qualitative study of people

The challenges of achieving person-centred care in acute
hospitals: A qualitative study of people with dementia and
their families
§
Philip Clissett a,*, Davina Porock b, Rowan H. Harwood c, John R.F. Gladman d
a School of Nursing, Midwifery and Physiotherapy, University of Nottingham, Nottingham NG7 2UH, UK
b School of Nursing, State University of New York, Buffalo, NY 14214, USA
c Health Care for Older People, Nottingham University Hospitals NHS Trust, Queens Medical Centre, Nottingham NG7 2UH, UK
d Division of Rehabilitation and Ageing, University of Nottingham, Nottingham NG7 2UH, UK
International Journal of Nursing Studies 50 (2013) 1495–1503
A R T I C L E I N F O
Article history:
Received 12 July 2012
Received in revised form 4 March 2013
Accepted 5 March 2013
Keywords:
Delirium
Dementia
Frail elderly
Hospitals
General
Nursing
Person-centred care
Qualitative research
A B S T R A C T
Background: Person-centred care has been identified as the ideal approach to caring for
people with dementia. Developed in relation to long stay settings, there are challenges to
its implementation in acute settings. However, international policy indicates that acute
care for people with dementia should be informed by the principles of person-centred care
and interventions should be designed to sustain their personhood.
Objectives: Using Kitwood’s five dimensions of personhood as an a priori framework, the
aim of this paper was to explore the way in which current approaches to care in acute
settings had the potential to enhance personhood in older adults with dementia.
Design: Data collected to explore the current experiences of people with dementia, family
carers and co-patients (patients sharing the ward with people with mental health
problems) during hospitalisation for acute illness were analysed using a dementia
framework that described core elements of person centred care for people with dementia.
Settings: Recruitment was from two major hospitals within the East Midlands region of the
UK, focusing on patients who were admitted to general medical, health care for older
people, and orthopaedic wards.
Participants: Participants were people aged over 70 on the identified acute wards,
identified through a screeing process as having possible mental health problems. 34
patients and their relatives were recruited: this analysis focused on the 29 patients with
cognitive impairment.
Method: The study involved 72 h of ward-based non-participant observations of care
complemented by 30 formal interviews after discharge concerning the experiences of the 29
patients with cognitive impairment. Analysis used the five domains of Kitwood’s model of
personhoodasan
a prioriframework:identity,inclusion,attachment, comfortand occupation.
Results: While there were examples of good practice, health care professionals in acute
settings were not grasping all opportunities to sustain personhood for people with dementia.
Conclusions: There is a need for the concept of person-centred care to be valued at the level
of both the individual and the organisation/team for people with dementia to have
appropriate care in acute settings.
2013 Elsevier Ltd.
§ This project was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 08/1809/227).
The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the
Department of Health.
* Corresponding author.
E-mail address: [email protected] (P. Clissett).
Contents lists available at SciVerse ScienceDirect
International Journal of Nursing Studies
journal homepage: www.elsevier.com/ijns
0020-7489 2013 Elsevier Ltd.
http://dx.doi.org/10.1016/j.ijnurstu.2013.03.001
Open access under CC BY-NC-ND license.
Open access under CC BY-NC-ND license.
What is already known about the topic?
Person-centred care is widely recognised as the ideal
approach for caring for people with dementia.
There is a high prevalence of co-morbid mental health
problems among older adults admitted to acute hospitals.
Acute hospital settings struggle to provide care that
values personhood and is person-centred.
What the paper adds
This paper offers insight into the extent to which current
practice regarding care for the person-with-dementia in
acute settings is person-centred.
This paper suggests ways in which care could be more
person-centred for people with dementia in acute
hospitals.
This paper highlights the ways in which the philosophy
behind person-centred care could transform individual
actions to recognise a sense of personhood in the acute
hospital setting.
1. Background
The work initiated by Kitwood and Bredin (1991) and
developed by others such as
Brooker (2003) about personcentred care has had a significant impact on the way many
care settings approach their work with people with
dementia.
Kitwood (1997) in particular challenged the
prevailing attitude to working with people with dementia,
proposing that the experiences and actions of the personwith-dementia are affected by more than just the disease
process. Instead, the dementia experience is the combination of: the stage of neurological impairment; their
personal health and fitness level; their personal biography/life history; their personality and coping style; and the
social psychology of the environment in which they live.
Where there is a negative interplay between neurological
and sociopsychological factors, these combine to deny the
person-with-dementia a sense of personhood. This occurs
as a result of care practices such as infantilisation,
intimidation, stigmatisation and objectification which
create the ‘malignant social psychology’ where the
individual is depersonalised, invalidated and treated as
an object.
