMU can be
lonely and confusing for patients. This suggests that further research into patient experience
in AMU is warranted. The aim of the study was to understand how patients felt witnessing
the distress of fellow patients, and whilst there was some indication that participants found
some experiences distressing, there was little indication that any fellow patients had been
critically ill or died during the study. Evidence from other studies suggests that witnessing
critically ill patients can lead to feelings of sadness and hopelessness and can even become
a burden affecting recovery (Laursen et al 2016, Larson et al 2013). Further investigation is
required to find out how such an event may affect patients in AMU given that they occur on a
regular basis in this environment.
58
12 Limitations
This very small study was done as part of a master’s degree programme and as such is too
small to be able to draw any firm conclusions about patient experience in AMU. The study
focused on fellow patients, but it became clear that there were many other things impacting
on participants, such as prior knowledge, fear about current illness and relationships with
staff, so it may have been better to consider the wider context rather than focus on one small
element of the experience as participants found it hard to separate them. It is worth noting
that the dual role as clinician and researcher in the study area may have had an impact on
some of the participant perspectives. The novice status of the researcher may have meant
that some opportunities for exploring participant feelings were missed due to inexperience.
13 Recommendations
Despite the shortfalls, this study has demonstrated that there are several unique features of
the AMU that warrant further investigation. For example, the transient nature of the
specialty, the disparate presentations and the underlying anxiety surrounding an unplanned
admission mean that further information is needed about the impact of AMU on
psychological welfare. Regarding the distress of witnessing fellow patients’ experience,
perhaps this aspect should be considered as part of the wider context in future studies,
although it would also be interesting to see how witnessing a specific event such as a
cardiac arrest affected patients. There is no doubt that further research is required into
patient experience in AMU.
59
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Appendices
Appendix 1. Search History
Search ID#
Search Terms
Search Options Last Run Via Results
S11
(*stress) AND (S9 AND S10)
Search modes - Find all my search terms
Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
393
S10 *stress
Search modes - Find all my search terms
Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
1,115,309
S9
( S1 OR S2 OR S3 OR S4 OR S5 OR S6 ) AND adult AND hospital
Search modes - Find all my search terms
Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
10,383
S8
( S1 OR S2 OR S3 OR S4 OR S5 OR S6 ) AND adult
Search modes - Find all my search terms
Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
32,511
S7
S1 OR S2 OR S3 OR S4 OR S5 OR S6
Search modes - Find all my search terms
Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
92,198
S6 roommate
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Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
1,024
70
S5 room mate
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Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
108
S4 patient-patient
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Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
7,154
S3 co patient
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Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
78,062
S2 co-patient
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Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
45
S1 fellow patient
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Interface - EBSCOhost Research Databases Search Screen - Advanced Search Database - CINAHL Complete;MEDLINE;PsycARTICLES;PsycINFO
6,256
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Appendix 2.
Data inclusion/exclusion for papers considering fellow patients in a hospital context
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Database search – 393 papers identified – Title search
completed
25 papers identified – abstract review completed
5 papers identified full text review completed - reference
list of identified papers reviewed
Review of reference lists of identified papers – 9 papers in
total
Quality assessment using CASP tool of 7 papers
included
368 papers excluded as paper obviously not relevant from title or not published in English
20 papers excluded as did not include hospital or fellow patients
4 new papers identified which fit criteria
2 papers excluded as they were already included in a meta-synthesis which was identified
Appendix 3.
Proposed Semi-Structured Interview Schedule.
Thank you for agreeing to take part in this study. You are about to be discharged from the
Acute Medical Unit and I would like to ask you some questions about your stay in this ward,
if that is alright.
Hello. What is your name?
Are you aged 18-35, 36-55, above 55
Is this the first time you have been in hospital?
Have you been a patient or visitor in the AMU before?
Please tell me why you came to hospital initially.
During your stay in the AMU, you were, I understand situated in a room with other patients.
How many patients did you encounter?
Did new patients arrive during your stay?
Did you expect to be with other patients in the hospital room when you were admitted? (How did you feel about this)
Did you get to know them at all?(prompts: did you talk with them or their families?)
Did you see or hear anything that was happening to the other patients during your stay?
(prompts: was this on ward rounds, during nursing interventions or conversations with patients or relatives?)
What did you witness concerning other patients?
