PGCC Qualitative Approach Nursing Research & Patient Experiences Discussion

Description

Discussion

Your critique responses should reflect upon the following:

1. What type of qualitative approach did the researcher use? Provide a definition of the type of approach.

2. What type of sampling method did the researcher use? Is it appropriate for the study? Why or why not?

3. Discuss whether the data collection focused on human experiences.

4. How did the author address the protection of human subjects?

5. How did the researcher describe data saturation?

6. What procedure for collecting data did the researcher use?

7. Describe the strategies the researcher used to analyze the data.

8. How did the researcher address the following:

Credibility

Auditability

Fittingness

9.

What is your cosmic question?

(This is a question you ask your peers to respond to based on this week’s topic of Qualitative Research).

Discussion

1. Minimizing bias and decreasing threats to internal validity is important to experimental designs. How will a researcher use manipulation, randomization, and control to minimize bias and decrease threats to internal validity?

2. Many times, researchers state that randomized clinical trials (RCT) provide the strongest level of evidence for an individual study when using an evidence-based model.

As a consumer of research, do you think this statement is true? Why or why not?

3. When conducting an experimental design, how will the researcher use intervention fidelity to increase the strength and quality of the evidence provided by the findings of the study?

4.

What is your Cosmic Question?

(This is a question you will ask your peers to respond to based on the this week’s topic of Quantitative Research.)

