International Journal of Nursing Studies 50 (2013) 392403

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International Journal of Nursing Studies

journal homepage: www.elsevier.com/ijns

Stroke survivors experiences of the fundamentals of care:

A qualitative analysis
Alison L. Kitson a,b,c,*, Clare Dow d, Joseph D. Calabrese e, Louise Locock f,g,
Asa Muntlin Athlin a,h,i,j
a

School of Nursing, University of Adelaide, Australia

Centre for Evidence based Practice South Australia, School of Nursing, The University of Adelaide, Australia
Green Templeton College, University of Oxford, United Kingdom
d
Institute of Health and Wellbeing, University of Glasgow, United Kingdom
e
University College London, United Kingdom
f
Health Experiences Research Group, Dept Primary Care Health Sciences, University of Oxford, United Kingdom
g
National Institute for Health Research, Biomedical Research Centre, Oxford, United Kingdom
h
Department of Medical Sciences, Uppsala University, Sweden
i
Department of Public Health and Caring Sciences, Uppsala University, Sweden
j
Department of Emergency Care, Uppsala University Hospital, Sweden
b
c

A R T I C L E I N F O

A B S T R A C T

Article history:
Received 2 April 2012
Received in revised form 17 September 2012
Accepted 24 September 2012

Background: Managing the fundamentals of care (e.g. elimination, personal hygiene,

eating,) needs to be more explicitly addressed within the patient-centred care discourse. It
is not possible to investigate issues of patient dignity and respect without acknowledging
these basic physical needs. While the literature on caring for people with a stroke is
extensive, no studies to date have described stroke survivors experiences of all of these
fundamentals during the in-hospital phase of their care.
Design: Secondary analysis of qualitative data grounded in interpretative phenomenology
Participants and settings: Fifteen stroke survivors with in-hospital experiences from
multiple healthcare settings and healthcare professionals across the United Kingdom were
included.
Method: A secondary thematic analysis of primary narrative interview data from stroke
survivors.
Results: Survivors of strokes have vivid and often distressing recollections of their
experiences of the fundamentals of care. For every description of a physical need
(elimination, eating and drinking, personal hygiene) there where lucid accounts of the
psychosocial and emotional impact (humiliation, distress, lack of dignity, recovery,
condence). Linked to the somatic and emotional dimensions were narratives around the
relationship between the patient and the carer (nurse, doctor, allied health professional).
Positive recollections of the fundamentals of care were less evident than more distressing
experiences. Consistent features of positive experiences included: stroke survivors
describing how the physical, psychosocial and relational dimensions of care were
integrated and coordinated around their particular need. They reported feeling involved in
setting achievable targets to regain control of their bodily functions and regain a sense of
personal integrity and sense of self. Sociological constructs such as biographical disruption
and loss of self were found to be relevant to stroke survivors experiences. Indeed, such
constructs may be more linked to the disruption of such fundamental activities rather than
the experience of the illness itself.

Keywords:
Fundamentals of care
Nursing care
Patient centred care
Qualitative study
Secondary analysis
Stroke

* Corresponding author at: School of Nursing, University of Adelaide, SA 5005, Australia. Tel.: +61 8 8303 3595; fax: +61 8 8303 3594.
E-mail address: alison.kitson@adelaide.edu.au (A.L. Kitson).
0020-7489/$ see front matter 2012 Elsevier Ltd. All rights reserved.
http://dx.doi.org/10.1016/j.ijnurstu.2012.09.017

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393

Conclusions: We recommend more practical and integrated approaches be taken around

understanding and meeting the physical, psychosocial and relational needs of patients in
hospital which could lead to more patient-centred care experiences. These three
dimensions need to co-exist in every care episode. More exploration is required to
identify the common fundamentals of care needs of patients regardless of illness
experience.
2012 Elsevier Ltd. All rights reserved.

What is already known about the topic?

 Fundamental aspects of care are being neglected in the
acute hospital setting and despite much attention failure
to deliver respectful and patient-centred care persist.
 People who have had a stroke are particularly vulnerable from an activities of daily living and emotional
perspective.
 There is a growing acknowledgement that peoples
experiences of the fundamentals of care need to be
captured and used to transform behaviours and systems.
What this paper adds
 Stroke survivors recount vivid stories of their care
experiences long after the actual acute episode and they
talk about fundamentals of care in terms of the
integration of the physical and the psychosocial,
mediated through direct interaction with the healthcare
professional.
 If these three dimensions are not consistently and
continuously addressed for each essential care episode,
then individuals are less likely to experience patientcentred or dignied care.
 Stroke survivors perceived doctors, nurses and allied
health professionals as contributing to their positive and
negative experiences of fundamentals of care.
1. Background
In her denition of nursing, Virginia Henderson (1966,
p. 15) stated that it was the unique function of the nurse
to assist the individual, sick or well, in the performance of
those activities contributing to health or its recovery (or to
peaceful death) that he would perform unaided if he had
the necessary strength, will or knowledge. Nursing, she
believed provides the basis for physical comfort, which
underlines the importance of the patients subjective
experience for an encompassing understanding of health
and healthcare (Henderson, 1988).
Contrasted with these statements is the mounting
concern that essential or fundamental aspects of care are
being neglected. In the UK, the Care Quality Commission
(2011) found that over 55% of acute hospitals undergoing
an unannounced inspection failed to comply with minimum standards around nutrition and dignity of older
hospitalised patients. Worldwide, other health systems
struggle with the same issue (Institute of Medicine, 2001;
New South Wales Health, 2009; Rutherford et al., 2004).
The argument is that the caring professions have failed to
deliver what is a simple service to provide: namely basic
care to sick and vulnerable people.