How did you feel about anything that you witnessed?
Tell me more about how it made you feel.
Did you witness anything else relating to the other patients that you want to tell me about?
Tell me how it made you feel? (Tell me more about it)
How did you respond to what was happening around you? (did you stay in/beside your bed, walk away)
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Did you speak to anyone about what you witnessed? (who did you speak to?)
Did anyone (nurses/Drs/AHPs) explain anything to you about what was happening to any of the patients around you?
Do you think you will remember any events concerning other patients when you get home?
Have you told anyone else about them?
Do you think you will tell anyone when you get home?
Would you have liked anything to have been handled differently regarding the things we have discussed?
Do you have any suggestions about how to make things better for patients regarding the other patients being treated?
Is there anything else you would like to tell me about?
Thank you for taking part in the study. Your views are very important.
Appendix 4. IRAS project ID: 223378
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Witnessing the Distress of Fellow Patients in Acute Medicine
Participant Debrief Information
Researcher: HP
Thank you very much for agreeing to take part in this study. Your input is extremely important as it helps healthcare teams to improve quality of care and patient experience. I have put together a small explanation giving the background and possible outcomes for this research for your interest.
Background
The relatively recent introduction of Acute Medical Units (AMU’s) into UK hospitals was intended to improve mortality rates and quality of care following presentation to hospital with an acute medical problem, and to reduce length of hospital stay by ensuring that patients had early senior review and treatment by an appropriate clinician, followed by appropriate signposting to a relevant specialty team to meet the needs of the patient.
Although the clinical aims of the Acute Medicine approach have been effectively met, there is little evidence to suggest that the patients experience of the process has been given sufficient appraisal The AMU is a busy, hectic environment catering for patients with varied medical conditions, ranging from very minor ailments to life threatening conditions. The design of British hospitals means that there may be four or six patients sharing a ‘bay’, which means that patients are exposed to each other’s pain and suffering, from the very beginning of their hospital journey.
Aim
The aim of this study is to explore the lived experience of patients in the AMU, witnessing the distress of other patients and to discover how they make sense of their experience.
Potential Outcomes
These may include some or all the following:
Evidence promoting the redesign of hospital environments to include more side rooms or quiet spaces for patients away from the ward area.
Evidence for the replacement of curtains to provide better partitioning of shared rooms.
Improved nursing knowledge about the psychological impact of having other patients around during the acute admission phase.
Better informed educators about the importance of teaching nurses to assess psychological status and increase awareness of the stressors that impact on patients in acute medicine.
Demonstrate the need to develop a ‘patient debrief’ process to help patients to understand and rationalise the witnessed distress, whilst at the same time maintaining confidentiality.
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If you have any further questions about the research, or for some reason want to withdraw your data please contact me on xxxxxxxxxxx or via email at xxxxxxxxxxxxxx
If you feel you have been adversely affected by taking part in this study, and would like to speak to an independent support service you are advised to seek help from your GP or if you prefer you can contact:
IAPT – Contact: xxxxxxxxxxxxxAddress: 2 xxxxxxxxxxx email. xxxxxxxxxxxxxxxx
IAPT stands for Improving Access to Psychological Therapy and is an NHS service designed to offer psychological therapies (CBT) to people suffering from anxiety, depression and stress. IAPT may also work with people who suffer from panic disorder, simple phobia, OCD or PTSD.
The IAPT website also gives information about other services that are available to offer support
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Appendix 5.
Letter of Ethical Approval - University
Certificate of Ethical Approval
Applicant:
HP
Project Title:
Witnessing the Distress of Fellow Patients: A Phenomenological Study of Patients in an Acute Medical Unit.
This is to certify that the above-named applicant has completed the Coventry University Ethical Approval process and their project has been confirmed and approved as High Risk
Date of approval:
04 June 2017
Project Reference Number:
P47486
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Appendix 6.
Letter of Ethical Approval – Research Ethics Committee
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
11 August 2017
Ms DP
School of Nursing, Midwifery and Health,
Dear Ms P
Study title: Witnessing the Distress of Fellow Patients: A Phenomenological Study of Patients in an Acute Medicine. REC reference: 17/YH/0235 IRAS project ID: 223378
Thank you for your letter of 09 August 2017, responding to the Proportionate Review Sub-Committee’s request for changes to the documentation for the above study.
