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A Systematic Review of Patient Heart

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Journal of Cardiovascular Nursing

Vol. 00, No. 0, pp 00Y00 x Copyright B 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins

A Systematic Review of Patient Heart Failure

Self-care Strategies
Karen Harkness, PhD, RN, CCN(C); Melisa A. Spaling, MEd; Kay Currie, PhD, RN;
Patricia H. Strachan, PhD, RN; Alexander M. Clark, PhD, RN
Background: Self-care is at the foundation for living with a chronic condition such as heart failure (HF). Patients with
HF express difficulty with translating self-care knowledge into understanding how to engage in these activities and
behaviors. Understanding the strategies that patients develop to engage in self-care will help healthcare providers (HCPs)
improve support for unmet self-care needs of HF patients. The purpose of this systematic review was to highlight
strategies that HF patients use to accommodate self-care recommendations into the reality of their daily lives.
Methods: A systematic review using qualitative meta-synthesis was carried out. Included studies had to contain a
qualitative component and data pertaining to self-care of HF from adults older than 18 years and be published as full
papers/theses beginning 1995. Ten databases were searched until March 19, 2012. Results: Of 1421 papers
identified by the search, 47 were included. Studies involved the following: 1377 patients, 45% women, mean
age of 67 years (range, 25Y98 years), 145 caregivers, and 15 HCPs. Approaches to self-care reflected both
perception- and action-based strategies and were a means to effectively manage HF. Although HF patients often
expressed difficulty on how to integrate self-care recommendations into their daily lives, they developed
intentional, planned strategies that harnessed previous experiences. Conclusions: Healthcare providers must
appreciate that patients view self-care as an adaptation that they undertake to maintain their independence and
quality of life. In addition, HCPs must recognize that because self-care is a process of learning over time from
experience, an individualized approach that emphasizes how to self-care must be adopted for patients to develop
the necessary HF self-care skills.
KEY WORDS:

heart failure, meta-synthesis, self-care

Karen Harkness, PhD, RN, CCN(C)

Clinician Scientist, School of Nursing, Heart Function Clinic,
McMaster University, and Hamilton Health Sciences, Hamilton,
Ontario, Canada.

Melisa A. Spaling, MEd

Research Assistant, Faculty of Nursing, University of Alberta,
Edmonton, Alberta, Canada.

Kay Currie, PhD, RN

Reader, School of Health & Life Sciences, Glasgow Caledonian
University, Scotland, United Kingdom.

Patricia H. Strachan, PhD, RN

Associate Professor, School of Nursing, McMaster University,
Hamilton, Ontario, Canada.

Alexander M. Clark, PhD, RN

Professor, Faculty of Nursing, University of Alberta, Edmonton,
Alberta, Canada.
Dr Harkness is supported by a Research Early Career Award with the
Hamilton Health Sciences, Ontario, Canada.
This study was funded by the Canadian Institutes of Health
Research-Knowledge Synthesis Grant 2010.
Supplemental digital content is available for this article. Direct URL
citations appear in the printed text and are provided in the HTML
and PDF versions of this article on the journals Web site
(www.jcnjournal.com).

Correspondence
Alexander M. Clark, PhD, RN, Level 3, Edmonton Clinic Health
Academy, 11405 87 Avenue, Edmonton, AB, Canada T6G 1C9
(alex.clark@ualberta.ca).
DOI: 10.1097/JCN.0000000000000118

Background
What strategies do patients use to self-care for heart
failure (HF)? Although this self-care should be focused
around particular types of tasks or domains (including
weight monitoring, taking multiple medications, symptom management, physical activity, smoking cessation,
and diet restriction), self-care is also recognized to be
a complex process. For example, a common approach
conceives self-care in HF as the decisions and strategies undertaken by the individual in order to maintain
life, healthy functioning, and well being.1(p364) In this
context, HF self-care can be conceptualized not only
as an outcome that can be measured2,3 but also as a
complex naturalistic process.4Y7 This is corroborated
by the recent American Heart Association Scientific
Statement which views HF self-care in terms of naturalistic decision-making to emphasize that self-care is
a process, undertaken in the real-world setting, influenced by individual, contextual, and situational factors.8
Understanding strategies that patients use to engage
in self-care recommendations is important because this
syndrome causes widespread and avoidable personal suffering and contributes to unsustainably high healthcare
1

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2 Journal of Cardiovascular Nursing x Month 2014

costs.9 Heart failure is associated with high mortality,
frequent hospitalizations, and an economic strain on
the healthcare system.9 Heart failure is extremely common as it affects a large and growing proportion of the
ageing population in high-income countries.10 In the
United States, approximately 5.7 million people have
HF, with more than 500 000 newly diagnosed cases
each year.10 Furthermore, HF also places a heavy financial burden on the healthcare system and is one of the
most costly chronic conditions in developed countries.9
It is estimated that the cost of HF consumes between
1.1% and 1.9% of total healthcare spending in developed countries, with 50% to 74% of the HF costs attributed to hospitalization or long-term institutional care.9
Strategies to improve clinical outcomes and decrease
the burden of HF are clearly needed.
Consensus guidelines for the treatment of patients
with HF from North America and Europe state that
self-care is a key component of daily HF management.11Y13
However, despite this importance, most patients have
difficulties with engaging in the necessary activities recommended in the clinical guidelines. Current evidence
has identified various personal, psychosocial, and contextual factors that influence self-care8,14Y19; however,
the strategies that patients and caregivers use to enact
self-care recommendations are less understood. Insight
that goes beyond the known facilitators and barriers to
self-care and extends to understanding the strategies that
patients develop to engage in self-care is required to help
healthcare providers (HCPs) better understand the selfcare needs of HF patients. Generation of such knowledge is best suited for a qualitative research design20
because qualitative research methods examine the complexities of self-care processes and behaviors as they
occur in natural settings from the perspectives of those
engaged in care and can then capture the insider
perspectives of those most closely involved.21 This important, yet currently untapped, body of knowledge is
critical to improving understanding about the nature
and complexity of HF self-care needs and to developing more effective support, health services, and interventions that are responsive to the needs of patients.
The purpose of this study was to conduct a metasynthesis of qualitative research literature exploring
self-care needs in HF to highlight the strategies that
patients use to accommodate self-care recommendations into the reality of their daily lives.

