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A Systematic Review of Patient HeartFail ure Sel f-care Strategie s

Article in The Journal of cardi ovascular nursing · M arch 20 14Impact Fac tor : 2.05 · DOI: 10.1097/JCN.0000000000000118 · Source: PubM ed

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Melisa A SpalingUniversity of Alberta

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Kay CurrieGlasgow Caledonian University


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Patricia Strachan

McMaster University


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Alexander M Clark

University of Alberta

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Journal of Cardiovascular NursingVol. 00, No. 0, pp 00 Y 00 x Copyright B 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins

A Systematic Review of Patient Heart Failure

Self-care StrategiesKaren 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 withHF express difficulty with translating self-care knowledge into understanding ‘‘how’’ to engage in these activities andbehaviors. 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 highlightstrategies 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 aqualitative component and data pertaining to self-care of HF from adults older than 18 years and be published as fullpapers/theses beginning 1995. Ten databases were searched until March 19, 2012. Results: Of 1421 papersidentified by the search, 47 were included. Studies involved the following: 1377 patients, 45% women, meanage of 67 years (range, 25 Y 98 years), 145 caregivers, and 15 HCPs. Approaches to self-care reflected bothperception- and action-based strategies and were a means to effectively manage HF. Although HF patients oftenexpressed difficulty on how to integrate self-care recommendations into their daily lives, they developedintentional, planned strategies that harnessed previous experiences. Conclusions: Healthcare providers mustappreciate that patients view self-care as an ‘‘adaptation’’ that they undertake to maintain their independence andquality of life. In addition, HCPs must recognize that because self-care is a process of learning over time fromexperience, an individualized approach that emphasizes how to self-care must be adopted for patients to developthe necessary HF self-care skills.

KEY WORDS: heart failure, meta-synthesis, self-care

Background

What strategies do patients use to self-care for heartfailure (HF)? Although this self-care should be focusedaround particular types of tasks or domains (includingweight monitoring, taking multiple medications, symp-tom management, physical activity, smoking cessation,and diet restriction), self-care is also recognized to bea complex process. For example, a common approachconceives self-care in HF as ‘‘the decisions and strat-

egies undertaken by the individual in order to maintainlife, healthy functioning, and well being.’’ 1(p364) In thiscontext, HF self-care can be conceptualized not onlyas an outcome that can be measured 2,3 but also as acomplex naturalistic process. 4 Y 7 This is corroboratedby the recent American Heart Association ScientificStatement which views HF self-care in terms of ‘‘natu-ralistic decision-making’’ to emphasize that self-care isa process, undertaken in the real-world setting, influ-enced by individual, contextual, and situational factors. 8

Understanding strategies that patients use to engagein self-care recommendations is important because thissyndrome causeswidespread andavoidable personal suf-fering and contributes to unsustainably high healthcare

1

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, MEdResearch Assistant, Faculty of Nursing, University of Alberta,Edmonton, Alberta, Canada.Kay Currie, PhD, RNReader, School of Health & Life Sciences, Glasgow CaledonianUniversity, Scotland, United Kingdom.Patricia H. Strachan, PhD, RNAssociate Professor, School of Nursing, McMaster University,

Hamilton, Ontario, Canada.Alexander M. Clark, PhD, RNProfessor, Faculty of Nursing, University of Alberta, Edmonton,Alberta, Canada.Dr Harkness is supported by a Research Early Career Award with theHamilton Health Sciences, Ontario, Canada.This study was funded by the Canadian Institutes of HealthResearch-Knowledge Synthesis Grant 2010.Supplemental digital content is available for this article. Direct URLcitations appear in the printed text and are provided in the HTMLand PDF versions of this article on the journal’s Web site(www.jcnjournal.com ).

CorrespondenceAlexander M. Clark, PhD, RN, Level 3, Edmonton Clinic HealthAcademy, 11405 87 Avenue, Edmonton, AB, Canada T6G 1C9([email protected]).DOI: 10.1097/JCN.0000000000000118

Copyright © 2014 Wolters Kluwer Health | Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

http://www.jcnjournal.com/mailto:[email protected]:[email protected]://www.jcnjournal.com/

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costs. 9 Heart failure is associated with high mortality,frequent hospitalizations, and an economic strain onthe healthcare system. 9 Heart failure is extremely com-mon as it affects a large and growing proportion of theageing population in high-income countries. 10 In theUnited States, approximately 5.7 million people haveHF, with more than 500 000 newly diagnosed cases

each year.10

Furthermore, HF also places a heavy finan-cial burden on the healthcare system and is one of themost costly chronic conditions in developed countries. 9

It is estimated that the cost of HF consumes between1.1% and 1.9% of total healthcare spending in devel-oped countries, with 50% to 74% of the HF costs attri-buted to hospitalizationor long-term institutional care. 9

Strategies to improve clinical outcomes and decreasethe burden of HF are clearly needed.