The goal of person-centred approaches to care is to
respect personhood despite cognitive impairment (
Skaalvik et al., 2010). Where the personhood of the individual is
recognised and valued, the person-with-dementia is
awarded standing and status as a respected and valued
social being (
Kitwood, 1997). A key feature of settings
where people-with-dementia have their personhood
recognised is that they experience a sense of attachment,
inclusion, identity, occupation and comfort (
Brooker, 2007,
p. 95, see
Box 1). This approach to the care of the personwith-dementia takes time to develop and is usually most
easily achieved through consistent longer term relationships with caregivers.
In the UK, the
National Institute for Health and
Clinical Excellence (2006)
embraced the principles of
person-centred care and instructed acute NHS Trusts to
provide services that ‘address the personal and social
care needs and the mental and physical health of peoplewith-dementia who use acute hospital facilities for any
reason’ (
NICE, 2006, p. 11). This was reinforced in the
National Dementia Strategy (2009). A similar focus on
person-centred care is demonstrated by its prominence
in networks to promote excellence in dementia care in
other countries, for example the Canadian Dementia
Knowledge Transfer Network (
Canadian Dementia Resource and Knowledge Exchange, 2013; Dalhousie
University, 2012
). However, although much work has
considered person-centred care in long term settings,
relatively little has focused on acute hospitals. This is
important because there are factors in acute hospitals
that might be expected to be make the delivery of personcentred care problematic because the priorities are rapid
diagnosis and therapeutic intervention with short
lengths of stay. As part of a wider study (
Gladman et
al., 2012a,b
), this paper reports data focusing on the
person-with-dementia using the five domains of Kitwood’s model of personhood as an
a priori framework for
analysis with the aim of exploring the way in which
current approaches to care in acute settings have
potential to enhance personhood in older adults with
dementia.
2. Methodology
The main study aimed to provide an in-depth qualitative view of the current experiences of patients, family
carers and co-patients (patients sharing the ward with
people with mental health problems) during hospitalisation for acute illness.
Box 1. Conceptual definitions of the domains of
personhood
Concept
Attachment
Attachment relates to bonding, connection, nurture, trust and
security in relationships.
Inclusion
Inclusion is about being in or being brought into the social
world
either physically or verbally and making them feel part of the
group.
Identity
Identity relates to the need to know who you are and having
a sense of continuity with the past. It is about having a life story
that is held and maintained either by the person-withdementia
or for them by others.
Occupation
Occupation relates to being involved in activity that is
personally meaningful; a sense of agency and having control to
make things happen.
Comfort
Comfort is about the provision of tenderness, closeness and
soothing and is provided through physical touch, comforting
words and gestures. Comfort also includes physical comfort
with one’s body and a pleasant environment.
Adapted from
Brooker (2007), pp. 82–100.
1496
P. Clissett et al. / International Journal of Nursing Studies 50 (2013) 1495–1503
Recruitment was from two major hospitals which were
part of one NHS Trust within the East Midlands region of
the UK. Participants were patients admitted to general
medical, health care for older people and orthopaedic
wards, aged over 70, who had been screened as having a
possible mental health problems (using brief tests of
cognition, depression, alcohol misuse and a question
asking if there was any other reason to believe a mental
health diagnosis might be present), and had been recruited
to the Medical Crises in Older People ‘‘Better Mental
Health’’ (MCOP-BMH) cohort study (
Goldberg et al., 2012).
Patients were admitted with a variety of acute medical and
functional problems, or fractures. Recruitment covered a
total of 12 months. Of the 250 recruited to the MCOP-BMH
study, 34 were recruited into an in-depth qualitative
study: this analysis concerns the 29/34 people in the indepth qualitative study with dementia or delirium.
The mean age of the 29 participants was 88 (range 70–
99); 15 (52%) were female; 18 (62%) were widowed, 8
(27%) were married, 1 had never married, and 2 (7%) were
divorced. Fifteen had previously lived alone, of whom 5
returned, 8 were discharged to a care home, and 2 died (a
carer was interviewed). Nine had previously lived with
family, of whom 3 returned, 4 went to a care home, and 2
died. Five had previously lived in a care home, three died in
hospital, the rest returned. Four patients died between
discharge and the time of the interview with their carer.
The relationship to the patient of 28 of the carers was:
wife 8, daughter 6, son 7, niece 2, female friend 1, sister 2,
son-in-law 1, and grand-daughter 1 (in one case the
relationship was not recorded). The mean age of carers was
60 (range 46–79), and 19/29 were female.
Data collection involved observation and interview.