Methods
This review is an analysis of qualitative research studies that were focused on the complex factors and processes that influence self-care. Qualitative meta-synthesis
has been used to understand various aspects of health
around disease management22,24 and, importantly, is
not dependent on using studies that self-identify (eg,

FIGURE. Flow of studies from identification to inclusion.

HF indicates heart failure.

via titles and abstracts) as being related only to selfcare. This is vital when reviewing qualitative research
of HF because studies are often framed in general terms
(eg, patient experiences) but may contain themes and
data relating to self-care.
Study Selection
To be included in this review, studies had to report primary qualitative data wholly or as part of mixed-methods
designs, contain population-specific data or themes from
adults older than 18 years, reasonably seen to pertain to
self-care, be published in the English language, and be
published as full papers/theses during or after 1995. The
search strategy combined general and specific terms relating to HF and qualitative design and was used to search
the following databases until March 19, 2012: Ovid
MEDLINE, Ovid EMBASE, Ovid PsycINFO, CSA Sociological Abstracts, Ovid AARP Ageline, EBSCO Academic
Search Complete, EBSCO CINAHL, EBSCO SocINDEX,
ISI Web of Science, and Scopus. A comprehensive range of
terms and synonyms associated with HF were used along
with a filter designed to identify the full range of qualitative methods (See Table Supplemental Digital Content 1,
http://links.lww.com/JCN/A6). We also searched Proquest
Dissertations and Theses database, scanned the reference
lists of recent papers, and consulted with colleagues.
All papers identified by the systematic search were
screened for relevancy first by their titles/abstract.
Papers that seemed to be potentially relevant were then
full-text screened against the inclusion criteria (Figure).

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Review of Patient Heart Failure Self-care Strategies 3

The meta-synthesis approach of Noblit and Hare25

was used to synthesize data from relevant studies. This
interpretive approach to synthesis involved first extracting verbatim data or themes related to self-care from
studies into a paper-based matrix. Before commencing
the review, self-care was defined as the decisions and
strategies undertaken by the individual to maintain life,
healthy functioning, and well-being.1(p364) To support
consistent interpretation among the team, data or themes
were interpreted to be relevant if findings related to any
process, phenomena, or construct that pertains to the
self-care of HF in patients or support of self-care by lay
caregivers as described by HF patients. The coding of
themes was paper based: 4 reviewers (A.M.C., K.H.,
P.H.S., and K.C.) examined the relationships between
concepts identified in the findings from the matrix.
Second-order interpretations of common or reoccurring
concepts were derived, noted comprehensively, and interpreted in the context of study quality and setting.
The main concepts identified during the second stage
were then used to reinterpret each paper and reconsider
the relationships between the papers. The results of this
synthesis are the findings of the review.
The quality of all included studies was assessed using
the criteria from the Critical Appraisal Skills Programme
Qualitative Appraisal Tool25 (See Table, Supplemental
Digital Content 2, http://links.lww.com/JCN/A7). Studies
were ranked low, moderate, or high quality based on key
methodological questions from the Critical Appraisal Skills
Programme tool but were not excluded on the basis of low
quality. Both screening and quality appraisal involved
independent assessment by two reviewers and any disagreements were resolved by discussion among the research team.

Results
Search Results
Of 1421 papers identified (Figure), 47 met the criteria
for inclusion in the review of patients self-care strategies
(Table). Main reasons for exclusion were that papers
did not contain data on HF self-care or did not have a
qualitative methodology. Studies involved 1377 patients
(45% women; mean age, 67 years; age range, 25Y98
years), 145 caregivers, and 15 HCPs. With some exceptions, populations were predominantly white and urban
dwelling. Most studies were conducted in the United
States (n = 25), and overall, study quality was moderate (n = 30), with common study weaknesses being
superficial analyses of themes, overreliance on convenience sampling, and insufficient description of sample
characteristics (Table).
Patients used various strategies to accommodate selfcare recommendations and HF into the reality of their
daily lives. In general, engaging in self-care required