Consensus guidelines for the treatment of patientswith HF from North America and Europe state thatself-care isa keycomponentofdailyHFmanagement. 11 Y 13

However, despite this importance, most patients havedifficulties with engaging in the necessary activities rec-ommended in the clinical guidelines. Current evidencehas identified various personal, psychosocial, and con-textual factors that influence self-care 8,14 Y 19 ; however,the strategies that patients and caregivers use to enactself-care recommendations are less understood. Insightthat goes beyond the known facilitators and barriers toself-care andextends to understanding the strategies thatpatientsdevelop toengage in self-care is required to helphealthcare providers (HCPs) better understand the self-

care needs of HF patients. Generation of such knowl-edge is best suited for a qualitative research design 20

because qualitative research methods examine the com-plexities of self-care processes and behaviors as theyoccur in natural settings from the perspectives of thoseengaged in care and can then capture the ‘‘insider’’perspectives of those most closely involved. 21 This im-portant, yet currently untapped, body of knowledge iscritical to improving understanding about the natureand 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 exploringself-care needs in HF to highlight the strategies thatpatients use to accommodate self-care recommenda-tions into the reality of their daily lives.

MethodsThis 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-synthesishas been used to understand various aspects of healtharound disease management 22,24 and, importantly, isnot 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 researchof HF because studies are often framed in general terms(eg, ‘‘patient experiences’’) but may contain themes anddata 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-methodsdesigns, contain population-specific data or themes fromadults older than 18 years, reasonably seen to pertain toself-care, be published in the English language, and bepublished as full papers/theses during or after 1995. Thesearchstrategy combinedgeneral andspecific terms relat-ing to HF and qualitative design and was used to searchthe following databases until March 19, 2012: Ovid

MEDLINE, Ovid EMBASE, Ovid PsycINFO,CSASocio-logical Abstracts, OvidAARPAgeline, EBSCO AcademicSearch Complete,EBSCO CINAHL, EBSCO SocINDEX,ISI WebofScience, and Scopus. A comprehensive range of terms and synonyms associated with HF were used alongwith a filter designed to identify the full range of quali-tativemethods (See Table SupplementalDigital Content 1,http://links.lww.com/JCN/A6 ). We also searched ProquestDissertations and Theses database, scanned the referencelists of recent papers, and consulted with colleagues.

All papers identified by the systematic search werescreened for relevancy first by their titles/abstract.Papers that seemedto be potentially relevant were thenfull-text screened against the inclusion criteria (Figure).

FIGURE. Flow of studies from identification to inclusion.HF indicates heart failure.

2 Journal of Cardiovascular Nursing x Month 2014


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The meta-synthesis approach of Noblit and Hare 25

was used to synthesize data from relevant studies. Thisinterpretive approach to synthesis involved first extract-ing verbatim data or themes related to self-care fromstudies into a paper-based matrix. Before commencingthe review, self-care was defined as the decisions andstrategies undertaken by the individual to maintain life,

healthy functioning, and well-being.1(p364)

To supportconsistent interpretation among theteam, data or themeswere interpreted to be relevant if ‘‘findings related to anyprocess, phenomena, or construct that pertains to theself-care of HF in patients or support of self-care by laycaregivers 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 betweenconcepts identified in the findings from the matrix.Second-order interpretations of common or reoccurringconcepts were derived, noted comprehensively, and in-terpreted in the context of study quality and setting.The main concepts identified during the second stagewere then used to reinterpret each paper and reconsiderthe relationships between the papers. The results of thissynthesis are the findings of the review.

The quality of all included studies was assessed usingthe criteria from the Critical Appraisal Skills ProgrammeQualitative Appraisal Tool 25 (See Table, SupplementalDigitalContent2, http://links.lww.com/JCN/A7 ). Studieswere ranked low, moderate, or high quality based on keymethodologicalquestions fromtheCriticalAppraisal SkillsProgramme toolbut were not excludedonthe basis of low

quality. Both screening and quality appraisal involvedindependent assessment by two reviewers and any dis-agreements were resolved by discussion among the re-search team.

ResultsSearch Results

Of 1421 papers identified (Figure), 47 met the criteriafor inclusion in the reviewof patients’self-care strategies(Table). Main reasons for exclusion were that papers

did not contain data on HF self-care or did not have aqualitative methodology. Studies involved1377 patients(45% women; mean age, 67 years; age range, 25 Y 98years), 145 caregivers, and 15 HCPs. With some excep-tions, populations were predominantly white and urbandwelling. Most studies were conducted in the UnitedStates (n = 25), and overall, study quality was mod-erate (n = 30), with common study weaknesses beingsuperficial analyses of themes, overreliance on conve-nience sampling, and insufficient description of samplecharacteristics (Table).

Patients used various strategies to accommodate self-care recommendations and HF into the reality of theirdaily lives. In general, engaging in self-care required

both perception-based and action-based strategies andwas often described by patients in the context of adapt-ing to stressors associated with living with a chroniccondition.Furthermore, strategies were complex, inten-tional, andplanned, andrepresentedcoherent approachesundertaken 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 onboththeir physical capabilities and sense of self. 28,41,50,57,65

Patients often go through a phase of acceptance andadjustment as they have to modify their expectationsabout life, adjust their lifestyles to HF, and place HFin some context. 65 In response to stressors experiencedby HF patients, coping mechanisms and resources aremobilized and can subsequently influence patient self-care strategies. 73 Coping mechanisms found to facil-itate or interfere with engagement in self-care fell intotwomainstrategicapproaches:a perception-basedstrategyor action-based strategy.

