Complete Nurse's Guide to Diabetes Care, 3rd Edition

Chapter 23:

Living with Diabetes

Diana Rhiley, LCMFT,1 and Korey K. Hood, PhD2

1Rhiley is a licensed clinical marriage and family therapist at Sumner Mental Health Center, Wellington, KS, and is in private practice as a marriage and family therapist specializing in medical family therapy, Wichita, KS. 2Hood is a licensed psychologist and Professor of Pediatrics, Psychiatry and Behavioral Sciences at Stanford University School of Medicine, Stanford, CA.

Living with diabetes is a daily challenge. The nature of the regimen—frequent blood glucose monitoring, meal planning, exercising, and scheduling medication—creates the need for constant vigilance on the part of the person with diabetes. Clinicians and scientists emphasize the importance of these efforts so that people with diabetes can experience optimal health and quality of life. These efforts are not without cost, as patients often express a sense of loss of freedom or spontaneity and the feeling that diabetes management is taking over their lives. Diabetes may affect relationships, limit social interactions, and produce psychological distress. It is important to be aware of the complex and demanding nature of chronic treatment and care that people with diabetes face.

The health-care professional becomes part of the individual’s health-care team and support system. This may be a short-term relationship for nurses in a short-stay hospital or a long-term relationship for the nurse in the clinic or home health care setting. The role of the nurse may be pivotal in assisting the patient in self-care management skills and in the psychosocial adaptation to a life-changing illness. Many courageous people successfully live with diabetes because of the skills, relationships, and strategies they have developed to cope with the day-to-day challenges of diabetes. Positive experience and outcomes in the face of adversity, better known as resilience, is aided by a strong health-care team and behavioral and emotional support.

Nurses fill multiple roles. For example, the individual with diabetes sometimes feels more comfortable confiding in a nurse or nonphysician health-care professional. Therefore, the role of the nurse is important in assessing an individual’s ability to adjust, cope, and manage his or her diabetes effectively. Assessment involves careful observation, probing questions, and attention to patient responses.

Often, the nurse takes on an important role as coach and advocate. With these roles in mind, the following sections highlight important areas to assess and strategies for optimizing relationships with people with diabetes.

ASSESSING THE NEWLY DIAGNOSED

Often the first encounter after being diagnosed with diabetes is with a nurse. The patient who is newly diagnosed has special needs and considerations. Table 23.1 provides suggested comments, questions, and observations to assist in supporting the patient who recently has been diagnosed with diabetes. This is a critical time for supporting and empowering the patient in preparation for self-care management. The messages that the patient with newly diagnosed diabetes receives at this moment will be remembered for a lifetime. It is important to provide accurate, positive information to the patient and family and also to validate feelings that this can be scary and stressful.

Table 23.1—Specific Comments and Assessment Questions for the Newly Diagnosed Patient

Assessment areas

Questions and observations

Supportive comments

“It can be tough finding out you have diabetes. Our team is here to help you.”

“I have worked with many people with diabetes and we work hard to help you make diabetes a part of your everyday life.”

“It can be stressful to learn all of this new information. Please ask questions and make sure we help you with everything you need.”

Education

Who will provide the patient’s education? Does the patient have access to certified diabetes educators (CDEs)? If hospitalized, will there be more intensive education after discharge? If a CDE is providing inpatient education, ask the patient about what he or she is learning. Is the patient retaining the information? Are family members involved in the education?

Patient skills

Does the patient appear to have a way of organizing him-/herself? Does the patient have a schedule and routine in his/her daily life? Or does a schedule feel confining and something that the patient will come to resent? Is this a chaotic time in the patient’s life when structure is changing (e.g., new job, moving, breakup of a relationship)?

Support system

Who makes up the patient’s support system? Can the patient easily access them? What is their geographic proximity to the patient? Are they willing to be involved? Will they be present for education? Ask for specific names and relationships.