both perception-based and action-based strategies and

was often described by patients in the context of adapting to stressors associated with living with a chronic
condition. Furthermore, strategies were complex, intentional, and planned, and represented coherent approaches
undertaken by patients that harnessed previous experiences and were a means to manage living with HF.
Perception-Based Self-care Strategies
Living with HF is viewed as a life-changing event because it imposes significant stressors for patients on both
their physical capabilities and sense of self.28,41,50,57,65
Patients often go through a phase of acceptance and
adjustment as they have to modify their expectations
about life, adjust their lifestyles to HF, and place HF
in some context.65 In response to stressors experienced
by HF patients, coping mechanisms and resources are
mobilized and can subsequently influence patient selfcare strategies.73 Coping mechanisms found to facilitate or interfere with engagement in self-care fell into
two main strategic approaches: a perception-based strategy
or action-based strategy.
A perception-based strategy can be described as a
cognitive, emotional, or psychosocial response to help
adjust or cope with living with the chronic condition,
leading to a gradual redefinition of the self and enabling
a person to get on with life.30,52,65 Many patients with
HF accepted that it was possible to maintain a good
quality of life, although this often required a reevaluation of what they truly valued.27,29,36,59,69 This type
of strategy may be embedded in perceptions that reflect
cultural beliefs, social norms, or spirituality.33,36,52,59,66,74
Emerging evidence suggests that perception-based strategies may support self-care adherence. For example,
one person described the realization that he needed to
take his HF serious and accept this diagnosis.61 He
continued to miss family events that were important
to him because of worsening HF. This loss brought him
to consider his personal value of family involvement
and acceptance of his HF; this supported subsequent
self-care behaviors.61 Another person shared his strategy for engaging in self-care in terms of the self-help
principles in the context of going to AA; the Twelve
Steps. You have to accept, I have a problem I have to
do something about, and start doing it.41(p162)
Some patients reported perception-based strategies
that seemed as a rejection of self-care, such as denying35,59
or ignoring symptoms53 and smoking or binge eating.43,46,72 For example, one person described an emotional reaction and its impact on adherence to dietary
restrictions,
Considering how I used to be and nowIthat has changed
drasticallyI. I find it very hard sometimes to deal withIits
very emotional. This morning after I got into the office
for a while I just, uh, cried for a little bit, a sense of

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4 Journal of Cardiovascular Nursing x Month 2014

TABLE 1

Quality Appraisal and Methodological Descriptions of Included Studies (n = 47)

Author
(Study
Setting)
Bennett
et al26
(United States)

Quality
Rank
(L/M/H)
M

Boren27
(United States)

Brannstrom
et al28
(Sweden)

Buetow
et al29
(New Zealand)

Costello and
Boblin30
(Canada)

Dickson et al31
(NR)

Dickson et al32
(NR)

Dickson et al33
(United States)

Main Strengths (+) and

Weaknesses (j)
+ Congruity between research
methodology, data analysis,
and interpretation of results;
detailed description of analysis
procedures
j Did not provide sufficient sample
characteristics (NYHA class, age
range); difficult to assess the
generalizability of the analyses
+ Congruity between research
methodology and interpretation
of results; strong grounded
theory approach
j Discusses not only data collected
in the study data but also data
collected within the authors
nurse practice
+ Detailed presentation of themes
and subthemes; participants
are adequately represented in
the themes/findings
j Participants recruited from single
site; limited description of data
analysis
+ Data analysis procedures are well
described; large sample size
j Difficult to generalize results;
lacks description of sample and
rationale for sampling strategy
+ Congruity between research
methods and data collection
procedures; analysis done by
2 researchers
j Small sample size; analysis and
interpretation of results seem
superficial
+ Congruity between conceptual
basis for study, research
methodology, theoretical
framework, and interview
methods
j Sample may be too small to draw
conclusions about typology;
analysis procedures described
but not illustrated
+ Clear conceptual basis for study;
integration of qualitative and
quantitative findings
j Small sample size limits strength
of quantitative evidence; sample
predominantly white, male
+ Congruity between research
methodology and methods;
detailed description of data
integration and triangulation; use
of a theory-driven interview guide
j Lack of researcher reflexivity; very few
sample interview questions provided

Method/s

Sampling
Strategy

FG

Convenience

Sample Pt,
HP, Cg
(Male/
Female)

Mean
Age and/or
Range
(Sex)

23 Pt (16/7)

60 Pt only

18 Cg (17/1)

SSI

Convenience

15 Pt (0/15)

28Y76

UI

Convenience 15 HP (11/4)

37Y65

SSI

Convenience

62 Pt (NR)

NR

SSI

Purposive

6 Pt (3/3)
6 Cg (NR)

30Y73

SSI; survey

Purposive for
NYHA II or
III, younger
age

41 Pt (26/15)

25Y65

SSI; survey

Purposive

41 Pt (26/15)

49
25Y65

SSI; survey

Purposive

30 Pt (18/12)

59.6
26Y98

(continues)

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Review of Patient Heart Failure Self-care Strategies 5

TABLE 1

Quality Appraisal and Methodological Descriptions of Included Studies (n = 47), continued

Author
(Study
Setting)

Quality
Rank
(L/M/H)

Europe and
Tyni-Lenne34
(NR)

Falk et al35
(Sweden)

Freydberg
et al36 (Canada)

Gary37
(United States)

Glassman38
(United States)

Granger et al39
(United States)

Helleso et al40
(Norway)

Hopp et al41
(United States)

Main Strengths (+) and

Weaknesses (j)
+ Qualitative approach gives voice to
mens experiences of living
with HF
j Lacks theoretical framework (eg,
no explicit use of gender theory);
quote identifiers are not used so
it is difficult to know if the
sample is adequately represented
+ Clear description of data analysis;
provides sample data for all
main categories
j Interview questions not provided;
illustrative quotes are sometimes
rather mundane
+ Strong rationale for theoretical
framework; detailed description
of sample recruitment, data
collection, analysis procedures,
and limitations indicative of rigor
j Authors state that the interview
guide was informed by current
guidelines yet this is not
apparent in findings
+ Theoretical framework informs
interview questions; provides
quotes and frequency counts
for each topic
j Interview guide may limit
qualitative data generation;
unclear how representative the
data are of the sample
+ Detailed systematic research
approach; use of independent
auditor to verify transcripts
j Small sample; quotes seem to
draw from few participants;
data seem repetitive
+ Congruity between theoretical
framework and interview guide
and approach to analysis; unique
focus on patient-physician dyads
j Findings seem to be congruent
with data collection and analysis,
yet there are little patient data to
substantiate results
+ Basic interpretive descriptive
approach; rationale for data
collection approach
j Sample not well described; quote
identifiers not used; themes
seem superficial
+ Detailed descriptions of data
analysis strategies ensure
trustworthiness; focus on
unique population (ethnic
minority)