The revised documentation has been reviewed and approved by the sub-committee.
We plan to publish your research summary wording for the above study on the HRA website, together with your contact details. Publication will be no earlier than three months from the date of this favourable opinion letter. The expectation is that this information will be published for all studies that receive an ethical opinion, but should you wish to provide a substitute contact point, wish to make a request to defer, or require further information, please contact please contact [email protected] outlining the reasons for your request. Under very limited circumstances (e.g. for student research which has received an unfavourable opinion), it may be possible to grant an exemption to the publication of the study.
Please note: This is the favourable opinion of the REC only and does not allow you to start your study at NHS sites in England until you receive HRA Approval
A Research Ethics Committee established by the Health Research Authority
Confirmation of ethical opinion
On behalf of the Committee, I am pleased to confirm a favourable ethical opinion for the above research on the basis described in the application form, protocol and supporting documentation as revised.
Conditions of the favourable opinion
The REC favourable opinion is subject to the following conditions being met prior to the start of the study.
Management permission must be obtained from each host organisation prior to the start of the study at the site concerned.
Management permission should be sought from all NHS organisations involved in the study in accordance with NHS research governance arrangements. Each NHS organisation must confirm through the signing of agreements and/or other documents that it has given permission for the research to proceed (except where explicitly specified otherwise). Guidance on applying for HRA Approval (England)/ NHS permission for research is available
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in the Integrated Research Application System, www.hra.nhs.uk or at http://www.rdforum.nhs.uk.
Where a NHS organisation’s role in the study is limited to identifying and referring potential participants to research sites (“participant identification centre”), guidance should be sought from the R&D office on the information it requires to give permission for this activity.
For non-NHS sites, site management permission should be obtained in accordance with the procedures of the relevant host organisation.
Sponsors are not required to notify the Committee of management permissions from host organisations.
Registration of Clinical Trials
All clinical trials (defined as the first four categories on the IRAS filter page) must be registered on a publically accessible database. This should be before the first participant is recruited but no later than 6 weeks after recruitment of the first participant. There is no requirement to separately notify the REC, but you should do so at the earliest opportunity e.g. when submitting an amendment. We will audit the registration details as part of the annual progress reporting process. To ensure transparency in research, we strongly recommend that all research is registered but for non-clinical trials this is not currently mandatory. If a sponsor wishes to request a deferral for study registration within the required timeframe, they should contact [email protected]. The expectation is that all clinical trials will be registered, however, in exceptional circumstances non-registration may be permissible with prior agreement from the HRA. Guidance on where to register is provided on the HRA website.
It is the responsibility of the sponsor to ensure that all the conditions are complied with before the start of the study or its initiation at a particular site (as applicable).
A Research Ethics Committee established by the Health Research Authority
Ethical review of research sites
The favourable opinion applies to all NHS sites taking part in the study, subject to management permission being obtained from the NHS/HSC R&D office prior to the start of the study (see “Conditions of the favourable opinion” above).
Approved documents
The documents reviewed and approved by the Committee are:
Document Version DateCovering letter on headed paper 04 June 2017 Evidence of Sponsor insurance or indemnity (non NHS Sponsors only)
05 Aug 2016
Interview schedules or topic guides for participants 1.0 10 May 2017 IRAS Application Form [IRAS_Form_21062017] 21 June 2017 IRAS Checklist XML [Checklist_09082017] 09 Aug 2017 Letter from sponsor 04 June 2017 Other [Patient Debrief document] 1 10 May 2017 Other [letter in response to queries] 13 July 2017 Other [Letter to REC] V1 09 Aug 2017 Participant information sheet (PIS) V4 10 May 2017 Referee's report or other scientific critique report 05 June 2017
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Research protocol or project proposal [Research Protocol] V4 19 July 2017 Summary CV for Chief Investigator (CI) V1 14 Feb 2017 Summary CV for student V1 19 April 2017 Summary CV for supervisor (student research) V1 14 Feb2017
Statement of compliance
The Committee is constituted in accordance with the Governance Arrangements for Research Ethics Committees and complies fully with the Standard Operating Procedures for Research Ethics Committees in the UK.