A perception-based strategy can be described as acognitive, emotional, or psychosocial response to helpadjust or cope with living with the chronic condition,leading to a gradual redefinition of the self and enablinga person to get on with life. 30,52,65 Many patients withHF accepted that it was possible to maintain a goodquality of life, although this often required a reeval-

uation of what they truly valued.27,29,36,59,69

This typeof strategy may be embedded in perceptions that reflectculturalbeliefs,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. 61 Hecontinued to miss family events that were importantto him because of worsening HF. This loss brought himto consider his personal value of family involvementand acceptance of his HF; this supported subsequentself-care behaviors. 61 Another person shared his strat-egy for engaging in self-care in terms of the self-helpprinciples in the context of ‘‘going to AA; the TwelveSteps. You have to accept, I have a problem I have todo something about, and start doing it.’’ 41(p162)

Some patients reported perception-based strategiesthat seemedas a rejection ofself-care, such asdenying 35,59

or ignoring symptoms 53 and smoking or binge eat-ing. 43,46,72 For example, one person described an emo-tional reaction and its impact on adherence to dietaryrestrictions,

Considering how I used to be and now I that has changed

drasticallyI

. I findit very hardsometimes to deal withI

it’svery emotional. This morning after I got into the officefor a while I just, uh, cried for a little bit, a sense of

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TABLE 1 Quality Appraisal and Methodological Descriptions of Included Studies (n = 47)

Author(StudySetting)

QualityRank

(L/M/H)Main Strengths (+) and

Weaknesses ( j ) Method/sSamplingStrategy

Sample Pt,HP, Cg(Male/

Female)

MeanAgeand/or

Range(Sex)

Bennettet al26

(United States)

M + Congruity between researchmethodology, data analysis,

and interpretation of results;detailed description of analysisprocedures

FG Convenience 23 Pt (16/7) 60 Pt only

j Did not provide sufficient samplecharacteristics (NYHA class, agerange); difficult to assess thegeneralizability of the analyses

18 Cg (17/1)

Boren 27

(United States)H + Congruity between research

methodology and interpretationof results; strong groundedtheory approach

SSI Convenience 15 Pt (0/15) 28 Y 76

j Discusses not only data collectedin the study data but also datacollected within the author’s

nurse practiceBrannstromet al28

(Sweden)

M + Detailed presentation of themesand subthemes; participantsare adequately represented inthe themes/findings

UI Convenience 15 HP (11/4) 37 Y 65

j Participants recruited from singlesite; limited description of dataanalysis

Buetowet al29

(New Zealand)

L + Data analysis procedures are welldescribed; large sample size

SSI Convenience 62 Pt (NR) NR

j Difficult to generalize results;lacks description of sample andrationale for sampling strategy

Costello andBoblin30

(Canada)

M + Congruity between researchmethods and data collectionprocedures; analysis done by2 researchers

SSI Purposive 6 Pt (3/3) 30 Y 73

j Small sample size; analysis andinterpretation of results seemsuperficial

6 Cg (NR)

Dickson et al31

(NR)M + Congruity between conceptual

basis for study, researchmethodology, theoreticalframework, and interviewmethods

SSI; survey Purposive forNYHA II orIII, youngerage

41 Pt (26/15) 25 Y 65

j Sample may be too small to drawconclusions about typology;

analysis procedures describedbut not illustrated

Dickson et al32

(NR)M + Clear conceptual basis for study;

integration of qualitative andquantitative findings

SSI; survey Purposive 41 P t (26/15) 49

j Small sample size limits strengthof quantitative evidence; samplepredominantly white, male

25 Y 65

Dickson et al33

(United States)M + Congruity between research

methodology and methods;detailed description of dataintegration and triangulation; useof a theory-driven interview guide

SSI; survey Purposive 30 Pt (18/12) 59.6

j Lack of researcher reflexivity;very few

sample interviewquestionsprovided

26 Y 98

(continues)



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TABLE 1 Quality Appraisal and Methodological Descriptions of Included Studies (n = 47), continued


QualityRank




Female)

MeanAgeand/or

Range(Sex)

Europe andTyni-Lenne34

(NR)

L + Qualitative approach gives voice tomen’s experiences of livingwith HF

SSI Convenience 20 Pt (20/0) 59

j Lacks theoretical framework (eg,no explicit useof gender theory);quote identifiers are not used soit is difficult to know if thesample is adequately represented

43 Y 73

Falk et al35

(Sweden)M + Clear description of data analysis;

provides sample data for allmain categories

SSI Purposive 17 Pt (12/5) 72

j Interview questions not provided;illustrative quotes are sometimesrather mundane

55 Y 83

Freydbergetal 36 (Canada)

M + Strong rationale for theoreticalframework; detailed descriptionof sample recruitment, datacollection, analysis procedures,and limitations indicative of rigor

SSI Purposive 42 Pt (NR) 76

j Authors state that the interviewguide was informed by currentguidelines yet this is notapparent in findings

30 Cg (NR) 65 Y 85

68 Pt onlyGary37

(United States)M + Theoretical framework informs

interview questions; providesquotes and frequency countsfor each topic

SSI Convenience 32 Pt (0/32)

j Interview guide may limit

qualitative data generation;unclear how representative thedata are of the sample

Glassman 38

(United States)M + Detailed systematic research

approach; use of independentauditor to verify transcripts

UI Convenience;purposive

5 Pt (3/2) 77.2

j Small sample; quotes seem todraw from few participants;data seem repetitive

60 Y 85

Granger et al 39

(United States)M + Congruity between theoretical

framework and interview guideand approachto analysis; uniquefocus on patient-physician dyads

