Katie Weinger, EdD, RN,1 Tara MacNeil, HDip,2 and Sheila McMurrich Greenlaw, MD3
1Weinger is associate professor, Department of Psychiatry, at Harvard Medical School, Boston, MA, and an investigator at the Section on Clinical, Behavioral and Outcomes Research, Joslin Diabetes Center, Boston, MA. 2MacNeil is a curriculum developer and research coordinator at the Joslin Diabetes Center, Boston, MA. 3McMurrich Greenlaw practices medicine in Springfield, MA.
Funding for this chapter was provided by the Kathleen P. Walsh Foundation.
Health education involves more than just providing information. Diabetes education is a perfect example. The goal of diabetes education is to help individuals with diabetes live well, thus maximizing health and quality of life while minimizing costs. This goal is met by assisting those with diabetes as they integrate diabetes care into their lifestyles and, when necessary, adapt their lifestyles to healthy living guidelines and treatment requirements.
Accordingly, diabetes care and education are built on behavior and lifestyle adjustments—that is, helping to reinforce some behaviors and to change others. Because learning new healthy habits can be slow and frustrating, nurses caring for individuals with diabetes face the important challenge of effectively supporting patients in their efforts to manage their diabetes. This chapter discusses several aspects of behavioral approaches in the treatment of diabetes, including general principles that apply to most interventions and strategies, useful tools and strategies for diabetes and education, four phases of psychological responses to living with diabetes, and examples of validated behavioral programs.
GENERAL PRINCIPLES IMPORTANT TO BEHAVIORAL STRATEGIES FOR DIABETES
Understand That Diabetes Is a Chronic Illness
Diabetes treatment and education do not fit neatly into the acute care model.1 Although acute episodes may arise and need immediate attention, diabetes is primarily a chronic illness that requires lifestyle adjustments and long-term prevention strategies to ensure maintenance of health. Much of the education and training for nurses occurs in hospital environments and is centered on an acute care model. Several general principles, however, may help these health-care professionals make the transition to a chronic care model.
Use Empowerment in Diabetes
Empowerment in diabetes differs from the more community-oriented public health model of empowerment. Empowerment in this case is a more philosophical approach to clinical practice that emphasizes “helping people discover and use their innate abilities to gain mastery over their diabetes.”2 Empowerment means that individuals with diabetes have the tools, such as knowledge, control, resources, and experience, to implement and evaluate their self-management practices.2 Most of the therapeutic communication skills and principles of adult learning described in this chapter are consistent with this philosophy of empowerment.
People with Diabetes Are in Charge of Their Own Care
One of the most important underlying principles of diabetes treatment is that individuals with diabetes, not their health-care teams, should provide the self-care and make the everyday decisions for their diabetes. Once this fact is accepted, behavioral approaches become logical methods to support patients in their diabetes self-management. Some health-care professionals, particularly those schooled in an acute care approach, may struggle with this concept. Nurses need to conceptualize their role as being one who helps the patient learn to solve problems rather than one who solves problems for the patient.
Health Education, Like Adult Education, Must Be Directly Relevant to the Learner
Nurses must remember that patients are learning about diabetes because they have it. Patients are more likely to remember information that they see as relevant to their situation and that affects how they live, work, play, and relate to others. The key is their perception; information must be presented in such a way that individuals with diabetes can immediately understand how information and recommended self-care tasks apply to them.
Health Literacy
Literacy often is viewed as the ability to read and comprehend and obviously is important in self-management. Health literacy, however, also includes both knowledge and skills, such as basic reading, oral or spoken communication, ability to understand and act upon health-care information, and numeracy skills that may involve calculations or other quantitative skills that are required to function in the health-care system. Even someone who is literate and educated may lack these skills. Successful diabetes self-management includes the ability to understand target ranges of glucose and to make frequent calculations of carbohydrates and insulin doses. Low numeracy skills, however, are common among people with diabetes,3 which could affect self-management and glycemic control. Evidence, indeed, has indicated that low health literacy is associated with an increased incidence of hypoglycemia.4
STRATEGIES AND TOOLS
Orienting Patients to the Health-Care System
Although health-care professionals spend years training for their profession, patients receive no formal instruction in how to be a patient. Being a patient is a distinct and important role that will affect their lives. Over time, patients will develop ideas of their roles based on information from their prior experience, the media, and intended and unintended cues from their health-care providers and support staff. For example, if patients with diabetes have negative experiences when dealing with physicians or nurses, they may “learn” that the health-care team should be contacted only for dire emergencies. Without any guidelines as to when it is appropriate to contact the health-care team, patients may become reluctant to contact the health-care team for help or advice. Therefore, orienting patients to diabetes treatment and providing guidelines on how best to use the health-care team are important.