Received: 27 August 2018
|
Revised: 16 November 2018
|
Accepted: 13 January 2019
DOI: 10.1111/jocn.14799
ORIGINAL ARTICLE
Patients’ experience with heart failure treatment and self‐
care—A qualitative study exploring the burden of treatment
Oda Karin Nordfonn1,4
| Ingvild Margreta Morken1,2 | Lars Edvin Bru1 |
Anne Marie Lunde Husebø1,3
1
Faculty of Health Sciences, University of
Stavanger, Stavanger, Norway
Abstract
2
Aims and objectives: To explore chronic heart failure patients’ perceptions of the
Department of Cardiology, Stavanger
University Hospital, Stavanger, Norway
3
Department of Gastroenterological
Surgery, Stavanger University Hospital,
Stavanger, Norway
4
Department of Health and Caring
Sciences, Western Norway University of
Applied Sciences, Stord, Norway
Correspondence
Oda Karin Nordfonn, Faculty of Health
Sciences, University of Stavanger, Stavanger,
Norway.
Email: oda.k.nordfonn@uis.no
burden related to treatment and self‐care.
Background: Living with chronic heart failure entails following a demanding treat‐
ment regimen, with daily self‐care, which could make patients vulnerable to experi‐
encing treatment burden. Burden of treatment is defined as the “work” the healthcare
system passes on to the patients with respect to self‐care at home, and the impact
this has on well‐being and quality of life. However, the burden of treatment is an
emergent framework, and further research exploring burden among heart failure pa‐
tients is required.
Design: Qualitative study employing semi‐structured interviews and content analy‐
sis. The study complied with the Consolidated Criteria for Reporting Qualitative
Research (COREQ).
Methods: A sample of 17 heart failure patients recruited from an outpatient clinic in
Norway. Interview transcripts were coded in Nvivo 11 and analysed using Malterud’s
systematic text condensation.
Results: Two main themes “emotional challenge” and “troublesome self‐care”
emerged from the analysis. The first theme contained the following subthemes: “a
new life situation,” “monitoring body signals,” “difficult transitions” and “feelings of
guilt.” The second theme consisted of the subthemes “poor care coordination,” “lack
of information and education” and “troublesome medication.”
Conclusion: Heart failure treatment constitutes challenges related both to self‐care
and to emotional burden. The latter not previously clearly articulated in the concept
of burden of treatment. Many patients are struggling emotionally, and this affects
their self‐care ability in addition to affecting their well‐being and quality of life.
Relevance to Clinical Practice: Nurses are in a strategic position to play a pivotal role
in identifying and responding to the emotional burden of treatment in heart failure
patients, furthermore to guide and support in discharge planning and in outpatient
setting to reduce the patients’ emotional distress and fear of failing.
1782
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© 2019 John Wiley & Sons Ltd
wileyonlinelibrary.com/journal/jocn
J Clin Nurs. 2019;28:1782–1793.
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NORDFONN et al.
1783
1 | I NTRO D U C TI O N
Chronic heart failure (HF) is a serious clinical public health problem
associated with significant mortality and morbidity; it affects at least
26 million people worldwide, and this number is increasing (Savarese
& Lund, 2017). Patients with HF have compromised physical health
because the heart is unable to meet the body’s metabolic needs
(Katz, 2015; Theander et al., 2014), which could cause a heavy symp‐
tom burden of dyspnoea, fatigue and fluid retention (Albert et al.,
2015). To reduce the incidence of HF symptoms and delay disease
progression, HF patients must follow a demanding medical treat‐
ment regimen (Ponikowski et al., 2016).
What does this paper contribute to the wider global clini‐
cal community?
• This paper is relevant to all health professionals who
care for patients with chronic heart failure in any clinical
context.
• It helps health professionals understand the experience
of the burden of treatment and self‐care from a patient’s
perspective.
• It may guide how health professionals approach the
therapeutic treatment regimen.
Twenty to 46% of HF patients display poor treatment adherence
behaviour (Riegel, Lee, & Dickson, 2011), which may exacerbate
their condition. Studies have revealed that HF patients perceive
between the treatment‐related workload placed on patients by
the demands of adhering to treatment regimens as onerous and
the healthcare system and the patient’s capacity for supplemen‐
difficult to meet, and some feel overwhelmed by the weight of self‐
tary self‐care (Eton et al., 2012). As healthcare services position
care (Wingham, Harding, Britten, & Dalal, 2014). In addition, fo‐
patients and their supporters as accountable for the management
cusing on poor compliance and barriers to self‐care in HF revealed
of chronic disease, patients may experience growing demands
that depression is a barrier to engaging in HF self‐care behaviours
to organise and coordinate their own care. This demand adds
(Kessing, Denollet, Widdershoven, & Kupper, 2016). These self‐care
the burden of treatment to the burden of illness and symptoms
tasks consist of weight monitoring, taking multiple medications,
(May et al., 2014). Eton et al.’s (2015) finalised BoT framework
symptom management and restrictions on physical activity and
encompassed three main themes: (a) Work patients must do to
diet (Kessing et al., 2016). Additionally, anxiety seems to contrib‐
care for their health; (b) challenges/stressors that exacerbate per‐
ute to inadequate self‐care (Müller‐Tash et al., 2017). Psychological
ceived burden; and (c) impacts of burden. Most current research
problems such as anxiety and depression are common among HF
tends to summarise BoT through six major dimensions: financial,
patients, with a prevalence of 40% for anxiety symptoms and up to
medication, administrative, lifestyle, health care and time/travel
30% for depressive symptoms (Moser et al., 2016).
(Demain et al., 2015; Sav et al., 2013, 2017). Other dimensions,
With respect to the demands of self‐care for patients with
chronic illness, there has been a growing recognition of the burden
such as emotional burden, are less agreed upon among experts
(Gallacher et al., 2013).
of treatment (BoT) (Gallacher, May, Montori, & Mair, 2011; May et al.,
Riegel, Dickson, and Faulkner (2016) defined self‐care in the con‐
2014; Sav, Salehi, Mair, & McMillan, 2017). BoT refers to the “work‐
text of HF as “a naturalistic decision‐making process that influences
load” assigned to long‐term ill patients by health professionals, and
actions that maintain psychologic stability, facilitate the perceptions
the impact this “work” has on well‐being and quality of life, which re‐
of symptoms, and direct the management of those symptoms” (p.
flects an imbalance between perceived workload and capacity (Eton
226). Furthermore, self‐care processes comprise adherence to
et al., 2015).
treatment and healthy behaviours, detection of symptoms and re‐
The BoT approach may contribute to the understanding of the
sponse to symptoms. The major challenges in HF self‐care are the
challenges of living with HF (Jani et al., 2013). However, there are
cognitive and behavioural demands of adhering to the treatment
factors of BoT that have yet to be explored from the patients’ per‐
regimen, as well as the burden of side effects from medication and
spective (Gallacher et al., 2011). Consequently, there is a need to
