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The nursing care of stroke patients in nursing homes. Nurses’ descriptions and experiences relating to cognition and mood SUZANNE SUZANNE KUMLIEN KUMLIEN RNT Doctoral student, Department of Clinical Neuroscience, Occupational Therapy and Elderly Care Research, Karolinska Institute, Stockholm, Sweden KARIN KARIN AXELSSON AXELSSON RNT, DMSc Senior Lecturer, Red Cross College of Nursing and Health, Stockholm Nursing Home, and Department of Clinical Neuroscience, Occupational Therapy and Elderly Care Research, Karolinska Institute, Stockholm, Sweden Accepted for publication 7 December 1999 Summary Registered nurses working in nursing homes often care for stroke patients with impaired cognition and mood disorders. Understanding the behaviour of these patients often puts great demands on nurses. This study illuminates registered nurses’ descriptions and experiences of stroke patients and the nursing care given in nursing homes, with a focus on cognition and mood. Registered nurses responsible for the care of stroke patients in nursing homes were asked to describe the individual patient’s state of health and the nursing care given. Patients’ cognition and mood have been selected for this article. A qualitative content analysis was used to group the text into categories. Registered nurses’ descriptions showed great complexity and variation in patients’ disabilities, as well as uncertainty about understanding these patients and the appropriate nursing care. Registered nurses described the need for further education in stroke care, and adequate resources for patient activity training, as well as meeting patients’ psychosocial and communicative needs. Keywords: cognition, nursing care, nursing home, mood, stroke. Introduction Many severely impaired stroke patients need nursing care and rehabilitation, either for an extensive period of time or for the rest of their lives. After a short stay in an acute care hospital these patients are often discharged to a nursing home where health and social care are chiefly given by registered nurses and a nursing staff having various occupational skills. An earlier study (Kumlien et al., 1999) showed that severely impaired stroke patients discharged to nursing homes had a shorter mean length of stay of 5.6 days on an acute ward before the decision to discharge was taken, in Correspondence to: S. Kumlien, Department of Nursing, Box 286, SE-17177, Sweden (e-mail: suzanne.kumlien.omv.ki.se). Journal of Clinical Nursing 2000; 9: 489–497 Ó 2000 Blackwell Science Ltd 489

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Page 1: The nursing care of stroke patients in nursing homes. Nurses’ descriptions and experiences relating to cognition and mood

The nursing care of stroke patients in nursing homes. Nurses'

descriptions and experiences relating to cognition and mood

SUZANNESUZANNE KUMLIENKUMLIEN RNT

Doctoral student, Department of Clinical Neuroscience, Occupational Therapy and Elderly Care

Research, Karolinska Institute, Stockholm, Sweden

KARINKARIN AXELSSONAXELSSON RNT, DMSc

Senior Lecturer, Red Cross College of Nursing and Health, Stockholm Nursing Home,

and Department of Clinical Neuroscience, Occupational Therapy and Elderly Care Research,

Karolinska Institute, Stockholm, Sweden

Accepted for publication 7 December 1999

Summary

· Registered nurses working in nursing homes often care for stroke patients with

impaired cognition and mood disorders. Understanding the behaviour of these

patients often puts great demands on nurses.

· This study illuminates registered nurses' descriptions and experiences of

stroke patients and the nursing care given in nursing homes, with a focus on

cognition and mood.

· Registered nurses responsible for the care of stroke patients in nursing homes

were asked to describe the individual patient's state of health and the nursing

care given. Patients' cognition and mood have been selected for this article. A

qualitative content analysis was used to group the text into categories.

· Registered nurses' descriptions showed great complexity and variation in

patients' disabilities, as well as uncertainty about understanding these patients

and the appropriate nursing care.

· Registered nurses described the need for further education in stroke care, and

adequate resources for patient activity training, as well as meeting patients'

psychosocial and communicative needs.

Keywords: cognition, nursing care, nursing home, mood, stroke.

Introduction

Many severely impaired stroke patients need nursing care

and rehabilitation, either for an extensive period of time or

for the rest of their lives. After a short stay in an acute care

hospital these patients are often discharged to a nursing

home where health and social care are chie¯y given by

registered nurses and a nursing staff having various

occupational skills.

