A_Systematic_Review_of_Patient_Heart_Failure.7
Journal of Cardiovascular Nursing
Vol.30,No.2,pp 121Y 135x Copyright B 2015Wolters Kluwer Health,Inc.All rights reserved.
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 18years and be published as full papers/theses beginning 1995.Ten databases were searched until March 19,2012.Results:Of 1421papers identified by the search,47were included.Studies involved the following:1377patients,45%women,mean age of 67years (range,25Y 98years),145caregivers,and 15HCPs.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
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,symp-tom 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 strat-egies 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 measured 2,3but also as a complex naturalistic process.4Y 7This is corroborated by the recent American Heart Association Scientific Statement which views HF self-care in terms of ‘‘natu-ralistic decision-making’’to emphasize that self-care is a process,undertaken in the real-world setting,influ-enced 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 suf-fering and contributes to unsustainably high healthcare
121
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 journal’s Web site (https://www.wendangku.net/doc/67795794.html,).
Correspondence
Alexander M.Clark,PhD,RN,Level 3,Edmonton Clinic Health Academy,1140587Avenue,Edmonton,AB,Canada T6G 1C9(alex.clark@ualberta.ca).
DOI:10.1097/JCN.0000000000000118
costs.9Heart failure is associated with high mortality, frequent hospitalizations,and an economic strain on the healthcare system.9Heart failure is extremely com-mon as it affects a large and growing proportion of the ageing population in high-income countries.10In the United States,approximately5.7million people have HF,with more than500000newly diagnosed cases each year.10Furthermore,HF also places a heavy finan-cial 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%and1.9%of total healthcare spending in devel-oped countries,with50%to74%of the HF costs attri-buted 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 rec-ommended in the clinical guidelines.Current evidence has identified various personal,psychosocial,and con-textual 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 self-care needs of HF patients.Generation of such knowl-edge is best suited for a qualitative research design20 because qualitative research methods examine the com-plexities 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.21This im-portant,yet currently untapped,body of knowledge is critical to improving understanding about the nature and complexity of HF self-care needs and to develop-ing more effective support,health services,and inter-ventions that are responsive to the needs of patients. The purpose of this study was to conduct a meta-synthesis of qualitative research literature exploring self-care needs in HF to highlight the strategies that patients use to accommodate self-care recommenda-tions into the reality of their daily lives.
Methods
This review is an analysis of qualitative research stud-ies that were focused on the complex factors and pro-cesses that influence self-care.Qualitative meta-synthesis has been used to understand various aspects of health around disease management22,24and,importantly,is not dependent on using studies that self-identify(eg,via titles and abstracts)as being related only to‘‘self-care.’’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 pri-mary qualitative data wholly or as part of mixed-methods designs,contain population-specific data or themes from adults older than18years,reasonably seen to pertain to self-care,be published in the English language,and be published as full papers/theses during or after1995.The search strategy combined general and specific terms relat-ing to HF and qualitative design and was used to search the following databases until March19,2012:Ovid MEDLINE,Ovid EMBASE,Ovid PsycINFO,CSA Socio-logical Abstracts,Ovid AARPAgeline,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 quali-tative methods(See Table Supplemental Digital Content1, https://www.wendangku.net/doc/67795794.html,/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).
FIGURE.Flow of studies from identification to inclusion. HF indicates heart failure.
122Journal of Cardiovascular Nursing x March/April2015
The meta-synthesis approach of Noblit and Hare25 was used to synthesize data from relevant studies.This interpretive approach to synthesis involved first extract-ing 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:4reviewers(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 in-terpreted 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 Content2,https://www.wendangku.net/doc/67795794.html,/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 dis-agreements were resolved by discussion among the re-search team.
Results
Search Results
Of1421papers identified(Figure),47met 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 involved1377patients (45%women;mean age,67years;age range,25Y98 years),145caregivers,and15HCPs.With some excep-tions,populations were predominantly white and urban dwelling.Most studies were conducted in the United States(n=25),and overall,study quality was mod-erate(n=30),with common study weaknesses being superficial analyses of themes,overreliance on conve-nience sampling,and insufficient description of sample characteristics(Table).