72 h of non-participant observations of care were conducted on 45 occasions on 11 wards of the study hospitals
including orthopaedic, healthcare of older people and
general medicine wards. Most observation periods lasted
between 1 and 2 h, the shortest being 45 min and the
longest 180 min. The observations were unstructured and
conducted by two researchers. The aim of each observation
was to produce a narrative account of the experiences of an
identified individual with dementia. Field notes were
maintained during the observation and were typed in
detail as soon as the observation was concluded.
The interviews were conducted by two researchers in
patients’ homes with family caregivers and with the
patient present wherever possible. Data collection occurred between June 2009 and December 2010. The full
methods have been reported elsewhere (
Gladman et al.,
2012a,b
).
Approval from a research ethics committee and
hospital research governance department was obtained.
To ensure the confidentiality of the information, all
participants were allocated a pseudonym, code number
and the wards and places similarly allocated pseudonyms.
Transcription of recorded interviews was undertaken by
experienced independent transcribers who signed written confidentiality agreements. The findings of the main
study are outlined in
Box 2.
While conducting the preliminary analysis, we noticed
that we encountered much data that reflected aspects of
care that was, to a greater or lesser extent, person-centred.
As a result, we decided to revisit the data with the goal of
exploring the extent to which interventions by health care
professionals had the capacity to sustain personhood,
using the core elements of persona-centred care as defined
by
Brooker (2007) – attachment, inclusion, identity,
occupation and comfort – as a framework.
Data were managed using N-Vivo 8 software (
QSR
International, 2008
). Two researchers (PC, DP) coded the
data and evaluated the extent to which interventions
had the potential to give patients feelings of attachment,
inclusion, identity, occupation or comfort (
Brooker,
2007
). Individual accounts of patient experiences and
care interventions were reviewed by the researchers and
relevant episodes were coded according to these five
categories. The researchers worked together to do this
analysis. Where an experience or intervention appeared
to address more than one psychological need, it was
coded in all relevant categories. Once this stage was
completed, data were divided into three categories: good
care, poor care and opportunities missed. For the
purposes of this paper, poor care will not be discussed
as other organisations such as the
Alzheimer’s Society
(2009)
have explored this in detail. Instead, the focus
will be on interactions with the potential to promote a
sense of personhood both where opportunities were
taken and missed.
3. Findings
There was much to suggest that healthcare professionals promoted feelings of attachment and inclusion. On
the other hand, there was little evidence that the
professionals supported a sense of identity, occupation
and comfort: indeed, there was more evidence of poor
practice in these areas. Examples of good practice and the
missed opportunities are worthy of further exploration as
these will help in the understanding of how acute areas
might become more person-centred. The findings are
presented using the person-centred care framework where
the good practice then the missed opportunities for each
heading are described.
Box 2. The findings of the main study
The observation and interview study elaborated a ‘‘core
problem’’ and a ‘‘core process’’. The core problem was that
admission to hospital of a confused older person was a
disruption from normal routine for patients, their carers, staff
and co-patients. The core process described was that patient,
carer, staff and co-patient behaviours were often attempts to
gain or give control to deal with the disruption (the core
problem). Attempts to gain or give control could lead to good or
poor outcomes for patients and their carers. Poor patient and
carer outcomes were associated with staff not recognising the
cognitive impairment which precipitated or complicated the
admission and to diagnose its cause, and staff not recognising
the importance of the relationship between the patient and
their family carer. Better patient and carer outcomes were
associated with a person-centred approach and early attention
to good communication with carers.
P. Clissett et al. / International Journal of Nursing Studies 50 (2013) 1495–1503 1497
4. Attachment
Feelings of attachment between the person-withdementia and members of nursing staff appeared to be
achieved when there was consistency of staff over a period
of time meaning that relationships were able to develop.
Brenda argued that this had a positive impact on her
mother, Helen:
‘I think it may have been because they were there, they
did longer shifts and
. . . my mother was under their wing
so they developed a relationship to her which, to her, is
very important. Whereas the other staff that I saw
. . .
they hadn’t got such a close relationship with her.’
In addition to the time spent together, expressions of
warmth from the nurse to the person-with-dementia
seemed to enhance this process. When asked if there were
any members of staff that made a real difference to her
mother, Alma identified two nurses in particular:
‘They were really friendly to her all the time. They didn’t
just walk past her; they’d always speak to her. He’d
have a laugh with her you know ‘Come on Betty, let’s get
(you sorted)’
. . . if he took her to the toilet . . . he said he
was going to miss her when she was gone, and she said
‘‘I’m going to miss you too.’’