After ethical review
Reporting requirements:
The attached document “After ethical review – guidance for researchers” gives detailed guidance on reporting requirements for studies with a favourable opinion, including:
Notifying substantial amendments Adding new sites and investigators Notification of serious breaches of the protocol Progress and safety reports Notifying the end of the study
The HRA website also provides guidance on these topics, which is updated in the light of changes in reporting requirements or procedures.
A Research Ethics Committee established by the Health Research Authority
Feedback
You are invited to give your view of the service that you have received from the Research Ethics Service and the application procedure. If you wish to make your views known please use the feedback form available on the HRA website: http://www.hra.nhs.uk/about-thehra/governance/quality-assurance
We are pleased to welcome researchers and R & D staff at our RES Committee members’ training days – see details at http://www.hra.nhs.uk/hra-training/
17/YH/0235 Please quote this number on all correspondence
Yours sincerely
pp Dr DB Chair
E-mail: [email protected]
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Appendix 7
Participant Information Sheet IRAS project ID: 223378
Study Title: Witnessing the Distress of Fellow Patients: Experiences of Patients in an Acute Medicine Unit
Dear Participant
You are invited to take part in a research study. Before you decide, it is important for you to understand why the study is being done and what it will involve for you. Please take time to read the following information carefully. Discuss it with friends or relatives if you wish. It is up to you to decide whether to take part in this study. Whatever you decide, the standard of care you receive will not be affected. If there is anything that is unclear, or you would like more information, please do not hesitate to ask.
What is this study about?
Hello. My name is HP and I am a Senior Nurse in the department of Acute Medicine at UHCW, and a mature student studying for a Masters by Research degree at Coventry University.
My Research will be looking at the experience of patients in the Acute Medicine Unit (AMU) who may have witnessed the distress, anxiety and suffering of other patients positioned nearby in the hospital ward. I would like to talk to you about your experiences during your stay in the AMU and my focus will be on how it felt to witness other patients’ distress, to find out whether it had any adverse effect on you.
The information will be collected through an interview which will seek to explore how it felt to live through the experience of being a patient in the AMU. It is hoped that by exploring patient experience in this way that health professionals can better understand your perspective and can begin to address some of the issues that you raise through having a greater awareness of how it feels to be a patient. In addition, the information collected will be used to influence future planning of AMU’s, regarding the environment and the way in which patients are transferred between departments in the hospital following an urgent or emergency admission.
Why might I been chosen to be approached to take part?
If you have been a patient in AMU and are being discharged home directly from AMU, you will be eligible to take part.
If you are transferred to another ward from AMU before you are discharged, you will not need to participate.
I have given you this leaflet on admission to AMU because I want you to have time to consider whether you would be interested in participating, even though it is not clear whether you will be eligible yet.
Do I have to take part?
No, participation in the study is entirely voluntary. If you decide to take part, you will be asked to sign a consent form. Should you change your mind, you are free to withdraw from the study any time up to 2 weeks following your interview and you do not have to give a reason. Furthermore, there will be no consequences for deciding to withdraw from the study.
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If you wish to withdraw then please contact the researcher either by telephone or email. The contact details can be found below.
What will happen to me if I take part?
If you agree to take part, the study will involve a one to one interview with the researcher. This interview will be very informal and will take place in a quiet room before you go home from hospital. During the interview, you will be asked a series of open questions exploring your experiences of being a patient in the AMU.
This interview will last between 45 and 60 minutes and will be audio recorded to enable the researcher to play it back later and write down what you have said. How much you disclose during the interview will be entirely up to you and the interview can be stopped at any time if you wish by asking the researcher to stop. You can also ask for the tape recorder to be turned off if you wish to discuss matters without them being recorded.
What are the possible disadvantages and risks of taking part?
The disadvantages or risks of you taking part in the study are minimal. The main disadvantage will be upon your time. Although, there is the possibility that some of the questions in the interview may raise issues that you find difficult to deal with. Please be assured that you do not have to answer any questions that you are uncomfortable with and you can ask for the interview to be stopped at any time. If you have any concerns about this or any other questions about participating in the study, the lead researcher is more than happy to talk to you before you make any decision. However, the lead researcher is ethically and legally obliged to inform you that there are no compensation arrangements for participation in this research.
What are the possible benefits of taking part?
In participating in this study, you will have the opportunity to talk about your own experience, which will help health professionals to gain a better understanding of how it feels to be a patient in the AMU. Our goal will be to use the information that we gather to improve the experience of the AMU for future patients.