Patients used various strategies to accommodate self-care 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 adapt-ing to stressors associated with living with a chronic condition.Furthermore,strategies were complex,inten-tional,and planned,and represented coherent approaches undertaken by patients that harnessed previous experi-ences and were a means to manage living with HF. Perception-Based Self-care Strategies
Living with HF is viewed as a life-changing event be-cause 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.65In response to stressors experienced by HF patients,coping mechanisms and resources are mobilized and can subsequently influence patient self-care strategies.73Coping mechanisms found to facil-itate 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.30,52,65Many patients with HF accepted that it was possible to maintain a good quality of life,although this often required a reeval-uation of what they truly valued.27,29,36,59,69This 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 strat-egies may support self-care adherence.For example, one person described the realization that he needed to ‘‘take his HF serious’’and accept this diagnosis.61He 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.61Another person shared his strat-egy 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 symptoms53and smoking or binge eat-ing.43,46,72For example,one person described an emo-tional reaction and its impact on adherence to dietary restrictions,
Considering how I used to be and now I that has changed drastically I.I find it very hard sometimes to deal with I it’s very emotional.This morning after I got into the office for a while I just,uh,cried for a little bit,a sense of Review of Patient Heart Failure Self-care Strategies123
TABLE Quality Appraisal and Methodological Descriptions of Included Studies(n=47)
Author (Study Setting)Quality
Rank
(L/M/H)
Main Strengths(+)and
Weaknesses(j)Method/s
Sampling
Strategy
Sample Pt,
HP,Cg
(Male/
Female)
Mean
Age and/or
Range
(Sex)
Bennett
et al26 (United States)M+Congruity between research
methodology,data analysis,
and interpretation of results;
detailed description of analysis
procedures
FG Convenience23Pt(16/7)60Pt only
j Did not provide sufficient sample
characteristics(NYHA class,age
range);difficult to assess the
generalizability of the analyses
18Cg(17/1)
Boren27 (United States)H+Congruity between research
methodology and interpretation
of results;strong grounded
theory approach
SSI Convenience15Pt(0/15)28Y76
j Discusses not only data collected
in the study data but also data
collected within the author’s
nurse practice
Brannstrom et al28 (Sweden)M+Detailed presentation of themes
and subthemes;participants
are adequately represented in
the themes/findings
UI Convenience15HP(11/4)37Y65
j Participants recruited from single
site;limited description of data
analysis
Buetow
et al29 (New Zealand)L+Data analysis procedures are well
described;large sample size
SSI Convenience62Pt(NR)NR
j Difficult to generalize results;
lacks description of sample and
rationale for sampling strategy
Costello and Boblin30 (Canada)M+Congruity between research
methods and data collection
procedures;analysis done by
2researchers
SSI Purposive6Pt(3/3)30Y73
j Small sample size;analysis and
interpretation of results seem
superficial
6Cg(NR)
Dickson et al31 (NR)M+Congruity between conceptual
basis for study,research
methodology,theoretical
framework,and interview
methods
SSI;survey Purposive for
NYHA II or
III,younger
age
41Pt(26/15)25Y65
j Sample may be too small to draw
conclusions about typology;
analysis procedures described
but not illustrated
Dickson et al32 (NR)M+Clear conceptual basis for study;
integration of qualitative and
quantitative findings
SSI;survey Purposive41Pt(26/15)49
j Small sample size limits strength
of quantitative evidence;sample
predominantly white,male
25Y65
Dickson et al33 (United States)M+Congruity between research
methodology and methods;
detailed description of data
integration and triangulation;use
of a theory-driven interview guide
SSI;survey Purposive30Pt(18/12)59.6
j Lack of researcher reflexivity;very few
sample interview questions provided
26Y98
124Journal of Cardiovascular Nursing x March/April2015
TABLE Quality Appraisal and Methodological Descriptions of Included Studies(n=47),Continued
Author (Study Setting)Quality
Rank
(L/M/H)
Main Strengths(+)and
Weaknesses(j)Method/s
Sampling
Strategy
Sample Pt,
HP,Cg
(Male/
Female)
Mean
Age and/or
Range
(Sex)
Europe and Tyni-Lenne34 (NR)L+Qualitative approach gives voice to
men’s experiences of living
with HF
SSI Convenience20Pt(20/0)59
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
43Y73