worry about the amount of medication one is required to take (Kraai,
provide qualitative insight into how HF patients experience BoT fol‐
Vermeulen, Hillege, & Jaarsma, 2018). In some healthcare systems,
lowing long‐term treatment for HF, with an emphasis on the related
the treatment trajectory may include patients having individualised
psychological factors. The study aims to increase understanding of
contact with nurse‐led HF outpatient clinics after hospitalisation or
BoT from the perspective of HF patients, which may inform the BoT
exacerbation, with the primary aim of optimising medical treatment
approach and improve HF health care.
(McDonagh et al., 2011).
In previous studies of BoT in HF, patients reported challenges
related to learning about new medications, understanding tests
2 | BAC KG RO U N D
and results, mobilising resources for practical help and adher‐
ing to lifestyle changes (Gallacher et al., 2011). Furthermore,
The burden of treatment (BoT) theory has been proposed as
patients struggle to develop a coherent understanding of their
a framework for understanding the interaction between the
condition and its appropriate management and are burdened
healthcare system, patients and patients’ relational networks
by problems of discontinuity and uncoordinated care (Jani et
(May et al., 2014). BoT is an approach emphasising the imbalance
al., 2013). HF management is complex, and transitions for HF
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TA B L E 1
NORDFONN et al.
Participant characteristics (n = 17)
the need to further address the patients’ experiences of psycholog‐
ical aspects of BoT.
Parameters
Mean age, years (range)
61.5 (46–74)
Sex
Male/Female (% male)
11/6 (65)
NYHA class (%)
This study aims to explore patients’ perceptions of the burden re‐
lated to treatment and self‐care in chronic HF by addressing the fol‐
II
10 (59)
III
7 (41)
Time since diagnosis, years (range)
2.1 | Aims and objectives
lowing research question: “How do heart failure patients experience
the burden of treatment?”
2.5 (0.5–7)
Aetiology (%)
3 | M E TH O DS
Myocardial infarction
3 (18)
Cardiomyopathy
7 (41)
Coronary artery disease
1 (6)
Hypertension
1 (6)
Tachycardia induced
1 (6)
Unspecified heart failure
2 (12)
Ventricular dysfunction
1 (6)
was used to explore HF patients’ experiences with treatment and
Mitral insufficiency
1 (6)
self‐care (Polit & Beck, 2012).
Asthma
1 (6)
COPD
2 (12)
3.2 | Setting
Diabetes type 2
3 (18)
Kidney failure
2 (12)
Atrial fibrillation
5 (29)
Arthritis
1 (6)
Systemic sclerosis
1 (6)
Ventricular arrhythmias
2 (12)
None
4 (23)
3.1 | Design
This study adopted a descriptive, explorative design and used indi‐
vidual semi‐structured interviews to gather data and adheres to the
COREQ guidelines for qualitative studies (Tong, Sainsbury, & Craig,
2007) (See Supporting information File S1). A qualitative approach
Comorbidities (%)
Device (%)
The research took place in one nurse‐led HF outpatient clinic at
a university hospital in Norway, where specialist HF nurses give
patients general check‐ups and adjust their medication in collabo‐
ration with a cardiologist. Patients are assigned to their own HF
nurse with whom they have regular appointments at fortnight, 1‐,
2‐ or 3‐month intervals. The goals of giving each patient a single
dedicated nurse for a period are to ensure patient education and
to adjust and optimise medication (McDonagh et al., 2011). Prior
to and between appointments, patients must follow their treat‐
ICD
8 (47)
ment regimen, register their weight and provide blood samples
CRT‐P
1 (6)
either at the hospital or at their local general practitioner’s (GP’s)
CRT‐D
4 (23)
office.
None
4 (23)
Note. COPD: chronic obstructive pulmonary disease; CRT‐D: cardiac re‐
synchronisation defibrillator; CRT‐P: cardiac resynchronisation therapy
pacemaker; ICD: implantable cardioverter–defibrillator; NYHA: New
York Heart Association.
3.3 | Sampling
Eligible patients were identified by screening the medical records
from the patient list at the nurse‐led HF outpatient clinic empha‐
sising the specialist nurses’ latest journal note and registered New
patients from one care setting to another require individual pro‐
York Heart Association (NYHA) class. The inclusion criteria were
grammes and interventions designed to span the entire care con‐
diagnosis of HF confirmed by echocardiography at least three
tinuum (Albert et al., 2015).
months prior and NYHA class II or III. Patients were not eligible
Given the potential of HF treatment and self‐care to be an im‐
if they were unable to speak Norwegian, were experiencing an
portant barometer of quality of care from the patients’ perspective,
acute crisis or exhibited cognitive impairment. The patients were
further qualitative research is needed to describe how HF treat‐
invited to participate either by a letter explaining the study or by a
ment and self‐care may generate issues of burden (Demain et al.,
invitation from the specialist nurse at the outpatient clinic. Forty‐
2015; Jani et al., 2013; Sav et al., 2017). In addition, it is less clear
nine patients were eligible for inclusion. Seventeen patients, 11
how the emotional aspects of HF patients’ “workload” relate to BoT
male and six female, agreed to participate and gave their writ‐
(Gallacher et al., 2011). Although research has been carried out to
ten consent (Table 1). The researcher then contacted the partici‐
determine the relations between HF self‐care and psychological fac‐
pants by telephone to arrange a convenient date and time for the
tors (Kessing et al., 2016), this focus reflects a knowledge gap and
interview.
|
NORDFONN et al.
TA B L E 2
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Interview schedule
Theme:
Main questions:
Supporting questions:
General introduction
Could you tell me about your health problems?
Daily management of
the disease
What do you have to do to take care of yourself and the
disease?
How do you monitor your symptoms?
Do you weight yourself on a weekly basis?
How do you cope in daily life with self‐management of
the disease?
How do you manage the disease in daily life?
What new skills have you learned to take care of
yourself?
When you think of all the things you have to do to take
care of yourself, how will you describe that it affects
you and your daily life?
Does it affect your work, social life, family life?
How much would you say handling the work you have to
do in relation to you disease, takes in your life?
Could you say something about how much time you spend
on taking, organizing and collecting medication, organize
and get to appointments and examinations?
Do you sometime feel that it is hard to do all these things
to take care of your health?
Could you say something about how much time you spend
on exercise and diet, based on advice from health
professionals?
Do you ever skip any of the things you should do?
Do you perceive that you follow the advices you get?
Relationship with
health professionals
Could you tell me about your relationship with different
health professionals?
How is communication? Do you have any examples?
Social support
In relation to your heart failure, do you get any help from
others?
Who helps you? How do they help you?
Does this ever cause any tension between yourself and
others?
Could you tell me something about how you and your next
of kin collect information, if there is somethings you
wonder about in relation to your disease?
Emotions
For some, the personal work they have to do in relation
to the disease is emotionally challenging. Is this
something you can relate to?