Ability to ask for help

Is the patient good at asking for help when needed? Or does something prevent him/her from asking for support or information from others? If the patient is unclear about something, will he/she ask for clarification? If the patient is having a hypoglycemic event, does he/she recognize the symptoms and will he/she seek assistance? It can help to distinguish between “must ask” and “maybe ask” areas. For example, asking for help when there’s a low blood glucose is a “must ask.” A “maybe ask” can be wanting a partner to carry the blood glucose meter instead of the patient doing it.

Practical Point

Burnout may create feelings of being alone or overwhelmed and of failure. Poor self-care and poor follow-up with the health-care professional are other common symptoms. The patient may feel that diabetes controls his or her life.

EVALUATING LEVEL OF ADAPTATION

People with diabetes will differ in how quickly and how enthusiastically they accept their diagnosis. Some patients may take months or years to fully digest the diagnosis and struggle with engagement with diabetes care teams, whereas others will start managing right away with a renewed interest in their health. This section provides several assessment tools for understanding where the patient is at and what might be helpful to suggest in terms of overall adaptation to diabetes and its management. Table 23.2 identifies several key questions that the nurse can ask to assess the individual’s level of knowledge about diabetes, perceived stress level, family dynamics, attitudes about life, and potential for depression, diabetes burnout, or denial.

Table 23.2—Key Questions and Observations Regarding Adaptation

Assessment areas

Specific questions and observations

Acceptance of diabetes

“Tell me what it has been like having diabetes? How has it changed your life?”

What is the patient’s attitude when talking about diabetes and the diabetes regimen? Does the patient hide diabetes in public and miss important checks or medications for fear of someone thinking negatively of her/him?

What is this discussion’s effect on the patient? Does he/she get tearful or angry? Is he/she proud of the ability to self-manage?

Knowledge and attitude toward diabetes

What can the patient tell you about his/her regimen? Is he/she able to describe the diabetes regimen accurately?

Are there past personal or family experiences that are meaningful to the patient and influence attitudes toward diabetes and self-care issues?

Current stress level

What are the current stressors in the patient’s life in addition to diabetes? Work? Finances? Relationships? It is helpful to ask patient to rate how stressed they are about each of these areas on a 0 (not stressed at all) to 10 (most stressed you could be) scale, and to have them rank order the most stressful areas.

Family dynamics and support systems

Are interactions within the family pleasant and loving or are they cold and distant? Do other family members show knowledge of the regimen and take part in it? Are family members overly protective and indulgent? Do family members tend to nag, creating a situation in which the patient may resist doing the things that are in his/her best interest? If the patient lives alone, where does the support come from? Is there a close extended family, helpful neighbors, supportive friends, and a supportive health-care team or health-care professionals?

Attitude about life

What is the patient’s overall attitude toward life? Does he/she make reference to his/her faith or spiritual life? How has the person coped with personal challenges in the past? This can be helpful to know how they might react or adjust to information about diabetes now and in the future.

Depression

Do you see any signs of depression or anxiety? Is the patient sleeping through the night? Has the patient’s eating pattern changed beyond just what the diabetes recommendations include? Has the patient lost interest in the things he/she would have been excited about previously? Has the patient restricted social activities or withdrawn from friends, significant others, etc.? Does the patient talk of worrying about things? Many times, patients who are depressed or very anxious have a hard time noticing these symptoms. It can be helpful to ask loved ones about their perceptions of the patient as well.

Denial or burnout

Does the patient show any signs of denial or burnout or express feelings of being overwhelmed? Is the patient unable to incorporate changes in his or her treatment program? Does he/she tend to minimize diabetes? Or does the patient justify or rationalize away the poor choices he/she has made?

REDUCING DIABETES DISTRESS

The term diabetes distress is used to describe a sense of being overwhelmed or a feeling of failure or frustration developed by an individual with diabetes. This is different from depression and anxiety because burnout (or distress) is specific to diabetes, whereas depression and anxiety are not. One study reported that ~60% of patients sampled reported at least one serious diabetes-related concern that could be described as diabetes distress.1,2Besides the fact that diabetes distress is an uncomfortable feeling, it can also lead to poor self-care. Research indicates a close connection between diabetes distress and glycemic control for people with both type 1 diabetes (T1D) or type 2 diabetes (T2D).3,4 Imagine trying to do something you do not like when you are feeling frustrated about that thing. This is how the patient with diabetes distress feels about managing their disease. Available tools can help the clinician discern whether the person with diabetes has diabetes distress or clinical depression. Strategies identified to alleviate diabetes distress are included in Table 23.3.5

