European Journal of Cardiovascular Nursing 6 (2007) 273 279

www.elsevier.com/locate/ejcnurse

Living with heart failure; patient and carer perspectives

J.F. Pattenden , H. Roberts, R.J.P. Lewin
British Heart Foundation Care and Education Research Group, Department of Health Sciences, Seebohm Rowntree Building Area 4,
University of York, York YO10 5DD, England, United Kingdom

Received 12 October 2005; received in revised form 17 January 2007; accepted 29 January 2007
Available online 26 March 2007

Abstract

Patients with heart failure have multiple readmissions to hospital, a poor prognosis and varying quality of life. This paper explores how
patients with heart failure and their family carers cope with daily life. 36 patients and 20 family caregivers were interviewed in five centres in
the UK. Analysis showed that living with heart failure can be frightening, restrictive and distressing for both patients and their family carers.
Patients found most difficulty coping with functional limitation and adapting to living with heart failure, but also reported particular problems
due to side effects of medications, co-morbidities and a lack of psychosocial support and rehabilitation services. Those with less socio-
economic resources found it harder to cope. Patients from minority ethnic groups held different beliefs about the illness and its treatment, and
some had profound problems communicating with health and social care professionals that made managing the disease even more difficult.
Caring for a person with heart failure often has a considerable impact on the psychological and physical health of family caregivers.
Psychosocial support and rehabilitation services provided at diagnosis and after an acute episode would enable families to better manage
living with this syndrome.
2007 European Society of Cardiology. Published by Elsevier B.V. All rights reserved.

Keywords: Qualitative; Living with chronic heart failure; Carers

1. Background detection and treatment have improved, patients are still

Studies of heart failure patients using questionnaire
surveys reveal that patients and carers coping with chronic
heart failure have a poor health related quality of life. In
recognition of this burden, the British Heart Foundation
(BHF) funded posts for 16 heart failure specialist nurses
based in six centres around the UK. This article reports how
chronic heart failure affects the lives of patients and their
carers, and their perceived needs for support before receiving
help from a new specialist nurse service.
2. Introduction
The incidence and prevalence of chronic heart failure
have increased dramatically over the past few years. Whilst
suffering from the impact of the syndrome and have high
mortality rates [13]. Frequent rehospitalisation is common
with as many as 40% of patients being rehospitalised within
six months of discharge after an acute event [4]. Heart failure
is strongly associated with ageing and deprivation, and
demographic shifts are leading to an increasing demand on
the health service [5]. Patients typically have multiple
medical conditions, complex medication regimens, [6]
unpredictable exacerbations, disabling symptoms that in-
clude fatigue and breathlessness, limited functional status
and a poor quality of life [7].
Recently the Department of Health, [8] and the Scottish
Intercollegiate Guidelines Network [9] have endorsed the
use of specialist nurse-led services in primary and secondary
care, as part of a coordinated approach to patient care. There
have been several studies of the effectiveness of nurse-led

Funding: The study was funded by the BHF. care. Those using multidisciplinary, nurse-led home or clinic
Corresponding author. Tel.: +44 1904 321335; fax: +44 1904 321382. based interventions, [1012] case management [13] and
E-mail address: jp30@york.ac.uk (J.F. Pattenden). enhanced discharge planning and home follow up [6] have
1474-5151/$ - see front matter 2007 European Society of Cardiology. Published by Elsevier B.V. All rights reserved.
doi:10.1016/j.ejcnurse.2007.01.097