Is there something you do to keep you spirits up?
Burden of Treatment
Explanation of burden of treatment.
How do you experience self‐management of your
disease, thinking about this burden of treatment?
Can you in some way relate to it?
Are there other things that makes it difficult to live with
the disease?
Do you experience a continuity of care in relation to your
disease?
Capacity
If you picture a weight scale, on the one side, you have
your disease and on the other side, you have your
capacity to handle the disease, what do you think about
the relationship between them?
How do you perceive your capacity in daily life?
Ending
Is there something important you want to add?
3.4 | Data collection
3.5 | Ethical considerations
Data were collected via semi‐structured audiotaped interviews
Ethical permission to perform the study was obtained from the
conducted during May–August 2017 by the first author in the par‐
Norwegian Regional Committee for Medical and Health Research
ticipants’ home or in the hospital setting. The interviews lasted
Ethics (REK no. 2017/75). Verbal and written consent were obtained
30–90 min, mean time 55 min, and featured a series of open‐ended
prior to all interviews, and the informants were guaranteed anonym‐
questions (Table 2). The question routes were developed based on
ity and the right to withdraw from the study before the analysis.
findings from prior studies of treatment burden and treatment im‐
Transcripts were made and anonymised. The audio recordings were
pact (Eton et al., 2012; May et al., 2014; Sav et al., 2017). The first
available only to the first author, and the anonymised transcripts
and last authors inspected and refined the questions and organised
were available only to the authors.
them into a logical flow from a broad to a specific focus. During the
During the interviews, six of the participants became emo‐
course of the interview study, several questions were modified (e.g.,
tionally upset whilst talking about some of the themes pertaining
the wording was simplified) or added to clarify important content
to their illness and self‐care. When this happened, the interview
arising in the earlier interviews (Malterud, 2017).
was paused for the participants to collect themselves and then
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NORDFONN et al.
resumed with the participants’ permission. The participants were
given the opportunity to take a break or reschedule the interview,
3.7 | Rigour
and the interviewer was sensitive to their emotions. All partici‐
To ensure the rigour of the data collection process, all interviews
pants completed the interviews. In all interviews, the participants
were conducted using a semi‐structured interview guide (Table 2).
were given contact information to the ward staff at the outpatient
The same interviewer (OKN) conducted all the interviews, ensur‐
clinic if the interview caused distress or if they felt the need for
ing their authenticity through prolonged engagement and to en‐
further conversation.
sure data saturation (Malterud, Siersma, & Guassora, 2016). Three
of the authors (OKN, IMM, and AMLH) were involved in all steps of
3.6 | Data analysis
the data analysis, independently reread the interviews, discussed
the findings and carried out validation of codes and refinement of
The audiotapes were transcribed verbatim by the first author. After
categories. All of the researchers were experienced nurses with
being checked for accuracy by comparison with the audio record‐
specialties in cardiology, geriatrics or general medicine. To ensure
ings, the transcripts were stored in the computer software program
reflexivity, repeated review of the transcripts and the use of a
NVivo 11 (QRS International Pty. Ltd.). NVivo 11 was used for data
diary assisted the researchers in their analysis. The diaries enabled
management and to enable a more systematic analytical approach.
the researchers to balance their own perspective and experience
Data analysis was carried out using systematic text condensation
with those of the participants. In addition, the research diaries
(STC) (Malterud, 2012; Malterud, 2017). STC consists of 4 phases
guided the analysis, relying not only on the rationale underpinning
of analysis. In phase 1, the primary goal is to obtain an overview and
the research, but also on the actual course of the research process
identify preliminary themes. In phase 2, themes and subthemes are
(Berger, 2015).
generated based on preliminary themes, and in phase 3, the partici‐
Sandelowski and Barroso (2002) refer to reflexivity as the hall‐
pants’ quotations, as meaning units, are organised in a hierarchical
mark of excellence. It requires researchers to have the capability and
thematic structure and condensed. Phase 4 involves synthesising
the will to acknowledge and to take account of the ways in which
the more nuanced themes identified in phases 2 and 3, resulting in
they influence their findings. In addition, peer checking was used
the main themes (see Table 3). Participants’ quotes were carefully
to increase reliability; two experienced qualitative researchers re‐
translated from Norwegian to English by a researcher proficient in
viewed the transcripts in an attempt to mediate bias (Lincoln & Guba,
both languages. The primary goals of the translation were to safe‐
1985; Rolfe, 2006). Findings were also presented and discussed with
guard the meaning content of the quote and to preserve the pa‐
research experts during a BoT expert meeting (Houghton, Casey,
tient’s voice.
Shaw, & Murphy, 2013). Despite criticism that this methodology
TA B L E 3
Themes and subthemes
Meaning units (a sample)
Subthemes
Themes
The life I have now is not something anyone wants. Having heart failure is a
job in itself. It’s like being on call all the time. When did I last take my
medication? Counting hours and pills
A new life situation
Emotional challenges
What happened when I got heart failure was overwhelming, so to speak. The
head couldn’t keep up with what happened in the body
Monitoring body signals
I felt I was kicked out of the hospital and then, when I got home I felt like:
“okay, what happens now?” Suddenly you start checking and monitoring
your own body. I didn’t have anyone else monitoring me any longer, except
the device inside me. I am aware of my body all the time. I lie in my bed and
monitor my own body. I might get a sting on the left side and get frightened:
“what was that?” I have been walking around; feeling this, thinking it was the
heart making this pain. You feel those stings and it upsets you
Difficult transitions
I struggled a lot with bad conscience because of my complaints on the
medications to the nurse
Feelings of guilt
From the beginning of this, I feel like it’s something missing. There should be
a connecting thread throughout the treatment where you preferably are
assigned to the same doctor. Now it feels very random whom you meet
Poor care coordination
I’ve been thinking “what is arterial fibrillation,” but I know it is something with
the hearts rhythm. However, what is heart failure? I have not come so far
that I have asked
Lack of information and
education
I started the beta‐blockers one or two years ago. That really made me feel
physically reduced. I couldn’t bear to do any practical tasks in the garden or
anything. Everything was just an effort
Troublesome medication
Troublesome self‐care
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NORDFONN et al.
1787
could be too superficial (Giacomini & Cook, 2000), consensus was
who they were before the diagnosis and what they had become, as