Falk et al35 (Sweden)M+Clear description of data analysis;
provides sample data for all
main categories
SSI Purposive17Pt(12/5)72
j Interview questions not provided;
illustrative quotes are sometimes
rather mundane
55Y83
Freydberg
et al36(Canada)M+Strong rationale for theoretical
framework;detailed description
of sample recruitment,data
collection,analysis procedures,
and limitations indicative of rigor
SSI Purposive42Pt(NR)76
j Authors state that the interview
guide was informed by current
guidelines yet this is not
apparent in findings
30Cg(NR)65Y85
68Pt only
Gary37 (United States)M+Theoretical framework informs
interview questions;provides
quotes and frequency counts
for each topic
SSI Convenience32Pt(0/32)
j Interview guide may limit
qualitative data generation;
unclear how representative the
data are of the sample
Glassman38 (United States)M+Detailed systematic research
approach;use of independent
auditor to verify transcripts
UI Convenience;
purposive
5Pt(3/2)77.2
j Small sample;quotes seem to
draw from few participants;
data seem repetitive
60Y85
Granger et al39 (United States)M+Congruity between theoretical
framework and interview guide
and approach to analysis;unique
focus on patient-physician dyads
SSI Purposive6Pt(5/1)58Pt only
j Findings seem to be congruent
with data collection and analysis,
yet there are little patient data to
substantiate results
6HP(3/3)
Helleso et al40 (Norway)M+Basic interpretive descriptive
approach;rationale for data
collection approach
SSI Convenience14Pt(6/8)79.6
j Sample not well described;quote
identifiers not used;themes
seem superficial
71Y93
Hopp et al41 (United States)M+Detailed descriptions of data
analysis strategies ensure
trustworthiness;focus on
unique population(ethnic
minority)
FG;interviews Convenience35Pt(NR)74.3
Review of Patient Heart Failure Self-care Strategies125
TABLE Quality Appraisal and Methodological Descriptions of Included Studies(n=47),Continued
Author (Study Setting)Quality
Rank
(L/M/H)
Main Strengths(+)and
Weaknesses(j)Method/s
Sampling
Strategy
Sample Pt,
HP,Cg
(Male/
Female)
Mean
Age and/or
Range
(Sex) +/j Interview guide appended yet
it is unclear if questions were
piloted or how they were
derived(eg,from the literature)
960Y93
Horowitz et al42 (United States)H+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
SSI Purposive19Pt(10/9)52Y89 j None identified
Hoyt43 (United States)H+Congruity between iterative
research process and creative
approach to analysis;patient
demographics are well described
SSI Convenience11Pt(5/6)67
j Sampling seems to be
convenience not purposive
50Y81
Jurgens et al44 (United States)L+Congruity between methodology
and mixed methods used to
collect data
SSI Convenience77Pt(40/37)75.9
j Participants are not adequately
represented(limited qualitative
data presented),small sample
size limits the generalizability
of the quantitative data
Kaholokula
et al45(United States)L+Focus on ethnic minority groups
living with HF;rationale for use
of theoretical model
FG Convenience11Pt(5/6)65.9Pt
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
25Cg(4/21)50.5Cg
Lough46(NR)M+Congruity between the
methodology and data analysis;
novel conceptualization of HF
self-care as work
SSI Purposive25Pt(12/13)71
j Researcher position not stated
66Y91
Mahoney47 (United States)M+Congruity between methods and
analysis of data;participants
selected from multiple sites;
use of a pilot study
SSI Purposive16Pt(12/4)67.7
Pt only
j Conclusions seem somewhat
simplistic
12Cg(NR)
Mead et al48 (United States)M+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
FG Convenience;
purposive
387Pt
(84/198:
105sex not
described)
41%Q65
j Lack of age-or sex-based
descriptive analysis
Meyerson and Kline49(United States)M+Research design and overall study
are well described
Written
anecdotal
records
Convenience27Pt(NR)75
126Journal of Cardiovascular Nursing x March/April2015
TABLE Quality Appraisal and Methodological Descriptions of Included Studies(n=47),Continued
Author (Study Setting)Quality
Rank
(L/M/H)
Main Strengths(+)and
Weaknesses(j)Method/s
Sampling
Strategy
Sample Pt,
HP,Cg
(Male/
Female)
Mean
Age and/or
Range
(Sex) 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
Ming et al50 (Malaysia)M+Sufficient description of sample;
patients seem to be adequately
represented(via use of
supporting quotes from
participants)
SSI Purposive20Pt(15/5)56.5
j Theoretical basis not described;
the interview guide or sample
interview questions are not
provided
27Y75
Reid et al51 (United Kingdom)H+Congruity between the research
methodology and data collection
methods;large sample size
SSI Convenience50Pt(33/17)67.1
j Patients recruited from outpatient