Method/s

Sampling
Strategy

Sample Pt,
HP, Cg
(Male/
Female)

SSI

Convenience

20 Pt (20/0)

59
43Y73

SSI

Purposive

17 Pt (12/5)

72
55Y83

SSI

Purposive

Mean
Age and/or
Range
(Sex)

42 Pt (NR)

76

30 Cg (NR)

65Y85

SSI

Convenience

32 Pt (0/32)

68 Pt only

UI

Convenience;
purposive

5 Pt (3/2)

77.2
60Y85

SSI

Purposive

6 Pt (5/1)

58 Pt only

6 HP (3/3)

SSI

Convenience

14 Pt (6/8)

79.6
71Y93

FG; interviews

Convenience

35 Pt (NR)

74.3

(continues)

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6 Journal of Cardiovascular Nursing x Month 2014

TABLE 1

Quality Appraisal and Methodological Descriptions of Included Studies (n = 47), continued

Author
(Study
Setting)

Quality
Rank
(L/M/H)

Horowitz et al42
(United States)

Hoyt43
(United States)

Jurgens et al44
(United States)

Kaholokula
et al45 (United
States)

Lough46 (NR)

Mahoney47
(United States)

Mead et al48
(United States)

Meyerson and
Kline49 (United
States)

Main Strengths (+) and

Weaknesses (j)
+/j Interview guide appended yet
it is unclear if questions were
piloted or how they were
derived (eg, from the literature)
+ Robust theoretical framework;
rigorous sampling methods;
detailed description of analysis
and sample characteristics;
recommendations and
conclusions seem to flow from
the interpretation of the data
j None identified
+ Congruity between iterative
research process and creative
approach to analysis; patient
demographics are well described
j Sampling seems to be
convenience not purposive
+ Congruity between methodology
and mixed methods used to
collect data
j Participants are not adequately
represented (limited qualitative
data presented), small sample
size limits the generalizability
of the quantitative data
+ Focus on ethnic minority groups
living with HF; rationale for use
of theoretical model
j Findings/discussion does not
adequately represent caregiver
participants; does not adequately
describe sample (NYHA class, age
range), research questions not
stated; does not report ethical
approval of the study
+ Congruity between the
methodology and data analysis;
novel conceptualization of HF
self-care as work
j Researcher position not stated
+ Congruity between methods and
analysis of data; participants
selected from multiple sites;
use of a pilot study
j Conclusions seem somewhat
simplistic
+ Congruity between research
questions and data collection
methods; very large sample
size; patients recruited from
multiple sites; participants are
adequately represented in the
data through illustrative quotes
j Lack of age- or sex-based
descriptive analysis
+ Research design and overall study
are well described

Method/s

Sampling
Strategy

Sample Pt,
HP, Cg
(Male/
Female)

Mean
Age and/or
Range
(Sex)
960Y93

SSI

Purposive

19 Pt (10/9)

52Y89

SSI

Convenience

11 Pt (5/6)

67
50Y81

SSI

Convenience

77 Pt (40/37)

FG

Convenience

11 Pt (5/6)

65.9 Pt

25 Cg (4/21)

50.5 Cg

SSI

Purposive

25 Pt (12/13)

75.9

71
66Y91

SSI

Purposive

16 Pt (12/4)
12 Cg (NR)

FG

Written
anecdotal
records

Convenience;
purposive

Convenience

387 Pt
(84/198:
105 sex not
described)

27 Pt (NR)

67.7
Pt only

41% Q65

75

(continues)

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Review of Patient Heart Failure Self-care Strategies 7

TABLE 1

Quality Appraisal and Methodological Descriptions of Included Studies (n = 47), continued

Author
(Study
Setting)

Quality
Rank
(L/M/H)

Ming et al50
(Malaysia)

Reid et al51
(United
Kingdom)

Rerkluenrit et al52
(Thailand)

Riegel and
Carlson53
(United States)

Riegel et al54
(United States)

Riegel et al55
(Australia)

Riegel et al56
(Australia)

Main Strengths (+) and

Weaknesses (j)
j Conclusions/findings are based on
anecdotal records written during
an HF self-care intervention; the
study would likely be more
rigorous if interviews had been
conducted with patients to
triangulate the case note data
+ Sufficient description of sample;
patients seem to be adequately
represented (via use of
supporting quotes from
participants)
j Theoretical basis not described;
the interview guide or sample
interview questions are not
provided
+ Congruity between the research
methodology and data collection
methods; large sample size
j Patients recruited from outpatient
HF clinics (these patients may
already be receiving support for
medication management)
+ Congruity between grounded
theory approach and data
collection and analysis methods;
participants are adequately
represented; good use of
illustrative quotes
j Despite use of grounded theory
approach, authors do not
identify a core variable
+ Basic interpretive descriptive
design and approach to analysis
j Unsure about rigor of qualitative
design; minimal description or
interpretation of quotes
provided for themes
+ Congruent methodology, data
analysis, and interpretation of
results; theory-driven purposive
sampling
j Lacks information on age and
number of participants in
NYHA class III or IV
+ Congruity in mixed-methods design
and triangulation of qualitative
and quantitative data
j Participants are not adequately
represented in results (limited
use of quotes)
+ Congruity in mixed-methods
approach; detailed steps
indicate rigorous design
jLow proportion of women in sample;
qualitative themes seem to draw
upon quantitative results