reached on the emerging themes.
challenging.
To ensure credibility, a clear and precise description of the
context, the selection and characteristics of the participants, the
There are certain things that the disease brings with
collection of the data and the analytical process were provided.
it. I cannot handle as much as I did before. Many times
Direct quotations are provided in the Results section to confirm
I get confused and then I forget my pills and other
the established themes and subthemes (Table 3) (Polit & Beck,
things I’m supposed to do. Especially in the evenings.
2012).
I try to be thorough, taking my pills at the right time,
but I don’t have the capacity to do everything. I was
4 | R E S U LT S
not like that before. Then, I was a completely different
person. In all aspects.
(P 13, NYHA III)
In the analysis of the data, initial themes were defined in a concep‐
The HF treatment occupied the participants’ minds and time and
tual and abstract manner. The two broad themes “emotional chal‐
was experienced as all‐consuming. The patients stated that the new
lenges” and “troublesome self‐care” emerged from the analysis, and
limitations in their lives were emotionally difficult and described a “be‐
each theme had corresponding subthemes.
fore and after experience” of what they used to be able to do and how
their energy now had to be allocated carefully. A low capacity to carry
4.1 | Theme 1: Emotional challenges
out life tasks, little energy for spending time with friends and family,
and the need to slow down were their major concerns.
The first main theme addresses the experiences participants de‐
scribed as “emotional challenges” and encompasses four subthemes:
Due to my illness, there are so many things I can’t
“a new life situation,” “monitoring body signals,” “difficult transitions”
be a part of anymore. I can’t do so many things at a
and “feelings of guilt.” These themes represent the major trials ex‐
time, and I need plenty of time to do everything. If I
perienced by the patients as part of the overall emotional challenge
am stressed, then I deteriorate. I know that very well.
of HF self‐care.
I can’t take so much. There are some heavy weeks
when I have to go to the hospital for blood sample
4.1.1 | Subtheme 1.1: A new life situation
two days before my appointment at the outpatient
clinic, and then I have to go back to the hospital seven
When the participants were asked about the burden of living with
days later for another blood sample. All related to my
HF, the majority of the patients commented on the sudden shift in
heart failure. Those are heavy weeks. ( P 14, NYHA III)
their life situation due to the new diagnosis and new tasks. This swift
change had a major influence on their emotions and was described
Several patients expressed that the new limitations in their lives
as a black and white experience, an unexpected change that trans‐
and their reduced capacity also affected their self‐care ability. The
formed life completely.
treatment regimen was experienced as overwhelming and exhausting
and difficult to obtain a coherent understanding of. One patient de‐
I mean, life has changed. Therefore, it affects me. As
scribed how his mood was affected when he did not succeed in adher‐
a person, I had a lot of energy before, both at home
ing to his medication regimen.
and at work. I thought that working 37,5 hours a week
meant working every second of that time. Bringing
The treatment regimen is so complex I cannot figure it
work home with me. Everything else in the house also
all out myself. I do not have the energy or the ability to
had to be shipshape. Life used to be like a circus, but
manage it all. Your mood certainly changes when you
I can’t do that anymore. Life has turned into… I go to
realize you have forgotten a medicine that you know
bed at 9 pm, to read, to calm down. Now, I prioritize
has consequences. It is certain you get both bitter and
doctor visits over everything and visits at the outpa‐
withdrawn. At least it has something to do with your
tient clinic absolutely over everything. (P 4, NYHA II)
mood. It is like that, mood swings and such.
(P 6,
NYHA II)
This life change, several of them expressed, caused them to
confront whether they could cope with the new severity of their
condition and their new self‐care tasks. The practical tasks them‐
selves were not the most serious challenge, but grappling with the
4.1.2 | Subtheme 1.2: Monitoring body signals
change from being a healthy person to being a severely ill person
Several patients also said that suddenly facing a severe illness like
was emotionally challenging. Several patients reported their new
HF and its treatments gave them a new awareness of their body.
limitations and the need to adapt, as well as the difference between
Previously, they had paid little attention to monitoring insignificant
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NORDFONN et al.
pain and did not take much notice of their own bodies; they now
You’re afraid. You think. You think all the time. You
expressed an immediate sense of unfamiliarity with their bodies.
know you have a bad heart, working a bit over 20%,
Some participants experienced it as a new task of monitoring and
and it can just stop anytime. You get, normally you get
interpreting signals and pain in the body and judging their severity.
scared and think all sorts of things.
(P 5, NYHA III)
I felt I was kicked out of the hospital and then, when
Some patients described the hospital as a place where they felt
I got home I felt like: ‘okay, what happens now?’
safe and that the home domain felt unsafe. They mentioned that
Suddenly you start checking and monitoring your
they were not prepared for the transition and struggled with it.
own body. I didn’t have anyone else monitoring me
Some patients said that they felt overwhelmed and insecure and
any longer, except the device inside me. I am aware
described feelings of anxiety and stress upon being discharged
of my body all the time. I lie in my bed and monitor
from the hospital without any supervision to help them self‐mon‐
my own body. I might get a sting on the left side and
itor their health condition. The administration of medication per‐
get frightened: ‘what was that?’ I have been walking
formed after returning home from the hospital created fear and
around; feeling this, thinking it was the heart making
discomfort. Several of the patients expressed their new responsi‐
this pain. You feel those stings and it upsets you. (P 9,
bility of monitoring during medication administration as stressful,
NYHA II)
scary and spooky.
Time spent on appraising and judging on the signs and signals from
Currently, they’re up titrating my medication, lower‐
their “new” body was emotionally distressing, as they were aware of
ing my blood pressure. I’ve tried that once before and
the severity of the disease. Learning their new limits and how much
that didn’t go so well. I nearly fainted then and that
they could tolerate made participants feel oppressed. The feeling of
made me feel tired and scared. I mean, these things
weakness and of no longer trusting their physical strength was novel.
should be done when they can monitor you, so to
speak, not at home where there is no surveillance.
You do things more carefully or lift more carefully
Now you just have to try to sense your own body and
than you used to. Previously, you didn’t watch out so
that is spooky. I wish they could do these medication
much, lived normally, but now you have to watch out.
adjustments under controlled circumstances.

