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Role of Self-Care in the Patient with HeartFailure

 Article  in  Current Cardiology Reports · March 2012

Impact Factor: 1.93 · DOI: 10.1007/s11886-012-0267-9 · Source: PubMed

CITATIONS

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READS

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6 authors, including:

Debra Moser

University of Kentucky

480 PUBLICATIONS  12,436 CITATIONS 

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Victoria Vaughan Dickson

New York University

86 PUBLICATIONS  1,303 CITATIONS 

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Christopher Sean Lee

Oregon Health and Science University

107 PUBLICATIONS  1,297 CITATIONS 

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Barbara Riegel

University of Pennsylvania

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All in-text references underlined in blue are linked to publications on ResearchGate,

letting you access and read them immediately.

Available from: Barbara Riegel

Retrieved on: 28 May 2016

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CONGESTIVE HEART FAILURE (J LINDENFELD, SECTION EDITOR)

Role of Self-Care in the Patient with Heart Failure

Debra K. Moser   & Victoria Dickson   & Tiny Jaarsma   &Christopher Lee   & Anna Stromberg   & Barbara Riegel

# Springer Science+Business Media, LLC 2012

Abstract  Optimal outcomes and quality of life for patientswith heart failure depend on engagement in effective self-

care activities. Self-care is a complex set of activities andmost clinicians are not adequately prepared to assist their 

 patients to engage in effective self-care. In this paper, we provide an overview of self-care that includes definitions,the importance of self-care to outcomes, the physiologic

 basis for better outcomes with good self-care, cultural per-spectives of self-care, and recommendations for the im-

 provement of self-care. Promotion of effective self-care byall clinicians could substantially reduce the economic and

 personal burden of repeat ed rehospitalizations among patients with heart failure.

Keywords  Self-care . Heart failure . Outcomes .Self-management 

Introduction

Promotion of effective self-care among individuals withheart failure (HF) is vitally important to patient outcomes,yet is one of the most difficult tasks facing clinicians today.Most of the cost associated with the care of patients with HFis the result of rehospitalization for exacerbations of HF[1 – 4], many of which can be traced to failed self-care[5 – 7]. There are multiple modifiable factors known to pre-cipitate hospitalization for HF exacerbation, but the twomost common are nonadherence to prescribed medicationsand diet, and failure to seek timely medical care for escalat-ing symptoms [6, 8 – 14]. Both of these are prime examplesof poor self-care.

Patient nonadherence to recommended self-care activitiesis common [8, 13, 15, 16]. Patients recently discharged from

D. K. Moser (*)University of Kentucky, College of Nursing,527 CON,Lexington, KY 40536-0232, USAe-mail: dmoser@uky.edu

V. Dickson New York University College of Nursing,726 Broadway, #1022,

 New York, NY, USA

e-mail: vdickson@nyu.edu

T. JaarsmaDepartment of Social and Welfare Studies,Faculty of Health Sciences, Linköping University,Linköping, Swedene-mail: tiny.jaarsma@liu.se

C. Lee (*)Oregon Health & Science University,Mail Code: SN-2N, 3455 SW US Veterans Hospital Road,Portland, OR, USAe-mail: leechri@ohsu.edu

A. StrombergDivision of Nursing Science,Department of Medicine and Health Sciences,Faculty of Health Sciences, Linköping University,Linköping, Swedene-mail: anna.stromberg@liu.se

A. StrombergDepartment of Cardiology, UHL, County Council of Östergötland,Linköping, Sweden

B. RiegelUniversity of Pennsylvania, School of Nursing,Claire M. Fagin Hall, 418 Curie Boulevard,Philadelphia, PA 19104-4217, USAe-mail: briegel@nursing.upenn.edu

Curr Cardiol Rep

DOI 10.1007/s11886-012-0267-9

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8/16/2019 role of Self-care HF

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a hospitalization for an exacerbation of HF where they presumably received appropriate self-care education dem-onstrate high rates of diet and medication nonadherence andvery low rates of daily weighing and symptom monitoring[17]. Patients’   ability to recognize symptoms and takeappropriate steps in a timely manner is another area whereself-care commonly fails. The most common symptom

 prompting emergency department visits among HF patientsis dyspnea [11, 18]. Delay time in seeking care can rangefrom more than a week with dyspnea to almost 2 weeks withedema [14].