An earlier study (Kumlien et al., 1999) showed that

severely impaired stroke patients discharged to nursing

homes had a shorter mean length of stay of 5.6 days on an

acute ward before the decision to discharge was taken, inCorrespondence to: S. Kumlien, Department of Nursing, Box 286,SE-17177, Sweden (e-mail: suzanne.kumlien.omv.ki.se).

Journal of Clinical Nursing 2000; 9: 489±497

Ó 2000 Blackwell Science Ltd 489

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comparison with patients discharged to a rehabilitation

ward. Patients discharged to nursing homes were in need

of special nursing care, medical care, and various types of

rehabilitation. They were often cognitively impaired and

many suffered from depressive symptoms (Kumlien et al.,

1999).

Cognition is a complex function which involves mem-

ory, associations, reasoning, planning, verbal and non-

verbal expression and information processing. Cognitive

in¯uences are present in the physical functioning of stroke

patients (Tatemichi et al., 1994; Sisson, 1995). Although

cognition is described and used as an important predictor

for the outcome of stroke (World Health Organization,

1989), thus playing an important role when deciding

further care for stroke patients, it has often been rather

generally investigated. The focus on rehabilitation has

been dominated by the physical manifestation of stroke,

thereby diverting attention from potentially larger prob-

lems such as different cognitive and communicative

disorders, emotional disturbances and social disadvantages

(Forster & Young, 1992). However, many researchers

today emphasize the need for a more in-depth cognitive

assessment for accurate detection, description and differ-

entiation of cognitive impairments in stroke victims, and

thus better planning of interventions (Finlayson, 1990;

Algase & Beel-Bates, 1993; Tatemichi et al., 1994; Cam-

mermeyer & Prendergast, 1997; Hajek et al., 1997). Various

kinds of instruments for the assessment of cognitive

function are often used in a test situation. Registered

nurses working in nursing homes, however, meet severely

impaired stroke patients suffering from cognitive and

emotional disorders at different stages of their stroke.

These patients should be given help and training in order to

rehabilitate them to their optimal level. To learn more

about this aspect, to which insuf®cient attention has been

given, registered nurses in nursing homes were asked about

their nursing care of stroke patients.

Aim

The purpose of this study was to identify registered

nurses' descriptions and experiences of stroke patients and

their nursing care, focusing on cognition and mood.

Method

SAMPLESAMPLE

Interviewees were registered nurses who were responsible

for the nursing care of stroke patients in nursing homes

(Table 1). Their age varied between 23 and 60 years

(mean 41 years). Data about age are missing for four

subjects. The nurses were selected secondary to the

selection of the patients. All patients in ®ve nursing homes

located in Stockholm and with a diagnosis of stroke, in

accordance with the International Classi®cation of Dis-

eases, Ninth revision (ICD-9) (WHO, 1976), and who had

a length of stay of no more than 1 year in the nursing

home were included in the study (Table 1). Patients with a

diagnosis of dementia were excluded. There were 27

(67.5%) women and 13 men, ranging in age from 55 to 92

(mean 78) years. Fifty-three per cent came from elderly

care rehabilitation wards, 35% from acute care wards and

12% from their own homes, residential homes or other

nursing homes. Patients' mean length of stay in the

nursing home at the time of the interviews was 126 days

(range of 22±378 days).

ETHICSETHICS

The research ethics committee at the Karolinska Institute

approved the project (No 94 : 341). Informed consent was

obtained from the nurses. There was only one objection

made by one of the nurses, who declined an interview

about a particular patient.

INTERVIEWSINTERVIEWS

The ®rst author used an interview guide. Registered

nurses were asked to talk about an individual stroke

patient. The purpose was to allow the registered nurses, in

their own words, to present their descriptions and

experiences of caring for the patients. Questions were

asked concerning the patient's state of health, healthcare

needs, healthcare interventions and changes in their

state of health. The intention was to complement the

Table 1 Descriptions of the nurses interviewed, the nursing homes

where they worked and the stroke patients described in interviews

Nursing homes

A B C D E Total

Numbers of wards 3a 2a 2 3 3 13

Nurses interviewed 7 7 3 8 5 30

Numbers of years worked as

a registered nurse (median)

1.5 8 7 6 9 7 (<1±25)

Numbers of registered nurses

with education in stroke

0b 4 1 0c 0 5

Patients 10 8 5 11 6 40

a One of the wards focused on long-term rehabilitation.b Two registered nurses had taken a course in rehabilitation.c One registered nurse had taken a course in elderly care.