In order to understand this problem more fully, an

international and interdisciplinary team of clinicians,
researchers and scholars have come together to explore
the underlying constructs (The Oxford International
Learning Collaborative and Health Experiences Institute
based in the Department of Primary Care University of
Oxford). We use the term fundamentals of care to cover
what some would call personal care or activities of daily
living, care tasks which have been variously dened in
nursing literature (Kitson et al., 2010). Our aim was to
explore how patients experience fundamentals of care
using a list of activities that had been derived from nursing
literature (Kitson et al., 2010). We have used interviews
from stroke survivors as the starting point to connect what
the fundamentals of care mean to one group during the
acute in-hospital phase of their illness experience.
1.1. The case for studying fundamentals of care
There are many challenges when considering or viewing fundamentals of care as a discrete group of activities.
First, they are universal activities essential for life, part of
our daily self-care activities often relegated to the
unconscious or common sense level of knowledge and
as such rarely qualify as something to be medicalised.
However, when illness happens, the healthcare literature
traditionally has employed a number of related terms
when discussing this phenomenon: activities of daily
living (ADL) (Katz and Akpom, 1976) and self-care (Orem
and Taylor, 2011). ADL describes elements of basic human
functions. ADLs can be affected by disease, injuries,
personal factors and environmental factors (Buurman
et al., 2011). The index of ADL measures the overall
function, with respect to bathing, dressing, toileting,
transfer, continence, and feeding (Katz and Akpom, 1976).
Self-care is a process where the person participates
actively in the treatment, or makes therapeutic, behavioural and environmental adjustment according to
professional advice (Partridge, 1997) and is an important
part of the rehabilitation process (Riegel and Dickson,
2008). Self-care, within the medicalisation of the term
covers all those activities (such as bathing, dressing,
toileting, transfer, continence, and feeding) that the
individual would do if they had the necessary strength
will, or knowledge (Henderson, 1966).
Kitson et al. (2010) found that multiple terms have been
used in seminal nursing textbooks to describe fundamentals of care. Rather than having consistent and
coherent agreement around what constitutes fundamentals of care, they found the frequency and way of
representing them varied over time. For example, elimination has been described as: elimination, elimination

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Table 1
Fundamentals of Care Template.
Fundamental of care

Patient experience

Safety, prevention and medication

Communication and education
Respiration
Eating and drinking
Elimination
Personal cleansing and dressing
Temperature control
Rest and sleep
Comfort (including pain management)
Dignity
Privacy
Respecting choice
Mobility
Expressing sexuality
Source: Kitson et al. (2010).

processes and excreta, continence, toilet needs, urinary

elimination and liquid consumption, uid and electrolyte
balance and acid base balance. Specically, the review
found that terms such as safety, nutrition and elimination
were mentioned as fundamentals of care by all included
texts whereas elements such as comfort and pain management, dignity and privacy were not consistently identied
as core fundamentals of care.
These ndings suggest that rather than being a
commonly understood construct fundamentals of care is
not consistently used in health by nurses and other
professional groups. From this review a Template consisting of 14 elements identied as being linked to the delivery
of fundamentals of care to patients by nurses was
developed (Table 1).
1.2. Case for studying fundamentals of care in relation to
patient-centred care initiatives
The seminal work of Gerteis et al. (1993) identied
seven dimensions relating to patient-centred care. These
include: respect for patients; coordination and integration
of care; information, communication and education; physical comfort; emotional comfort/alleviation of fear and
anxiety; involvement of family and friends and transition
and continuity. Several of these dimensions (in italics) link
with the fundamentals of care list.
Other seminal work on patient-centred care has
reinforced the centrality of safety and informed respectful
care (Institute of Medicine, 2001); exploring the patients
illness experience and -understanding the whole patient
(Stewart, 1995). Mead and Bower (Mead and Bower, 2000)
built upon Stewarts (Stewart, 1995) work identifying ve
conceptual dimensions of patient-centredness. These
included: taking a biopsychosocial perspective, seeing
the patient as a person, sharing power and responsibility,
working to maintain the therapeutic relationship or
alliance and nally acknowledging the doctor-as-person.
McCormack and McCance (2006) have argued that patientcentred nursing has four core constructs: attributes of the
nurse, the context of care, the way person-centred care is
delivered, and the types of outcomes that result from
patient-centred care.

Kitson et al. (2012) undertook a narrative review of the

medical, nursing and health policy literature on patientcentred care in relation to patients in the acute care setting.
They found three main themes: patient participation and
involvement, the relationship between the patient and the
healthcare professional (regardless of professional group)
and the context where care is delivered. Importantly,
elements around addressing physical and emotional needs,
respecting the patient as an autonomous individual,
engaging in effective communication were all identied
as essential to the effective delivery of patient-centred
care.
Fundamentals of care are embedded in our conceptualisation of patient-centred care and what constitutes
healthcare quality. Yet, our argument is that we do not
have a clear theoretical or conceptual understanding of
how we deliver fundamentals of care within the healthcare
setting. Also, we have not explored the experience of
fundamentals of care from the patients perspective in any
systematic way.
2. Aim and objective
In order to test these assumptions we decided to use the
Fundamentals of Care Template and take a sample of
interviews from people who had had a stroke and explore
what they said about their experiences of fundamentals of
care, if anything. An overview of the research literature of
stroke survivors experiences of individual fundamental of
care (such as stroke patients experiences of personal
hygiene, eating, drinking, going to the toilet) revealed that
few studies explored the individuals experience of these
fundamentals of care in an integrated way. Burtons
phenomenological study of six people conrmed the
importance of the integration of the physical, emotional
and social aspects the individuals life to enhance recovery
(Burton, 2000a). Less than half of the articles reviewed
(n = 47 papers) had the individual as the subject and more
often the staff, the nurses or the caregivers were the
subjects of the enquiry. The term fundamental of care was
not used in any of the papers and there were a limited
number of studies about the interaction between the
stroke survivor and the nurse. Several studies were focused
on functions or physical limitations as they related to
experiences of recovery. On the other hand, a number of
studies showed that social and emotional consequences
were often expressed by the stroke survivors as a
limitation in their daily life (Lawrence, 2010; McLean
et al., 1991) and had profound psychological impact
(Hafsteinsdottir and Grypdonck, 1997; Alaszewski et al.,
2006; Salter et al., 2008).
The emerging questions were:
1. Do people who have survived the acute stage of stoke
talk about fundamentals of care?
2. If so, how do they talk about them?
3. What fundamentals of cares are most frequently
described?
4. What sort of language is used?
5. How do stroke survivors talk about their experiences
with staff?