HF clinics(these patients may
already be receiving support for
medication management)
29Cg41Y80
Pt only
Rerkluenrit et al52 (Thailand)M+Congruity between grounded
theory approach and data
collection and analysis methods;
participants are adequately
represented;good use of
illustrative quotes
SSI Purposive;
theoretical
35Pt(19/16)NR
j Despite use of grounded theory
approach,authors do not
identify a core variable
Riegel and Carlson53 (United States)M+Basic interpretive descriptive
design and approach to analysis
Structured
interviews;
FG
Convenience26Pt(17/9)74.4 j Unsure about rigor of qualitative
design;minimal description or
interpretation of quotes
provided for themes
59Y91
Riegel et al54 (United States)H+Congruent methodology,data
analysis,and interpretation of
results;theory-driven purposive
sampling
Structured
interviews
Theoretical29Pt(18/11)NR
j Lacks information on age and
number of participants in
NYHA class III or IV
Riegel et al55 (Australia)M+Congruity in mixed-methods design
and triangulation of qualitative
and quantitative data
SSI Purposive29Pt(21/8)68.7
j Participants are not adequately
represented in results(limited
use of quotes)
Riegel et al56 (Australia)M+Congruity in mixed-methods
approach;detailed steps
indicate rigorous design
SSI Purposive27Pt(19/8)68.7
j Low proportion of women in sample;
qualitative themes seem to draw
upon quantitative results
35Y94 M SSI Convenience25Pt(24/1)70.4
Review of Patient Heart Failure Self-care Strategies127
TABLE Quality Appraisal and Methodological Descriptions of Included Studies(n=47),Continued
Author (Study Setting)Quality
Rank
(L/M/H)
Main Strengths(+)and
Weaknesses(j)Method/s
Sampling
Strategy
Sample Pt,
HP,Cg
(Male/
Female)
Mean
Age and/or
Range
(Sex)
Rodriguez et al57 (United States)M+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
53Y87
Rogers et al58 (United Kingdom)M+Congruity between methodology
and well-described method
UI Purposive27Pt(20/7)69
j Low proportion of women in
sample;examples of emergent
themes are not provided
38Y94
Scott59 (United States)M+Congruity in research methods,
questions,data analysis,and
interpretation of results
SSI Convenience20Pt(NR)71.3
Cg only j Study is more quantitative than
qualitative;researcher position
not stated
18Cg(NR)
Scotto60 (United States)L+Congruity between research
methods and research questions
SSI Convenience14Pt(9/5)63
j Analysis seems superficial;
themes seem to reflect nursing
theory,not data;purports to
be phenomenology but the
process followed is generic
interpretive descriptive
42Y84
Scotto61 (United States)H+Congruity in methodological
approach;clear conceptualization
of self-care and sampling rationale
SSI Convenience14Pt(9/5)63 j None identified
42Y84
Seto et al62 (Canada)L+Provides sample interview
questions and detailed
demographic characteristics
of participants
Survey;SSI Convenience94Pt(74/20)54.6
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
Sloan and Pressler63 (United States)H+Focus on cognitive impairment is
unique;congruity between
theoretical/philosophical
perspectives and data analysis
SSI Purposive12Pt(10/2)43Y81
j Sample is literate and socially
supported,findings may not be
representative of larger population
Stromberg et al64 (Sweden)H+Congruity between methodology
and data collection methods
SSI Purposive25Pt(17/8)46Y93 j Interview questions use sophisticated
language,which may not be
understood by participants;
superficial examples might have
more complex interpretations
Stull et al65 (United States)M+Congruity between theoretical
framework(interactionist
perspective)and data analysis
and interpretation
SSI Convenience21Pt(17/4)61
128Journal of Cardiovascular Nursing x March/April2015
TABLE Quality Appraisal and Methodological Descriptions of Included Studies(n=47),Continued
Author (Study Setting)Quality
Rank
(L/M/H)
Main Strengths(+)and
Weaknesses(j)Method/s
Sampling
Strategy
Sample Pt,
HP,Cg
(Male/
Female)
Mean
Age and/or
Range
(Sex) j Triangulation of data in analysis is
not apparent
29Y79
Tierney et al66 (United Kingdom)M+Participants were recruited from
multiple sites;team-based
approach to analysis enhances
trustworthiness of the findings
SSI Purposive22Pt(15/7)68.9
j Sample is mostly male;unclear
why patients with NYHA class
IV were excluded
53Y82
Van der Wal
et al67 (Netherlands)M+Identifies specific,practical issues
into supporting self-care
SSI Purposive15Pt(9/6)70 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
42Y87
Weierbach68 (United States)M+Congruity in research methods,
research questions,data
analysis,and interpretation
of results
SSI;case
note
review
Convenience20Pt(9/11)74.6
j Discussion is brief and seems
superficial
65Y90