Another way of promoting a sense of attachment on the
part of the person-with-dementia was by facilitating the
relationships that appeared important to the individual.
When Mary used to visit her mother Gillian, members of
staff would help her mother out of bed so that she could sit
with Mary:
‘I said ‘Well I’m here now, can we get (her) out now?’
and they nearly always tried to
. . . they were
particularly nice.’
4.1. Missed opportunities
There were occasions when opportunities presented
themselves for healthcare professionals to make some
connection with the person-with-dementia but they seemed
unable or unwilling to do so, often by choosing to end the
interaction as quickly as possible. In this observation Charlotte
was struggling to understand what the doctor wanted from
her, but she appeared to want to interact with him:
‘The doctor returns
. . . he asks Charlotte ‘Are you hot?’
‘Not today, I’m freezing in here’ she replies. ‘Has the
nurse done your temperature?’ he asks. Charlotte
ponders this but looks bemused and is clearly trying
to please the doctor but unsure how to answer. She
responds only with a smile
. . . the doctor doesn’t
respond except to walk away from the patient with his
hands in the air, clearly frustrated.’
In a similar observation David seemed particularly
unsettled in the run up to lunchtime and, as nurses were
concerned about his stability, every time he stood up
somebody had to deal with him:
‘David
. . . tried to stand up and walk. The five members
of staff who were near to him did not appear to notice.
Another nurse was walking past and tried to persuade
him into his chair but he did not want to sit in it. Instead
the nurse guided him to the dining room. He seemed
happy to go there until he arrived and then resisted
going in to sit down. They returned to his chair
. . . The
nurse eventually succeeded in getting him to sit down
and walked away extremely quickly.’
In both situations, the healthcare professional might
have spent a little longer with the person to end the
interaction less suddenly and to determine what the
problem was from the patients’ perspectives.
In summary, the key issues that enhanced or diminished the sense of attachment for the person-withdementia were those of continuity of staff, the communication skills of the individual members of staff and the
way in which they recognised the relationships that
matter to the person-with-dementia. The importance of
staff continuity is well documented (
Roe et al., 2001;
McGarry and Arthur, 2001
) where continuity enables
both carer and the person-with-dementia to become
comfortable working together allowing the carer to get to
know the person-with-dementia at a deeper level and
use this knowledge to inform their work beneficially
(
Edvardsson et al., 2010). This establishes more trusting
relationships (
Edvardsson and Nay, 2009) which builds
supportive social psychology and affirms personhood
(
Downs et al., 2006). Effective communication skills need
to extend to all members of staff who deal with the
person-with-dementia as positive social interaction is
the cornerstone of effective person-centred care (
Kontos
and Naglie, 2007
) and essential for maintaining a sense of
self (
Naue and Kroll, 2008). This means that the balance
between the emphasis on the need to complete tasks and
the need to sustain positive relationships needs to be
reviewed. For people-with-dementia it may be more
important that the experience of a task is positive than
that it is completed efficiently (
Edvardsson et al., 2008).
Charlotte’s encounter with the doctor appears to
highlight the challenge of implementing person-centred
care. The communication by the doctor seemed to
indicate that he did not value the personhood of
Charlotte and reflected elements of the malignant social
psychology by invalidating her attempt to interact and
indicating non-verbally that she was not worth acknowledgement and was, in fact, useless (
Kitwood, 1997). This
highlights the idea that person-centred care cannot be
implemented with a one-off ‘quick fix’ (
Manley and
McCormack, 2008
) but requires a change in the values of
both the acute healthcare system and individual practitioners (
Kontos and Naglie, 2007).
Where members of staff have recognised the relationships that matter to the person-with-dementia, this has
promoted person-centre care. This is because people who
have the most meaningful relationships with the personwith-dementia are best placed to provide the quality
psychosocial contact and personal affirmation that is
essential for the maintenance of personhood (
Kontos,
2005
). In addition, they possess the unique knowledge of
the person-with-dementia to inform personalised plans of
care (
Stenwall et al., 2007).
1498 P. Clissett et al. / International Journal of Nursing Studies 50 (2013) 1495–1503
Overall, a sense of attachment might be promoted in
acute clinical areas by promoting continuity of staff
working with individuals with dementia, all staff using
appropriate communication with people-with-dementia
and by recognising the relationships that are significant to
the person-with-dementia.
5. Inclusion
A number of strategies deployed by healthcare workers
appeared to have the net result of giving a sense of
inclusion to the person-with-dementia: taking opportunities for engagement with the person-with-dementia;
demonstrating that the welfare of the person was
important; and ensuring that they were involved in
making the key decisions about their future.