Method/s

SSI

Sampling
Strategy

Purposive

Sample Pt,
HP, Cg
(Male/
Female)

20 Pt (15/5)

Mean
Age and/or
Range
(Sex)

56.5
27Y75

SSI

Convenience

50 Pt (33/17)
29 Cg

SSI

Purposive;
theoretical

Structured
interviews;
FG

Convenience

35 Pt (19/16)

26 Pt (17/9)

67.1
41Y80
Pt only

NR

74.4

59Y91

Structured
interviews

Theoretical

29 Pt (18/11)

SSI

Purposive

29 Pt (21/8)

SSI

Purposive

27 Pt (19/8)

NR

68.7

68.7
35Y94

SSI

Convenience

25 Pt (24/1)

70.4
(continues)

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8 Journal of Cardiovascular Nursing x Month 2014

TABLE 1

Quality Appraisal and Methodological Descriptions of Included Studies (n = 47), continued

Author
(Study
Setting)

Quality
Rank
(L/M/H)

Rodriguez et al57
(United States)

Rogers et al58
(United
Kingdom)

Scott59
(United States)

Scotto60
(United States)

Scotto61
(United States)

Seto et al62
(Canada)

Sloan and
Pressler63
(United States)

Stromberg et al64
(Sweden)

Stull et al65
(United States)

Main Strengths (+) and

Weaknesses (j)
+ Discusses intercoder reliability;
patient sample is representative
of whole NYHA spectrum
j Sample is largely men and white
and was predetermined (not
based on thematic saturation);
description of data analysis
process lacks details
+ Congruity between methodology
and well-described method
j Low proportion of women in
sample; examples of emergent
themes are not provided
+ Congruity in research methods,
questions, data analysis, and
interpretation of results
j Study is more quantitative than
qualitative; researcher position
not stated
+ Congruity between research
methods and research questions
j Analysis seems superficial;
themes seem to reflect nursing
theory, not data; purports to
be phenomenology but the
process followed is generic
interpretive descriptive
+ Congruity in methodological
approach; clear conceptualization
of self-care and sampling rationale
j None identified
+ Provides sample interview
questions and detailed
demographic characteristics
of participants
j Interviews may lack depth given
their very short duration; no
details on qualitative data analysis;
no details on triangulation of
quantitative and qualitative data
+ Focus on cognitive impairment is
unique; congruity between
theoretical/philosophical
perspectives and data analysis
j Sample is literate and socially
supported, findings may not be
representative of larger population
+ Congruity between methodology
and data collection methods
j Interview questions use sophisticated
language, which may not be
understood by participants;
superficial examples might have
more complex interpretations
+ Congruity between theoretical
framework (interactionist
perspective) and data analysis
and interpretation

Method/s

Sampling
Strategy

Sample Pt,
HP, Cg
(Male/
Female)

Mean
Age and/or
Range
(Sex)
53Y87

UI

Purposive

27 Pt (20/7)

69
38Y94

SSI

Convenience

20 Pt (NR)
18 Cg (NR)

71.3
Cg only

SSI

Convenience

14 Pt (9/5)

63
42Y84

SSI

Convenience

14 Pt (9/5)

63
42Y84

Survey; SSI

Convenience

94 Pt (74/20)

54.6

SSI

Purposive

12 Pt (10/2)

43Y81

SSI

Purposive

25 Pt (17/8)

46Y93

SSI

Convenience

21 Pt (17/4)

61

(continues)

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Review of Patient Heart Failure Self-care Strategies 9

TABLE 1

Quality Appraisal and Methodological Descriptions of Included Studies (n = 47), continued

Author
(Study
Setting)

Quality
Rank
(L/M/H)

Tierney et al66
(United
Kingdom)

Van der Wal

et al67
(Netherlands)

Weierbach68
(United
States)

Winters69
(United
States)

Wu70
(United
States)

Wu et al71
(United
States)

Zambroski72
(United
States)

Main Strengths (+) and

Weaknesses (j)
j Triangulation of data in analysis is
not apparent
+ Participants were recruited from
multiple sites; team-based
approach to analysis enhances
trustworthiness of the findings
j Sample is mostly male; unclear
why patients with NYHA class
IV were excluded
+ Identifies specific, practical issues
into supporting self-care
j The term compliance is dated
(addressed by authors) but may
influence approaches to data
collection and/or analysis;
themes seem to overlap and
are very broad
+ Congruity in research methods,
research questions, data
analysis, and interpretation
of results
j Discussion is brief and seems
superficial
+ Specifies a theoretical framework
j Limited description of analysis
procedures; limited representation
of participants; themes not
supported by illustrative quotes
+ Basic interpretive descriptive
approach; participants are
adequately represented in
the results
j Interview guide is specific and
directed; themes seem simplistic
+ Clear description of sample and
methods; conclusions seem to flow
from the analysis/interpretation
of data
j Limited description of setting and
recruitment strategies; reliance
on convenience sampling
+ Congruity in research methodology,
methods, and data analysis;
strong rationale for creative use
of metaphor; participants are
adequately represented; use of
illustrative quotes to support
themes; participants recruited
from multiple sites
j Several interview questions
provided but entire interview
guide not included