490 S. Kumlien and K. Axelsson

Ó 2000 Blackwell Science Ltd, Journal of Clinical Nursing, 9, 489±497

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descriptions given and to obtain as far as possible a

complete description of patients using questions such as

`Does the patient have any other problems/needs?' `How

do you ± the staff ± intervene with them?' A few questions

were about the registered nurses' experiences and know-

ledge about stroke care. The tape-recorded interviews each

lasted for about 1 hour and were later transcribed verbatim.

ANALYSISANALYSIS

When reading the interview text the cognition and mood

content appeared very important in the registered nurses

descriptions of the patients, and became the focus of this

analysis. All text with descriptions of patients' cognition,

mood, related healthcare, and registered nurses' re¯ections

on cognition and mood, as well as their knowledge and

experience in stroke care, were sorted separately. The text

was divided into meaning units, which were later sorted

into categories with regards to content (cf. Morgan, 1993);

the ®rst author carried out the categorization. The

researchers met regularly during the analysis to discuss

the meaning units and categories.

Findings

COGNITIONCOGNITION

When registered nurses described patients' cognition they

usually used a common language, describing different

behaviours and interpreted meaning. They did not talk

about criteria for different impairments nor did they

mention the use of any tool to support their assessments.

Their descriptions were divided into nine categories

(Table 2). Each category contains different disabilities,

degrees of disability and changes in disability. There were

descriptions about cognition in 36 (90%) patients, of

whom 26 (65%) were described as having disabilities in at

least one category (Table 2), although many patients were

described as having several disabilities. Fifteen patients

showed cognitive improvement during their stay in the

nursing home, while for four, deterioration was reported.

Clarity. Patients were described as being mentally clear,

perhaps a bit forgetful, or as being fairly clear in their

thinking, since it was possible to talk to and, almost

always, understand them. Registered nurses spoke of

patients whose thinking became much clearer, sometimes

after a year or so, and then being able to participate in

group activities which had not been possible before:

He is possibly slightly demented, it is hard to say

exactly what the problem is. I have not participated

in any¼ you know¼ what day and month it is¼. I

do not have that background, but anyway I think he

is not quite clear, there is something in his behaviour.

Confusion/orientation. According to the nurses there

were patients who spoke of strange experiences, who had

incoherent thoughts or who had seen things that did not

exist. They told of patients who could not ®nd their way

around, who got into other patients' beds or who were not

time-orientated. There were also patients who became

confused or talked incoherently less frequently than before

or who became quite well orientated:

Sometimes in the morning he answered questions in

a strange way, as if he were in an alien world.

Table 2 Registered nurses' descriptions of patients' cognition, mood and related care interventions

Cognition n = 36a n = 26b CC ESC PRC

Clarity 21 10 0 + 0

Confusion/orientation 11 9 0

Strange behaviour 0 13 (+) (+) +

Forgetfulness/remembrance 10 9 + (+) +

Alertness 1 1 (+) 0 0

Awareness 7 6 + 0 +

Verbal/non-verbal expressions 24 23 + (+) (+)

Making oneself understood 24 19

Understanding others 18 12

Mood n = 27a n = 27b CC ESC PRC

Expressions 8 8 0 (+) 0

Actions 14 14

Will 10 10

a all patients.b patients with some disabilities.

CC, compensatory care; ESC, emotional and social supportive care; PRS, physical rehabilitative care.

+ speci®c described; (+) common described; 0 not mentioned.

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Care following stroke Nurses' descriptions of stroke patients in nursing homes 491

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However, after a while as he becomes calm, this

disorientation disappears.

Strange behaviour. Stories were related about patients

who become easily distracted and very impatient, not being

able to complete activities, for example, the patient starts an

activity but suddenly throws away everything, then moves

away. Some patients were interpreted as not knowing how

to use equipment adequately for daily living activities,

while other patients were interpreted as having dif®culties

in following instructions. Reduced inhibitions, changed

personal characteristics, and lack of initiative were other

examples of strange behaviour related to cognition:

He transferred from the wheelchair to the bed but as

he was too far from the bed, fell on to the ¯oor.