What will happen to the information that I give during the study?
The interview will be audio-recorded and then transcribed by the researcher. Once the interview has been transcribed, the recording will be deleted. All data produced relating to your participation and involvement will be anonymised in order that you cannot be identified and stored securely on an encrypted data storage device. This will be kept in a locked drawer in the researchers locked office, at her place of work. There will be no possibility of you being identified in the final report or at any point during the research process.
What if I have concerns regarding the research process?
If you have concerns regarding the research process including the conduct of the researcher you can contact the Coventry University Faculty Chair of E&G Committee, LS on: [email protected]
Any complaints should be sent to the sponsor, Prof OS, at Coventry University on: [email protected]
What will happen with the results of the study?
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The results of the project will be collated and analysed, following this the project will be written up and the results disseminated in various forums.
Who has ethically reviewed this study?
The study proposal has been reviewed in accordance with both the NHS and Coventry University Ethics Procedures.
What If I witness any criminal acts or anything that may be harmful to patients?
Although the information you disclose will be treated with the utmost confidentiality, if you happen to disclose to me any information regarding criminal acts or acts of serious harm or abuse that you have witnessed, I am obliged to act. I have a legal obligation to report such acts to senior hospital management for further investigation. Depending upon the nature of the disclosure I may also be obliged to contact the police.
If I wish to be part of the study and I am eligible to do so, what do I have to do next?
Finish reading this information leaflet and ask any questions that you would like answered by the researcher. If you wish to take part you can either approach me directly, as I will be available on the unit all day or ask your nurse to let me know that you wish to take part.
I will then ask you to read and sign a consent form which indicates that you understand the information you have been given and have agreed to participate.
I do hope you feel able to participate in this study and look forward to hearing your story.
HP
Tel: xxxxxxxxxxx
Email: [email protected]
Research Supervisor: DP
School of Nursing, Midwifery and Health,
Tel: xxxxxxxxxx
Email: [email protected]
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Appendix 8 IRAS project ID: 223378
Witnessing the Distress of Fellow Patients: Experinces of Patients in an Acute Medicine UnitConsent Form
Name of researcher: Mrs HP Please initial box
1. I confirm that I have read and understood the participant information sheet for the above study. I have had the opportunity to consider the information, ask questions and have had these questions answered satisfactorily.
2. I understand that my participation is voluntary and that I am free towithdraw my consent any time up to 2 weeks after the interview without giving a reason. Any information I have supplied will be destroyed immediately; any audio recording or transcripts being electronically deleted, if I decide to withdraw from the study.
3. I understand that any information I provide will remain confidentialand that any identifiable information will be removed from publications.
4. I understand that the data will be treated in accordance with the UK Research Integrity Office Code of Practice (2009)
5. I understand that the information I provide may be used and analysed for research purposes and the findings may be publishedin an academic journal, although any data I provide will be completely anonymised.
6. I understand that I will be audio-recorded during the interview and Igive my permission for this provided the data is securely stored.
7. I agree to take part in the above study.
8. I understand that relevant sections of my medical notes and data collected during the study, may be looked at by individuals
the sponsor from regulatory authorities or from the NHS Trust,
where it is relevant to my taking part in this research.
I give permission for these individuals to have access to my records.
9. I am aware that any information I disclose relating to incidents of serious harm or abuse to patients, that you are under a legal obligation to report this to senior hospital management and, if necessary, the police.