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274 J.F. Pattenden et al. / European Journal of Cardiovascular Nursing 6 (2007) 273279
shown positive effects on readmissions. A reduction in
adverse clinical outcomes and healthcare costs for patients
with heart failure have been reported as a result of patient
education and support [4].
Some studies of multidisciplinary team interventions for
patients with heart failure report improved quality of life,
[10,11,14] others show little or no effect [15,16]. Most of
these studies used either generic or disease specific measures
of health related quality of life (HRQL). These tend to
measure physical functioning, symptoms and psychosocial
functioning. However as many are not patient centred, they
may not have the sensitivity and specificity needed to
capture which aspects of quality of life are important to
patients [17]. Quality of life has been defined and discussed
by many authors [18,19], but there is little consensus as to
how this may be best measured and described [20]. For this
study we define quality of life as how an individual
experiences life, and whether this fits with his expectations
in terms of health, illness, goals; and how this impacts on
physical, psychological and social wellbeing. Some studies
have closely examined quality of life using a phenomeno-
logical approach to describe peoples' experience of living
with heart failure [21,22]. Although these studies describe
how patients with heart failure conceive their lives, they are
mostly middle aged or elderly and white, and also much has
changed in the pharmacological and non-pharmacological
treatment of heart failure recently. A more recent study used
thematic analysis to explore the impact of living with heart
failure on ten patients and their carers [23]. Our study also
addresses these issues and explores patients' and carers'
experiences of living with, and being treated for, heart failure
(LVSD). However, we tried to sample as many different
types of people as possible to include a wider range of
gender, age, NYHA level of heart failure, and ethnicity in
different geographical areas of the United Kingdom. The aim
was to better understand their experiences and health and
social care needs.
3. Method
3.1. Participants
We conducted the study in five centres in the UK: two
rural district general hospitals, one in Scotland and the other
in Northern Ireland; and three urban hospitals in England.
We obtained Ethical and Research Governance approval in
all centres.
We included patients newly referred to BHF heart failure
specialist nurse services with a diagnosis of heart failure
(Left Ventricular Systolic Dysfunction). We did not include
patients who had previously been seen by a heart failure
specialist nurse. Patients were also excluded if they had a
written case record of cognitive deficits; were unable to
make daily decisions about their own care; were living in a
nursing home or were unwilling to accept the specialist nurse
service.
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At the first consultation with a specialist nurse, eligible
patients and carers were given an information sheet inviting
them to participate in the study. Those agreeing to be inter-
viewed completed an interview response form, which
explained that they would be telephoned if they were selec-
ted for interview, and asking the patient to identify a con-
venient time and the language of choice for interview.
We employed purposive sampling based on the theoret-
ical principle that it is good practice to ensure the maximum
variation of patients and settings. The five categories used in
the sampling strategy were: gender, age, ethnic group,
NYHA classification of severity of heart failure and centre.
Seven or eight patients from each centre were sampled from
the total of 124 who agreed to be interviewed.
3.2. Data collection
We interviewed 36 patients and 20 carers in their homes
between December 2002 and August 2003.Written informed
consent was obtained immediately prior to interview. All
interviews were audiotaped, with participants' permission,
and ranged from 60 to 90 min. Although the researcher
requested interviewing the carer separately from the patient,
most expressed a wish to be interviewed together (12 out of
20). A semi-structured interview scheme was developed with
separate questions for patients and carers; where possible
attempts were made to have a few minutes alone with each,
to give them a chance to raise any issues they felt uncom-
fortable to talk about in front of their family member.
A semi-structured interview schedule was used to guide
the conversation and facilitate exploration of participants'
experience of living with heart failure; their understanding of
the condition, their symptoms and how they manage day-to-
day living. We also asked them about their experiences of
health services and treatment they had received in the past
for their heart failure.
As well as tape-recorded interviews, data collection
included the interviewer's notes made during and after the
interview to record any relevant contextual details. A trained
bilingual researcher conducted interviews in Punjabi with
four patients and four carers, and a Gujarati speaking
interpreter was used for interview with one patient.
3.3. Analysis of data
After each interview we analysed the new data and if
necessary developed new codes to inform subsequent
interviews. Two research secretaries transcribed interviews
verbatim, and in the case of the interviews conducted in
Punjabi, the bilingual interviewer translated and transcribed
interviews into English. The principal researcher read the
transcripts whilst listening to the audiotapes to verify
accuracy of transcription. Constant comparative analysis
was used to analyse the transcripts [24].
Transcripts were read several times to familiarise research-
ers with the content and to develop a thematic framework.
 J.F. Pattenden et al. / European Journal of Cardiovascular Nursing 6 (2007) 273279 275