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6. Does the Template (Table 1) adequately reect what

stroke survivors describe as the fundamentals of care?

395

analysis. Furthermore, the study has been carried out in

accordance to the Declaration of Helsinki (World Medical
Association, 2008).

3. Method
A secondary analysis of qualitative data (narrative
interviews) grounded in interpretative phenomenology
was used. Secondary analysis utilises existing data,
collected for prior purposes, in order to pursue a research
interest which is distinct from the original work (Heaton,
1998, 2000). New research questions are developed and
the same or different research teams can interrogate the
original data. Secondary analysis can take several forms: a
more intensive focus on one particular nding, a selective
focus on a subset of the original, or a retrospective analysis
of the whole or part of a data set from a different
perspective to examine concepts which were not central to
the original research (Hinds et al., 1997; Szabo and Strang,
1997; Sandelowski, 1997; Thorne, 1990). It can be used to
generate new knowledge, new hypotheses, or support
existing theories. It also reduces the burden placed on
respondents by negating the need to recruit further
subjects thereby permitting wider use of data from
respondents who might be difcult to access.
For the purposes of this study, two members of the
original study (LL and CD) worked with the other team
members (medical anthropology and nursing backgrounds) to undertake the secondary analysis.
3.1. Data collection
The ndings come from a re-analysis and interpretation
of narrative interviews with people who had had a stroke
from a study conducted in 20062007, funded by a Big
Lottery grant to the Managed Clinical Network on the Web
(Scotland) and the Alliance for Self Care Research (University of Stirling) and updated with a further 11 interviews in 2011. One author (CD) was the lead researcher on
the original study; LL and CD undertook the update
interviews. Both interviewers have long experience of
qualitative methodology. The original study was a wideranging exploration of what it is like to live with stroke
including experiences of hospital care. Original interviews
were conducted across the UK with a total of 58 people
living with stroke. Diverse purposive sampling (Coyne,
1997) was used in the original study to ensure variation in
socio-demographic characteristics and types of experience.
Participants were recruited from a variety of sources
including general practitioners, nurses, physiotherapists,
occupational therapists, support groups and by word of
mouth and were interviewed at home. Interviews lasted
between 1 and 4 h. The rst half of the interview used a
narrative approach, inviting people to tell their story in
their own words for as long as they wanted. Semistructured interviewing then covered additional topics not
raised during the narrative section, or explored topics in
more depth. Original interviews were video or audiorecorded, and transcribed verbatim. The research methods
were approved by a Multi-centre Research Ethics Committee, which included the use of the data for secondary

3.1.1. Secondary analysis

Using Heatons (2000) ve categories of secondary
analysis, we suggest this paper falls into the category
supra-analysis, in that it examines the data from a new
perspective, which had not formed part of the primary
research.
We re-analysed a subset of the data using a Template
which encapsulates the fundamentals of care as dened by
nursing professionals (Kitson et al., 2010). We were
particularly interested in peoples experiences of care in
hospital, what was important about that care and where
care around the fundamentals was perceived as lacking.
We also sought to identify topics which interviewees
raised as important but which were not captured in the
fundamentals of care list and which could inform the
theoretical renement of the construct.
3.2. Participants and settings
A purposive sample (a sub-sample of 12 interviews
selected from the original database of 58 interviews and a
further three from 11 interviews from the 2011 update)
was selected to include a range of ages (mid 30s to mid
80s), gender (6 men and 9 women) impact of stroke
(causing moderate to severe impairment in physical
function post acute stage) and experiences of care
(focusing particularly on interviewees recollections and
accounts of the in-hospital or acute phase of their care).
Interviewees were selected from all parts of the UK and
therefore had experiences of multiple health settings
(acute general medical, dedicated stroke unit, rehabilitation unit) and health professionals (specialist stroke team
members and generalists and all members of the multiprofessional team). We particularly selected interviews
which included people who had a moderate to high degree
of impairment following stroke (as identied in the
original interviews) and had rich data of hospital
experiences which were likely to include talk about
fundamentals of care. Therefore our sample was skewed
to interviews where two of the original researchers knew
we would nd data on experiences of the fundamentals of
care.
Our primary interest was in patients descriptions of
fundamentals of care: we were not interested in context
(whether they were cared for in a stroke unit or a general
medical ward) nor in the treatment philosophies of the
units although research does identify the impact of these
two dimensions on stroke survivors experiences (Evans
et al., 2002).
3.3. Data analysis
A total of 12 interviews were coded from the original
data set of 58 interviews and three were added from the
2011 data collection update. The additional three interviews were included to explore and elaborate on specic
themes that emerged from our preliminary analyses and to

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396
Table 2
Summary of data analysis process.
Steps in the analysis

Action

Role

Familiarisation and
conrmation

Reading and rereading of original interview transcripts

identifying the number of times and how interviewees
referred to or discussed activities, experiences or
feelings related to fundamentals of care
At this point it emerged that stroke survivors did have
many and vivid recollections which linked their
physical experiences of care with psychosocial and
emotional dimensions
Using the Fundamentals of Care Template two team
members were allocated a number of interviews to
reanalyse. Direct text per interview was extracted as
it related to a fundamental of care
Two data sets were constructed: one based on the
Template which summarised all 15 interviewees
comments about each fundamental of care and one
data set per interviewee outlining their detailed
account of their experiences of fundamentals of care
An overarching data base was collated pulling
together each researchers extracted comments per
fundamental of care related to each interview
This master data base was used to interpret and
rene the data and to construct themes