NYHA II)
(P 15, NYHA II)
(P 9,
Moreover, this new awareness required focus, reducing the partic‐
Several participants reported feeling like a burden to their fam‐
ipants’ ability to manage all their treatment tasks and thereby making
ily because of the disease and the new demands of self‐care. For
it difficult to lead a balanced life. Their new body signals also made the
many of the patients, the consequence of feeling like a burden was
patients change their behaviour, preventing them from living as they
withdrawal and loneliness. Several patients also shared that life at
wanted to and causing them to feel limited in daily life. To accept their
home was associated with a feeling of loneliness in being severely
new physical condition was described as an emotional effort.
ill. Patients experienced being surrounded by people but at the same
time being alone both with their thoughts, feelings and the serious‐
It upsets me that I get so short of breath, that I al‐
ness of their new reality.
ways have to breathe and pant just from climbing the
stairs on the ferry or bending down, tying my shoes,
I think one realizes that one is in it alone. There is
or whatever. So it upsets me, because I don’t want to
a kind of loneliness in being severely ill. This place
be like that.
[the disease] is like a hole where you are alone,
(P 10, NYHA II)
where you have to work to stay on your own. (P 4,
NYHA II)
4.1.3 | Subtheme 1.3: Difficult transitions
Nine of the 17 patients described their new experiences related to
self‐care in the transition to patienthood at home as emotionally
4.1.4 | Subtheme 1.4: Feelings of guilt
challenging. The transition from hospital to home and the sud‐
In all of the interviews, the informants expressed that the illness
den need to manage what they knew to be a severe diagnosis and
and its treatment created feelings of guilt. Some patients described
treatment on their own created emotional pressure. Leaving what
struggling with feelings of guilt towards their family because of the
they perceived as a safe and controlled situation at the hospital
rupture they experienced in what they could achieve as a family. The
and entering a new home situation made them feel scared and
patients reported feeling like a limitation to everyone around them
lonely.
because they needed extra attention.
|
NORDFONN et al.
I often feel like I’m a burden. “Be careful, we’ll come
would have been much easier. Now it is on the 15th,
home and look after you”. So I feel like I’m a burden to
you go to the heart failure clinic, on the 17th you go
the family right now.
to the cardiologist and on the 19th, you go to the ICD
(P 9, NYHA II)
1789
check‐up. I really would like some coordination and
In addition, some participants expressed feelings of guilt towards
cooperation.
(P 9, NYHA class II)
the health system because they complained or were a challenging or
demanding patient. Some described being surprised when they were
If there had been a coordinating person who had re‐
consistently met with kindness from health professionals despite what
sponsibility for me, okay. It should have been much
they considered to be their complaining. Altogether, the majority of the
less, a platform, for most things. As of now, it is too
informants expressed generally feeling guilt for not doing enough, not
much.
(P 5, NYHA III)
exercising enough, not losing weight and not being careful enough with
respect to their diet.
Several patients considered their GP to be a “generalist” and chose
not to involve him or her. Others saw their GP as a resource but not the
I have gained some weight during the last years and
specialist they relied on the most. Considering the severity of the dis‐
some time ago, I suddenly realised that, oh my, it was
ease, several patients expressed the need for someone with knowledge
as much as 10 kg. I know I probably should do more,
and education specific to their illness. A consistent long‐term relation‐
exercise more and move a bit more when I’m at home.
ship with a cardiology specialist was required to make the participants