________________ _________________ ________________Name of Participant Date Signature________________ _________________ ________________Name of person Date Signaturetaking consent
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Appendix 9
Excerpt from Master Themes: evidence from the data
A. Feeling Under Threat
Vulnerable selfElsie: Well, notwithstanding the fact that it is upsetting to see other people in distress, but you’re in distress as well. (para 52)Tracey: I suffer from panic attacks and things like that…stress myself with what’s been going on in my life. (para 102)Tracey: I ain’t strong if you know what I mean ‘cause I have been abused. (para 104)Tracey: My mum disowned me a long time ago. She went out with a paedo who raped me. (para 133) Jim: Well you can pull your curtains round but it’s no…no privacy in terms of …of what’s going on, what’s being done or what they’re having to do with them (para 89)Jim: I might not be the best person… I’m not very good at voicing things… (para 1)Pete: One gentleman was getting out of bed and he was covered in his own excreta and I found that quite horrifying. (para 96)
Anxiety and fear Jim: If I’d have thought there was a chance I was staying overnight it would have been useful to have known because I could have got...I could have at least got my wife to bring me…my tablets in. (para 161)Elsie: I don’t think it’s a very good sign if you’re put in a side room, because my friend was. (para 60)Tracey: It really scared me to tell you the truth. (para 54)Tracey: ‘cause I thought it was my sister; do you know what I mean? (para 80)Tracey: It started my pains off in my chest. Seeing the lady… (para 86)Tracey: I can’t cope, can’t do this, can’t do that. (para 117)Tracey: I thought I were a gonner. (para 14)Pete: So, they moved me into the corridor, but there was at least twenty other people, and some quite old people, in the corridor. (para 154)
Observations of othersJim: Yes, it certainly…it certainly affected my rest because there was that much of erm coming and going and shouting and wanting and doing. (para 59)Jim: particularly yesterday there was one gentleman that was er obviously a little bit confused as well, who was keep trying to get out of bed, who was having troubles with his catheter. (para 25)Jim: You just want to rest or… read or do anything else and it is just disturbing all the time because this is always going on. (para 35)Elsie: it is upsetting to see other people in distress. (para 52).Elsie: I certainly did have a feeling of compassion for a few ladies. I mean they’ve gone now. God knows where they’ve gone, but they did look poorly. (para 52)Elsie: All four full and a quick turnover on a few of the beds as well. (para 30)Elsie: some of them looked as if they were unconscious, to be honest. (para 44)Tracey: I have been stressed just watching other people coming and going. Coming and going. (para 62)Tracey: People watching you…. (para 36)
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Tracey: But….the only thing is…..shut the curtains, you know….’cause it did panic me a bit. I was having a bit of….sharp pains last night. I thought Oh… no I’m losing another one. (para 96)Tracey: And that girl, she must have pressed, and the nurse took a while to come…to attend to her. (para 76)Pete: I’ve already been watching the one gentleman that left this morning… I felt just….I felt compassion for him because he’s not eating. (para 90)Pete: One’s got bad breathing problems. He’s very concerned and anxious so he wouldn’t be responding to anything like that. The other chap, I don’t think he can speak very well. (para 64) Pete: and I saw some people that were quite anxious, you know. (para 164)
Previous bad experiencesJim: as I say working here I’m used to seeing it a lot…around. I see people in all sorts of…states…coming up into theatres. (para 107)Elsie: Where I don’t think it’s a very good sign if you’re put in a side room, because my friend was. (para 60)Tracey: So, while you’re feeling unwell yourself, you’re also going through other memories. It’s bringing back memories of something else...that’s very hard. (para 158)Pete: I’ve got a lot of memories over the last 10 years of what I have witnessed and people I’ve met, you know since I’ve been in hospital. (para 86)Pete: I was going through that process of a slight depression breakdown. (para 117)Pete: They moved me to a ward and put me in a room on my own I was left there for hours and I have never felt so ill in all my life. (para 119)Pete: I felt that my experience on that particular occasion could have been dealt with differently. (para 117)
Feelings of intrusionJim: Although I’m there and ill, I’m not that ill and you feel like… I almost felt like it would be looked at like I had almost been sent back like I was last time so not actually me feeling particularly ill. (para 23)Jim: Because they’re a lot iller than I am at the moment… its quite a…. that impacts in itself. (para 23)Jim: Whereas possibly someone…someone like myself may be a better person to put in a side-room because you don’t need to be being kept an eye on. (para 55)Elsie: Well really, I felt lucky. I wasn’t half as bad as they were. No not half as bad. (para 46)Elsie: I was probably interrupting them more than they were interrupting me. (para 70)Tracey: I was just concentrating on my dog to tell you the truth, and I was concerned about the lady opposite me with her breathing. (para 66)Tracey: and you’re looking at them as well. (para 40)Pete: They stopped till eleven o’clock, but I didn’t want to intrude too much on their space. (para 74)Pete: They were all very quiet. I didn’t bother to…you know…talk to them. (para 42)Pete: I didn’t want to push it because they were very anxious about him. (para 74)Pete: his wife and son would be quite worried and anxious themselves, they don’t want somebody overcrowding them with conversation do they. (para 78)