Self-care is fundamental to the maintenance of phys-iologic stability and quality of life among individualswith HF. Most care activities associated with HF aredone in the home by patients and their families or other informal caregivers. Thus, it is essential that HF patientsengage in self-care, yet most clinicians do not have thetraining to prepare their patients to engage in effectiveself-care. The purpose of this paper is to provide clini-

cians with an understanding of HF self-care so that theycan better assist their patients adopt appropriate self-careactivities.

What Is Heart Failure Self-Care?

We have defined self-care as a naturalistic decision making process of maintaining health through positive health practices (self-care maintenance) and managing illness anddisease (self-care management)   [19]. The positive health

 practices of self-care maintenance include all those behav-

iors traditionally considered under the rubric of treatment adherence. For adults with HF, those behaviors includelimiting dietary sodium, taking medications as prescribed,and monitoring for early indicators of fluid retention withdaily weighing [20,   21••]. As challenging as this is, the

 process of self-care management is even more complex for  patients because it involves decision making. Successfulself-care management requires that patients first recognizetheir signs and symptoms, judge the importance of suchchanges, do something about the changes, and then judgethe efficacy of the remedy initiated. As discussed below,symptom recognition is quite challenging, and this may be

the place where the whole process of self-care management falls apart.

We view the process used by patients in the performanceof self-care as a naturalistic decision making process. Thistheory of decision making focuses on real world decisions,which typically involve dynamically evolving conditions,uncertainty, ambiguity, missing information, time stress, andhigh stakes. These decisions may have ill-defined, shiftingor competing goals. Sometimes multiple individuals areinvolved in the decision making process. The key to

effective naturalistic decision making is experience. Adept naturalistic decision makers use prior experience to quicklyidentify patterns in situations. Once the situation is catego-rized, prior experience is synthesized to guide decisionmaking about the issue at hand. Experience provides arepertoire of patterns that provide relevant cues, suggest expected outcomes associated with specific responses, and

 point to reasonable goals and actions in specific types of situations [22].

Why Is Heart Failure Self-Care Important for Clinicians

to Understand?

The emphasis in medical education is on pharmacologicover behavioral therapies. As a consequence, many clini-cians have not appreciated the impact of behavioral thera-

 pies on patient outcomes. When clinicians better understandthe role that self-care plays in HF outcomes, promotion of 

self-care may become a priority in their practices.Effective HF self-care is associated with a number of 

 positive outcomes, the strength of which can be equivalent to or greater than that seen with drug therapy   [23 – 27].Data from randomized, controlled trials of HF diseasemanagement programs that include promotion of self-careas part of their services demonstrate that rehospitalizationrates and mortality are reduced   [24,   27 – 30]. These out-comes can persist for months to years, particularly wheneducation and other strategies to promote self-care areincluded   [31,   32]. Some trials have not demonstrated aneffect of disease management on mortality or rehospitali-

zation compared to usual care. This may be, in part, due tofailure to include self-care strategies, ineffective use of self-care strategies, or to intervention times too short tosustain an effect.

Examination of specific self-care activities (not imbeddedwithin the context of disease management) further revealsthe positive impact of engagement in appropriate self-careactivities. Objectively measured medication adherence, animportant self-care activity, predicts event-free survival in

 patients with HF [33, 34]. A self-care intervention designedto improve medication adherence in patients with HFresulted in enhancement of self-care abilities and better 

event-free survival compared to usual care [35]. Nonadher-ence to self-care behaviors related to symptom monitoringand exercise was associated with increased risk of HF read-mission and mortality [36]. Patients who report engagement in more appropriate and effective self-care have lower mortality and rehospitalization rates those who report poor engagement in self-care [37••]. In addition, better quality of life, functional status, and lower symptom burden or distressare associated with better self-care abilities or confidence inself-care abilities [38 – 40].

Curr Cardiol Rep

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8/16/2019 role of Self-care HF

4/12

By What Mechanisms Is Heart Failure Self-Care

Effective?

Generally, it is assumed that effective self-care is an essen-tial and adjunctive strategy to evidence-based medical treat-ments in delaying the progression of HF [41]. Severalhypothetical and thus far unexplained mechanisms by which

HF self-care influences health outcomes have been proposed [42]. In concert with the dominant pathogenictheories explaining the progressive nature of HF  [43,  44],emphasis is placed on the potential influence of effectiveself-care behaviors on neurohormonal activation and sys-temic inflammation and the downstream consequencesthereof in this paper (Fig. 1).