feel safe. Some patients spoke of the frustration of being left alone,
(P2, NYHA II)
with no one taking care of them individually in a structured manner.
4.2 | Theme 2: Troublesome self‐care
I rarely see my GP nowadays; he is sort of phased out.
I’m not much at his office. What makes me wonder is
The second main theme, “troublesome self‐care,” contains three
that at the outpatient clinic, I’ve had the same nurse,
subthemes, namely, “poor care coordination,” “lack of information
and she is consulting with a doctor. That doctor is al‐
and education” and “troublesome medication,” illustrating the major
ways different. Like, every time I have my pacemaker
challenges in making sense of self‐care. All patients expressed their
check‐ups and talk to the doctor, it’s always a new
gratitude for having a high‐quality healthcare system, but they re‐
one. I can’t remember ever seeing the same doctor
quired a greater focus on the coordination of their treatment trajec‐
twice. I wish I had; that would have felt much safer.
tory. Some felt that they had been left to their own devices with

(P 15, NYHA II)
respect to care coordination, information and treatment and felt
overwhelmed by the prospect of shouldering the responsibility for
self‐care and coordination themselves.
A few patients talked about meeting with cardiologists who had
not bothered to read their whole case file because of its size, which
made the patients feel less important and unattended to.
4.2.1 | Subtheme 2.1: Poor care coordination
It was very depressing because every time I came for
Several patients experienced disruption and fragmentation of their
my check‐up there was a new doctor and they started
care after being discharged from the hospital. Most patients felt
reading about my case when I was sitting there. To
overwhelmed by their new life situation, describing the new self‐
me, my case is the most important in the world, but
care tasks and the need to coordinate their own care as emotionally
for them I was just today’s patient.
(P5, NYHA III)
challenging. Some expressed the need for a care coordinator who
understood the complex treatment regimen and the appointment
Because of the randomness governing which cardiologist they met
schedule and called for someone in charge to oversee the whole
with, the patients were not certain that they were receiving the best
regimen, whereas at present, they were simply being referred from
treatment or whether there were better options that had not been
one specialist to another.
tried. However, the specialist nurse at the outpatient clinic was de‐
scribed by all the patients as an important resource in their treatment.
I think it is too much with all the medical appoint‐
ments. You have the heart failure clinic, the cardiolo‐
gist and the ICD check‐up. All these three are located
at the hospital, so I don’t understand why they don’t
4.2.2 | Subtheme 2.2: Lack of
information and education
cooperate. I asked when I was hospitalized if they
Thirteen of the 17 patients said they lacked knowledge and informa‐
could cooperate so that for example on the 15th of
tion related to their disease, treatment and self‐care. Quite a few
August, I would go the hospital for the cardiologist,
patients talked about HF as a disease they had no or only superficial
the heart failure clinic and the ICD check‐up. That
knowledge of, as expressed by this patient:
1790
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NORDFONN et al.
To be honest, I don’t know what heart failure is, but I
Gallacher et al., 2011), providing an approach to and a framework for
trust you when you tell me I’ve had it. As I said, I don’t
understanding patients’ experience with long‐term illness.
know so much about heart failure.
(P 7, NYHA II)
In addition, the majority of the patients stated that the primary
5.1 | Emotional challenges
focus of the healthcare professionals in the nurse‐led clinics was ad‐
All the patients in our study reported challenges associated with
justing medications based on blood test results. Most of the partic‐
emotional distress. Most participants experienced their new life
ipants requested more knowledge related to diet, exercise and the
situation, monitoring body signals and difficult transitions and guilt
illness in general. The superficiality of their knowledge made patients
as emotionally demanding, adding to the burden of self‐care and
feel incompetent to perform self‐care, leaving them insecure and un‐
treatment. The majority of patients described their new life situation
able to manage the disease.
with an HF diagnosis and treatment as an emotional challenge. In
the BoT approach, emotional burden is rarely described, and the ele‐
4.2.3 | Subtheme 2.3: Troublesome medication
ments of an emotional dimension have not yet been clearly specified
(Gallacher et al., 2013). Arguably, in the BoT concept, the emotional
The majority of patients reported struggling with medication in gen‐
dimension of the workload must be separated from the emotional
eral. Specifically, their medication regimen was enormous, creating
challenges of living with HF. On the other hand, there might be a
a major challenge for the daily administration of medication and re‐
relationship between the emotional dimension of BoT in HF patients
membering what medications to take at what time. In addition, many
and illness and symptom burden, making it difficult to separate these
experienced troublesome side effects from their medications.
burden dimensions. Tran, Barnes, Montori, Falissard, and Ravaud
(2015) suggest a taxonomy of BoT relating the emotional impact of
I have struggled and do still struggle terribly with the
treatment to several factors, including patients’ experience of a de‐
medication. Side effects of the medication. Oh, outra‐
creased ability to perform daily life activities, feelings of guilt for
geously. I feel nauseous and unwell.
not adhering to prescriptions and recommendations and the nega‐
(P 3, NYHA II)
tive emotional impact on their lives due to their treatment reminding
Several participants described the use of diuretics as a major chal‐
them of their chronic incurable condition (Tran et al., 2015). Sav et
lenge due to the immediate need for toilet facilities and struggled to
al. (2015) emphasise the psychosocial aspects of BoT, including guilt,
manage this aspect of treatment alongside other daily activities and
hopelessness and fear, as constituting a subjective burden associ‐
work obligations. Others noted dizziness and pain as troublesome side
ated with an increasing level of burden. Eton et al. (2015) described
effects related to medication.
chronically ill patients feeling overwhelmed by their treatment and
expressing a sense of physical and mental exhaustion related to self‐
They’ve kept on working with these medications and
care. This report aligns with our findings that patients experience
this kind of stuff and tried this Carvedilol, and then
the treatment regimen as emotionally demanding and self‐care tasks
increased it. Then I get such low blood pressure and
as challenging to perform. Moreover, these findings suggest that for
dizziness, just like being on a sailboat. You get really
patients to cope with their new life situation, the emotional chal‐
dizzy, tired and scared.
lenges faced by the patients need adequate attention from health
(P 15, NYHA II)
professionals. Thus, as the emotional element is only vaguely men‐
One informant clearly felt that beta‐blockers were a challenge,
tioned in the current BoT approach, our study may contribute with a
identifying himself as just “half a man” when taking this medication and
description of what could be developed into an emotional dimension.
making efforts to get off of it. However, there were also informants
In the current study, the participants especially noted that ad‐
who reported successes and improvements in ejection fraction (EF)
ministering medication at home was emotionally demanding. HF
and who felt a sense of wellness related to well‐adjusted medication.
patients receive services and follow therapeutic regimens targeting
conditions that cannot be cured but must instead be managed, both
5 | D I S CU S S I O N
to cure episodes of acute illness and manage the lifetime illness tra‐
jectory (May et al., 2014). Identification of an emotional dimension
of HF treatment burden might indicate the need for more patient‐
The purpose of this study was to explore how HF patients perceive
centred and holistic care in the healthcare system (May, Montori,
the burden related to treatment and self‐care. Participants experi‐
& Mair, 2009), and sufficient attention should be paid to what pa‐
enced BoT in a number of dimensions; they experienced self‐care
tients perceive as their most demanding task. We argue that pa‐
challenges due to a lack of information and education, poor care
tients’ emotions of fear and stress from loss of capacity and living
coordination and troublesome medication and emotional chal‐
with uncertainty might be an important part of the treatment burden
lenges due to the overwhelming nature of their new life situation.
experience. Further research should be conducted to establish the
HF treatment requires a considerable amount of work from patients,
place of these emotions in the BoT framework. Anxiety and depres‐
as already depicted in numerous studies (Eton et al., 2012, 2015;
sion related to the demands of HF self‐care are well recognised and
|