Table 23.3—Strategies to Assist in Reducing Diabetes Distress

Skills

Suggested strategies

Establish a strong collaborative relationship

It may be very helpful to the patient for the health-care professional to acknowledge the patient’s struggles, applaud successes, and strive for frequent visits to help the patient through the time of distress. Show empathy that what they are doing is tough and can feel overwhelming or frustrating.

Negotiate goals

The health-care professional can help the patient reestablish goals that are measurable and achievable. Start with what the patient is already doing and add to it in small steps. Make sure to help the individual develop simple goals that are realistic. It is also important to just select one goal at a time even if the patient has multiple areas to work on. SMART goals are recommended. Those are goals that are Specific, Measurable, Achievable, Realistic, and Time-Bound.

Pay attention to strong negative feelings

Listen intently and acknowledge or validate. Acknowledging the patient’s feelings is a powerful tool. This means that the health-care professional must listen intently to identify and label those feelings and then normalize those feelings when possible. Use reflections such as “I hear that this part of management is frustrating for you.” If this continues to be a roadblock after repeated attempts by the health-care professional, consider a referral to a mental health professional.

Optimize social support

Loving, supportive relationships with others who take an interest in diabetes management can be a great antidote to diabetes distress. Other parts of this chapter also address the role of the support system.

Teach about early warning signs

Help the patient to look for and identify early warning signs of feeling burned out or distressed about diabetes. These can include 1) checking blood glucose less frequently, 2) being irritated with blood glucose, 3) snapping at family members who try to help, 4) thinking negatively about diabetes all the time, and 5) not wanting to openly discuss diabetes when you used to feel comfortable doing that.

ADAPTING TO COMPLICATIONS

The patient with complications from diabetes has special considerations. One of the most important aspects of diabetes education for the newly diagnosed patient, or someone seeing a nurse for the first time, is to talk about complications in an open and supportive manner. For example, it is important to note new treatments and advancements. Explain to the patient that our understanding of better ways to help them take care of diabetes means that diabetes complications can be prevented, and if they do occur, they can be treated safely and effectively. Scare tactics, such as “if you don’t take better care of yourself, you will develop complications,” generally are not helpful and often only serve to put the patient on the defensive. As a result, they may disengage from treatment and care.

Individuals who develop diabetes-related complications face many challenges, particularly in accommodating to limitations and loss, such as alterations in vision or mobility. The process of adjusting to a complication may be similar to the individual’s adjustment to the diagnosis of diabetes. Many of the assessment items used at the time of diagnosis may be useful when assessing a patient with a new complication, such as the onset of renal failure or the significant visual changes associated with retinopathy. Table 23.4 lists additional assessment areas and questions and observations for individuals with complications.5

Table 23.4—Specific Questions and Observations for a Patient with Diabetes Complications

Assessment areas

Questions and observations

Severity

What is the complication? How severe is the complication? Does it interfere with the patient’s lifestyle? If so, how has the patient adapted?

Pain level

Is the patient experiencing physical discomfort in relation to the complication? If so, how much? It may be necessary to use a pain severity scale.

Side effects

If patients are receiving treatment for a complication, ask about side effects from that treatment. What has changed since they started that treatment?

Lifestyle changes

Ask how the onset of complications has changed the patient’s lifestyle. Are there activities the patient used to do that are no longer possible or feasible because of a complication? And how does that make the patient feel (e.g., angry, stressed, down)?

Support system and coping skills

It is crucial to assess the patient’s coping skills and support system. These will be key indicators as to how the client will handle the complication and assimilate it into his/her future.