Self-Care Maintenance Behaviors

Certain general health and HF-specific self-care mainte-nance behaviors are associated independently with partial

neurohormonal deactivation and/or partial mitigation of sys-temic inflammation. For example, routine exercise trainingis associated with partial neurohormonal deactivation and asignificant reduction in biomarkers of systemic inflamma-tion in adults with HF [45 – 48]. Vaccinations, presumably bylimiting infection, are associated with reductions in the risk of hospitalization and death among adults with HF   [49].Several classes of HF medications target neurohormonalactivation. Thus, taking prescribed HF medications is asso-ciated with reductions in biomarkers of neurohormonal ac-tivation and systemic inflammation [50 – 53]. Although thereare some notable exceptions [54], medication nonadherence

in HF is generally associated with increased risk of clinical

outcomes like mortality and hospitalization   [55]. Despiteour limited ability to provide evidence-based recommenda-tions for dietary restrictions as part of routine self-care  [56],it is a commonly held view that adherence with dietarysodium restrictions is associated with reductions in neu-rohormonal activation. Further, when considered collec-tively, better HF self-care maintenance behaviors are

associated with a decreased likelihood and frequencyof episodes of congestion [57] — the consequence of neurohormonal activation and predominant reason for HF hospitalization   [58,   59].

Self-Care Management Behaviors

The greatest efficacy of HF medications occurs in the ab-sence of clinical congestion [60]. As such, it is likely that 

 patients who recognize and respond to episodes of conges-tion more effectively have optimal benefit from HF medi-cations. Patients who are able to detect and manage subtle

symptoms also may be less likely to require high-dosediuretics that cause increases in neurohormonal activation[61]. The greatest risk for bacterial translocation in HF alsooccurs during episodes of congestion [62]. Thus, recognizingand treating symptoms of clinical congestion early may limit the risk of infection from gut bacteria. Moreover, there isdirect evidence that patients who recognize and respond toHF symptoms more quickly and effectively are less likely tohave levels of neurohormonal activation and systemic inflam-mation that are associated with poor clinical outcomes such asurgent advanced therapies and early death [63].

Importantly, the direct mediating effect of neurohormonal

deactivation/blockade and systemic inflammation between

Fig. 1   Mechanisms by which heart failure self-care influences heatlhoutcomes. The two dominant pathogenic mechanisms that contribute toheart failure progression and associated health outcomes are neurohor-monal activation and systemic inflammation. It is proposed that effec-tive heart failure behaviors improve health outcomes by partiallydeactivating and blocking neurohormonal systems and mitigating sys-temic inflammation. Specifically, general healthy lifestyle behaviors(eg, routine exercise and immunization) and heart failure self-caremaintenance behaviors (eg, medication, dietary adherence, and

symptom monitoring) likely mitigate, in part, neurohormonal activa-tion and systemic inflammation inherent in progressive heart failure.Collectively, better self-care maintenance behaviors are associated withless frequent episodes of thoracic water accumulation — the culmina-tion of neurohormonal activation. Moreover, heart failure self-caremanagement behaviors (eg, effective symptom recognition, evaluation,treatment/treatment evaluation) are associated directly with lower lev-els of biomarkers of neurohormonal activation and systemicinflammation

Curr Cardiol Rep

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8/16/2019 role of Self-care HF

5/12

HF self-care behaviors and health outcomes has yet to besupported empirically; this has been highlighted as an im-

 portant future research priority in the study of HF self-care[41••, 42].

What Heart Failure Self-Care Activities Are Important?

Self-care recommendations largely represent opinion fromexpert consensus groups because nonpharmacological ther-apy has not been a major focus for researchers. Only duringthe last decade has self-care been increasingly recognized asan important component of HF care. Nonetheless, a number of self-care activities appear important to good outcomes inHF and these include the following: 1) becoming knowl-edgeable about the condition; 2) adhering to medicationsand diet recommendations; 3) actively engaging in signs andsymptom surveillance, recognition, and taking appropriateaction; 4) getting exercise; 5) taking preventative actions

such as stopping smoking, limiting alcohol intake, receivingimmunizations; 6) managing comorbidities; and 7) navigat-ing the health care system [41••]. Reducing the neededactivities to a list tends to obscure the complexity involvedfor patients attempting to engage in self-care. To provide a

 better picture of what we are asking patients to do whenwe ask them to perform these self-care activities, refer to Table   1.