Explicit coding definitions and a coding frame was developed disabling co-morbidities made life extremely difficult for
to enable characterisation of lines of text. The interviews were many patients. The extent to which symptoms impacted on
then coded line-by-line to enable identification of areas that life depended on: the severity of the heart failure and co-
could be grouped together as themes. Emergent themes were morbidities, knowledge of self-management to prevent
discussed with the team. To check reliability of coding two exacerbation of disease, available resources and support.
members of the research team from different disciplines The narratives from some patients indicated that they were
independently examined 20% of the data and compared their better able to cope than others; some younger, less
coding strategies and interpretations. A thematic framework symptomatic patients reported a good quality of life, as did
was confirmed and all the coded data was entered into the some older patients who reported expecting to be able to do
NVivo computer package to link sections of text from all less with age. However, the majority of patients mentioned
interviews together where they covered similar issues. This the unpredictability of symptoms, having good days and
process allowed for the comparison of participant accounts and bad days. This caused great distress to both patients and
incorporation of deviant cases into the emerging thematic carers, who felt they didn't always understand why things
constructs. Final analytical concepts were agreed with the weren't improving or suddenly got worse. This could lead to
research advisory group, which included a patient with heart feelings of helplessness and hopelessness.
failure, his main carer and nurses responsible for the But some patients felt shattered after the slightest effort
management of patients with heart failure. and said how breathlessness affected their ability to
undertake even the simplest daily activities.
3.4. Findings
I've been tired and exhausted for a long timeI'm
worse now than I ever was with walking. I tried to walk
Patient characteristics are shown in Table 1. Of the 20
up the health centre Monday before lastit must have
carers, 17 were female spouses, one a daughter, and there
taken an hour and 15 minutes to get back homeit's only
were two male spouses. The mean age of interviewees is less
a 10 minute walk. It's uphill and every couple of minutes
than in the entire patient group due to sampling younger
I was sitting like a poor wino, with my feet in the road,
patients. It was felt important to sample younger patients,
sitting on the footpath to get my breath back and rested.
most of whom had cardiomyopathy and young families, as
(patient 18, male, aged 69)
they could bring up issues different to those of older people.
Six main themes arose from the data, plus one specific to Other patients experienced nocturnal breathlessness. This
Asian patients. These were: Dealing with symptoms, difficul- was especially distressing to both patients and carers as it
ties of multiple medications, the impact of co-morbidities, was frightening, affected their ability to sleep and exacer-
confusion anxiety and depression, adapting life to heart failure, bated other symptoms, such as fatigue and anxiety.
changing roles for carers, cultural/religious issues and Many patients said how bad their memories had become
language difficulties. since they developed heart failure. As a result some had
become anxious about managing their complex drug regi-
3.5. Symptoms, multiple medications and co-morbidities mens, keeping all of the hospital appointments and remem-
bering the lifestyle advice they had been given. Many had
These three themes are considered together as they little or no understanding of their heart failure and how to
interactively impact on patients' functional status and quality manage it.
of life. Symptoms such as tiredness, breathlessness and The side effects of medications were frequently mentioned,
ankle swelling, balancing the prescribed dose of medica- regardless of age or gender. Many patients expressed a fear that
tions against their side effects and coping with painful and some medications were doing more harm than good, as they
made them feel more ill and caused side effects such as
Table 1 hypotension and gastrointestinal disturbances.
Characteristics of patients at first interview
Centre No. of patients Gender of NYHA Mean age Ethnic I mean this time last year, he said I think I'll give them
(carers) patient stage (range) group (tablets) all up and just take my chances, that was the
1-Urban 6M 1 4 1 75(6489) 2W, 4A stage he was at. (carer 5, wife of patient aged 65)
9 (4) 3F 1 2 75(6382) 3W
2-Urban 5M 1 2 1 1 58(3668) 3W, 2AC And after I've had all these tablets in the morning, I'm
8 (5) 3F 1 1 1 65(5574) 3W afraid I'm not a very good person when I've taken them
3-Rural 4M 4 69(5679) 4W
because they make me feel so ill, they shouldn't do really
7 (3) 3F 3 66(5385) 3W
4-Rural 5M 1 2 2 62(4576) 5W should they? (patient 8, female, aged 74)
7 (6) 2F 2 73(6186) 2W
5-Urban 3M 1 2 66(5281) 3W A loss of balance and dizziness, potentially leading to a
5 (2) 2F 1 1 69(5879) 1W, 1A fall, were of particular concern to most patients. For some the
Key: W = White, AC = Afro-Caribbean origin, A = South Asian origin. greatest difficulty was the sheer quantity of drugs they had to