Some opportunities were seized on an opportunistic
basis, when members of staff had a moment to talk. One
such occasion occurred during an observation with Edith:
‘Two domestics approached the bed and said hello to
Edith. She replied ‘What have you got for me’, ‘Nothing’,
‘Buzz off then’. The domestics stopped with Edith and
had a chat with her. She showed them a leaflet about a
care home that she would be moving into. One
domestic commented that the home was near to her
house. Edith invited herself for tea.’
Another way of including the person-with-dementia
was by demonstrating that their well-being was important. Albert’s family noted that members of nursing staff
were particularly proactive when it came to food:
‘Well I think if he wasn’t eating, which he doesn’t
. . .
they would try their best to sort of tempt him and what
have you. If he ate ice cream and wouldn’t eat bread,
they’d give him three ice creams
. . . they tried their best
to get him to eat something.’
A key element in making people-with-dementia feel
included was involvement in key decisions. April and her
family were facing a major decision about her future care.
Her son reported:
‘We went into a small room. There was my brother,
myself – my mother was with us because they said she
was the person that was concerned she had to be there
. . . he said even though she may not understand what
we’re talking about, all of it, she has the right to be there
because it concerns her. And we talked about it, there
was a nurse, the doctor, my brother, myself and my
mother, and that was the first time that had happened.’
5.1. Missed opportunities
There were occasions when opportunities presented
themselves to make the person-with-dementia feel part of
things and included, but members of staff chose not to do
this. Tina stated that her father Eric tended to wake up in
the middle of the night and, on one occasion, reported that
he had found the nursing staff having a drink – an
opportunity to invite him to join them for a while.
However, they chose not to:
‘He did say that he’d walked down to a little room at
night time, because he does wander around about 4am,
and all the nurses were in there
. . . having a cup of tea
and that. I said ‘Oh, did you get a cup of tea then Dad?’
‘No, they brought me back and put me back in bed.’
From a slightly different perspective, some peoplewith-dementia appeared not to experience inclusion due
to the location of their bed. Jill felt that her mother was
being excluded from the community of the ward by being
placed in a side room:
‘Now the ward was beautiful
. . . can’t fault that. When I
went in, everyone knew what was happening, but she
was in a room tucked in a corner at the end and
forgotten.’
The decision to place someone with dementia in a
single room rather than on a main ward is more complex. It
is possible that this might be interpreted as banishment,
especially if it is accompanied by periods of prolonged
inactivity (
Edvardsson et al., 2010). However, ward
environments can offer stimulation that is beyond the
capacity of some people-with-dementia to deal with, so
the relative calm of a side ward might be more appropriate
(
Edvardsson and Nay, 2009).
However, it is not just side rooms that might exclude
people-with-dementia – any location where there was a
suggestion that things were happening around the
individual might have this effect. During an observation,
Mr Elliott was located in the corner of a bay:
‘There was quite a lot of (appropriate) noise coming
from the nurses’ station. However, Mr Elliott could not
see this so he would have heard a lot more action than
he saw. Mr Elliott had nothing to do.’
Mr Elliott would have been given the impression that
there was a lot going on around him but he did not have the
opportunity either to watch or be part of this activity.
To summarise, the key interventions that appear to
promote a sense of inclusion for the person-with-dementia
included providing an environment that enabled the
individual to feel part of things and to ensure that they
were involved as much as is possible in all decisions. Data
have been presented that highlights how some people
were made to feel part of things and how others might
have experienced feelings of exclusion. A key principle
underpinning person-centred care is that the person is a
valued human being with moral worth (
Downs et al.,
2006
). Inclusion and offering a sense of belonging are
indicators that people-with-dementia are being treated in
a manner consistent with these principles (
Brooker and
Surr, 2006
). Evidence suggests that quality-of-life for
people-with-dementia arises out of feelings of inclusion
(
Adams, 2010) which requires acute hospital staff to take
and create opportunities for this to happen.
6. Identity
A key indicator of the way in which hospital care
preserved the sense of identity of the person-withdementia was the nature of the relationship between
P. Clissett et al. / International Journal of Nursing Studies 50 (2013) 1495–1503 1499
the member of staff and the individual. This included using
the preferred name to address the individual but also
encompassed the nature of the relationship between the
person and the nurse.
There were situations when the ‘official’ name of the
patient was not their preferred form of address. Freda
explained about her stay in hospital:
‘There were some young lads there
. . . and they couldn’t
do enough for you
. . . (They said) ‘What’s your name?’ I
said ‘Winifred, but nobody calls me that.’ ‘What do they
call you?’ I said ‘Freda usually.’ Up they went, put Freda
on the top of the board above the bed.’