Each team member independently read the

interviews and met to share initial interpretations

Consistency of data
extraction

Interpretation

check that more recent contextual conditions (around

resources, funding, and treatment experiences) were not
inuencing stroke survivors accounts of the fundamentals
of care.
JC originally analysed and coded the initial 12 interviews using the Fundamentals of Care Template. All
authors met in June 2011 to discuss this analysis and to
rene the emergent key themes. Discussion in this session
resulted in the rened understanding of the patient
experience of fundamentals of care (essentially realising
that we were dealing with a complex multidimensional
construct rather than a linear process or list of activities).
Following this meeting CD, LL, and ALK divided up the
original 12 interviews between them and each re-coded
their allocated transcripts using the rened understanding.
The secondary analysis was supported at this stage by
AMA who created an overarching database that summarised and collated the independent fundamentals of
care coding undertaken by each researcher according to
the rened understanding. AMAs role was to ensure that
all relevant text from the original interviews was
recorded in the Fundamentals of Care Template. From
this ALK undertook a thematic analysis reading and rereading each fundamentals of care coding report
prepared by the individual researchers and identifying
main themes and descriptors (direct quotes from the
interview data) linked to each main fundamentals of care
theme. These emerging themes were subsequently
reviewed and rened by the whole team creating the
nal analysis (see Table 2).

One team member who had been involved in the

original study (LL, CD) was partnered with a team
member with a clinical background (JC, ALK, AM-A)
to undertake the reanalysis of allocated interviews

The team lead undertook the nal interpretation and

analysis of the whole data set circulating
interpretations with the whole team and discussing
ndings until consensus was reached

There were some descriptions of positive experiences of

recovery processes or how staff helped patients cope (see
Table 3) but also many more difcult memories which may
be peculiar to the sub-group we selected. Experiences of
the physical aspects of fundamentals of care were linked to
psychosocial and relational aspects. Accounts of the impact
of not being able to care for self led to descriptions of
embarrassment, humiliation, loss of self condence and
identity. Such accounts resonated with Burys notion of
biographical disruption (Bury, 1982), and loss of self
(Charmaz, 1983) was also evident in the data, raising the
question as to whether the trauma of the illness experience
is more related to the loss of independence in fundamentals of care rather than the illness itself.
The results are presented in three sections: the
accounts of the physical, the psychosocial and patients
experiences with staff (summarised in Table 3). The
accounts are inextricably intertwined; we have separated
them out in an attempt to provide greater clarity about the
interdependencies between the physical, psychosocial and
relational aspects of the stroke survivors experiences of
fundamentals of care, but inevitably the boundaries are
blurred.
4.1. Physical elements

4. Results

Mobility, elimination, eating and drinking, safety and

medication, personal cleansing and dressing and comfort
were frequently discussed. Stroke survivors experiences of
rest and sleep, respiration, temperature control and
aspects of care related to sexuality were less evident in
the data.

People who have survived a moderate or severe stroke

have many experiences related to fundamentals of care.
These memories commonly describe the trauma, loss,
anxiety, humiliation, embarrassment, fear and isolation of
being dependent on others for the fundamentals of care.

4.1.1. Mobility
Two major themes emerged: one category described
the pervasive impact of the stroke on mobility everything affected and the other theme described respondents accounts of how they experienced recovering their

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397

Table 3
Fundamentals of care: physical, psychosocial and relational elements.
Fundamentals of
care (FOC)

Physical

Psychosocial

Relational

Mobility

Everything affected
A structured approach to
recovering mobility

Frustration
Feeling of achievement and
self worth

Elimination

The use of devises and

equipment to support
elimination

Self-esteem, dignity
humiliation

Eating and drinking

Assessing the mechanics of

eating and drinking. The
quality of the food
Medication
Fear of falling

Humiliation and frustration

Feeling of achievement

Structured support, small achievable goals, good

rapport, reinforcing relationship
Little involvement, goals not set and patients having to
struggle to set own goals
Need for structured support and the setting of small
achievable goals
Respect and support to maintain sense of dignity and self
esteem
Good assessment generally but lack of clear goals and
achievable steps to enable feeling in control of food.
Universal view that food was unappetising
Good sense of safety in relation to medication, falls and
environment. Positive staff relations relate to education
around medication and falls education and involving
patients in decision making
Attention to personal detail lacking and patients
suffered as a result.
Need for more specic goal setting and enabling patients
to regain self esteem
Staff providing physical and well as emotional
comfort rarely experienced

Safety, prevention
and medication

Fear and anxiety

Desire to self care and be in
control

Personal cleansing
and dressing

Regaining independence

The emotional anxiety and

embarrassment related to
not being able to wash

Comfort

Managing pain and physical

comfort

Rest and sleep

Experience of overwhelming
fatigue and tiredness
Change of breathing pattern

Managing the psychological

and emotional aspects of
comfort
Fatigue and tiredness
leading to despondency
Anxiety about not being
able to breathe
Feeling dirty and
uncomfortable
Loss of self esteem
Loss of sexual identity
Impact on self-image
altered body image
Emotional reactions
Physical and intellectual
challenges
Making sense of what has
happened
Personal space or lack of it

Respiration
Temperature control
Expressing sexuality

Symptoms of feeling hot,

sweaty
Perception of loss of libido

Communication
and education

Having to come to terms with

needing help with personal
aspects of care
Physical limitations that make
communication difcult

Privacy

Physical location

Respecting choice

Little involvement in choosing

how to manage physical
routines

Dignity

Exercising choice
Lack of choice

mobility. Several respondents talked about the impact

their stroke had on their whole bodys ability to move:
. . .you are in one position in the bed and you cant move,
you cannot move yourself, theres, theres no way you
can turn, you are in one position and in fact I stayed on
my, at on my back in that one position for 2 weeks.
(S0A)
Such descriptions communicate the individuals dependency on the ability of those around them to know how to
manage this signicant and prolonged loss of mobility. The
second theme was that of the positive effect of goal setting
to help in the rehabilitation process. Several talked about
the role of allied health staff in particular:
But its thanks to the physiotherapist and the occupational therapist and the various exercises that they give
you from week to week, fortnight to fortnight and they

