Education and Counseling

Self Care. Self-care describes the process whereby a patient participates actively in the management of his or her HF, usually with the help of a family member or caregiver. Self-care includes both maintenance and management.8,9 Self-care maintenance refers to healthy life-style choices (eg, exercising, maintaining a normal body weight) and treatment adherence behaviors (eg, monitoring weight changes, limiting dietary sodium, taking medications, getting routine immunizations). Self-care management is a cognitive process that includes recognizing signs and symptoms, evaluating their importance, implementing a self-care treatment strategy (eg, diuretic administration), and evaluating its effectiveness. Self-efficacy, or confidence in ones ability to perform self-care, has been shown to influence self-care management abilities.10

Lack of knowledge and patient or caregiver misconceptions about how to participate in HF care is common.1,4,11-17 The end result is non-adherence. HF patients, their families, and caregivers undertake the many behaviors involved in the care of HF in settings far removed from oversight by a health care provider. Teaching that emphasizes self-care is therefore a critical component of HF disease management programs.18

Knowledge alone is insufficient to promote adherence and effective self-care. An essential adjunct is skill building with target behaviors.14 Skills needed include the ability to read food labels, adapt preferred foods to low-sodium versions, select low-sodium foods in the grocery store, prepare palatable food with little or no added sodium, track sodium intake, and choose a low-sodium meal in a restaurant. Patients need guidance to develop an individualized system for medication adherence. Symptom management skills include the ability to monitor for and recognize a significant change in signs or symptoms and select an appropriate treatment strategy. Many HF programs advocate a self-directed diuretic scheme for managing significant increases in body weight.19,20

A number of physical, cognitive, social, emotional, and environmental factors can affect an individual's learning ability and should be taken into account when planning education and counseling.1,4,6 Patients often are not adept at communicating potential problems to their health care providers, who therefore must actively assess for them.

At least 20% of adults in the United States (US) cannot read at a fourth- or fifth-grade level.21 Low literacy has been shown to be a major barrier to learning about illness.22 Many patients in the US do not speak or read English.23 Illiteracy and language barriers can be improved by including family members and caregivers in counseling; by using a variety of teaching methods, such as video and group discussion; by translating teaching materials; and by carefully constructing teaching materials at an accessible reading level, usually fifth or sixth grade.

Health literacy, a related but different concept, is also a major problem for patients with HF. Health literacy refers to an individual's ability to understand and act upon health information. In a national survey, only 12% of American adults were considered proficient in health literacy; 22% of adults' health literacy was considered basic, indicating they were able to read simply worded material and solve one-step problems; while another 14% of adults had less than basic health literacy, meaning they had difficulty comprehending even simple instructions.24 Low health literacy is associated with decreased knowledge of one's medical condition,22,25-29 poor medication recall,30 non-adherence to treatment plans,26,28 poor self-care behaviors,22,28,31 compromised physical and mental health,32,33 greater risk of hospitalization,34,35 and increased mortality.36,37

Although the literature specifically addressing issues of low health literacy in patients with HF is limited, it is consistent with the larger body of health literacy literature.38-41 In one study, 38% of patients could not read and understand their own medication bottle labels, and this poor health literacy was associated with increased emergency department use for cardiac related problems.42 To ensure appropriate patient engagement in self-care, it is essential that clinicians treating patients with HF address low literacy by identifying patients at risk, documenting learning preferences, using appropriate teaching materials, and stressing effective communication.

Cognitive impairment is probably more prevalent than recognized in HF patients 43-47 and can seriously affect patients' ability to learn and retain information. Rates of cognitive impairment between 23% and 53% have been documented in community-dwelling elders with HF.43-46 Depression is common in patients with HF, it is a significant predictor of mortality,48-64 and it interferes with learning and successful adjustment to HF.65 HF patients should be routinely screened for depression. (See Section 6, Nonpharmacologic Therapy, for screening guidelines and treatment recommendations).

Although depression is associated with poorer outcomes in HF patients, the treatment of depression has not been demonstrated to improve outcomes.66 Patients with cognitive impairment or depression need the support and assistance of a family member or caregiver. Home health nurses are recommended to assess and assist patients who lack a caregiver. Such patients can benefit from more intensive physician or nurse monitoring.

To screen for depression, a standardized instrument such as the Patient Health Questionnaire-2 score,67 Beck Depression Inventory,68 DISH,69,70 or STOP-D questionnaire71 can be used. Asking patients to read and interpret the instructions from a prescription medication bottle or procedure preparation instructions provides a good literacy assessment.