Method/s

Sampling
Strategy

Sample Pt,
HP, Cg
(Male/
Female)

Mean
Age and/or
Range
(Sex)
29Y79

SSI

Purposive

22 Pt (15/7)

68.9
53Y82

SSI

Purposive

15 Pt (9/6)

70
42Y87

SSI; case
note
review

SSI

Convenience

20 Pt (9/11)

74.6
65Y90

Purposive

22 Pt (15/7)

70
38Y88

SSI; structured
interviews

Convenience;
purposive

16 Pt (9/7)

60.4

SSI

Convenience

16 Pt (9/7)

41Y84

60.4
41Y84

SSI

Purposive

11 Pt (5/6)

67

Abbreviations: Cg, caregivers; FG, focus group; HF, heart failure; HP, health professionals; L, low; M, medium; H, high; NR, not reported; NYHA, New York
Heart Association; Pt, patient; SSI, semistructured interviews; UI, unstructured interviews.

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10 Journal of Cardiovascular Nursing x Month 2014

hopelessnessIIm not capable of doing the walking that
I used to doII feel a sense of inadequacyI; Sometimes
you just get fed up and I think that was just a day that I
had a real down spiraling. I just ate what I wanted. I put
salt on everything and just didnt care.54(p239)

Emotional reactions such as anxiety and depression

can have a negative impact on engaging in self-care.48,54,75,76
Nevertheless, emotional reactions such as fear or anxiety,
which tend to be viewed as maladaptive coping strategies, may also have a positive influence on self-care. For
example, patients report increases in vigilance of symptom monitoring and adherence to following advice from
the healthcare team in response to feelings of anxiety,56
fear of dying,35 or fear of hospitalization.49,64,77 It was
not clear in the reviewed studies if patients were aware
that such behaviors were congruent with self-care recommendations and/or engaged in these behaviors intermittently or continuously.

that early, and often I forget to take it, Even though Ive
got it on the counter there.38(p81)

Action-based strategies also included enlisting the

help of caregivers for assistance with self-care activities.
Caregiver assistance ranged from simple reminding to
taking over some of the responsibilities such as organizing medications, buying groceries and preparing
meals according to dietary guidelines, monitoring
symptoms, and navigating the healthcare system as
needed.27,40,42,43,45,51Y53,55,56,59,63,74,75,79 Although
some patients felt they did not want to be a burden
to caregivers, at the same time they recognized their
inability to manage self-care activities without caregiver help.36
One patient explained:
I was a little bit afraid of everything but then my kids and
the husband was so helpful soIeducate your own family
about [heart failure]Icause they know whats going on
and help me with the food, with the exerciseII think its
better.45(p286)

Action-Based Self-care Strategies

An action-based self-care strategy represents as an adjustment of daily tasks or lifestyle to maintain independence and quality of life.31,32,41,60,68 For example,
some patients addressed feelings of uncertainty by learning how to monitor and respond to their symptoms and
developing a relationship with their primary HCPs.69
Others would develop action-based strategies that integrated HF management into their everyday life routines
to improve self-care.54,61,67 Many patients describe actionbased strategies such as learning how to pace their
activities or listen to their bodies to help optimize their
ability to maintain physical activity.27,31,32,34,35,53,65,72,78
Over time, patients viewed such action-based strategies as a normal part of their daily routine.51,52,60 One
patient describes deliberate actions to continue employment while living with HF:
I pack my lunch and I usually exercise at lunch by
walking 3 miles. My coworkers walk with meI.
Sometimes I do delay my LasixA pill, but only by 2 hours
if I have a morning conference meetingI. Managing my
heart failure is extremely important, extremely
importantI. I want to be able to function as normally
as possible and I want to be able to continue to work.31(p71)

However, it was not clear if these self-care action

strategies were maintained over time given fluctuations in daily life or internal resources (eg, self-care was
seen as tiring). One study reported that patients did get
tired of weighing themselves daily and stopped this
activity, even though they knew they should not.62
Other studies reported that alterations to established
life routines could reduce adherence to medication
regimens.37,38,60
We have a team meeting every two weeks, and I have to
be there. Bright and early, and I normally dont get up

Self-care Strategies; Observable or

Hidden Work
In general, engaging in self-care requires both perceptionbased and action-based strategies and was often described by patients in the context of adapting to stressors
associated with living with a chronic condition. However, planning and working through such strategies by
HF patients may or may not be evident to those around
them. Patients reported a wide variety of creative, wellplanned, and deliberate self-care action strategies that
could be observed by others.31,32,53 Daily activities were
modified to control symptoms, including bathing,68
grocery shopping,35 cleaning the house,27 meal preparation,27,45,52,67 and participating in leisure activities.66
A patient described her strategy to overcome her poor
stamina as she found an efficient way to accomplish
important tasks so she was not wasting energy:
I do most of the cooking. We live in this house and we
have got this nice roomy kitchen and Ive got a clerical
chair and I just whip around the kitchen in this clerical
chair. It is what I need to do. It works.27(p78)

Conversely, cognitive tasks associated with self-care

were often unobservable by others. These include deciphering symptoms and deciding on and evaluating a
course of action in response to symptoms.45,47,72 The
following is an example of the thought process of an
HF patient who is trying to interpret symptoms of shortness of breath:
I think it is really asthma, but it acts somewhat (pointing
to heart)IBut thats not my trouble. Cause my heart
never acted like this when I had the asthma. It wasnt this
feeling you cant catch your breathIits short, the
shortnessII could always do something for my asthma.