SSI Purposive 6 Pt (5/1) 58 Pt only

j Findings seem to be congruent

with data collection and analysis,yet there are little patient data tosubstantiate results

6 HP (3/3)

Helleso et al40

(Norway)M + Basic interpretive descriptive

approach; rationale for datacollection approach

SSI Convenience 14 Pt (6/8) 79.6

j Sample not well described; quoteidentifiers not used; themesseem superficial

71 Y 93

Hopp et al 41

(United States)M + Detailed descriptions of data

analysis strategies ensuretrustworthiness; focus onunique population (ethnicminority)

FG;interviews Convenience 35 Pt (NR) 74.3

(continues)



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QualityRank




Female)

MeanAgeand/or

Range(Sex)

+/ j Interview guide appended yetit is unclear if questions were

piloted or how they werederived (eg, from the literature)

9 60 Y 93

Horowitz et al 42

(United States)H + Robust theoretical framework;

rigorous sampling methods;detailed description of analysisand sample characteristics;recommendations andconclusions seem to flow fromthe interpretation of the data


j None identifiedHoyt43

(United States)H + Congruity between iterative

research process and creativeapproach to analysis; patientdemographics are well described


j Sampling seems to beconvenience not purposive

50 Y 81

Jurgens et al 44

(United States)L + Congruity between methodology

and mixed methods used tocollect data


j Participants are not adequatelyrepresented (limited qualitativedata presented), small samplesize limits the generalizabilityof the quantitative data

Kaholokulaet al45 (UnitedStates)

L + Focus on ethnic minority groupsliving with HF; rationale for useof theoretical model

FG Convenience 11 Pt (5/6) 65.9 Pt

j Findings/discussion does not

adequately represent caregiverparticipants; does not adequatelydescribesample (NYHA class, agerange), research questions notstated; does not report ethicalapproval of the study

25 Cg (4/21) 50.5 Cg

Lough 46 (NR) M + Congruity between themethodology and data analysis;novel conceptualization of HFself-care as work


j Researcher position not stated

66 Y 91

Mahoney 47

(United States)M + Congruity between methods and

analysis of data; participantsselected from multiple sites;

use of a pilot study

SSI Purposive 16 Pt (12/4) 67.7Pt only

j Conclusions seem somewhatsimplistic

12 Cg (NR)

Mead et al 48

(United States)M + Congruity between research

questions and data collectionmethods; very large samplesize; patients recruited frommultiple sites; participants areadequately represented in thedata through illustrative quotes

FG Convenience;purposive

387 Pt(84/198:

105 sex notdescribed)

41% Q65

j Lack of age- or sex-baseddescriptive analysis

Meyerson andKline49 (United

States)

M + Research design and overall studyare well described

Writtenanecdotal

records

Convenience 27 Pt (NR) 75

(continues)



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QualityRank




Female)

MeanAgeand/or

Range(Sex)

j Conclusions/findings are based onanecdotal records written duringan HF self-care intervention; thestudy would likely be morerigorous if interviews had beenconducted with patients totriangulate the case note data

Ming et al 50

(Malaysia)M + Sufficient description of sample;

patients seem to be adequatelyrepresented (via use ofsupporting quotes fromparticipants)

SSI Purposive 20 Pt (15/5) 56.5

j Theoretical basis not described;the interview guide or sampleinterview questions are notprovided

27 Y 75

Reid et al51(UnitedKingdom)

H + Congruity between the researchmethodology and data collectionmethods; large sample size


j Patients recruited from outpatientHF clinics (these patients mayalready be receiving support formedication management)

29 Cg 41 Y 80Pt only

Rerkluenrit et al 52

(Thailand)M + Congruity between grounded

theory approach and datacollection and analysis methods;participants are adequatelyrepresented; good use ofillustrative quotes

SSI Purposive;theoretical

35 Pt (19/16) NR

j Despite use of grounded theoryapproach, authors do notidentify a core variable

Riegel andCarlson 53

(United States)

M + Basic interpretive descriptivedesign and approach to analysis

Structuredinterviews;FG

Convenience 26 Pt (17/9) 74.4

j Unsure about rigor of qualitativedesign; minimal description orinterpretation of quotesprovided for themes

59 Y 91

Riegel et al54

(United States)H + Congruent methodology, data

analysis, and interpretation ofresults; theory-driven purposivesampling

Structuredinterviews

Theoretical 29 Pt (18/11) NR

j Lacks information on age andnumber of participants inNYHA class III or IV

Riegel et al55

(Australia)M + Congruity in mixed-methods design

and triangulation of qualitativeand quantitative data


j Participants are not adequatelyrepresented in results (limiteduse of quotes)

Riegel et al56

(Australia)M + Congruity in mixed-methods

approach; detailed stepsindicate rigorous design


j Lowproportionofwomen in sample;qualitative themes seem to drawupon quantitative results

35 Y 94

M SSI Convenience 25 Pt (24/1) 70.4

(continues)



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QualityRank




Female)