Forgetfulness/remembrance. Some patients' memories

were described as fairly good, while others were described

as forgetful. For example, one patient was described as

preparing to wash herself but, after taking up the soap, she

was motionless ± seeming to have forgotten what she was

supposed to do:

I am unsure how it is with her memory, she seems to

be disoriented, but still recalls certain things.

Alertness. In this category there was only one patient

who was described as drowsy on arrival. In a few weeks the

drowsiness gradually subsided as she became fully awake

and was able to understand everything, managing all

activities except swallowing and speech:

After a while she could walk around helped by two

staff, though she kept her eyes shut and was almost

asleep.

Awareness. Registered nurses told of patients who just

ate food from one side of the plate, who did not ®nd things

on their left side, or who had dif®culties ®nding a person

who addressed them from the paralysed side. There were

also stories about patients not being aware of their

impairments, which sometimes resulted in them falling:

She thought she could walk and suddenly she stood

up. She has fallen several times.

Verbal and non-verbal expression. There were patients

who were just able to make sounds, while others uttered a

few words or sentences, at times inadequately. Some spoke

very slowly, lost or repeated words or began speaking

more words and whole sentences. Patients who fell back

on their mother tongue were understood by the nurses as

having forgotten Swedish. The registered nurses also

spoke of patients who communicated through bodily or

facial expressions and that it was good if the patients did

not have a motionless face:

When the occupational therapist asked the patient

about training she turned away from the therapist

and shut her eyes. I think the training hurts her arm.

Making oneself understood. Registered nurses described

patients who tried to make themselves understood and

who became very frustrated whenever the staff did not

understand them. Some patients just answered in their

mother tongue, which the nurses could not understand.

There were patients who were sometimes able to express

themselves, even though in the end what they said could

turn out to be incoherent, while others, despite their

unclear speech, were still able to make themselves

understood:

When he forces himself, he can make himself

understood after a while, though it takes time.

Understanding others. Registered nurses spoke about

patients who understood or had dif®culties in under-

standing the meaning of words, or who were only able to

understand their mother tongue. One nurse reported that

it was her view that a patient understood, while other

nurses were less certain about how much a patient really

understood. There were reports of patients who were seen

as having severe dif®culties in understanding and who

offered laughter as a response. However, there were times

when patients were able to make themselves understood:

If only he could communicate better it would work

much, much better. You see how happy he is, when

he understands what you say and succeeds in

answering the question.

MOODMOOD

The mood of 27 (68%) patients was described; this

included patients who were interpreted as being depressed

or seen as showing signs that could be connected with

depression as well as other mood changes. Improvements

in the condition of 17 patients were reported, while the

condition of ®ve had deteriorated since their arrival at the

nursing home. Registered nurses' descriptions of patients'

moods were divided in three categories (Table 2), inclu-

ding changes, degrees and frequencies.

Expressions. Registered nurses described patients who

cried, who had no dif®culty in shedding tears, and who

looked worried or resigned, as if they could not under-

stand their own situation. There were interpretations

made of patients who appeared upset, stressful, or who

had become anguished and nervous. Registered nurses

told about mood changes where patients became happier,

calmer or did not cry as much as before:

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492 S. Kumlien and K. Axelsson

Page 5: The nursing care of stroke patients in nursing homes. Nurses’ descriptions and experiences relating to cognition and mood

She is tired in a good way, she looks happy but sleepy

after an active day.

Actions. There were descriptions of very passive

patients who took few initiatives, spending most of the

time in bed or subsequently becoming alert. These

behaviours were often seen as signs of mood status. There

were patients with reduced interest in themselves and

their surroundings, but a contrasting picture was also

presented. Signs of mood status relating to appetite was

also mentioned:

She wants to go to sleep, she sleeps a lot. When we

are going to have coffee she says `Not today', she

wants to sleep instead. She is withdrawing a lot.

Will. Registered nurses regarded the patients' will to

live as a very important factor in the successful outcome of

care, and spoke also of patients with a strong will to live.

However, there were patients whom they interpreted as

having lost their will to live, no longer wishing to continue

the struggle to regain their health or to stay alive. There

were reports of patients who expressed the desire to die

and wanted help to do so, refusing treatments:

He said he started to get tired of his life ¼. He asked

me about some drug to end his life.