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276 J.F. Pattenden et al. / European Journal of Cardiovascular Nursing 6 (2007) 273279
take. Three female patients reported having bad nightmares
and anxiety attacks whilst increasing the dose of beta-
blockers.
Co-morbidities such as diabetes, chronic obstructive
pulmonary disease, angina, arthritis, gout and kidney problems
were particularly common. Some people found these more of a
problem to live with than their symptoms of heart failure,
which in some patients had improved with treatment.
The arthritis has never been as bad as what it's been this
year, joint wise.and it could be a side effect of these
tablets, which it states on here, like (drug information
sheet), but I've spoken to the doctor and he says it's just
a progression because of my age, and this is it. (patient
2, male, aged 69)
3.6. Confusion, anxiety and depression
Male and female patients talked equally of becoming
irritable and critical of others who were performing house-
hold tasks they used to do, and resentful at the loss of
activities, such as gardening or walking, that had given them
pleasure. They expressed feelings of guilt at being unable to
help with household chores and being dependent on others,
yet several acknowledged that it would be worse to be alone.
Changes in the patient's role within the family and a loss of
social relationships were common problems; but having to
rely on others caused the greatest distress.
Sometimes you get very, very, low. I just sit back and
watch the old girl do it. That hits me here, thinking I
should be doing that. I know up here that I can't and you
get very depressed. If I were on me own I wouldn't say
I'd go suicidal but I'd be a lot worse off than I am now, if
I were on me own I'd be in trouble (patient 25, male,
aged 66).
Men seemed to talk more about depression whereas
women more frequently mentioned fear and anxiety. Acute
episodes were particularly distressing; some patients
reported being anxious for weeks after an acute episode,
some found themselves unable to forget the event. Two
female patients who had experienced frightening acute
events were told there was no guarantee that they wouldn't
have another at any time, and were terrified of going to sleep.
Several patients expressed anxiety about the future; the lack
of a cure was mentioned, as were worries about other
conditions getting worse because of the treatment, for example
renal problems. Facing an uncertain future, not knowing how
long they would live and not being able to maintain the
lifestyle they were used to, often caused worry and low mood.
I just feel, you know, next week I might not be here
that's my initial sort of fear, you know, oh my God how
much longer have I got. (patient 24, male, aged 52)
One patient, summing up her quality of life as poor,
expressed anger at her consultant. She had been told that she
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was not yet ill enough to have a transplant but said that she
would like to take the risk of dying rather than continue with
the quality of life that she had.
I'm 53 and this is it, [gesturing to the room] what you
see, you know she [transplant surgeon] was quite
happy with the way I was, and so is [Dr] down at the
[name of hospital]he doesn't have to live my life!
(patient 16, female, aged 53)
However not all patients reported severe negative
emotions a few reported making the best of it and
refused to focus on the loss of role and sickness, and could
get on with it and remain positive. Some, particularly older
women, talked quite philosophically about the future. Some
patients had come through their depression and anxiety and
adjusted to the life they had and its restrictions. This was
often attributed to mediating factors, such as a supportive
family or having sufficient material resources.
However, this apparent acceptance could be misleading.
Three patients initially denied their feelings but, when the
spouse was not present, admitted to being depressed. In one
case the spouse contradicted her husband and revealed that
he had been talking about suicide only a few weeks pre-
viously. Some patients were taking medication for their
depression or anxiety; a few were receiving counselling or
regularly seeing a Community Psychiatric Nurse, but many
were not getting any help.
3.7. Adapting my life to heart failure
All patients experienced frustration at no longer being able
to do what they used to. Few patients had been given any
specific advice on how to remain active safely and it was
apparent that some had voluntarily limited their activity levels
due to a fear that activity would exacerbate their symptoms and
lead to a hospital admission. As a result some patients and their
carers had become virtually housebound.
No, we don't go out anywhere, we've got a wedding
invitation and hope to God that things are a wee bit better
so that we can go, just to get us out somewhere, you
know (patient 19, male, aged 56)
Many patients said they were in shock after being given
the diagnosis, and at the prospect of living with a chronic
illness. They rarely understood the cause of their heart failure
or knew how to prevent worsening of symptoms by controlling
fluid and salt intake, and weighing themselves to check for
fluid retention.
Where an inability to continue working was mentioned,
worries about finances were also raised. Poverty often com-