MeanAgeand/or

Range(Sex)

Rodriguez et al 57

(United States)M + Discusses intercoder reliability;

patient sample is representative

of whole NYHA spectrumj Sample is largely men and white

and was predetermined (notbased on thematic saturation);description of data analysisprocess lacks details

53 Y 87

Rogers et al 58

(UnitedKingdom)

M + Congruity between methodologyand well-described method

UI Purposive 27 Pt (20/7) 69

j Low proportion of women insample; examples of emergentthemes are not provided

38 Y 94

Scott 59

(United States)M + Congruity in research methods,

questions, data analysis, and

interpretation of results

SSI Convenience 20 Pt (NR) 71.3Cg only

j Study is more quantitative thanqualitative; researcher positionnot stated

18 Cg (NR)

Scotto 60

(United States)L + Congruity between research

methods and research questionsSSI Convenience 14 Pt (9/5) 63

j Analysis seems superficial;themes seem to reflect nursingtheory, not data; purports tobe phenomenology but theprocess followed is genericinterpretive descriptive

42 Y 84

Scotto 61

(United States)H + Congruity in methodological

approach; clear conceptualization

of self-careand sampling rationale


j None identified

42 Y 84

Seto et al 62

(Canada)L + Provides sample interview

questions and detaileddemographic characteristicsof participants

Survey; SSI Convenience 94 Pt (74/20) 54.6

j Interviews may lack depth giventheir very short duration; nodetails on qualitative dataanalysis;no details on triangulation ofquantitative and qualitative data

Sloan andPressler63

(United States)

H + Focus on cognitive impairment isunique; congruity betweentheoretical/philosophical

perspectives and data analysis


j Sample is literate and sociallysupported, findings may not berepresentative of larger population

Stromberg et al 64

(Sweden)H + Congruity between methodology

and data collection methodsSSI Purposive 25 Pt (17/8) 46 Y 93

j Interview questions usesophisticatedlanguage, which may not beunderstood by participants;superficial examples might havemore complex interpretations

Stull et al65

(United States)M + Congruity between theoretical

framework (interactionistperspective) and data analysis

and interpretation


(continues)



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QualityRank




Female)

MeanAgeand/or

Range(Sex)

j Triangulation of data in analysis isnot apparent

29 Y 79

Tierney et al66

(UnitedKingdom)

M + Participants were recruited frommultiple sites; team-basedapproach to analysis enhancestrustworthiness of the findings


j Sample is mostly male; unclearwhy patients with NYHA classIV were excluded

53 Y 82

Van der Wal

et al67

(Netherlands)

M + Identifies specific, practical issues

into supporting self-care


j The term compliance is dated(addressed by authors) but mayinfluence approaches to datacollection and/or analysis;themes seem to overlap andare very broad

42 Y 87

Weierbach 68

(UnitedStates)

M + Congruity in research methods,research questions, dataanalysis, and interpretationof results

SSI; casenote

review

Convenience 20 Pt (9/11) 74.6

j Discussion is brief and seemssuperficial

65 Y 90

Winters 69

(UnitedStates)

L + Specifies a theoretical framework SSI Purposive 22 Pt (15/7) 70

j Limited description of analysisprocedures; limited representationof participants; themes notsupported by illustrative quotes

38 Y 88

Wu 70

(UnitedStates)

L + Basic interpretive descriptiveapproach; participants areadequately represented inthe results

SSI; structuredinterviews

Convenience;purposive

16 Pt (9/7) 60.4

j Interview guide is specific anddirected; themes seem simplistic

41 Y 84

Wu et al 71

(UnitedStates)

M + Clear description of sample andmethods; conclusionsseemtoflowfrom the analysis/interpretationof data


j Limited description of setting andrecruitment strategies; relianceon convenience sampling

41 Y 84

Zambroski 72

(UnitedStates)

H + Congruity inresearch methodology,methods, and data analysis;strong rationale for creative useof metaphor; participants areadequately represented; use ofillustrative quotes to supportthemes; participants recruitedfrom multiple sites


j Several interview questionsprovided but entire interviewguide 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 YorkHeart Association; Pt, patient; SSI, semistructured interviews; UI, unstructured interviews.



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hopelessness I I’m not capable of doing the walking thatI used to do I I feel a sense of inadequacy I ; Sometimesyou just get fed up and I think that was just a day that Ihad a real down spiraling. I just ate what I wanted. I putsalt on everything and just didn’t care. 54(p239)

Emotional reactions such as anxiety and depressioncanhavea negative impactonengaginginself-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. Forexample, patients report increases in vigilance of symp-tom monitoring and adherence to following advice fromthe healthcare team in response to feelings of anxiety, 56

fear of dying, 35 or fear of hospitalization. 49,64,77 It wasnot clear in the reviewed studies if patients were awarethat such behaviorswere congruentwith 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. 31,32,41,60,68 For example,some patientsaddressed feelings of uncertainty by learn-ing how to monitor and respond to their symptoms anddeveloping a relationship with their primary HCPs. 69

Others would develop action-based strategies that inte-grated HF management into their everyday life routines

to improveself-care.54,61,67

Many patients describe action-based strategies such as learning how to ‘‘pace’’ theiractivities or ‘‘listen to their bodies’’ to help optimize theirability 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. 51,52,60 Onepatient describes deliberate actions to continue em-ployment while living with HF:

I pack my lunch and I usually exercise at lunch bywalking 3 miles. My coworkers walk with me I .Sometimes I do delay my Lasix A pill, but only by 2 hoursif I have a morning conference meeting I . Managing my

heart failure is extremely important, extremelyimportant I . I want to be able to function as normallyas possible and I want to be able to continue to work. 31(p71)

However, it was not clear if these self-care actionstrategies were maintained over time given fluctua-tions in daily life or internal resources (eg, self-care wasseen as tiring). One study reported that patients did gettired of weighing themselves daily and stopped thisactivity, even though they knew they should not. 62

Other studies reported that alterations to establishedlife routines could reduce adherence to medicationregimens. 37,38,60

We have a team meeting every two weeks, and I have tobe there. Bright and early, and I normally don’t get up

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

Action-based strategies also included enlisting thehelp of caregivers for assistance with self-care activities.Caregiver assistance ranged from simple reminding totaking over some of the responsibilities such as orga-nizing medications, buying groceries and preparingmeals according to dietary guidelines, monitoringsymptoms, and navigating the healthcare system asneeded. 27,40,42,43,45,51 Y 53,55,56,59,63,74,75,79 Althoughsome patients felt they did not want to be a burdento caregivers, at the same time they recognized theirinability 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 andthe husband was so helpful so I educate your own familyabout [heart failure] I cause they know what’s going onand help me with the food, with the exercise I I think it’sbetter. 45(p286)

Self-care Strategies; Observable or Hidden Work

In general, engaging in self-care requiresboth perception-based and action-based strategies and was often de-scribed by patients in the context of adapting to stressorsassociated 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 aroundthem.Patients reporteda wide variety of creative,well-planned, and deliberate self-care action strategies thatcould be observed by others. 31,32,53 Daily activities weremodified to control symptoms, including bathing, 68

grocery shopping, 35 cleaning the house, 27 meal prepa-ration, 27,45,52,67 and participating in leisure activities. 66

A patient described her strategy to overcome her poorstamina as she found an efficient way to accomplishimportant tasks so she was not wasting energy:

I do most of the cooking. We live in this house and wehave got this nice roomy kitchen and I’ve got a clerical

chair and I just whip around the kitchen in this clericalchair. It is what I need to do. It works. 27(p78)

Conversely, cognitive tasks associated with self-carewere often unobservable by others. These include deci-phering symptoms and deciding on and evaluating acourse of action in response to symptoms. 45,47,72 Thefollowing is an example of the thought process of anHF patient who is trying to interpret symptoms of short-ness of breath:

I think it is really asthma, but it acts somewhat (pointingto heart) I But that’s not my trouble. Cause my heart

never acted like this when I had the asthma. It wasn’t thisfeeling you can’t catch your breath I it’s short, theshortness I I could always do something for my asthma.



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This don’t clear up. It clears up some I when I hadasthma I could get up and dress and go to church I I hadthe asthma attack, but they would kind of go away. Butthis doesn’t. I’m relieved some, but it’s never like withasthma I No it’s not like asthma all together, but it’ssomething 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 experiencesto guide their ongoing self-care strategies and decisions.Some self-care routines were embedded in action-basedstrategies that were practiced over time. For example,patients would use memory aids or refine daily routinesto determine the best way to help with rememberingcomplex medication schedules. 26,63,70,71,75

I have a basket of prescriptions and I set the basketdown, and I start with one and go around it and takethem I used this method for years, and it just seems towork 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 diureticdose:

I don’t take my Lasix when I am going out somewhere, Ican’t always get to a bathroom quick enough I . I had anaccident when I was out a few months ago and I was soembarrassed I could have died.’’ 37(pp14 Y 15)

Some patients avoided taking action by seeking helpfrom HCPs for signs of worsening symptoms for fearof rehospitalization and often delayed calling untiltheyneeded emergency assistance. 43,44,74 On the otherhand, other patients sought early advice for worseningsymptoms to avoid the fear they described with acutedecompensation. 43 Finally, some patients reported abalancing act of attitudes where they pondered be-tween both positive and negative self-care choices thatwere based on lessons learned from previous experi-ences. 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 andrisk that by the time they would arrive at her home, hersymptoms would have resolved. She was afraid, based onpast experiences, that she would call too soon, and sotended to wait until a crisis to ask for help. Reflecting onan acute emergency requiring ‘‘911’’, or what Dorothy de-scribed as getting in ‘‘big trouble’’, allowed her to recognizeher own cues and decrease risk of recurrence. 43(pp108 Y 112)

During the process of learning, some patients oftenused a variety of strategies to manage and determinethe effects of their medications, such as home-basedlay clinical trials. 38,47 This often involved meticulousnote-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. 38,47,58 How-ever, not all patients felt comfortable sharing thisinformation with their healthcare team members be-cause they may not feel the HCPs would agree withtheir judgments. The following is an example fromGlassman:

One patient described her strategy to improve hertolerance to a medication based on a past experience of symptomatic hypotension that prevented her from goingto work. She stopped the medication for a few days,reintroduced the medication at 2 the prescribed dose andthen slowly titrated the medication depending on howshe felt getting out of bed in the morning. At the sametime, she did not report this to her physician and actually‘‘lied to him about the dose’’ she was taking, as she wastoo embarrassed to disclose her own approach totitrating the medication. 38(p109)