NURSING CARE INTERVENTIONSNURSING CARE INTERVENTIONS

CONCERNING COGNITION AND MOODCONCERNING COGNITION AND MOOD

The nursing interventions described were often common

and unspeci®c. The few speci®c descriptions were given

by the registered nurses, with education or experience in

stroke care or good collaboration with therapists. The care

interventions described were sorted into three categories:

compensatory care (CC), emotional and social supportive

care (ESC) and physical rehabilitative care (PRC)

(Table 2). The nursing care intended to meet a speci®c

patient's needs/problems often contained interventions

from more than one category. The interventions are thus

presented according to patient needs/problems.

Interventions to help patients described as `not clear in

the head' or confused were few and aimed at stimulating,

encouraging and treating the patient with respect, integrity

and patience. Registered nurses told about their attempts

to give these patients suf®cient attention. Acceptance and

understanding of the behaviours and communications of

patients were also regarded as important factors:

We have to have more personal contact and try to talk

to him, so that he does not lose his speech, become

confused and a little demented (emotional and social

supportive care).

The registered nurses, who cared for patients who were

unable to complete their activities, stressed the importance

of being calm in preparing the activities, giving instruc-

tions, and guiding the patient. It was necessary to give the

patient suf®cient time to do one task at a time, supporting

such efforts to the end. Patients who used equipment

inaccurately in the course of their daily activities were

shown and guided during each activity, without distrac-

tions. Patients suffering from reduced ability to assess

distances received detailed instructions. Training through

other methods, e.g. playing, were seen as helpful to

patients who could not follow instructions:

You gave a little instruction and he did as much as he

could (physical rehabilitative care). When he lost his

patience, you helped him (compensatory care) and

tried to calm him down (emotional and social

supportive care). If possible you guided him to

continue his activities (physical rehabilitative care).

Patients who lacked initiative or were forgetful received

encouragement and were looked after and reminded. The

registered nurses found it dif®cult to leave patients with

instructions only, for at times the patients did nothing.

Patients with impaired memory sometimes received

memory training from an occupational therapist:

We stimulate the patient to eat. We sit beside her

and guide her hand to her mouth (physical rehabil-

itative care) and she is looked after, reminded, and

provided with proper comfort while she is sitting

(compensatory care).

For patients who were not aware of their impairment,

restraints were used to prevent them from falling.

Registered nurses spoke also of occasions when the

decision was made not to use restraints since this would

have led to injury. During their daily activities patients

were reminded continuously, for example, about a

neglected arm, or to pay attention to the neglected side

of their body. The environment was arranged so as to

increase patients' awareness of their own neglect:

We teach her to bring the arm with her (physical

rehabilitative care). You have to put the plate to the

right, otherwise you have to turn the plate and tell

him he has half the portion left (compensatory care).

The amount of time offered to patients was seen as an

important factor for them to make themselves understood.

A stressful situation was not favourable to them. Talking

to them was the method most frequently used to help

patients with speech dif®culties. Speech training was only

mentioned by some registered nurses. Access to a speech

therapist varied and the waiting time was sometimes up to

4 months. Instructions to staff on how to train patients

were seldom given by the speech therapist. Two nursing

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Care following stroke Nurses' descriptions of stroke patients in nursing homes 493

Page 6: The nursing care of stroke patients in nursing homes. Nurses’ descriptions and experiences relating to cognition and mood

homes had group activities to improve patients' commu-

nication. To relieve the communicative burden patients

were asked questions, making it possible for them to

answer `Yes' or `No'. Patients were continually informed

of the care activity that related to what the registered

nurses were doing. This approach was also intended to

increase the patients' understanding. With the exception

of hearing aids, communication devices were seldom used

to promote communication. Staff members with know-

ledge of the patient's mother tongue were used in cases

where patients were described as having dif®culties in

speaking and understanding Swedish, but an interpreter

was seldom used:

You try to communicate with the patient, we do not

have any special training (emotional and social

supportive care), but sometimes we get instructions

from the speech therapist (physical rehabilitative

care). We have tried communication devices but it

did not work (compensatory care).