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Review of Patient Heart Failure Self-care Strategies 11

This dont clear up. It clears up someIwhen I had
asthma I could get up and dress and go to churchII had
the asthma attack, but they would kind of go away. But
this doesnt. Im relieved some, but its never like with
asthmaINo its not like asthma all together, but its
something like a bad asthma attack.47(p168)

Self-care Strategies Are Often Based on Past

Experiences
Self-care strategies improved over time with HF patients learning and building from previous experiences
to guide their ongoing self-care strategies and decisions.
Some self-care routines were embedded in action-based
strategies that were practiced over time. For example,
patients would use memory aids or refine daily routines
to determine the best way to help with remembering
complex medication schedules.26,63,70,71,75
I have a basket of prescriptions and I set the basket
down, and I start with one and go around it and take
themIused this method for years, and it just seems to
work and thats why I continue it.75(p8)

Self-care decisions could also reflect emotional reactions to previous HF experiences. This patient described the reason for occasionally missing his diuretic
dose:
I dont take my Lasix when I am going out somewhere, I
cant always get to a bathroom quick enoughI. I had an
accident when I was out a few months ago and I was so
embarrassed I could have died.37(pp14Y15)

Some patients avoided taking action by seeking help

from HCPs for signs of worsening symptoms for fear
of rehospitalization and often delayed calling until
they needed emergency assistance.43,44,74 On the other
hand, other patients sought early advice for worsening
symptoms to avoid the fear they described with acute
decompensation.43 Finally, some patients reported a
balancing act of attitudes where they pondered between both positive and negative self-care choices that
were based on lessons learned from previous experiences.32,67 The following is an example from Hoyt:
Dorothy had experienced what she described as the
catch 22. She did not want to call an ambulance and
risk that by the time they would arrive at her home, her
symptoms would have resolved. She was afraid, based on
past experiences, that she would call too soon, and so
tended to wait until a crisis to ask for help. Reflecting on
an acute emergency requiring 911, or what Dorothy described as getting in big trouble, allowed her to recognize
her own cues and decrease risk of recurrence.43(pp108Y112)

During the process of learning, some patients often

used a variety of strategies to manage and determine
the effects of their medications, such as home-based
lay clinical trials.38,47 This often involved meticulous
note-taking, analysis, and juggling of both medications and daily activities and contributed to informal

knowledge as patients made connections between medications and symptoms they experienced.38,47,58 However, not all patients felt comfortable sharing this
information with their healthcare team members because they may not feel the HCPs would agree with
their judgments. The following is an example from
Glassman:
One patient described her strategy to improve her
tolerance to a medication based on a past experience of
symptomatic hypotension that prevented her from going
to work. She stopped the medication for a few days,
reintroduced the medication at 2 the prescribed dose and
then slowly titrated the medication depending on how
she felt getting out of bed in the morning. At the same
time, she did not report this to her physician and actually
lied to him about the dose she was taking, as she was
too embarrassed to disclose her own approach to
titrating the medication.38(p109)

Patients with HF expressed difficulty with translating self-care knowledge into understanding how
to engage in these activities and behaviors.39,46,62,80
These patient lay clinical trials may have reflected an
expert approach to managing their HF for some HF
patients, whereas others may have blindly experimented
with self-care tasks as an attempt to try and understand
how to self-care.76 For example, some patients thought
that increasing fluid intake when they were getting
sick or when they had eaten something salty would
help flush out the system and improve symptoms,
but in fact, this action could make their symptoms
worse.20(p181) In another study, women who were trying
to lose weight by eating low-calorie meals as a positive
healthy choice were unaware of the high sodium content in these food choices and could make their HF
symptoms worse.37
I thought I was doing the right thing trying to lose
weight, had no idea I was making my heart problem
worse.37(p13)

Discussion
This meta-synthesis shows that most patients with HF
do want to engage in self-care and go to great lengths
to find ways to practice self-care behaviors. It is apparent that they may also have difficulty executing these
self-care behaviors on their own and require effective
guidance and support from HCPs or and/or caregivers.
Three key messages arise from these findings and are
discussed below.
Patients Engage in Perception and
Action-Based Strategies
The effect of HF on an individuals life can be profound,81 and patients often mobilize resources to overcome these life-changing experiences in an effort to

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12 Journal of Cardiovascular Nursing x Month 2014

achieve control, maintain independence, and improve
their quality of life. In this context, patients define selfcare not only by the actual performance of tasks but
also by the emotional reactions and strategies necessary
for learning how to adapt to living with HF. Results
from our meta-synthesis suggest that self-care need, as
defined by HF patients, represents a broader view of
caring for oneself to help adapt to living with HF and
extends to include coping strategies beyond the empirical action-based definition of self-care. Although the
empirical literature does appreciate the potential impact
of emotions and coping on self-care,7 findings from our
meta-synthesis highlight the comprehensive approach
that HCPs need to assume when helping patients improve their quality of life through self-care strategies.
For example, patients may defer seeking healthcare for
fear of hospitalization, even though they recognize the
early symptoms of decompensation. Without exploring
the fear underlying the decision, education outlining the
tasks for symptom monitoring and management that
includes contact with HCPs may not be adopted by such
patients. Furthermore, HCPs may need to take a step
back and explore the emotional reactions that HF patients experience before proceeding with interventions
specifically targeting self-care activities. Helping patients
come to terms with and accepting HF can then facilitate
uptake of self-care strategies.