Winters69 (United States)L+Specifies a theoretical framework SSI Purposive22Pt(15/7)70 j Limited description of analysis
procedures;limited representation
of participants;themes not
supported by illustrative quotes
38Y88
Wu70 (United States)L+Basic interpretive descriptive
approach;participants are
adequately represented in
the results
SSI;structured
interviews
Convenience;
purposive
16Pt(9/7)60.4
j Interview guide is specific and
directed;themes seem simplistic
41Y84
Wu et al71 (United States)M+Clear description of sample and
methods;conclusions seem to flow
from the analysis/interpretation
of data
SSI Convenience16Pt(9/7)60.4
j Limited description of setting and
recruitment strategies;reliance
on convenience sampling
41Y84
Zambroski72 (United States)H+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
SSI Purposive11Pt(5/6)67
j Several interview questions
provided but entire interview
guide not included
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.
Review of Patient Heart Failure Self-care Strategies129
hopelessness I I’m not capable of doing the walking that
I used to do I I feel a sense of inadequacy I;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 didn’t 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 strate-gies,may also have a positive influence on self-care.For example,patients report increases in vigilance of symp-tom monitoring and adherence to following advice from the healthcare team in response to feelings of anxiety,56 fear of dying,35or fear of hospitalization.49,64,77It was not clear in the reviewed studies if patients were aware that such behaviors were congruent with self-care recom-mendations and/or engaged in these behaviors intermit-tently or continuously.
Action-Based Self-care Strategies
An action-based self-care strategy represents as an ad-justment of daily tasks or lifestyle to maintain inde-pendence and quality of life.31,32,41,60,68For example, some patients addressed feelings of uncertainty by learn-ing how to monitor and respond to their symptoms and developing a relationship with their primary HCPs.69 Others would develop action-based strategies that inte-grated HF management into their everyday life routines to improve self-care.54,61,67Many patients describe action-based 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 strate-gies as a normal part of their daily routine.51,52,60One patient describes deliberate actions to continue em-ployment while living with HF:
I pack my lunch and I usually exercise at lunch by walking3miles.My coworkers walk with me I. Sometimes I do delay my Lasix A pill,but only by2hours
if I have a morning conference meeting I.Managing my heart failure is extremely important,extremely important I.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 fluctua-tions 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 don’t get up
that early,and often I forget to take it,Even though I’ve 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 orga-nizing medications,buying groceries and preparing meals according to dietary guidelines,monitoring symptoms,and navigating the healthcare system as needed.27,40,42,43,45,51Y53,55,56,59,63,74,75,79Although 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 care-giver help.36
One patient explained:
I was a little bit afraid of everything but then my kids and the husband was so helpful so I educate your own family about[heart failure]I cause they know what’s going on and help me with the food,with the exercise I I think it’s better.45(p286)
Self-care Strategies;Observable or
Hidden Work
In general,engaging in self-care requires both perception-based and action-based strategies and was often de-scribed by patients in the context of adapting to stressors associated with living with a chronic condition.How-ever,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,well-planned,and deliberate self-care action strategies that could be observed by others.31,32,53Daily activities were modified to control symptoms,including bathing,68 grocery shopping,35cleaning the house,27meal prepa-ration,27,45,52,67and 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 I’ve 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 deci-phering symptoms and deciding on and evaluating a course of action in response to symptoms.45,47,72The following is an example of the thought process of an HF patient who is trying to interpret symptoms of short-ness of breath:
I think it is really asthma,but it acts somewhat(pointing to heart)I But that’s not my trouble.Cause my heart never acted like this when I had the asthma.It wasn’t this feeling you can’t catch your breath I it’s short,the shortness I I could always do something for my asthma.