For patients with depressive symptoms the nursing care

most commonly described was talking, although one nurse

emphasized that listening was even more important. A

couple of patients received conversational therapy from lay

workers. Various pharmacological therapies were used for

depression and anxiety, but for some patients' drug

treatment had been reduced or stopped following positive

results from increased attention:

We try to ®nd out things for her to do, e.g. go on

an excursion to have something happen in her life,

but unfortunately it happens too seldom (emotional

and social supportive care).

REFLECTIONS ABOUT PATIENTS' COGNITIONREFLECTIONS ABOUT PATIENTS' COGNITION

AND MOODAND MOOD

Registered nurses' re¯ections with regard to cognition and

mood were sorted into three categories: understanding,

certainty and satisfaction.

Understanding. Written reports from previous health-

care interventions, for example assessments carried out by

a speech therapist, or assessments of cognitive state, were

sometimes dif®cult to understand or were not in agree-

ment with the registered nurses' opinions about the

patients' mental state. Registered nurses expressed under-

standing of patients who were depressed, sad, bored and

passive due to their life situation and also because nursing

homes could not meet the patients' needs for meaningful

activities. They spoke about their tremendous frustration

when they could not understand patients, a problem

which led to dif®culties in getting to know patients as

persons as well as in understanding their feelings.

However, the nurses were at times able to interpret

patients' facial expressions or behaviour:

She looked as if she was asking, `What more did he

say?' and I tried to tell everything that her son told me.

Certainty. Nurses' descriptions re¯ected dif®culties in

knowing the state of patients' cognition, e.g. ®nding out

how much patients understood, whether they could read,

had impaired perception, apraxia, or impaired memory.

Nurses were also uncertain about the causes leading to

patients' mental states, e.g. whether confusion or memory

problems were caused by brain damage, infection, fear,

fatigue or lack of stimulation, and whether depressed

mood was caused by actual brain damage or patients'

current situations. Depression, dementia or dif®culties in

understanding were used to explain why a patient avoided

contact with others, while pain or family problems were

used to explain a patient's aggressive behaviour.

Uncertainty and frustration were expressed with regard

to the way in which to approach patients, as nurses did

not know what patients required of them or what the

actual problem that confronted the patients was really

about, and they then felt as though they had not done

enough. They sometimes expressed uncertainty about

what kind of care patients received from other staff

members, although examples of good collaboration were

also given:

If he was clear, maybe you could understand that he

does not want to struggle anymore¼ I have not

succeeded in reaching him and know what he

wants¼What am I supposed to do?

Satisfaction. Patients' improvements were seen as a

credit to the treatment received, which stimulated

registered nurses in their work. On the other hand,

deterioration of a patient's condition raised doubts about

the meaning of rehabilitation. Nurses were critical of

patients' bad states of health on arrival at the nursing

home and thought that they had been prematurely

discharged from acute care hospitals. Patients were

described as confused, malnourished, not able to swallow,

drowsy, with undiagnosed diabetes or very depressed.

Reports about patients from earlier caregivers were

sometimes not satisfactory. Dissatisfaction was also

voiced about nursing staff members without proper

education, with dif®culties in speaking Swedish and an

attitude of assisting patients too much. However, satis-

faction with staff was also expressed. Registered nurses

also claimed that there were nursing members who

distracted patients or who did not guide them in a proper

way because they were in a hurry. A stressful work

Ó 2000 Blackwell Science Ltd, Journal of Clinical Nursing, 9, 489±497

494 S. Kumlien and K. Axelsson

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situation was described as a risk for causing indifference

among staff when caring for patients, often resulting

in neglect of their psychological and social needs. Dis-

appointment was expressed concerning dif®culties in

obtaining speech therapy and the lack of possibilities for

rehabilitating cognitively impaired patients. Nurses also

criticised the fact that rehabilitation opportunities were

withdrawn from patients who did not improve quickly

enough, due to shortages of resources:

She needs more stimulation, more than we can give,

it is a question of resources.