The self-care activities outlined are considered appropri-ate in patients with symptomatic HF. However, this is aheterogeneous group, a fact that must be kept in mind byclinicians advising patients on self-care activities. For ex-

ample, many HF patients are elderly and have a number of comorbidities (eg, diabetes, renal failure, arthritis, or chronicobstruction lung disease). Under these circumstances, cog-nitive impairment, lack of social support, and multiple self-care demands from the comorbidities may limit patients’abilities to engage in effective self-care. Thus, recommen-dations for self-care always need to be individualized withattention to severity of HF and prognosis, comorbidities,cognitive ability, psychological state, and social support [21••, 64].

What Affects Patients’  Abilities to Engage in Self-Care?

As suggested, HF patients are not a homogeneous group.Besides differences in etiology of HF, systolic or diastolicdysfunction, and functional status, patients differ in a largenumber of psychological, social, cognitive, and behavioralcharacteristics. These characteristics can have a profoundeffect on patients’  abilities to engage in effective self-care.Clinicians need to be aware of the major characteristicsaffecting patients’ self-care abilities, need to assess for them,

and then need to modify their interactions to take thesecharacteristics into account (Table 2) [41••, 64].

Major characteristics that are known to affect self-careabilities are presence of comorbidities, cognitive impair-ment, depression, anxiety, poor health literacy, social isola-tion and poor social support, low socioeconomic status, andsleep disturbances (Table   2)   [41••,   64]. Clinicians should

have a high index of suspicion for these characteristicsamong their patients as all of these are common in HF,and few patients are expert at HF self-care as a consequence[65].

An International and Cultural Perspective on Heart

Failure Self-Care

The term   “self-care”   is difficult to translate in some lan-guages and in some countries the literal translation of   “self-care” does not mean the same as the definition proposed in

this paper. For example, the word self-care does not exist inthe Italian language and is translated as   “cura di sé,” whichmeans the activities that a person does for him/herself tostay   healthy. In the Dutch language the word self-care(“zelfzorg”) is used; however, this word includes a broader meaning than is meant by   “self-care” in our definition. For example, it is used to define which medications will not bereimbursed by insurance (eg, certain over-the-counter painrelief medicines, nasal sprays). These examples illustrate thecaution that has to been taken in translating a concept intoanother language.

When considering the content of the self-care behaviors

recommended for HF patients, there are many similaritiesinternationally, such as advice regarding diet, exercise, andsymptom monitoring [66 – 68]. However, due to the lack of consensus about specifics of some self-care activities, suchas the amount of sodium to recommend in the diet, specificadvice might differ. Thus, clinicians need to be familiar withtheir appropriate guidelines.

In some countries or cultures recommended self-caremight be challenging due to a lack of resources; for exam-

 ple, salt-restricted or healthier foods may be difficult to purchase or weight scales may not be affordable to all patients [69]. There also might be international differences

related to what is considered an appropriate response toescalating symptoms. For example, in some countries

 patients have access to HF clinics, in other countries patientscan access a cardiologist directly, and in other countries

 patients need to consult primary care providers before theyhave access to a specialist.

Culture is an important context in which to consider self-care behaviors of HF patients. While common issues relatedto HF self-care can be identified across cultural groups,substantial differences also exist. Lower self-care abilities

Curr Cardiol Rep

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Table 1   Activities requiredwithin each self-care activityfor successful engagement inself-care

Major self-care activity Activities required within the major activity

Becoming knowledgeable about heart 

failure

• Knowing that one has heart failure and what the condition

is (and what it is not)

•  Determining how to get appropriate information at an

understandable level

•  Understanding the links between self-care activities and

symptoms•  Understanding the meaning of escalating symptoms

•  Understanding the requirements for self-care

Adhering to medication and diet 

recommendations

• Taking medications as prescribed and usually chronically;

remembering on a daily basis; knowing what to do if 

forget a dose

•  Distinguishing between side effects, adverse effects, and

normal effects

• Knowing not to stop medications without discussing with

care provider 

•  Bearing the potential financial burden of multiple

medications

•  Dealing with polypharmacy

•  Learning how to monitor sodium intake, choose lower-sodium foods, cook lower-sodium foods