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Competition with othersJim: I understand that there’s a lot of pressure and a lot of difficulty but er… I mean as an observation as well with the one patient…particularly he was concerned about his catheter (para 163)Jim: And that’s a consequence of sharing with people…who are maybe having problems…and recognising…seeing that they have got…difficulties in doing that…you know there’s urine all over…the toilet seats...the floor. (para 125)Pete: I was in a cubicle and then they needed the cubicle, so they moved me into the corridor. (para 154)Pete: You’re in a line with other people and some people have probably…..got erm…..worse conditions than myself. (para 158)
Unpleasant experiencesJim: For me personally as a personal space I have noticed that...that the bathroom in there is terrible. (para 121)Jim: Because it seems that some of these gentlemen aren’t actually capable of...of keeping things within the toilet and that’s been a mess numerous times…and obviously because of that it smells in there. (para 123)Jim: This is one of the best places in the world to get infections of every kind under the sun (laughs) (para 133)Tracey: It was like looking at my sister. You know what I mean?........I’m sorry [for being upset] (para 149)Tracey: My sister has got the same hairstyle as [patients name] (para 155)Tracey: I thought Oh… no I’m losing another one. (para 96)Pete: Probably upsetting, but environmentally unfriendly isn’t it…a smell of that and seeing the incident you know….that was….something that you don’t forget. (para 97)Pete: So, I had a body wash and I came out and there was a smell of, again, excreta, which was quite off-putting. (para 109)Pete: Some mess on the toilet pan and I felt a bit sick. (para 99)
B. Self-Protection Measures
Detachment from eventsJim: No. I erm. I tend to very much... Ok Just try and blank stuff out. That’s my bit. (para 45)Jim: I stayed out of it (laughs). (para 169)Jim: I could land myself in it...so that if I wasn’t an employee I might have been more inclined...to help. (para 171)Jim: You’ve got those two and somebody that… and another one that was just trying to get out of bed. (para 31)Elsie: No extent of conversation (para 38)Elsie: No. I think they were all too poorly and I was too exhausted really. (para 36)Elsie: Nothing, with the exception of the nurses going to see them. (para 40)Elsie: I don’t suppose you’re going to get a lot of time to think about other peoples’ problems. (para 52)Elsie: No. I’ve got real difficulty… I’ve hearing problems. (para 103)Tracey: Just said hello to an old lady that was it. (para 50)Tracey: They have been ever so good to tell you the truth. Nice and quiet. (para 92)Tracey: I was just concentrating on my dog to tell you the truth. (para 66)Pete: I think mentally you have to be careful you don’t take too much of their problems onto your shoulders. (para 58)
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Pete: I think I heard a few things, but I’ve got…my hearing isn’t brilliant, so sometimes I can hear voices, but I can’t define the words. (para 60)Pete: So I didn’t try and take a lot of it in because it’d not my business anyway. (para 62)
C. Regaining ControlCare for othersJim: But he did seem to be a little better after that. That he didn’t seem to moan about that as much. (para 165)Tracey: I do care for other people besides myself. That’s how I’ve been brought up. (para 90)Tracey: But the point is I’ve got a dog. You know what I mean and she’s one year old. (121)Pete: I always try to talk to people. Make them feel comfortable. (para 50)Pete: ….I’ve just been speaking to the gentleman at the side of me…………it’s just nice to speak to people isn’t it? (para 131)Pete: On a spiritual view it’s good to be compassionate isn’t it, but, like I said sometimes you have to know when to speak and when not to speak because of the situation. (para 82)Pete: Because I believe that when you spread happiness or try and lift somebody up, you’re also taking your burden away, by dwelling on your own burden. (para 92)
Care for selfTracey: My dog maybe. She’ll just be excited to see me. Want to play, I’ll be going oh no [laughs] (para 161)Elsie: And we all went out…family went out. It was lovely. (para 10)Pete: Because I believe that when you spread happiness or try and lift somebody up, you’re also taking your burden away, by dwelling on your own burden. (para 92)Pete: I think mentally you have to be careful you don’t take too much of their problems onto your shoulders. (para 58)Pete: Not to dwell too much on myself, self-pity, you know. (para 92)
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