pounded a patient's ability to manage to live a normal life,
especially if they needed to have adaptations to their home but
were unable to afford it. Difficulties in accessing benefits such
as income support, disability allowance or social services
assessments caused great distress for some. These problems
were particularly acute for those who did not speak English.
 J.F. Pattenden et al. / European Journal of Cardiovascular Nursing 6 (2007) 273279
When I wash my feet I lift my legs up to the basinand
it's so painful. If I had the money I'd have a basin
installed lower down, this one's too highhe [the NHS
interpreter] said that this money is not right, you are 100
per cent disabled and should get disability allowance. I
thought, who do I have that can go there and fill out the
forms my wife can't either. (patient 33, male, aged 64)
Three patients mentioned positive outcomes in their lives
since heart failure. All were under 60 years of age and had
given up full time employment as a result of their heart
failure. They saw their illness as an opportunity to change
certain aspects of their lives such as pursuing further
education or taking up a different activity. Two said this
life-threatening condition made them and their loved ones
reassess their value to each other, as well as their priorities.
3.8. Changing roles
Many carers reported that their lives had completely
changed since their spouse or partner had developed heart
failure. Acute episodes were particularly stressful.
I rung him [the doctor] again. I said his condition is
worsening, he's really poor. I can't remember what he
told me, yes he told me give him the heart spray, which
I did, and then he start getting sick and then aboutI
think it were about 4 o'clock in the morning, I rung the
doctor again and said listen I don't want this
responsibility, I just can't take it, cos the man is blue.
(carer 1, wife of patient aged 76)
Some carers were close to complete physical exhaustion
through having to provide physical care, deal with medica-
tions, monitor symptoms and cope with lack of sleep.
I have to do everything. If he's in pain and calls out I go
running, rub his chest and when his ankles ache I
massage them. He's in a lot of pain at night. Every fifteen
minutes to half an hour he gets up. When he lies down he
becomes breathless and it's as though there isn't enough
oxygen. He gets all flustered and wakes up and I wake up
with him. I rub his chest and help him to stand. It's
terrible at night. I wake up and sit there. When he
manages to drop off then I lie down. (carer 33, wife of
patient, aged 64)
A few carers reported having to give up work or other
activities, which often led to them becoming isolated with
little time for themselves. Some carers felt unable to leave the
patient at all because they were not safe on their own, and
some would have liked some time off from caring duties,
additional support from family members or access to respite
care.
Particular difficulties arose where financial difficulties
were experienced. All five Asian patients and carers
mentioned this in relation to issues such as expenses incurred
travelling to and from hospital appointments, lack of money
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277
because of unemployment or the cost of day-to-day living
with a chronic and debilitating illness.
It's three years since he was ill. I bathe him, change and
wash his clothes. I hold onto him as he walks. There are
these bowls for urine I keep them here for the night. I
keep it all clean. Our bills can be three to four hundred
pounds, gas, electricity, telephone. If only I could be
helped a little. [Since the washing machine broke] I find
it impossible to wash clothes. (carer 35, wife of patient,
aged 89)
Carers often felt they had responsibility for the manage-
ment of the patient and took over the drug treatments and
controlled the patient's activity level. A few appeared to
have become overprotective, significantly reducing the
patients' autonomy and activity levels.
3.9. Cultural and religious issues
There were noticeable cultural differences in the way the
five patients and carers of South Asian origin discussed heart
failure, particularly when they talked about the meaning of
their condition and beliefs about the effects of treatment.
Some had consulted a traditional healer, all spontaneously
mentioned a belief in Allah and had a more philosophical
attitude toward their future and derived great comfort from
their spiritual and religious beliefs, especially when thinking
about death. Some patients mentioned that the power of
prayer, both their own and others', was a major factor in their
health. One patient attributed relief from severe symptoms to
a combination of prayer and medication. The discipline and
practice of Islam was mentioned in relation to knowledge
and understanding about diet, exercise and general health.
Included in this were comments about the importance of
cleanliness and mobility; an inability to conduct ritual
ablutions before daily prayers proved to be distressing for
some patients, as did not being able to prostrate during
prayer.
Other issues that were raised concerned lack of social
contact and language difficulties. The availability of an
interpreter was essential for all the non-English speaking
patients in order to understand heart failure and its treatment.
Language difficulties restricted opportunities for support