Building a Respectful Collaborative Relationship
The philosophy of empowerment and many of the tools described in this section contribute to the establishment of a mutually respectful relationship with patients.2 The health-care provider and the patient should jointly agree on the agenda for an education appointment. As an educator, you may want to cover specific topics, but patients will not be able to devote their full attention to the issues you want to cover if they are concerned about other issues. Listening to a patient’s concerns and validating your understanding through reflection and summarization are extremely important tools to use in developing a collaborative relationship. Table 19.1 lists several useful communication techniques.
Table 19.1—Useful Communication Techniques
|
Task |
Techniques |
|
Set a mutually acceptable agenda |
Begin an appointment by finding out what the patient wants to talk about. An agenda should include items important to the patient as well as items that you think are important. Be sure the number and depth of the agenda items fit within the time frame of the meeting. Although you may have multiple items to discuss, it may be necessary to prioritize and arrange additional appointments. |
|
Ask open-ended questions |
Allow the patient to verbalize feelings and provide information in their own words by asking open-ended questions. Some examples are as follows: • “Tell me about . . . .” • “How are you doing with taking your medications?” • “What about your meal plan is working?” • “What problems are you having taking care of your diabetes?” |
|
Practice active listening |
Actively listen while consciously focusing on what the person means. This is not as easy as it sounds. Many people tend to think about what they will say next instead of focusing on what the patient actually is saying. Two useful tools for listening are reflection and summarizing. Reflection5 Repeat or paraphrase the statement back to the person but in the tone of a question. • “You are having trouble with your exercise plan?” • “You are frustrated with your treatment recommendations?” Summarizing5 Summarizing the general idea of the patient’s conversation shows that you have been listening and that you understand. It also provides an opportunity to correct any misunderstandings. If the patient has outlined a plan or made other positive steps, summarizing can help reinforce their progress. |
Remember that the patient’s task is to learn self-management, not simply to receive advice. People with diabetes must learn how to manage diabetes and to problem solve. They will not benefit from having problems solved for them. Although advice is important, before giving advice, consider whether first clarifying the problem through discussion and then allowing the patient to practice problem solving would better serve the patient. Giving advice too quickly may stifle the relationship by emphasizing the nurse’s role as knowledgeable problem solver and the patient’s role as passive recipient of that knowledge. In this case, the health-care professional, not the person with diabetes, is in control; passive knowledge rarely translates to behavior change.
Assessment
The goal of behavioral assessment is to understand patients’ points of view and their specific questions and perceptions about diabetes, its treatment, and their health status. The behavioral assessment begins with open-ended questions that elicit knowledge of treatment recommendations and self-care tasks as well as attitudes, barriers, and support for diabetes self-management (Table 19.2).
Table 19.2—Important Behavioral Assessment Areas
|
Area |
Comments |
|
Knowledge of self-care recommendations |
The rationale for and frequency of doing self-care behaviors is central, rather than knowledge of pathophysiology. |
|
Attitudes toward diabetes and self-care tasks |
Does the patient perceive self-care tasks as important? On a scale of 1 to 10, how important is it for the patient to take care of his or her diabetes? Is the person feeling overwhelmed? The Problem Areas in Diabetes survey6,7 can be used to start conversation. |
|
Distress and depressive symptoms |
Diabetes distress is associated with poor glycemic control and with poor quality of life. When support is given to improve self-care and glycemia, diabetes distress can improve. Increased depressive symptoms are common in diabetes and major depression often is underrecognized and undertreated (see Chapter 22, Complementary and Alternative Approaches). If a person is fearful, sad, or extremely angry, a referral to a mental health professional may be necessary. |
|
Cognitive status |
Over time, diabetes may affect memory, and aging certainly affects memory. Be aware of signs of lack of understanding. Have the person summarize important points before leaving appointments, providing key points in writing. |
|
Readiness, ability, and intention to make necessary changes |
Does the patient feel that changing behavior is necessary or important? Until a person is ready, behavior is difficult to change, and maintenance of a behavior change is even more difficult. |
|
Family and other support |
Does the person feel alone with their diabetes or overwhelmed by family nagging (“diabetes police”)? Does the person with diabetes receive the amount of emotional support and the amount of help that he or she wants?8 |
|
Health literacy |
Assess whether and in what languages the person can read. Remember that most people read at least one to two grade levels below their highest grade achieved. Reading ability is not necessarily equated with level of intelligence. Numeracy, the ability to understand, calculate, and manipulate numbers, also must be assessed. |
Reflection as a follow-up to open-ended questions often helps the patient verbalize issues and identify barriers to successful self-care.5 Diabetes also has been linked to increased incidence of affective disorders, depression, distress, elevated depressive symptoms,9,10 and self-blame,11 which may interfere with self-care discussions with health-care providers12 and self-care behaviors.13 In addition, studies have shown that both health-care providers and patients express self-blame with the inability to achieve glycemic targets,11,14 reinforcing the need for clear, open, and guilt-free communication and collaboration within the patient–provider dynamic.