Effective education and counseling is individualized to what the patient needs and wants to learn, builds on prior knowledge and experience, involves the patient in discussion and skill practice, and provides feedback and reinforcement.72,73 A major difference between patient teaching and formal didactic education is that patient teaching focuses on what patients need to do rather than what they need to know.15

Barriers to Change. HF patients often face barriers when they try to implement recommended behaviors. For example, a lack of social support compromises patient self-care.74 Barriers to medication adherence include medication cost, cost of transportation to the pharmacy and clinic, confusion caused by prescriptions from multiple providers, and pharmacies in unsafe neighborhoods.16,75 Other adherence barriers include medication unpleasantness, difficulty remembering, having to take too many medications each day, restrictions on travel, forgetting, and night-time awakening to urinate.76 Barriers to sodium restriction adherence include time, cost, taste, difficulty understanding the diet, significant others not eating low-sodium food, interference with social obligations, confusion with dietary restrictions from other comorbid conditions, limitations on eating out, and difficulty modifying diet habits.75-77 A common misunderstanding among HF patients is that an increase in fluid intake is necessary to compensate for excess urination.15,77

Readiness to Change. Optimal patient education is more than imparting information. Counseling emphasizes individualized delivery of important information, taking into account factors that interfere with successful participation in care, as well as a patient's readiness to change. Many patients are not ready to engage in the recommended behaviors. According to one model, those in precontemplation are not considering change, those in contemplation are thinking about change but have yet to make a commitment, and those in preparation are planning to change in the future and may have already engaged in some early steps of change.78 Few patients are in the action (change has occurred) or maintenance (change has been maintained for 6 months or more) phases of change, even when the need for behavioral change was stressed by previous counseling. Increasing motivation may be very effective in moving patients from an early stage to an active stage of change.

Internal Motivation. Motivation is an important contributor to successful self-care. Motivational techniques are extremely effective for individuals in the early stages of change. Motivation interviewing, a technique that helps the patient resolve ambivalence regarding change, is effective even in those facing difficult tasks, such as abstinence from drinking or weight loss.79,80 Cognitive-behavioral techniques, which emphasize modifying barriers to change, are also quite useful with patients in the early stages of change.81 Specific techniques have been suggested for moving patients forward in each of the stages of change.82 For example, patients considering change need information. On the other hand, information is often irritating to individuals in the contemplation stages of change, who might respond to an emphasis on the benefits to be derived from change. Those in the preparation stage benefit from comments that build confidence in their ability to make the necessary change or by suggestions that decrease perceived barriers.

Educational Techniques to Avoid. Fear and coercion are ineffective motivators because people who are pushed in one direction will resist change, even if the advocated approach is logical.80,82 Paternalism, characterized by making decisions for or dictating decisions to patients, is rarely effective in the long-term because of lack of ownership by the patient over the decision.

Not all patients with HF have the same learning needs. Although one might argue that every patient could benefit from intensive education and counseling, current evidence suggests that those patients with few symptoms and less complicated HF may have worse outcomes in terms of health care resource use, costs, and quality of life when they receive intensive counseling.83 Patients with more severe HF incur substantial benefit from an intensive intervention. Although most clinicians would argue for the value of face-to-face education and counseling, studies have shown that select patients who are motivated to learn and change can derive significant benefit from interventions delivered by mail, telephone, or technology.84-86 These techniques are not likely to be successful with patients who suffer even mild cognitive impairment or have depressive symptoms, nor are they adequate for those with low literacy or low health literacy, poor social support, multiple comorbidities, or functional impairment. Regardless of the method used, it is imperative that information be covered more than once. Use of different methods may improve efficiency (eg, supplementing verbal with written materials).

Successful education is an interactive process in which patients and caregivers participate by asking questions and by demonstrating that they have comprehended and retained what they were told. Misperceptions by patients and family are very common, but they can be avoided when an interactive learning process is used.4 Very few clinicians have strategies in place for assessing that patients have understood and retained the education given to them. Retention of learned material is poor among the elderly and any patient with a chronic disease, but it is enhanced when the learner shows mastery of the learned material by recitation of specific details or by demonstration.

The hospital is arguably the most difficult setting for patient and family education because patients are ill, anxious, and in circumstances that do not promote retention.13,87 By many estimates, patients retain only a minority of information taught to them in the hospital.10 One study showed that 46% of patients were noncompliant with their recently prescribed regimen and most demonstrated inadequate medication-related knowledge just 1 week after discharge, even when they received medication teaching.16 In another study, half of all patients interviewed claimed they received no medication education before discharge, 70% claimed they received no written materials, only 43% of patients could name their discharge medications, and none could name even one side effect of their prescribed medications, regardless of whether or not they reported receiving information from a clinician.88 Further, there was little agreement between patients and their physicians as to whether or not they had or had not received medication education from the physician.

Patient and caregiver knowledge about their HF and medication regimen must be confirmed by responses. Education should be reinforced and additional teaching started within 1 week of discharge.89 Systematic education and counseling should continue for 3 to 6 months according to the needs of the patient and family or caregiver.90

The difficult circumstances under which discharge education is provided do not diminish its importance. One randomized, controlled study of 223 HF patients using a structured 1-hour, one-on-one teaching protocol led to significantly fewer deaths, rehospitalizations, or days hospitalized during follow-up.91 In addition to improving self-care adherence, cost of care in the patients receiving the intervention was lower than in control subjects.