However, the main evidence of the work of healthcare
staff to preserve the sense of identity stemmed from the
warmth of relationship between the nurse and the
individual, making them feel that they were being treated
as a human being. Trevor’s wife commented:
‘There was one male (nurse) there and he was very good
with Trev. He didn’t talk to you as though you had
dementia and that, or if he had he still spoke to him as a
human being then, he didn’t patronise him.’
Similarly, Mike explained:
‘They were friendly, they were human. You know you
weren’t treated as a number and left to get on with it
sort of thing, they did their damndest with the time
they had available.’
6.1. Missed opportunities
There appeared to be a number of relatively small
actions that healthcare workers might have taken to
enhance the sense of identity of the individual. These
included forms of address and the failure to use personal
belongings. Linda reported that her husband Roger did not
recognise his official first name, meaning that it was futile
using this when communicating with him:
‘I kept saying to them that, although he’s down as Lewis
Brown, he’s always from a little boy been call Roger, so I
always said his name is Roger
. . . they always spoke to
him as Lewis and I said well you’ll not get a connection.’
There were occasions where the bed area of the personwith-dementia seemed to be rather clinical and lacking in
personal effects. During an observation, Clarence was
staying in a side room:
‘In side room three sat Clarence hunched over his table.
His knuckles were in his mouth and he seemed to be
intently chomping on them whilst staring out the
window. There were no cards or personal effects in his
room: it was Spartan and smelt of bleach’
This seems to be a description of an environment totally
lacking in anything that might offer Clarence any personal
comforts or a sense of identity.
It is widely recognised that hospitals serve to threaten
personal identity (
Davis et al., 2008; Naue and Kroll, 2008),
especially in the face of cognitive impairment (
Miller,
1999
). We highlight two ways to counter this: the way in
which members of staff relate to people-with-dementia
and the use of personal belongings and objects that are
meaningful to the individual.
Naue and Kroll (2008)
discussed how the tendency to view people-with-dementia as some kind of ‘other’ affects the sense of identity of the
individual leading them to feel in some way apart from the
human race. Treating the individual as a human being
gives people a greater sense of who they are (
Martin and
Younger, 2001
).
There was little evidence within this study of any
attempt to offer a personalised environment. The role of the
environment in promoting person-centred care has been
emphasised (
Downs et al., 2006) and the presence of
personal belongings such as photographs have been shown
to assist the person-with-dementia in a number of ways:
supporting the sense of identity and continuation of self;
offering a meaningful conversation starter for members of
staff and visitors who speak to the individual; serving to
remind staff of the uniqueness of each person receiving care;
and enabling recognition and feelings of being at home for
the person-with-dementia (
Edvardsson and Nay, 2009).
7. Occupation
The interviews did not contain any evidence relating to
the promotion of occupation for people-with-dementia
while they were in hospital. The observations contained a
small amount of evidence, some of which appeared to be
planned or at least proactive and some which was
opportunistic.
During one observation, a nurse decided to spend a bit
of time with David:
‘David was sitting in his chair. A nurse had come to sit
with him and have a chat. She had a friendly manner.
After about five minutes that nurse was called away ‘I’m
going to see you later David.’ She spent a little while
longer with him
. . . The nurse went to his locker and
took out a small carrier bag of belongings, including
photographs and cards and went through them with
David discussing them with him. She then tried to leave
him, suggesting that he did some colouring and ‘I’ll be
back to see how you’ve done in a few minutes.’’
By contrast, there were other occasions where occupation was only used when the person-with-dementia
appeared to be getting restless. During one observation,
Flo was finding it difficult to settle and eventually left the
ward, being followed by May, a nurse:
‘She came back a good five minutes later, Flo proudly
walking next to her, arms full of folded sheets. ‘I’m
helping out with the beds,’ announced Flo. May
confirmed this and the pair of them walked side by
side into the top ladies’ bay. Flo helped by sitting in a
chair and was told to let May know when the bed
making was not right.’
7.1. Missed opportunities
There were other situations when the lack of opportunities for people-with-dementia to engage in activity
1500 P. Clissett et al. / International Journal of Nursing Studies 50 (2013) 1495–1503
seemed overwhelming. When discussing her father’s stay
in hospital, Amy commented:
‘One thing we did feel that was lacking, there was no
music on the ward
. . . It was deathly silence, there was
nothing
. . . there was no televisions in the ward . . . and
there was no noise whatsoever, so everybody was just
bored. They were literally bored out of their brains.’