Goal Setting
Two types of goals are common in diabetes care: treatment (medical) goals and self-care goals. The treatment goals often focus on physiologic markers of health such as blood pressure, HbA1c, and lipid levels, whereas self-care goals typically focus on behaviors necessary to achieve the medical objectives. Thus, the two sets of goals should be consistent and complementary.
When asked what their self-care goals for diabetes are, most people think in broad, sweeping terms. Commonly stated goals are to “lose weight,” “improve glycemic control,” or “check glucose more often.” Sweeping goals, however, often do not affect behavior because they are long term and difficult to put into operation. Such broad goals must be acknowledged and then used to set more specific, short-term intermediate goals that are realistic, achievable, and measurable.15–17 Identifying the steps to be taken to achieve the broader goal is important. Effective evaluation recognizes the amount or percentage of the goal achieved rather than simply determining whether the goal was met. For example, patients who walk for 30 min 3 days a week instead of the desired 5 days achieve 60% of their goal.
Evaluation, more than just a check to see whether goals are met, also should be an opportunity for patients to assess their plan. Did they meet their goals because of their plan or in spite of it? If the latter is true, then they need to rethink their plan and revise it so that the plan supports their self-care. Once intermediate goals are met, patients then set new intermediate goals until their broad overall goal is met. At this point, patients need to develop a maintenance plan that will help them address setbacks and crises that typically occur in busy lives.
Engagement and Self-Efficacy
A patient’s level of engagement is a reflection of knowledge and motivation and influences diabetes management. Patient engagement and activation is related to healthier self-care behaviors, less perceived difficulty in diabetes self-management,18 and improved health outcomes.19 Self-efficacy, the ability to feel confident enough in oneself to act and make behavior changes, is associated with improvement in self-care behaviors in a number of chronic illnesses,20–22 including diabetes.23 Although the belief in the importance of changing a behavior may be high, low self-efficacy can be a barrier to developing healthy habits. Meeting goals and being successful in changing one’s behavior can boost self-efficacy. It is therefore helpful to assess self-efficacy when developing goals and to support confidence in self-management behavior.
Use of Structured Activities
Several tools, such as glucose monitors and pedometers, help engage people in their diabetes self-care. If used correctly, these tools can improve self-management because they help people learn about the body’s response to diabetes and its treatment. To maximize the benefits of this type of equipment, two important rules apply. First, all information is valuable and should not be judged as good or bad. Thus, when a glucose reading is high, patients must learn to acknowledge the importance of knowing that information so they can take action. Similarly, knowing that a treatment is not working is important. If a patient’s eating habits are not healthy, then that is also important to assess. Only with knowledge can changes be made. Inadvertent negative verbal and nonverbal messages about high glucose readings may foster avoidance of glucose monitoring. Second, patients must understand what to do with the information; if they do not understand what to do, they will not use it. Pedometers are popular among people with diabetes as well as the general population, mainly because they are easy to use and provide information that is relatively easy to understand. Conversely, glucose monitoring is not as intuitive, particularly for individuals with type 2 diabetes (T2D). If, however, they use a glucose meter to learn how medications, food, or exercise affects their blood glucose, monitoring can be more relevant and less frustrating.
FOUR PHASES OF LIVING WITH DIABETES
The emotional or psychological response of a person with diabetes can influence the success of behavioral approaches. Psychological responses follow a general progression of four phases from the time of diagnosis until complications are so dominant that they may overshadow diabetes care.24,25 Knowing about these phases can help nurses tailor their educational approach to the mind-set of the patient.26
Diagnosis
Individuals with newly diagnosed diabetes struggle to learn about this chronic illness, to figure out how life will change, and to incorporate the diagnosis into their persona. Meanwhile, these individuals also strive to maintain life as it currently exists.
People recently diagnosed with type 1 diabetes (T1D) can be so overwhelmed trying to process the fact of the diagnosis that they may not be able to internalize any additional information provided. Repetition of all information is important. A contact telephone number and a clearly written handout that repeats all key points are extremely useful for people to have at home. Schedule follow-up sessions within 1 month to assess how patients are doing and to reinforce important self-care behaviors.