•  Learning how to follow a heart healthy diet 

Actively engaging in signs and symptom

surveillance, recognition, and taking

appropriate action

•  Understanding what signs and symptoms to look for 

•  Gaining the knowledge and skills to monitor for 

symptoms and signs, and understanding what to do with

information

•  Knowing when to call the physician or nurse and what 

information to provide them

•  Understanding how to weigh daily and what to do with

the information

•  Working with the physician or nurse to take early action

with escalating symptoms to avoid emergency

department visits or hospitalizationGetting exercise   •  Determining how much, how often, what type

•  Determining how to start if never exercised or are

sedentary

•  Overcoming fears of activity if have injured self in past 

•  Determining how to deal with symptoms with activity

Taking preventative actions such as stopping

smoking, limiting alcohol intake,

receiving immunizations

•  Understanding what preventative actions to take and

when to take them

•  Developing the motivation and soliciting appropriate

support to stop smoking

•  Developing the motivation and soliciting appropriate

support to limit alcohol intake appropriately

Managing comorbidities   •  Managing demands for multiple, sometimes competing,

diets and other self-care activities•  Distinguishing among symptoms

•  Understanding differing self-care needs

 Navigating the health care system   •  Managing transitions in care

•  Managing recommendations and sometimes conflicting

advice from multiple care providers

•  Dealing with lack of communication among multiple

 providers

•   Understanding when to contact who of many providers

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emphasis in other cultures (eg,, Asian, Hispanics) is onfamily interdependence over independence   [70]. Thus, insome countries or cultures self-care might not be an impor-tant concept. In this situation, it is of greater importancewhen a family member is ill, that love and concern aredemonstrated through care and attention from family mem-

 bers and these cultural values must be incorporated into

teaching about self-care. This might also be relevant incultures where collectivist ideals influence adoption of life-style changes, such as in Punjabi Sikh patients.

The cultural meaning of HF may confound an individual’sself-care ability with regard to the recognition, interpreta-tion, and response to escalating HF symptoms. Few studieshave examined symptom recognition in ethnic minorities,

 but we recently demonstrated that the meaning of HF hascultural roots that play a significant role in how individualsrecognize and interpret symptoms [73]. Consistent with ananthropological lens that illness is culturally constructed,ethnic minority black patients perceived and labeled symp-

toms in terms of cultural connotations. For example, therewas a common belief that HF was inevitable among mem-

 bers of this ethnic group or could be attributed to   “stress.”Therefore, participants failed to recognize subtle day-to-daychanges in fatigability or shortness of breath. Rather,recognition of worsening symptoms as related to HFwas delayed until a level of acute distress promptedemergency action.

Complexities of Self-Care

Successful self-care management starts with the early rec-ognition and accurate interpretation of symptoms. Unfortu-nately, patients with HF face numerous challenges insymptom recognition. The reasons for poor symptom rec-ognition are unclear but we do know that age-relatedchanges, comorbid conditions, and situational factorscontribute in important ways to symptom recognition andinterpretation.

Many HF patients are older adults and age appears tocontribute to poor symptom recognition. One explanationfor this difficulty is impaired interoception. Interoception isthe process by which sensory nerve receptors receive and

 process stimuli that originate inside the body [74]. Intero-ceptors include physiological receptors that monitor ongo-ing function of visceral organs and mediate visceral reflexes.Poor interoception may result from a loss of neurons in thecortical regions of the brain (ie, insula and anterior cingu-late)   [75]. When we examined differences in age-relatedsymptom recognition in adults with HF, older adults (≥age73 years) had more difficulty detecting and interpretingshortness of breath and were half as likely as younger adults(

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There are three steps in this process: 1) general assessment concluding whether a task is appropriate for self-care; 2)individual assessment determining whether a patient aloneor with assistance from family or other informal caregiverscan perform self-care; and 3) implementation, includingdocumentation of the assessment and the decision, andwhen to conduct follow-up with a new risk assessment of 

 patient safety.The ethical aspects of self-care should be noted. Self-care

now plays an essential role in many countries worldwide asit is associated with better outcomes and better quality of life. Aspects of integrity and autonomy can be fulfilledwhen an individual has the knowledge, skills, and confi-dence to perform self-care. On the other hand, self-caredemands may lead to guilt, frustration, and burden on thoseindividuals lacking the abilities and motivation to be in-volved in self-care who have not been properly preparedto assume the role. Therefore, self-care advice with poor evidence of benefit should be avoided and self-care activi-

ties should be negotiated between the patient and the healthcare provider.