Little or no examples of support from staff

No comments
No comments
No comments
Dignity as a function of respect for staff and them
respecting the patient rarely experienced
Perception that staff lack emotional intelligence
The importance of building rapport on the
simple things
The challenge of having so many different carers
and little physical or metaphorical space to
escape to
Establishing a positive relationship with staff that
enables making active choices

set you targets and things like that. And theyre

absolutely tremendous, you know, theyre really, really
excellent. (S0B)
However, there was little evidence from the interview
data to show that the structured, individualised, goal
setting approach that was described around learning to
walk again was consistently experienced in general
mobilisation such as negotiating ones way around a toilet
space:
. . .there would, come a time when you were taken to
the toilet or bathroom and there were various devices
to try and swizzle you into the bath from a standing
position. And there was a way of achieving this with
some care and diligence and equally a way of doing it
with no interest, indeed disinterest frankly, and a
wholesale lack of caring. (S0C)

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4.1.2. Elimination
Two main themes emerged: the use of devices and
equipment to support elimination and the way this was
experienced (usually described in terms relating to loss of
self-esteem, loss of dignity and embarrassment). Respondents described the challenges of having to urinate or
defecate after their acute stroke episode. They described
their unfamiliarity with the range of gadgets and how their
unfamiliarity and anxiety about the mechanics of the
exercise fuelled a deeper anxiety about loss of dignity and
self-esteem:
I remember the rst time I went to the loo in the stroke
unit, I was taken in a sort of cage affair. Youre strapped
into a device alongside the bed, at, and youre then put
upright on this device and youre wheeled to the toilet
and youre gradually lowered over the loo by, from this,
this device. . . Its very, very whats the word? Intrusive I
suppose and made me very, very depressed. (S0D)
Staff were perceived to help if they were able to explain
how the gadgets worked and be sensitive and reassuring
about the process.
4.1.3. Eating and drinking
Two main themes emerged from this fundamental of
care: the importance of assessing the mechanics of eating
and drinking (swallowing, chewing, arm movement, type
of diet, changes in diet leading to constipation) and the
quality of the food. Many described how their swallowing
was assessed and how they had to move from liquid to
solid diets. Several talked about the mechanics of eating
not being able to hold utensils or cut up food or open
packets of food.
Another big problem is food when youre newly
paralysed, is eating, because its difcult to eat with
only one arm, and you cant cut food up, and hospital
food tends to come in little plastic wrappers that I
couldnt open with butter to spread on biscuits that I
couldnt spread because you need two hands. (S0E)
A universal problem was the quality of the hospital
food. Those who had required pureed food because they
had initial problems with swallowing found them unappetising:
I think the worst part at that time was probably being
on liquid diet, I had to have all my food pureed which
was revolting. (S0F)
The role of staff in supporting (or not) eating and
drinking was an issue. There were some accounts of people
feeling that they had been left to their own devices and had
struggled to eat because of physical limitations or had
observed others who had not eaten because food was left
out of reach or people were not assisted.
4.1.4. Safety, prevention and medication
Four themes were identied: the taking of medication
to manage stroke related symptoms (stiffness, pain,
sleeplessness), having to get used to taking drugs,
managing side effects, and developing new routines.

Respondents discussed their medications and their awareness and understanding of side effects. They told stories
about having to balance the side effects of drugs with
managing their ongoing symptoms. One person described
a medication education programme which aimed to
encourage growing independence:
. . .and they told you what you were taking and what
they were for and that was really good and then after a
little while you were told that you wouldnt get your
drugs at breakfast unless you asked for them. (S0G)
Having to take so many medications could be challenging and some wanted to be more in control of their
medication:
Im somebody who really rather shied away from
medication before, I wouldnt even take an aspirin for
the u. I had to learn how to swallow pills in, in
numbers. . . (S0C)
Several talked about their fear of falling and the
associated safety aspects.
. . .and you, you felt as if you were going to roll out of
bed, just pure and simply because youve been, again,
its the condence thing I think that kicks in and I really,
really felt dead, dead queer with the sides of the beds
actually down. (S0B)
Many described the links between their stroke recovery,
medication effects, their self-condence and safety issues
and described strategies that helped them cope. Awareness
of the way staff supported them tended to focus on
medication management rather than promotion of safety.
4.1.5. Personal cleansing and dressing
There were many narratives around regaining independence and the importance of presentation of self,
developing dressing routines, and personalised goal
setting. Respondents talked about the transition from
not being able to wash to relearning how to undertake the
task with one hand and a lot of ingenuity:
. . .they brought a, a thing of water to the bed and a
annel and some soap and the rst day I washed myself
in bed and I cleaned my teeth after about 4 days. It was
absolutely wonderful and that was a turning point.
(S0H)
Linked to the regaining independence theme was the
emotional anxiety and embarrassment experienced in
relation to not being able to wash independently. The loss
of personal standards of hygiene, feeling unclean, smelling,
having unkempt hair or not wearing their own clothes had
been a humiliating experience for some people. This had
sometimes not been recognised by staff and had only been
resolved when relatives took matters into their own hands
and helped the person to wash or change clothes. Several
interviewees recalled the emotional trauma they experienced in having to rely on other people:
. . .things like personal hygiene, I mean, is, your, ones
dignity is absolutely stripped. . . (S0E)