NORDFONN et al.
1791
have been well researched (Kessing et al., 2016). Similarly, previous
systems (Shulman‐Green, Jaser, Park, & Whittemore, 2016). This gap
findings of an association between adherence to treatment and
suggests that, to reduce patients’ BoT, more efficient management
self‐care and psychological distress suggest that increased levels of
of chronic conditions needs to be emphasised. Gallacher et al. (2013)
anxiety and depression reduce a patient’s self‐care ability (Moser
note precedents for HF management in so‐called one‐stop HF ser‐
et al., 2016; Müller‐Tash et al., 2017). This study proposes that the
vices that allow patients to go to the hospital for a comprehensive
emotional burden is an important aspect of living with HF in terms
assessment involving blood tests, electrocardiogram, echocardio‐
of patients’ adherence, well‐being and quality of life. However, more
gram and access to a consultant cardiologist. According to Albert
research is required concerning emotional burden, distress, anxi‐
(2016), there might be a connection between the continuum of care
ety, depression and how these elements are connected to the BoT
and adherence to treatment and reduced re‐hospitalisation rates in
approach.
HF patients.
Support from health professionals may improve patients’ capac‐
5.2 | Troublesome self‐care
ity for self‐care and ability to carry the treatment burden. Moreover,
to promote self‐care knowledge and engagement and increase qual‐
The findings of our study suggest that HF patients experience sev‐
ity of life following hospital discharge, HF patients and caregivers
eral aspects of treatment and self‐care as troublesome. Several par‐
should be provided with coordinated medical care, individualised pa‐
ticipants in our study reported lacking knowledge about the disease,
tient education and medication reconciliation (Albert, 2016). More
its symptoms and HF self‐care. A lack of information and education
research on how therapeutic relationships and care continuity may
may reduce patients’ capacity for self‐care, leaving them in a state
affect HF patients’ adherence to treatment and strengthen their ca‐
of confusion concerning when to act and contact healthcare profes‐
pacity for self‐care is therefore required.
sionals (Holden, 2015). Based on this finding, the healthcare system
should make a greater effort to provide patients with support on
several levels, such as informational and emotional support. Prior re‐
5.3 | Limitations
sults highlighted travel to and from hospitals and doctors and costs
This study has several limitations. The sample was drawn from a HF
related to treatment as major concerns (Eton et al., 2015), but these
population managed by specialist HF nurses at an outpatient clinic;
were not among the major burdens reported by our participants.
thus, the participants are likely to have received more specialised
These tasks were seen as minor issues in everyday life and as rela‐
care and may have less BoT. In addition, the patients who declined
tively easy to manage. One explanation for this discrepancy might
to participate did so because they felt overwhelmed and that they
be that the participants in this study experienced only minor eco‐
had too much on their plate. As a result, the most burdened patients
nomic burdens due to the reimbursement of healthcare costs in the
may be more prevalent in both the wider population and among
Norwegian healthcare system.
those not reached. However, the sample size was large, generating a
However, several participants in our study expressed frustrations
rich description of the subjects’ BoT (Malterud et al., 2016). The re‐
about the randomness and lack of continuity with regard to medical
searchers endeavoured to be as responsive and rigorous as possible
appointments and a struggle to coordinate their care. Although the
with respect to the informants’ narratives throughout the research
participants experienced the specialist nurse as a notable asset that
process. Consequently, the researchers aimed at trustworthiness,
promoted feelings of security, in terms of managing the illness and
a guarantee of validity in qualitative research (Polit & Beck, 2012).
its treatments, they felt abandoned by what they saw as uncoordi‐
However, the analytical process might have been made more rigor‐
nated care service. This aligns with earlier research describing that
ous by member checking of transcripts. According to Lincoln and
attending multiple healthcare providers who are not connected or
Guba (1985), member checking is a good means of ensuring credibil‐
communicating with each other sufficiently may be burdensome
ity in qualitative research. Nevertheless, it is also possible to improve
to patients (Albert et al., 2015). Despite the fact that the specialist
the credibility of data interpretations by use of reflexivity and peer
nurse was viewed as a resource, the patients regarded the cardiol‐
checking, as was done in this study (Graneheim & Lundman, 2004;
ogists as the true experts on HF. Thus, it was crucial to the patients
Lincoln & Guba, 1985).
to see the same cardiologist on a regular basis to feel reassured that
they were receiving the best treatment and that they had the best
chance to survive given their severe illness. Our findings might in‐
6 | CO N C LU S I O N
dicate that HF care as experienced by these patients remains frag‐
mented and that self‐care support programmes might not be fully
HF requires the patients to engage in a lifelong, demanding medical
integrated into primary care. This result corresponds with similar
treatment regimen. This study aimed to investigate HF patients’ bur‐
findings reported by Gallacher et al. (2013); in their study, patients
den related to the treatment and self‐care of the disease. According
reported a lack of continuity, making it difficult to develop an effec‐
to our study, HF patients experience treatment and self‐care as trou‐
tive therapeutic relationship. Although industrialised countries have
blesome and emotional challenging in terms of a lack of information
made considerable efforts to improve the management of chronic
and education, poor care coordination and troublesome medication
illness, chronic illness care remains a major challenge to healthcare
and self‐monitoring of symptoms.
1792
|
The study provides increased understanding of BoT from
the perspective of HF patients, which may inform BoT theory
and improve HF health care. It especially offers new insight into
the emotional challenges of HF self‐care, which were not pre‐
viously well articulated in BoT research. The challenge of a new
NORDFONN et al.
ORCID
Oda Karin Nordfonn
https://orcid.org/0000-0002-7613-2689
Anne Marie Lunde Husebø
https://orcid.
org/0000-0002-7476-851X
life situation, monitoring body signals, difficult transitions and
feelings of guilt are all part of the emotional burden of treat‐
ment and may be summed up as “fear of failing as a HF patient.”
This adds to the understanding of the emotional dimension of
BoT in HF management. Based on the results of this study, we
claim that more research focusing on the emotional burden of
treatment and self‐care in HF patients is required to implement
evidence‐based care. Such research is necessary to challenge
specialist and primary healthcare services to provide HF pa‐
tients with coordinated care that focuses on the emotional de‐
mands of treatment and self‐care as well as on practical and
organisational burdens.
7 | R E LE VA N C E TO C LI N I C A L PR AC TI C E
Nurses are continuously in contact with HF patients and, impor‐
tantly, are therefore in a strategic position to play a pivotal role
in identifying and responding to the burden of treatment in HF.
Moreover, they are also highly trusted professionals and an impor‐
tant link between patients and specialist healthcare cardiologists. In
order to strengthen HF outpatients’ ability to self‐care, it is essen‐
tial that nurses recognise the emotional aspect of the BoT and apply
measures such as guidance and knowledge support in discharge
planning and in the outpatient clinic setting to reduce their patients’
emotional distress and fear of failing.
Our study has identified aspects of BoT related to HF self‐care,
which may provide health professionals, service providers, policy‐
makers and health study educators with important insight into the
common challenges faced by patients living with HF. This study may
also provide options to improve the health and well‐being of this
particular patient group.
AC K N OW L E D G E M E N T S
The authors are very thankful to the participants, for their contribu‐
tions to this study.
C O N FL I C T O F I N T E R E S T
All authors declare no conflict of interest.
CONTRIBUTIONS
OKN contributed to all aspects of this study. AMLH and IMM
contributed and assisted with the data analysis. AMLH, IMM
and LEB contributed to the manuscript preparation and final
revisions.
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S U P P O R T I N G I N FO R M AT I O N
Additional supporting information may be found online in the
Supporting Information section at the end of the article.
How to cite this article: Nordfonn OK, Morken IM, Bru LE,
Husebø AML. Patients’ experience with heart failure treatment
and self‐care—A qualitative study exploring the burden of
treatment. J Clin Nurs. 2019;28:1782–1793. https://doi.
org/10.1111/jocn.14799

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