Learning Self-care Is a Process in Which

Cumulative Experience is Paramount
Most patients do want to learn how to engage in selfcare in an effort to decrease uncertainty, regain a sense
of control, and improve their quality of life; however,
they are unsure as how best to accomplish these goals.80
While developing these action strategies to help selfmanage their HF, their ideas and knowledge from previous experiences may not always be helpful, and in
fact, may make their symptoms worse. At the same
time, patients may be reluctant or embarrassed to share
their action strategies with their healthcare team members. Therefore, HCPs need to encourage and promote
discussions, and coach patients to initiate self-care strategies with an agenda that builds trust and encourages
learning. Rather than focusing on the possible problems
that arose from their self-care decisions, HCPs need to
harness these situations as opportunities for learning
and growth and highlight the positive learning that
comes from such attempts. Arguably, more can be learned
from situations in which HF self-care was not successfully
undertaken. For example, consultations and/or hospitalization provide a useful opportunity to assess what
seems to work or not work within patients actual selfcare practice. As adults, experiential learning is often
more effective than abstract thinking,82 and under-

standing the patients experiences with HF self-care builds

an excellent foundation for individualizing learning
opportunities. Home-based lay clinical trials need to
be regarded as attempts to overcome difficulty with the
current HF self-care regimen rather than as overt noncompliance. Exploring the actions and perceptions of
such self-care clinical trials with HF patients creates an
opportunity for adapting self-care activities to patients current situations and helps patients learn more
about the why and how of their HF self-care. Furthermore, focusing on the positive learning rather than
maladaptive decision making within a clinical trial will
contribute to building patient self-confidence and efficacy, which is necessary for self-care.15,83

Strategies to Optimize Self-care Must Be

Adapted to the Daily Routine and
Environment
As we continue to develop group and individual interventions for promoting self-care in HF patients, it is
critical that individualized instruction include helping patients understand the how and why of self-care
within their personal life situation. Healthcare practitioners need to provide a safe environment for patients
to explore real or potential situations when integrating
self-care into their daily life will be difficult. Creative
problem solving, behavioral strategies, and mutual goal
setting are necessary to help patients overcome challenges for integrating self-care into their daily routine
and sustaining such action strategies over time.80,84,85
Strategies to optimize self-care also extend to individualizing patients symptom experience and management. For example, if individuals know that when
their ring gets tight they need an extra diuretic, teaching them to check for pedal edema is not helpful if they
do not experience pedal edema with an HF exacerbation. Often, the early symptoms of HF are subtle and
may be difficult for a person to identify, and therefore,
HCPs need to be detectives and help patients decipher their unique and early symptoms of HF exacerbation from other symptoms they may have attributed
to HF. Sometimes, the process of raising awareness
through reflection is an unfamiliar skill for patients,86
and they may need some guidance with identifying the
physical symptoms, environmental features, and emotional feelings of their situation. Through reflective
listening techniques,87 HCPs can raise patient awareness of the objective and subjective features that predominated in the patients experience of HF symptoms and
management strategies. Once these individual patterns
of symptom deterioration are identified, HCPs can devise
individualized algorithms or similar decision aids with
patients, and caregivers when available, to help them
navigate key stages in decision-making processes around

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Review of Patient Heart Failure Self-care Strategies 13

Whats New and Important

h Patients define self-care not only by the actual
performance of tasks but also by the emotional
reactions and strategies necessary for learning how to
adapt to living with HF.
h Self-care is a process of learning, and self-care activities
are often intentional, planned, and built on previous
experiences.
h Individualized approaches that emphasize how to
self-care must be adopted for patients to develop the
necessary HF self-care skills.

self-care of HF, especially in relation to timely helpseeking from the appropriate sources. Importantly, these
approaches prioritize the patients experiences and strategies as opposed to reiterating self-care tasks and recommendations. As such, discussions around self-care and
management of HF are more likely to elicit and be
congruent with patients personal values.

Limitations
As with all reviews, the findings of this meta-synthesis
are constrained by the scope and quality of the included studies. Although a number of studies in this
review are based on naturalistic decision-making theory,
many studies lacked a theoretical approach to understanding these multifactorial and complex behaviors.
This is an important weakness because health behaviors, including those associated with HF self-care, can
be conceptualized in a variety of ways depending on
underlying assumptions about the nature and determinants of this behavior. If HF self-care is viewed in more
complex terms as being both an outcome and a naturalistic process, that is then a process influenced by
personal and contextual factors. Theoretical and methodological approaches to understanding this conceptualization of self-care are needed which can encompass
and unpack this complexity.

Conclusions
In summary, patient engagement in self-care is at the
foundation for living with a chronic condition such as
HF. Healthcare providers need to appreciate that patients regard self-care as an adaptation to living with
a chronic condition that they undertake to maintain
independence and quality of life. Healthcare providers
need to recognize that self-care requires a process of
learning from experience, and embrace an individualized approach for helping HF patients develop the necessary self-care skills while emphasizing the how and
not just the what. We also need to provide a safe and
nonjudgmental environment for patients to discuss their
attempts when learning how to self-care while high-

lighting the value of learning from all their experiences.

Finally, the supportive role of caregivers as a necessary
strategy for patient self-care support cannot be understated. The additional insight into the nature and
complexity of HF self-care needs gained from this
meta-synthesis of literature exploring the strategies that
patients use to engage in self-care should help clinicians
develop more effective support to patients and caregivers as they strive to improve clinical outcomes in
this high risk population.

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