130Journal of Cardiovascular Nursing x March/April2015
This don’t clear up.It clears up some I when I had asthma I could get up and dress and go to church I I had the asthma attack,but they would kind of go away.But this doesn’t.I’m relieved some,but it’s never like with asthma I No it’s not like asthma all together,but it’s 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 pa-tients 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 them I used this method for years,and it just seems to work and that’s why I continue it.75(p8)
Self-care decisions could also reflect emotional re-actions to previous HF experiences.This patient de-scribed the reason for occasionally missing his diuretic dose:
I don’t take my Lasix when I am going out somewhere,I can’t always get to a bathroom quick enough I.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.43,44,74On the other hand,other patients sought early advice for worsening symptoms to avoid the fear they described with acute decompensation.43Finally,some patients reported a balancing act of attitudes where they pondered be-tween both positive and negative self-care choices that were based on lessons learned from previous experi-ences.32,67The following is an example from Hoyt: Dorothy had experienced what she described as the ‘‘catch22.’’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 de-scribed 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.38,47This often involved meticulous note-taking,analysis,and‘‘juggling’’of both medica-tions and daily activities and contributed to informal knowledge as patients made connections between medi-cations and symptoms they experienced.38,47,58How-ever,not all patients felt comfortable sharing this information with their healthcare team members be-cause 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 at2the 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 trans-lating 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.76For 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 con-tent 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 appar-ent 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 individual’s life can be pro-found,81and patients often mobilize resources to over-come these life-changing experiences in an effort to Review of Patient Heart Failure Self-care Strategies131
achieve control,maintain independence,and improve their quality of life.In this context,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.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 empir-ical action-based definition of self-care.Although the empirical literature does appreciate the potential impact of emotions and coping on self-care,7findings from our meta-synthesis highlight the comprehensive approach that HCPs need to assume when helping patients im-prove 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 pa-tients 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 self-care 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 self-manage their HF,their ideas and knowledge from pre-vious 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 mem-bers.Therefore,HCPs need to encourage and promote discussions,and coach patients to initiate self-care strat-egies 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 hospi-talization provide a useful opportunity to assess what seems to work or not work within patients’actual self-care practice.As adults,experiential learning is often more effective than abstract thinking,82and 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 non-compliance.Exploring the actions and perceptions of such self-care clinical trials with HF patients creates an opportunity for adapting self-care activities to pa-tients’current situations and helps patients learn more about the why and how of their HF self-care.Fur-thermore,focusing on the positive learning rather than maladaptive decision making within a clinical trial will contribute to building patient self-confidence and effi-cacy,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 inter-ventions for promoting self-care in HF patients,it is critical that individualized instruction include help-ing patients understand the how and why of self-care within their personal life situation.Healthcare practi-tioners 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 chal-lenges 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 indi-vidualizing patients’symptom experience and man-agement.For example,if individuals know that‘‘when their ring gets tight’’they need an extra diuretic,teach-ing them to check for pedal edema is not helpful if they do not experience pedal edema with an HF exacerba-tion.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 deci-pher their unique and early symptoms of HF exacer-bation 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 emo-tional feelings of their situation.Through reflective listening techniques,87HCPs can raise patient aware-ness of the objective and subjective features that predom-inated in the patient’s 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
132Journal of Cardiovascular Nursing x March/April2015
self-care of HF,especially in relation to timely help-seeking from the appropriate sources.Importantly,these approaches prioritize the patients’experiences and strat-egies as opposed to reiterating self-care tasks and recom-mendations.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 in-cluded studies.Although a number of studies in this review are based on naturalistic decision-making theory, many studies lacked a theoretical approach to under-standing these multifactorial and complex behaviors. This is an important weakness because health behav-iors,including those associated with HF self-care,can be conceptualized in a variety of ways depending on underlying assumptions about the nature and determi-nants of this behavior.If HF self-care is viewed in more complex terms as being both an outcome and a natu-ralistic process,that is then a process influenced by personal and contextual factors.Theoretical and meth-odological approaches to understanding this conceptu-alization 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 pa-tients 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 individual-ized approach for helping HF patients develop the nec-essary 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 un-derstated.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 care-givers as they strive to improve clinical outcomes in this high risk population.
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