It appeared that the lack of activity might have resulted
in restlessness on the part of some people. During one
observation, Dean had been sitting at his bedside with
nothing to do:
‘Dean wandered into the next bay and started to tug at
the equipment which was on the wall at the end of the
bay. He walked very close to one patient and the patient
called out ‘Get out, go away!’ A student nurse took him
back to his own bed area but he did not sit down.’
Overall, there appeared to be little evidence of attempts
by healthcare staff to engage people-with-dementia in
activity, despite evidence that the provision of activities
have a positive effect on behaviour and social interaction
(
Edvardsson et al., 2008). This is reminiscent of work by
Nolan et al. (1995) who found that patients on a long stay
ward remained passive for 87% of the time. Similarly, there
was no evidence within this study to contradict the view of
McCarthy (2006) who found that nurse interaction with
patients tended to serve two purposes: to allow access to
patients through establishing superficial rapport, and to
engage in task-related communication. The consequence
of this is that people with cognitive impairment are
vulnerable to becoming confused very rapidly (
ArmstrongEsther et al., 1994). However, it has been identified that
where healthcare staff ensure that people who are
confused have something to do and feel occupied, fewer
demands tend to be made on them (
Dahlke and Phinney,
2008
). Where activity is meaningful to the individual, it
offers the possibility of meeting psychological needs and
improving well-being (
Harmer and Orrell, 2008).
8. Comfort
While the evidence of the promotion of comfort was
limited within this study, the examples that were
uncovered related both to physical and psychological
comfort. From a physical perspective, Brenda found it
comforting that the team were concerned about the pain
her mother was experiencing. She had stated that the ward
had made her mother feel safe and when asked to explain
this responded:
‘I think it was just the fact that they cared really,
particularly the consultant who seemed
. . . very caring
and sympathetic towards her frailty and the pain she
was in. I think, just the fact that it was acknowledged.’
During an observation, Doris became unsettled and
started to remove her clothing and asked the cleaner to
help her sit up. The cleaner fetched a nurse:
‘The nurse was very compassionate and covered her up
with a towel. ‘Oh Doris, we can’t keep you happy today
at all can we? Tell me what’s up?’ ‘I want my neck
unfastened’ stated Doris. ‘OK, how about wearing your
little cardigan instead of a night dress. We can pop some
pants on too’ replied the nurse. ‘Oh don’t you start up – I
thought you were one of the straight ones. Now you are
making a fool of me!’ ‘No Doris, I want you to be comfy.
If you don’t want things around your neck that’s fine –
we just don’t want all your privates on show.’
During another observation, Phyllis had become very
upset:
‘Phyllis continued to cry
. . . the housekeeper went over
to Phyllis ‘Phyllis, now don’t cry. It does you no good
love. I’ll make you a cup of tea. Your husband is coming
soon like he always does.’ The housekeeper wrapped
both arms around Phyllis and rocked with her like a
child, gradually slowing until the sobbing ceased.
8.1. Missed opportunities
By contrast, there were other occasions when both the
physical and psychological comfort of people-with-dementia appeared to be overlooked but could have been
addressed with relative ease. Angus was concerned that
the condition of his mother’s mouth affected her capacity
to communicate:
‘My mum’s lips kept sticking together because she
wasn’t drinking and we had to constantly say ‘Can
somebody please swab them and clean them?’
. . . and I
feel, may be, if someone could have just been a bit more
on the ball there
. . .
Similarly, Sally found that her mother had to wait for
too long in the emergency department on a trolley, despite
it being recognised my members of staff that this was an
undesirable situation:
‘She was on a hard bed, well one of those trolley things
and
. . . she was seen relatively soon by somebody . . .
who said that she needed to be got as soon as possible
onto a proper bed because this wasn’t going to help her
being on this thing. And I remember we sat and waited
for ages.’
This is likely to have caused her mother physical
discomfort as well as the psychological distress of being in
the emergency department.
There were relatively few examples of care designed to
enhance comfort within the data. Where caring interventions were observed, they tended to be associated with
working in a caring manner to achieve physical tasks, as
discussed by
McCarthy (2006) – nurses tended to be caring
but viewed care as being initiated by them and the patients
as passive recipients. Where interventions were made that
might promote comfort, physical discomfort took precedence over emotional discomfort (
Willaims and Irurita,
2006
). There was little evidence of nursing staff viewing
distressed behaviours as symptoms of discomfort (
Long,
2009
) and therefore few attempts were made to discover
the cause (
Berg et al., 1998). Furthermore, nursing staff
tended not to act in a person-centred proactive manner to
address primary needs of hunger, thirst, incontinence,
P. Clissett et al. / International Journal of Nursing Studies 50 (2013) 1495–1503 1501
inappropriate temperature, or restlessness. More starkly,
there was little evidence of hospital staff using sensory
interventions such as music, smell (
Merl, 2006) or human
touch (
Bush, 2001) to promote psychological comfort for
people with dementia.