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4.1.6. Comfort
Comfort was described in terms of managing pain and
physical comfort. These related to describing pain to others
and having it believed, the impact pain has on relationships, and managing the environment to increase comfort
levels. The other main theme was managing the psychological and emotional aspects of comfort, particularly
around recognising and managing mood swings, the
anxiety and loss and the impact of loss:
I remember one day, day, I said, Im going to try doing a
crossword puzzle and I got, I got the pencil out and had
the answer but I couldnt put the letters in the square
box for the crossword puzzle and that really got me, you
know, I was feeling quite depressed. (S0I)
4.1.7. Rest and sleep, respiration, temperature control and
expressing sexuality
These issues did not feature strongly in the interviews
selected for analysis. However, some respondents talked
about being exhausted and needing a lot of sleep:
I slept for a huge amount of time and I needed to sleep.
It was a total exhaustion that wipes you out, the
tiredness was something that I was absolutely shattered. (S0H)
They described early symptoms of changes in breathing
or having oxygen administered during the acute phase of
their stroke but this seemed to be less of a concern during
the recovery process. There were some comments about
feeling hot and sweaty, burning up inside and having to
change clothing because of profuse sweating, though this
did not emerge as a strong theme.
4.2. Psychosocial aspects of fundamentals of care
Dignity, communication and education, privacy, and
respecting choice were part of the psychosocial elements
of fundamentals of care. The distinction between the
physical and the psychosocial is neither clear nor
straightforward: as has been demonstrated in the section
on physical elements, experiences of the physical can have
profound emotional and psychological effects. This fusion
of the physical with the psychosocial is clearly described in
the following elements, particularly experiences of dignity
or to be more accurate, loss of dignity.
4.2.1. Dignity
Stroke survivors talked about dignity in relation to
having to come to terms with needing help with personal
aspects of care: waiting for help, fear of falling and being
dependent on others for help, needing help to go to the
toilet. Accounts were emotionally charged and given the
time lag between the interviews and the persons actual
experiences it was clear that memories were still very
graphic and strong:
I felt as if I was wetting myself and that was really,
really humiliating. I really felt, I felt the pits, you know,
and it was before my wife came in and she said, Whats
wrong with you? and I didnt explain, you know. I said,
Its just this catheter, you know. But that must have

399

been the lowest, lowest point. I was so, I felt, I felt I was
wetting myself, you know. There was nothing I could
do. I had been to the toilet before I went. I knew I was
going to need, you know, and I felt, so humiliated. I
really felt so low, it was ridiculous. It really, really was.
That was a low point. The lowest point I would think, I
would think possibly the lowest point. (S0B)
This need for help had an impact on self-image.
Multiple accounts of loss were recorded in the interviews:
loss of self-esteem, self-condence, independence, motivation. Respondents talked about having part of themselves stolen, and having the trauma of seeing their real
selves being stripped away and some other person being
put in their place.
Things like personal hygiene, I mean, is, your, ones
dignity is absolutely stripped, it is, it is like being a baby
with an adult mind [eh] in a rather badly run boarding
school actually. (S0E)
Emotional reactions were very strong:
I got very distressed because obviously it had gone on
all over my nighty and on the bed and I cried, I really,
really cried just out of, I felt really degraded because Id
been left to do it on my own and because I couldnt get
up and go to the loo and it was so frightening not to
have the control of your body. (S0H)
It was as if respondents had to struggle by themselves
to protect their dignity and saw the whole hospital process
as a battleeld where they were in danger of losing their
identity and dignity:
I just thought I dont want them helping me because
there was no one on the ward that I had any regard or
respect for. (S0F)
4.2.2. Communication and education
Respondents talked about managing physical symptoms such as slurred speech, changes to the strength,
volume and pitch of their voice, changes to their facial
muscles that affected their ability to speak as well changes
to their vision and focus. Emotional lability was identied
as a challenge to effective communication together with
loss of reading and writing:
Talking was, very difcult for me in those rst few days.
I could talk but it actually sounded as if I was
permanently drunk I suppose. It was very slurred and
I found it difcult to get the words out, you nd it very
difcult to absorb things. (S0C)
These physical constraints of being trapped in hospital
for long periods of time affected the rate by which
respondents were able to make sense of what had
happened to them. The need for good relations with
caring, approachable staff was vital but as illustrated by
this quote this was not always there.
But its just being approachable enough I would say for
health care professionals, that people actually feel that
because sometimes its very difcult to ask for very
personal help if its something youre not used to asking

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A.L. Kitson et al. / International Journal of Nursing Studies 50 (2013) 392403

for, even though its something you obviously need. Its

difcult to actually ask for it. . . .And just sit down and
see people as people, not just as stroke victims or stroke
survivors which are not terms I particularly like, Ive got
to be honest. Because I dont feel like Im a survivor of a
stroke, I feel Im struggling, Im struggling with the
stroke but I dont think I want to be called a struggler
either. Just a person. I think sometimes a person is not
seen. (S0F)
4.2.3. Privacy and respecting choice
Privacy was described in terms of place and space on
the ward being in a safe place and being able to move
around and also in terms of personal privacy maintaining
personal modesty, personal integrity and balancing the
need for privacy with potential isolation. Respecting choice
was interpreted as being in control of ones treatment and
rehabilitation for example making informed decisions
about treatment and care, being given a choice:
Its, you know, and it was the goal-setting was really, we
have a sheet there we, we ll in from week to week if we
want to achieve next week, fortnight, 3 weeks down the
line and you work towards that and it, it kind of takes
your mind off your illness or, or your injury, as far as Im
concerned. (S0B)
However, lack of choice was also experienced: showers
not baths, male carers rather than preferred female carers
and a range of limitations within the system that reduced
the ability to exercise choice.
4.3. Respondents experiences of staff relational dimensions
Stroke survivors narratives recounted traumatic
memories of humiliation and loss on many occasions.
Elimination, personal dressing and cleansing and dignity
seemed to be the most frequently cited areas where
patients felt particularly vulnerable. Few accounts
described how staff actions helped to alleviate the feelings
of loss and anxiety.
Two main staff behaviours seemed to help: one was
around taking a structured approach to recovery and the
other was around providing care in a respectful, personalised and timely way in other words in an empathetic way.
4.3.1. A structured approach to recovery
Many descriptions reinforced the positive impact of
goal setting and identifying small personalised targets
stroke survivors would set themselves in partnership with
staff, particularly with occupational and physiotherapists.
. . .they seemed to do it in such a way that you, you feel
youre making progress, you feel youre making a step
forward, you know. And you feel youre actually, Yeah,
Im getting better. (S0C)
What worked well in the domain of mobilisation and
to some extent in assessing swallowing was less obvious
in other areas, for example, in regaining personal
dressing and cleansing skills and elimination. Respondents were also able to assess the skills of staff on many
occasions:

But when it came to the other nursing care like

medications and checking the drips and everything and
your blood pressure, or if you (sic) wasnt well, if
something straight on the monitor, that was superb.
(S0J)
For every caring, intelligent, supportive member of
hospital staff. . . for every one of those who is good and
supportive at their, at their profession, I would also say
that theres probably an equal number who dont take
the same pride in their job and who dont care very
much about the feeling, sensitivities and ultimate
condition of their patients. . . (S0B)
4.3.2. Respectful, personalised, timely care
Respondents recounted interactions with staff where
they felt involved and respected. These accounts were
identied as often atypical and as such isolated experiences in what was otherwise a harsh, unfriendly environment:
They were great. They give you the respect. Theyll
stand outside the room while you get your underwear
on or off or whatever. (S0H)
Yes, there are good nurses where they will relax and
rst they will nd out whether, are you feeling thirsty,
are you feeling tired, Very simple things. (S0K)
However, many of the comments were more critical of
the way staff interacted with patients:
. . .the jobs which nurses used to do like pressure care,
tidying the bed at night, bringing you a wash bowl, your
mouth wash, if you have dentures you want to clean
them or if not after a meal you want to clean your teeth
and rinse, that was very much lacking I must say and
that did upset me. (S0J)
Table 3 summarises stroke survivors views about how
staff interacted with them. The following quote seems to
summarise their experiences quite accurately:
Health professionals are good as far as assessment or
medication, its effect and their knowledge about how
the body works, they are very good at it. Emotions and
they only read from books and I dont think they are so
much good. They might not have that much experience
to talk to you because they dont have time. (S0K)

5. Discussion
Our results conrm that people who have been
moderately or severely affected by stoke and who have
survived, do talk about the impact their illness has had on
managing the fundamentals of care. They also describe the
experience of trying to manage personal self-care activities
that before their illness they were able to perform
independently. Stroke survivors talk about fundamentals
of care in terms of the physical, psychosocial and relational
dimensions. Every story about going to the toilet (the
physical act) recounts elements related to dignity, privacy,

A.L. Kitson et al. / International Journal of Nursing Studies 50 (2013) 392403

and self esteem (the psychosocial). Such accounts are

mediated by respondents experiences of staff, either
positively in terms of support and respect, or negatively in
terms of feeling embarrassed, humiliated and alone. Other
researchers (Burton, 2000a,b; Bridges et al., 2010; Entwistle et al., 2011; Woolhead et al., 2004) have also found that
the social dynamics of care, the relational aspects and the
individuals ability to be and feel themselves featured
more strongly in patient accounts.
The majority of accounts described respondents
experiences of loss, anxiety, humiliation, and fear at what
was happening to them with few positive or balancing
accounts of mediating effects of staff. Whilst we could
argue that one would expect more traumatic stories from
more moderate and severely impaired stroke survivors,
does this justify the fact that there were very few accounts
of positive staff interventions to alleviate the distressing
experiences? Is this the same as acknowledging that older
people in hospital should expect to be treated with less
dignity because they are older and frailer and health
systems are not geared to cope with their needs? Our
original six research questions demonstrated that people
who have survived the acute stage of their stroke (the
illness) do talk about and have vivid memories of their
basic care (the physical, psychosocial and relational
needs). Stroke survivors do use the same language as
nurses and other healthcare groups (talking about
mobility, sleep and rest etc.). The ways of talking about
their experiences of the fundamentals of care however
display two important dimensions; rst is the integrative
nature of their accounts and second is the almost universal
description of loss of self (Charmaz, 1983) and the
disruption of their life story in order to focus on the
ordinary taken for granted self care tasks of life (Bury,
1982; Faircloth et al., 2004).
The primary purpose of our secondary analysis was to
explore how a group of stroke survivors described their
experiences of managing their fundamentals of care. We
used an organising Template derived from the nursing
literature (Kitson et al., 2010) in order to map out which
fundamentals were most often described and how they
were experienced and met. Stroke survivors experiences
were selected as a cohort where we believed we would be
more likely to uncover extreme experiences because of the
level of disability and functional loss. The assumption
guiding our work was that if we found evidence of the
importance of the fundamentals of care for patients in this
group we would then need to explore peoples experiences
of the fundamentals as they linked to other illness
conditions.
The ndings from our purposeful sample of stroke
survivors do lead to a number of theoretical and
conceptual challenges in the area of patient-centred care
research and policy development. Notwithstanding the
specicity of the sample we would make the following
cautious claims: we would argue that the current linear or
hierarchical way that fundamentals of care or activities of
daily living are described (as summarised in Kitson et al. a
narrative review 2010) is not the way patients experience
or report fundamentals of care. A list may be a useful
heuristic for practitioners but it does not reect the