delivered by telephone. Although some patients could use
family members to call for emergency help, others without
English speaking family members reported waiting till
morning when they could get a GP who spoke their language
to get help with worsening symptoms.
4. Discussion
This study highlights the daily difficulties experienced by
patients with heart failure and their carers. Qualitative
research aims to produce findings that reflect the experiences
of the group studied. In this study the data were collected
from male and female patients and carers from a wide range
278 J.F. Pattenden et al. / European Journal of Cardiovascular Nursing 6 (2007) 273279
of ages and severity of disease, in urban and rural settings,
achieving data saturation. Our findings concurred with other
studies [2527] that found similar deficits in health related
quality of life, but we believe this study provides a deeper
level of understanding of the day-to-day impact of the
disease and an insight into the diversity of experience within
different groups. We have been unable to find a similar study
in patients of South Asian origin, and although our numbers
were small, participants reported notably worse circum-
stances and more severe functional limitation, exacerbated
by poverty and language difficulties. We are not aware of
any in-depth studies in the UK with carers of heart failure
patients and it was clear from this study that many feel
isolated, anxious and some close to exhaustion. It is how-
ever, a serious limitation that in more cases patients and
carers requested to be interviewed together, perhaps limiting
issues that participants felt able to express in front of their
family member. It is also interesting to note that in all cases
this issue did not arise with patients and carers of South
Asian origin where all agreed to be interviewed separately.
This study concurs with two recent studies, [28,29] in
which up to half of patients scored as depressed. In a separate
part of this study, all patients had completed quality of life
measures and the Hospital Anxiety and Depression Scale
(HADS) [30]. Approximately 50% of patients scored above
the level that indicates that a person might benefit from
treatment, for both anxiety and depression. The findings
from the interviews show that it was not only the patients, but
also carers, who reported severe psychological effects
from living with heart failure. This appeared to vary ac-
cording to factors such as social support, gender, race, age
and particularly poverty. Depression is linked with worse
self-care and poorer prognosis, [28,31] so must be identified
and treated. Although in some cases patients and carers were
being helped through counselling or medication, a great
number were not.
This study adds to previous understanding by showing
that side effects of drug regimens are perceived by many
patients as outweighing the potential benefits of treatment.
Patients also highlighted the impact of living with multiple
co-morbidities, concurring with a recent study [6] which
reported that up to 40% of rehospitalisations of elderly
people with heart failure are due to exacerbation of co-
morbidities. These two factors may explain why, although
heart failure symptoms may decrease and functional status
may improve with treatment, patient perception of quality of
life does not.
Some patients reported having little knowledge, and
sometimes motivation, to change their lifestyle and perform
self-care activity. Rehabilitation and substantial psychosocial
support for both patients and carers could be helpful. With a
better understanding of the illness and the ability to self-
manage, the focus could move to what patients can do, rather
than what they cannot. This reframing of the situation can be
facilitated by a skilled practitioner and help patients move
through the helpless stage into a more proactive stage, and an
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acceptance of the situation. This in turn, may help reduce
anxiety and depression and improve quality of life [32,33].
5. Conclusion
Living with heart failure is a complex, dynamic process for
both patients and carers. It involves multiple challenges
including coping with frightening symptoms and complex
medications, with depression and anxiety and a loss of role and
functional abilities. This can result in a poor quality of life.
Many patients reported low levels of understanding of their
condition and how to manage it. Patients have many needs that
could be met by more integrated health and social care,
education and self-management, rehabilitation and techniques
from chronic disease management. Many required better
psychological support. Carers also require support, having as
many unmet needs as those they are caring for and often feel
they carry all of the responsibility. These problems were made
worse by poverty and lack of social support. Help in accessing
welfare benefits, social services and respite care would be
appreciated in most cases.
Acknowledgments
We thank the interviewees; Aamra Darr who transcribed
and carried out interviews with 4 patients of South Asian
origin and their carers; the Research Advisory Group; and
Karen Spilsbury for commenting on the first draft of this
paper.
Competing interests: The BHF provided funding for the
larger study. This does not, however, represent a conflict of
interest for this paper.
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