DESCRIPTIONS OF KNOWLEDGE AND EXPERIENCESDESCRIPTIONS OF KNOWLEDGE AND EXPERIENCES

IN STROKE CAREIN STROKE CARE

Actual knowledge and experiences. After their stroke

education course (Table 1) registered nurses realized how

little they had understood about patients' behaviour prior

to it. They regarded this new knowledge as important in

being able to treat patients adequately, for example, those

patients who had been suffering from neglect. Special

education in rehabilitation brought about a changed

attitude to a more active rehabilitation role. For registered

nurses working in wards where nursing staff were also

educated in rehabilitation, they saw that the knowledge

made a difference to patients and were enthusiastic about

this. Access to, and collaboration with, paramedical staff,

clinical experiences from acute stroke care or periods of

practice in stroke rehabilitation units were mentioned as

valuable resources and knowledge:

The stroke course helped me deal with the patients'

behaviours.

The need of knowledge and experiences. Registered nurses

expressed the need to understand patients' different

behaviours in relation to their brain damage and how to

treat them. They felt that they lacked knowledge and

clinical experience in stroke care and regarded their own

basic nursing education about stroke, taught in nursing

schools, as too super®cial. Only ®ve registered nurses had

attended a special education course in this area (Table 1).

Communication, dementia, neurology, rehabilitation, pre-

vention of contractures, swallowing and eating problems,

as well as emotional support, were regarded as areas for

further education. They also wanted all nursing staff to

receive education in stroke care and better collaboration

with paramedical staff:

In the other nursing home, we received education

and training from the therapists and this was

positive¼You felt that the patients got more spe-

cialized nursing care and training than here.

Discussion

When the registered nurses described patients' cognition

they often used a common language and ambiguous

expressions, which is in line with other studies (Gustafson

et al., 1991; Granberg, 1994; Gibbon & Little, 1995).

Their re¯ections also revealed uncertainty about the state

and degree of patients' impairment as well as its causes.

A poor assessment could result in an incorrect or vague

diagnosis, as well as inadequate care planning (Sutcliffe,

1990; Gustafson et al., 1991; Sisson, 1995). None of the

registered nurses used any kind of instrument that might

have helped them to achieve better detection, description

and differentiation of patients' cognitive function. How-

ever, lack of knowledge could make it dif®cult to

understand and use an instrument. Furthermore, nurses

might ®nd instruments that focus on impairment too

distant from their reality in understanding patients'

disabilities in an everyday situation. Their descriptions

of patients' disabilities according to cognitive impair-

ments/mood disorders gave concrete and valuable exam-

ples from daily life. Thus, an instrument about cognitive

impairments developed by nurses that focuses on disabil-

ities might be easier to understand and use in clinical

practice.

Registered nurses' descriptions of mood disorders

correspond with those found by Bennet (1996) while

interviewing skilled nurses about this topic, and also with

the diagnostic criteria for major depressive disorders

(American Psychiatric Association, 1994). However, regis-

tered nurses sometimes found symptoms of mood disor-

ders dif®cult to distinguish from the physical results of

stroke, a problem also reported by House (1987). Depres-

sion has been suggested as worsening cognitive impair-

ment (Downhill & Robinson, 1994), which could

aggravate these dif®culties.

Kirkevold (1997) showed that the nursing care provided

to deal with a speci®c problem for stroke patients requires

interventions with different foci and purposes. Interven-

tions with different combinations of care categories to

meet one speci®c patient problem were also described in

this study.

Compensatory care (Table 2) was not described at all

for some categories of cognition and mood, which is

perhaps more related to the study method used than the

care provided. Many patients suffered from physical

impairments; compensatory care in connection with these

and not with cognition or mood was mentioned by

registered nurses.

Although there were many descriptions of patients in

the categories of clarity and confusion/orientation in our

Ó 2000 Blackwell Science Ltd, Journal of Clinical Nursing, 9, 489±497

Care following stroke Nurses' descriptions of stroke patients in nursing homes 495

Page 8: The nursing care of stroke patients in nursing homes. Nurses’ descriptions and experiences relating to cognition and mood

study, there were few descriptions of interventions. Other

studies (Norberg & Asplund, 1990; Ekman et al., 1991)

have shown that caregivers who felt they were unable to

make contact with severely demented patients experienced

care as meaningless, spending less time with those patients

(Armstrong-Ester & Browne, 1986; Ekman et al., 1991).