Patients with HF expressed difficulty with trans-

lating self-care knowledge into understanding howto engage in these activities and behaviors. 39,46,62,80

These patient ‘‘lay clinical trials’’ may have reflected anexpert approach to managing their HF for some HFpatients, whereas others may have blindly experimentedwith self-care tasks as an attempt to try and understand‘‘how’’ to self-care. 76 For example, some patients thoughtthat increasing fluid intake when they were ‘‘gettingsick’’ or when they had eaten something salty wouldhelp ‘‘flush out’’ the system and improve symptoms,but in fact, this action could make their symptomsworse. 20(p181) In another study, women who were trying

to lose weight by eating low-calorie meals as a positivehealthy choice were unaware of the high sodium con-tent in these food choices and could make their HFsymptoms worse. 37

I thought I was doing the right thing trying to loseweight, had no idea I was making my heart problemworse. 37(p13)

DiscussionThis meta-synthesis shows that most patients with HF

do want to engage in self-care and go to great lengthsto find ways to practice self-care behaviors. It is appar-ent that they may also have difficulty executing theseself-care behaviors on their own and require effectiveguidance and support from HCPs or and/or caregivers.Three key messages arise from these findings and arediscussed below.

Patients Engage in Perception and Action-Based Strategies

The effect of HF on an individual’s life can be pro-found, 81 and patients often mobilize resources to over-come these life-changing experiences in an effort to



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achieve control, maintain independence, and improvetheir quality of life. In this context, patients define self-care not only by the actual performance of tasks butalso by the emotional reactions and strategies necessaryfor learning how to adapt to living with HF. Resultsfrom our meta-synthesis suggest that ‘self-care need,’ asdefined by HF patients, represents a broader view of

‘‘caring for oneself to help adapt to living with HF’’ andextends to include coping strategies beyond the empir-ical action-based definition of self-care. Although theempirical literature does appreciate the potential impactof emotions and coping on self-care, 7 findings from ourmeta-synthesis highlight the comprehensive approachthat HCPs need to assume when helping patients im-prove their quality of life through self-care strategies.For example, patients may defer seeking healthcare forfear of hospitalization, even though they recognize theearly symptoms of decompensation. Without exploringthe fear underlying the decision, education outlining thetasks for symptom monitoring and management thatincludescontact withHCPsmay not be adopted bysuchpatients. Furthermore, HCPs may need to take a stepback and explore the emotional reactions that HF pa-tients experience before proceeding with interventionsspecifically targeting self-care activities. Helping patientscome to terms with and accepting HF can then facilitateuptake of self-care strategies.

Learning Self-care Is a Process in WhichCumulative Experience is Paramount Most patients do want to learn how to engage in self-care in an effort to decrease uncertainty, regain a senseof 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 infact, may make their symptoms worse. At the sametime, patients may be reluctant or embarrassed to sharetheir action strategies with their healthcare team mem-

bers. Therefore, HCPs need to encourage and promotediscussions, andcoach patients to initiate self-care strat-egies with an agenda that builds trust and encourageslearning. Rather than focusing on the possible problemsthat arose from their self-care decisions, HCPs need toharness these situations as opportunities for learningand growth and highlight the positive learning thatcomesfrom suchattempts.Arguably, more canbe learnedfrom situations in which HF self-care wasnot successfullyundertaken. For example, consultations and/or hospi-talization provide a useful opportunity to assess whatseems to work or not work within patients’ actual self-care practice. As adults, experiential learning is oftenmore effective than abstract thinking, 82 and under-

standing thepatients’ experienceswith HF self-care buildsan excellent foundation for individualizing learningopportunities. Home-based lay clinical trials need tobe regarded as attempts to overcome difficulty with thecurrent 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 moreabout the why and how of their HF self-care. Fur-thermore, focusing on the positive learning rather thanmaladaptive decision making within a clinical trialwillcontribute 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 iscritical that individualized instruction include help-ing patients understand the how and why of self-carewithin their personal life situation. Healthcare practi-tioners need to provide a safe environment for patientsto explore real or potential situations when integratingself-care into their daily life will be difficult. Creativeproblem solving, behavioral strategies, and mutual goalsetting are necessary to help patients overcome chal-

lenges for integrating self-care into their daily routineand 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 ‘‘whentheir ring gets tight’’ they need an extra diuretic, teach-ing them to check for pedal edema is not helpful if theydo not experience pedal edema with an HF exacerba-tion. Often, the early symptoms of HF are subtle andmay 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 attributedto HF. Sometimes, the process of raising awarenessthrough reflection is an unfamiliar skill for patients, 86

and they may need some guidance with identifying thephysical symptoms, environmental features, and emo-tional feelings of their situation. Through reflectivelistening techniques, 87 HCPs can raise patient aware-ness of the objective and subjective features that predom-inated in the patient’s experience of HF symptoms andmanagement strategies. Once these individual patternsof symptom deterioration are identified,HCPs candeviseindividualized algorithms or similar decision aids withpatients, and caregivers when available, to help themnavigate key stages in decision-making processes around



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self-care of HF, especially in relation to timely help-seeking from the appropriate sources. Importantly, theseapproaches prioritize the patients’ experiences and strat-egies as opposed to reiterating self-care tasks and recom-mendations. As such, discussions around self-care andmanagement of HF are more likely to elicit and becongruent with patients’ personal values.