9. Limitations of the study
There are a number of limitations to this study. Firstly,
all data were collected in relation to time in hospital in one
NHS Trust. This means that it offers insights into the
practices of a limited range of healthcare practitioners.
However, a significant volume of data was collected and
we were satisfied that data saturation had been achieved.
As observation formed a significant part of the data
collection, it is possible that the behaviour of the
practitioners changed as a direct result of being observed.
However, observations tended to last for between 1 and 2 h
and it is difficult for practitioners in busy clinical areas to
sustain a change in their practice for this length of time
(
Mulhall, 2003).
As this was part of a larger study, we collected data
trying to uncover the way in which acute hospitalisation is
experienced by people with dementia, their family carers
and others. No explicit attempt was made to look for or
record interventions on the basis of the degree to which
they were person-centred. As a result, any judgements
made regarding the extent to which care promoted a sense
of personhood were our interpretations. Similarly, it
should be emphasised that the NHS Trust made no specific
claims to be delivering person-centred dementia care.
10. Implications and conclusion
This study supports assertions made elsewhere that
health care professionals in acute settings are not grasping
all opportunities to make their care person-centred
(
Douglas-Dunbar and Gardiner, 2007; Dahlke and Phinney,
2008; Edvardsson and Nay, 2009; McBrien, 2009
). Good
practice appears to be in ‘pockets’ as a result of individual
practitioners rather than comprehensive and consistent
across services (
Royal College of Psychiatrists, 2011). It is
possible that health care professionals do not understand
person centred care as a result of an ambiguous policy
climate. In the UK, the highly influential National Service
Framework for Older People (
Department of Health, 2001)
used the term person-centred care in terms of service
organisation rather than individual or team approaches to
care. Numerous subsequent studies indicate that nurses
falsely believe that the task-based approaches to care that
they are employing are person-centred (
McCarthy, 2006;
Skaalvik et al., 2010
). Even where people have a desire to
be person-centred in their approach, there is a wide range
of interpretations of person-centred care across the
professions (
Bolster and Manias, 2010).
Within this study, however, it was particularly notable
there was little evidence of a sense of identity, occupation
or comfort being supported. While it is recognised that
there are many challenges in promoting identity and
occupation in acute settings (
Davis et al., 2008; McCarthy,
2006
), the promotion of comfort is believed to be a central
element of nursing (
Wilby, 2005). Its relative absence
cannot be attributed to a lack of understanding of personcentred care.
This raises questions related to the impact of the
organisation. The health care climate has been identified as
the primary determining factor influencing the capacity of
nurses to deliver person-centred care (
Edvardsson et al.,
2009
). As person-centred care places primacy of the
relationship with the individual over the completion of
tasks, organisations need to empower professionals to use
this approach to care delivery. However, evidence suggests
that organisational factors mitigate against this happening
(
Tadd et al., 2011), with health care organisations focusing
on meeting financial and productivity targets at the
expense of care which is person-centred (
Francis, 2010,
2013
).
Finally, it appears that hospital staff are ill prepared to
deal with people with dementia (
Raivio et al., 2011),
considering many of the associated behaviours to be
problematic, difficult to understand and challenging to
deal with (
Gladman et al., 2012a,b). Within this context,
the delivery of care that is person-centred is unlikely.
There is a need for existing health care professionals to
develop a thorough understanding of dementia and
become competent in delivering person-centred dementia
care (
Traynor et al., 2011). Looking to the future, preregistration curricula need to place far greater emphasis on
the development of the skills necessary for effective
practice with people with dementia.
In conclusion, while this study identified some evidence
of practice that reflected elements of person-centred care,
it was clear that practitioners were not making the most of
every opportunity to make every intervention personcentred. The net result of this is that acute hospitals remain
potentially harmful places for people with dementia. There
is a need for this concept to be valued at the level of both
the individual and the organisation/team. At the individual
level, professionals need to recognise that every encounter
with a patient with dementia has the potential to either
enhance or diminish their sense of personhood and act
accordingly. At an organisational and team level, there is a
need to embrace a philosophy of care that facilitates the
promotion of personhood and equips practitioners with
the skills to deliver more effective person-centred care.
Conflict of interest
No conflict of interest has been declared by the authors.
Acknowledgement
The authors acknowledge the work of Dr. Fiona Ju¨ rgens
and Dr. Bella Robbins in contributing to data collection for
this study.
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