Self-care may not be feasible for persons with moderateto severe cognitive dysfunction. There is a risk that theconcept of personal responsibility for health and self-carecould lead to marginalization in these individuals instead of empowerment as intended. Self-care definitions and con-ceptualizations should be adapted to meet the needs of 

 persons with developmental, mental, or neuropsychologicaldisorders.

What Can Clinicians Do to Improve Heart Failure

Self-Care?

Promotion of HF patients’ self-care abilities requires activeinvolvement from patients’ clinicians. This may require that clinicians become educated about self-care and about the

 best ways to promote self-care and behavior change. Anexcellent strategy for busy clinicians is to collaborate withan advanced practice nurse who has expertise in self-careand behavior change and share care of HF patients;multidisciplinary care for patients with HF is highlyrecommended  [81].

Excellent information on the State of the Science of self-care in HF can be obtained from the American Heart Asso-ciation scientific statement:  State of the Science: Promoting Self-Care in Persons with Heart Failure: A Scientific State-

ment from the American Heart Association   (available freeonline at   http://circ.ahajournals.org/content/120/12/ 1141.long) [41]. Self-care information is also addressed inthe HF guideline from the Heart Failure Society of America(HFSA) [67]. Both guidelines offer specific strategies for helping patients engage in effective self-care. The European

Society of Cardiology (ESC) described the components of HF disease management that would best support HF patientsat all stages including promotion of self-care [81]. The ESCalso provides patients with an excellent website about HFthat emphasizes self-care. Clinicians can not only learn howto teach self-care to patients by visiting this website, they canrefer patients to it:   http://www.heartfailurematters.org/EN/ 

Pages/index.aspx. The HFSA has a series of patient modulesin which self-care is emphasized that can be found at: http:// www.hfsa.org/heart_failure_education_modules.asp.

The foundation of effective patient education about self-care is providing patients with the skills they need, and not simply the knowledge they need [82]. For example, there isabundant evidence that symptom recognition by patientswith HF is complex and influenced by multiple factors,and improving recognition is not as simple as asking

 patients to monitor for signs and symptoms. Education must enhance understanding of the meaning of HF symptoms andinclude skill-building tactics that improve symptom moni-

toring so that subtle changes in symptoms can be moreeasily recognized (eg, symptom diaries)   [83]. In addition,

 patients need to be taught how to monitor for shortness of  breath, edema, weight gain, and other signs and symptoms.Steps in skill teaching for these and other self-care activitiesare outlined in the American Heart Association ScientificStatement [41••], ESC [68], and HFSA guidelines [67].

Helping patients with HF develop skills in self-care willrequire a shift in the education paradigm. In addition toincreasing knowledge about HF and self-care, interventionsshould include content that supports the development of tactical skills in basic self-care content (eg, preparation of 

low-salt meals). Situational skills that support self-care inunique situations are essential and can be modeled usingrole playing activities. Therefore, clinicians should incorpo-rate hands-on strategies that enhance self-efficacy so that individuals feel confident in their ability to engage in self-care despite obstacles   [82]. In addition, because familymembers (ie, spouse, children, significant others) often playa role in helping patients with daily self-care activities,clinicians should include those individuals in self-careeducation programs whenever possible.

Because promotion of self-care requires behavior change,it is essential that clinicians understand and use those

evidence-based cognitive-behavioral strategies that support  behavior change. These strategies were outlined in a 2010American Heart Association Scientific Statement and in-clude the following: 1) counseling using motivational inter-viewing techniques; 2) goal setting with specific behavioral(vs physiologic) goals and self-monitoring of goals; 3)clinician feedback and reinforcement of behaviors; 4)enhancement of self-efficacy; 5) opportunities for ob-serving modeling of behaviors; and 6) teaching problemsolving [84].

Curr Cardiol Rep

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