Limitations

As with all reviews, the findings of this meta-synthesisare constrained by the scope and quality of the in-cluded studies. Although a number of studies in thisreview 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, canbe conceptualized in a variety of ways depending onunderlying assumptions about the nature and determi-nants of this behavior. If HF self-care is viewed in morecomplex terms as being both an outcome and a natu-ralistic process, that is then a process influenced bypersonal and contextual factors.Theoretical and meth-odological approaches to understanding this conceptu-alization of self-care are needed which can encompassand unpack this complexity.

ConclusionsIn summary, patient engagement in self-care is at thefoundation for living with a chronic condition such asHF. Healthcare providers need to appreciate that pa-tients regard self-care as an adaptation to living witha chronic condition that they undertake to maintainindependence and quality of life. Healthcare providersneed 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 andnot just the what. We also need to provide a safe andnonjudgmental environment for patients to discuss theirattempts 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 necessarystrategy for patient self-care support cannot be un-derstated. The additional insight into the nature andcomplexity of HF self-care needs gained from thismeta-synthesis of literature exploring the strategies thatpatients 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 inthis high risk population.

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care performance. Nurs Res . 2011;60(2):132 Y

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What’s New and Importanth Patients define self-care not only by the actual

performance of tasks but also by the emotionalreactions and strategies necessary for learning how toadapt to living with HF.

h Self-care is a process of learning, and self-care activitiesare often intentional, planned, and built on previousexperiences.

h Individualized approaches that emphasize how toself-care must be adopted for patients to develop thenecessary HF self-care skills.



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sease_and_stroke_statistics_-_2013_update_A_report_from_the_American_Heart_Association?el=1_x_8&enrichId=rgreq-73778ba8-95ae-42bb-949c-ad544f6b6981&enrichSource=Y292ZXJQYWdlOzI2MDk5NzYwNztBUzoxMDI1MDg5MzIzNzA0MzlAMTQwMTQ1MTQ0Mjc4Mw==https://www.researchgate.net/publication/285742653_On_behalf_of_the_American_Heart_Association_Statistics_Committee_and_Stroke_Statistics_Subcommittee_Heart_disease_and_stroke_statistics_-_2013_update_A_report_from_the_American_Heart_Association?el=1_x_8&enrichId=rgreq-73778ba8-95ae-42bb-949c-ad544f6b6981&enrichSource=Y292ZXJQYWdlOzI2MDk5NzYwNztBUzoxMDI1MDg5MzIzNzA0MzlAMTQwMTQ1MTQ0Mjc4Mw==https://www.researchgate.net/publication/285742653_On_behalf_of_the_American_Heart_Association_Statistics_Committee_and_Stroke_Statistics_Subcommittee_Heart_disease_and_stroke_statistics_-_2013_update_A_report_from_the_American_Heart_Association?el=1_x_8&enrichId=rgreq-73778ba8-95ae-42bb-949c-ad544f6b6981&enrichSource=Y292ZXJQYWdlOzI2MDk5NzYwNztBUzoxMDI1MDg5MzIzNzA0MzlAMTQwMTQ1MTQ0Mjc4Mw==https://www.researchgate.net/publication/285742653_On_behalf_of_the_American_Heart_Association_Statistics_Committee_and_Stroke_Statistics_Subcommittee_Heart_disease_and_stroke_statistics_-_2013_update_A_report_from_the_American_Heart_Association?el=1_x_8&enrichId=rgreq-73778ba8-95ae-42bb-949c-ad544f6b6981&enrichSource=Y292ZXJQYWdlOzI2MDk5NzYwNztBUzoxMDI1MDg5MzIzNzA0MzlAMTQwMTQ1MTQ0Mjc4Mw==https://www.researchgate.net/publication/285742653_On_behalf_of_the_American_Heart_Association_Statistics_Committee_and_Stroke_Statistics_Subcommittee_Heart_disease_and_stroke_statistics_-_2013_update_A_report_from_the_American_Heart_Association?el=1_x_8&enrichId=rgreq-73778ba8-95ae-42bb-949c-ad544f6b6981&enrichSource=Y292ZXJQYWdlOzI2MDk5NzYwNztBUzoxMDI1MDg5MzIzNzA0MzlAMTQwMTQ1MTQ0Mjc4Mw==https://www.researchgate.net/publication/285742653_On_behalf_of_the_American_Heart_Association_Statistics_Committee_and_Stroke_Statistics_Subcommittee_Heart_disease_and_stroke_statistics_-_2013_update_A_report_from_the_American_Heart_Association?el=1_x_8&enrichId=rgreq-73778ba8-95ae-42bb-949c-ad544f6b6981&enrichSource=Y292ZXJQYWdlOzI2MDk5NzYwNztBUzoxMDI1MDg5MzIzNzA0MzlAMTQwMTQ1MTQ0Mjc4Mw==https://www.researchgate.net/publication/285742653_On_behalf_of_the_American_Heart_Association_Statistics_Committee_and_Stroke_Statistics_Subcommittee_Heart_disease_and_stroke_stat

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