The registered nurses in our study expressed dif®culties in

understanding some patients, as well as in knowing what

these patients really wanted. Such dif®culties created a

sense of frustration for nurses and might be one explan-

ation for few interventions being described. However,

some descriptions of emotional and social supportive care

for patients who were confused or not mentally clear, were

about treatments focused on patients as individuals,

promoting integrity and preventing deprivation. Such

treatments have been shown to induce a reduction in

distractibility, confusion, anxiety, depressed mood, and

improvement in physical performance for demented

patients in a nursing home (BraÊne et al., 1989). Talking

to patients was described in connection with the categories

of communication and mood, although it was very vague

and unspeci®c; the purpose was not clearly described.

However, descriptions of emotional and social supportive

care for strange behaviour and forgetfulness/remembering

often did contain a clear purpose of making the patient

calm or encouraged during an activity.

Physical rehabilitative care was described in connection

with strange behaviour, forgetfulness or awareness and

contained different speci®c techniques to train those

patients. These and other interventions were described by

Baggerly (1991) and Cook & Tigpen (1993). Baggerly

(1991) also emphasized the need for development of nurses'

assessment skills and intervention repertoire to deal, for

example, with neglect and perceptual problems. Interesting

suggestions for new kinds of interventions for patients who

were not able to follow instructions were given. There is a

need to ®nd new ways to meet and stimulate severely

impaired stroke patients at the current level in their

rehabilitation process, without imposing a burden. Stroke

patients have described self-care as an imposed burden

when they did not feel ready for it (Macduff, 1998).

There were many stroke patients in the nursing homes

who suffered from a complexity of impaired cognition and

mood disorders, according to the registered nurses

interviewed. It was a very dif®cult, complex and time-

consuming task to understand and care for those patients.

Yet only a few registered nurses had any special education

in stroke care and many claimed that their basic education

was not adequate to meet those patients' needs. This has

been highlighted in many studies (Myco, 1984; Wild,

1994; Bennet, 1996; Jones et al., 1997; Nolan & Nolan,

1999). This was probably a reason for the common and

unspeci®c descriptions of nursing interventions, while

registered nurses with special education in stroke care or a

good collaboration with paramedical staff gave more

speci®c descriptions. The bene®t of a multidisciplinary

team in stroke care is well known (Karla et al., 1993;

Langhorne et al., 1993; Kaste et al., 1995) and should not

be neglected in nursing homes, where nurses' needs for

collaboration and supervision are great.

A changed attitude to stroke care and rehabilitation is

emerging, which demands a holistic view, focusing more on

the impact stroke has on patients' lives and recognizing its

psychosocial impact rather than simply physical function-

ing (Doolittle, 1988; Nolan & Nolan, 1997). This study

showed the multidimensional care needs of patients, where

optimal interaction to stimulate and support them is crucial

for their well-being and further rehabilitation. Neverthe-

less, a lack of resources was reported by registered nurses,

which results in neglect of patients' psychological and social

needs; this was recognized earlier by Bennet (1996) as well

as Jones et al. (1997). Patients in nursing homes have been

reported to be occupied by a minimal proportion of

meaningful activities (Nolan et al., 1995; Bircall & Waters,

1996). This was also stressed in this study and further

aggravated the patients' abilities to regain their health.

Several nursing homes in this study do not seem to

provide adequate care to stroke patients, and this was also

reported by Gladman et al. (1991). It is urgent to meet the

needs of stroke patients in nursing homes, where regis-

tered nurses have a signi®cant role to play. The nursing

role in stroke care has been described as being unclear

(Gibbon & Little, 1995; Kirkevold, 1997). However, there

are many on-going efforts to identify the nursing contri-

bution to rehabilitation (Nolan et al., 1997) and the

education needed by nurses to manage chronic illness and

disability (Nolan & Nolan, 1999). Furthermore, suf®cient

resources and good organization are required to improve

the care provided in nursing homes.

Acknowledgements

This study was supported by grants from the Karolinska

Institute, the Swedish Foundation for Health Care

Sciences and Allergy Research, the County Council of

Stockholm and the Swedish Stroke Association. We are

grateful to the nurses and patients in the nursing homes

who participated in this study. The authors wish to thank

Professor Bengt Winblad and Researcher Gunnar Ljung-

gren at the Department of Clinical Neuroscience, Occu-

pational Therapy and Elderly Care Research, Karolinska

Institute, Stockholm, for their valuable support.

Ó 2000 Blackwell Science Ltd, Journal of Clinical Nursing, 9, 489±497

496 S. Kumlien and K. Axelsson

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