401

interdependency of the physical, psychosocial and relational aspects of care. From our study, we would suggest
that people who have been patients and who have
experienced quite traumatic illness conceptualise fundamentals of care in a three dimensional way physical,
psychosocial and relational. Each of these elements has to
be in place and activated before a positive experience can
ensue (Table 3).
For each physical fundamental of care there is therefore
an accompanying set of decisions and actions around a
series of psychosocial and relational dimensions. And
given that there are numerous physical fundamentals of
care as well as multiple psychosocial elements not to
mention the number of staff interactions and points of
contact in a patients day; it is not surprising that this is a
challenging issue. To focus on dignity without addressing
elimination, personal dressing and cleansing and eating
and drinking for example, would convey an interaction
between the nurse and the patient that would be meaningless and indeed potentially harmful. Equally, by not
acknowledging how patients physical needs can be met in
a respectful way by staff members means that patients
continue to be at risk of experiencing dehumanising and
disrespectful care, not because staff are vindictive and
uncaring but more perhaps that they have not been
encouraged to think in an integrated and practical way
about fundamentals of care. Such seamless or integrated
care is identied as the gold standard (Bridges et al., 2012).
The other issue this raises is whether patients can
experience dignied and respectful care if one or more of
the fundamentals of care are sub-optimally met. For
example, from the results, it would appear that managing
mobility and assessing eating and drinking were the two
most consistent fundamentals of care to be experienced
positively. This infers that for the majority of respondents
the other fundamentals of care could have been suboptimally managed. How would we go about ensuring
that all fundamentals of care were at an acceptable level
and is this what having a dignied patient experience
means? Given the challenge, how do we ensure that all
physical fundamentals of care have sets of realistic actions
and goals that include psychosocial and relational
elements?
These questions have led us to discuss concepts such as
empathy and kindness. There still tends to be a view that
all that is required to provide dignied care is to recruit
more empathetic and kindly staff. Is empathy a mechanism
that optimises the operationalisation of both physical and
psychosocial fundamentals of care in a way that maintains
the integrity of the patient being cared for? Is this a
modern way of describing nursing or as Henderson said
Nursing provides the basis for physical comfort which
underlies the importance of the patients subjective
experience (1966, p. 15). Such empathy transgresses
boundaries the personal boundaries around self-care,
sense of self, needing support and being able to trust the
other person providing that care. How does the patient
manage the feelings of personal disgust and humiliation in
having to depend on another person to undertake a selfcare activity and equally how does a staff member manage
the disgust and humiliation they too might experience on

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A.L. Kitson et al. / International Journal of Nursing Studies 50 (2013) 392403

their own behalf and on the patients behalf in having to

provide intimate care for another person?
These deeper philosophical questions show that we are
not dealing with straightforward issues: matters of
identify, existence, being, worth and future are thrown
into the existential mix of trying to hold onto a sense of self
that has suddenly been compromised by illness and the
inability to manage fundamentals of care. Sociologists have
variously described this experience as biographical disruption (Bury, 1982) loss of self (Charmaz, 1983) or
narrative reconstruction (Williams, 1984). However, what
is still not clear from these accounts and what our study
has elucidated, is the extent to which the loss (whether it
be biographical disruption, loss of self or reconstructing
ones own narrative) is due to the actual illness or the
consequence of the illness on the fundamentals of care? If
we paid more attention to maintaining the integrity of self
during the predictable assault of the disease on fundamentals of care, would patients survive more intact? What
are the psychological scars that remain when dignity has
been repeatedly stripped away each time a person needs
to ask for help to go to the toilet and has a humiliating
experience?
The research is not without its limitations. This is a
secondary analysis of qualitative data, collected for a
different purpose. We are not sure if patients had been
asked directly about fundamentals of care whether the
information would have been the same or different. Would
we have received more positive examples of care or could
we argue that by not sensitising respondents to this area
we are probably getting a more accurate account of their
experiences? Also, the majority of the data were collected
in the mid-2000s. One could argue that given the
healthcare reforms in the UK and in particular, those
focusing on the patient experience things would have
improved. However, given the results of the Care Quality
Commission (2011) report, this is unlikely and the addition
of three updated interviews from 2011 showed no real
differences in survivors accounts.
The subset of interviews selected to mine for patient
perspectives on fundamentals of care was deliberately
targeted at those who had more severe impairment and
more experience of prolonged hospital care (as identied
by the original interviewers). Whilst this was a useful
strategy for obtaining rich relevant data, it means our
sample cannot fully represent the experiences of all stroke
patients nor of all patients.
Equally, given the relatively small number of interviews, we cannot state categorically that issues mentioned
less frequently are less important. Their relative infrequency in the data may partly reect the nature of the
condition; one may suppose that in episodes of hospital
care for heart failure, for example, respiration would
feature more prominently. Feeling cold may not threaten
ones sense of self in the same way as having to be washed
or fed, or being unable to walk. Sexuality is something
many people nd exceptionally hard to discuss openly;
people may have found it hard to voice their emotions.
Despite these limitations, we do believe that raising these
issues as questions to be explored more systematically has
merit and, given the demographics and illness prole of

patients in general, they are important questions to

answer.
6. Conclusions
This study has implications for the discourse around
patient-centred care and linked policy initiatives. We are
arguing that the emerging framework needs to be
considered as a multidimensional construct with three
core dimensions linking the physical, the psychosocial and
the relational at each and every point of the persons inhospital experience. We are suggesting that if these three
dimensions are not consistently and continuously
addressed, then people will not experience patient-centred
or dignied care. We do not have the answer to how this
can come about but our work has shown us that stroke
survivors experience an unnecessary and humiliating lack
of integrated care around their fundamental needs. This we
believe is more due to a lack of rigorous and conceptual
thinking on the matter that anything to do with staff
neither being willing nor able to work in a more integrated
way.
The next stage of this work will be to explore how the
fundamentals of care are experienced by other groups
(cancer and other chronic illnesses) and to explore how
nurses can integrate the three dimensions (physical,
psychosocial and relational) into their daily interactions
with patients.
Conict of interest: None declared.
Funding: The original interview data collection was funded by
a Big Lottery grant to the Managed Clinical Network on the
Web (Scotland) and the Alliance for Self Care Research (University of Stirling). The secondary analysis was partly funded
by a small project grant from Green Templeton College,
University of Oxford.
Ethical approval: The original research was approved by a
Multi-centre Research Ethics Committee, which included the
use of the data for secondary analysis.
Acknowledgements
We would like to acknowledge colleagues from the
Health Experience Research Group who enabled us to use
the original transcripts and also to colleagues in Oxford
who gave us valuable feedback on earlier iterations of the
work. In particular, Dan Lasserson, Matt Gillis, Elaine
Strachan-Hall, Georgina Craig and Wendy Greenberg. In
particular we would also like to acknowledge colleagues
from the Oxford International Learning Collaboration who
have been involved in the development and shaping of
these ideas.
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