For individuals with newly diagnosed T1D, survival skills are important. Patients must learn how to handle equipment and give themselves injections with either a syringe or a pen. Repetitive practice is helpful. Although one demonstration by the educator may be adequate, many practice sessions under the watchful guidance of an educator are typically more useful. Patients should feel comfortable handling the equipment and drawing up the correct dose before leaving the office.
The ability to learn new information and skills also may be compromised in individuals newly diagnosed with T2D if the diagnosis is accompanied by other severe comorbidities. Depending on the patient’s age, support systems, and cognitive status, several education sessions may be necessary to help the patient understand the care and implications of diabetes. Individuals with T2D without comorbidities may consider the diagnosis of diabetes to be a normal part of aging, simply “taking another pill.” Such individuals may lack the motivation to make important lifestyle changes.
Health Maintenance and Prevention Phase
During this phase, the person with diabetes is expected to implement lifestyle changes to stay healthy and prevent complications. The patient, however, experiences no immediate distressful symptoms. This lack of symptoms may diminish motivation for lifestyle adjustments, particularly for individuals whose coping styles include procrastination and denial. Several validated behavioral interventions may be useful during this phase. Training in coping skills helps healthy adolescents who are receiving intensive treatment to improve their diabetes self-management skills. Highly structured cognitive behavioral–based programs can help those who are struggling to achieve glycemic targets improve their self-care.27 Counseling and communication techniques may be used to help patients recognize the importance of self-management tasks and thus move toward improving their self-care behaviors (Table 19.3).5,28
Table 19.3—Examples of Successful Behavioral Intervention Programs
|
Program name |
Description |
|
Blood glucose awareness training |
This training includes 8 weeks of group education. Homework assignments are designed to help participants with type 1 diabetes prevent glucose fluctuations by early recognition or anticipation and treatment of hypoglycemia and hyperglycemia. Blood glucose awareness training is helpful for individuals with hypoglycemia unawareness.29 |
|
Coping skills training |
Small-group programs are designed to help adolescents develop more positive coping strategies to help them manage the stresses of diabetes and its treatment. Coping skills training uses role-playing and scenarios to engage teens in learning how to cope with typical life situations.31 |
|
Motivational interviewing |
Developed in the treatment of addictions, motivational interviewing has not been established as an effective tool for diabetes. This approach, utilizing interviewing techniques and therapeutic approaches to help patients become more ready to change their self-management behaviors, has mixed effects for adolescents with type 1 diabetes,32,33 whereas studies of adults with diabetes have been negative.34–37 Obesity studies showed mixed effects, as it was not successful for obese African American women.38,39 |
|
Cognitive behavioral therapy |
In the treatment of diabetes, this type of therapy is used in group education sessions to help people with diabetes change their negative attitudes and thought habits to more positive approaches to diabetes self-management.27,40 |
Onset of Early Complications
Individuals who have not maintained glycemic control within targets may begin to worry about complications, particularly if they have signs of early complications. This phase often triggers patients to take action to regain control of their diabetes; this response, if unfulfilled or unstructured, may result in burnout.8 Being able to recognize the signs of burnout is key to effective care of the patient with diabetes. These signs include being overwhelmed by diabetes self-care, feeling controlled by diabetes, constantly worrying about taking care of diabetes, and lacking the motivation or willingness to continue with diabetes self-care practices.29 Providers should take care not to inadvertently reinforce self-blame or use terms that could be interpreted as blaming or shaming.11 Behavioral interventions, such as cognitive behavioral strategies, are useful to help address negative attitudes and perceptions that interfere with self-care (Table 19.3).
Complications Dominate
When individuals with diabetes develop one or more serious complications, they may seek treatment from subspecialists who treat the complication but not the underlying diabetes. Thus, the patient is faced with several different illnesses with which to cope instead of focusing on one integrated diabetes treatment program.
SUMMARY
Reinforcing some behaviors and changing others is a key component of diabetes care and education. Endorsing the philosophy that patients are in charge of their diabetes and providing patients with the tools and knowledge necessary to manage their care provide the foundation for the nurse’s role in the treatment of diabetes. Supporting others in the management of their diabetes requires that nurses develop skillful communication techniques and use other behavioral interventions.
Practical Point
• People with diabetes may exhibit a variety of symptoms and may flow in and out of these phases of psychological response at different times. Simply labeling individuals as “noncompliant” when they are having difficulty coping with the disease and self-management regimen does a disservice to these patients and does little to assist in improving their health. An assessment of behavior and emotions can help identify problem areas for intervention or referral.
• The nurse’s role is to help the patient learn to solve problems rather than to be one who solves problems for the patient
• The patient’s task is to learn self-management, not simply receive advice.
• Help patients to develop achievable goals that can boost self-efficacy.
• Avoid negative verbal and nonverbal messages about high glucose readings.
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