The psychological implications of a diabetes-related complication might be devastating and could result in self-blame and feelings of failure or depression. Complications increase the risk factors for depression.6Individuals with complications of diabetes may have greater need for psychological support to assist with adaptation.7

DEPRESSION

At some point during the process of dealing with diabetes, many patients will experience depression (see Chapter 24, Depression, Anxiety, and Eating Disorders). Studies on depression show that there may be a twofold risk of developing depression for the person with diabetes versus people without diabetes. As a clinicians, it may be tough to recognize that symptoms of depression (fatigue, feelings of hopelessness, and lack of appetite) resemble poorly controlled diabetes or hyperglycemia. Health-care professionals tend to underdiagnose or undertreat depression in patients with chronic illness. Because depression has been shown to contribute independently to diabetes-related health outcomes, health-care professionals must be aware of its presence.8 Using a simple and quick screening tool for depression, such as the Beck Depression Inventory, Zung Depression Scale, or the PHQ-9 gives the provider an opportunity to recognize, refer, or provide treatment.

The health-care provider must be supportive and help the patient recognize that depression is treatable. For some patients, being diagnosed with depression carries a stigma, and they may resist counseling and medication therapy. In these cases, it is critical that the health-care provider help the patient understand that the stress of living with a chronic illness can result in depression and that this is neither unusual nor a reflection of his or her character.

SUPPORT SYSTEMS

It is difficult to face a chronic disease and make and maintain numerous lifestyle changes without a support system. Affirmation and validation by others can help the individual with diabetes continue effective health-care behaviors. It can be helpful to the patient to identify specific tasks with which family members or other caregivers can help. Leaving it up to family caregivers to decide how they can help may not always work, so be specific in your requests for help.

Although the nurse wants to encourage the patient with diabetes to accept help from others, it is also true that diabetes can cause a strain on relationships. A support person may begin to resent an individual who does not follow all of the recommendations and is not the “perfect patient.” Some individuals may feel that it is their responsibility to make sure the person with diabetes takes better care of himself or herself. They may begin to nag and constantly watch the person with diabetes. It is helpful to have the support person and the person with diabetes talk about their mutual expectations in the management of diabetes. Without open, honest communication, the relationship can evolve into a game and a tool with which to hurt each other. The people providing support need to be aware of their feelings about diabetes, such as fear, resentment, and anger. It is often these kinds of emotions that drive people to overprotective or smothering behavior. Keep in mind that the person with diabetes is the identified patient and it is not a nurse’s job to fix a strained relationship. Once these relationship struggles escalate, refer the patient to a mental health professional.

COPING AND PROBLEM-SOLVING SKILLS

People with diabetes need to develop coping and problem-solving skills. These are necessary tools to acknowledge and accept the difficulties of managing diabetes and to develop a framework for dealing with problems that come up with diabetes management. It has been well documented that those individuals who take an active, problem-solving approach to coping with a medical illness, including diabetes, experience a better quality of life and better overall health. It is helpful to teach patients a simple problem-solving approach so they can deal with unpredictable blood glucose readings, missed aspects of management, new activities, and stressful situations that may be related or unrelated to diabetes. Table 23.5 outlines specific skills that may be beneficial to individuals with diabetes and their families.

Table 23.5—Behaviors to Enhance Coping Skills

Skill

Specific behaviors

Assertiveness and advocacy

Assertiveness is an extremely important skill for people with diabetes.

Assertiveness includes the following behaviors:

• Expressing feelings rather than holding them in, and taking ownership of these feelings: Encourage discussion about feelings of frustrations or resentment.

• Saying “no” when he/she really means it: Patients need to set and maintain protective limits around their time and energy to preserve good health.

• Asking questions: The patient needs to be able to ask for clarification. Not asking may be a sign of being overwhelmed or depressed.

• Asking for assistance when needed: The ability to ask for assistance demonstrates that the patient has balanced the dependence/independence behavior dichotomy and knows how and when to seek help.

Advocacy is an extension of assertiveness where a person with diabetes stands up for him or herself and makes requests of their diabetes care team and professional organizations to improve diabetes care and resources for people with diabetes. Advocacy can be on a small scale like a clinic visit or on a larger scale working for a diabetes organization.

Problem solving

Problem solving is a skill that helps the patient maintain a sense of empowerment. Problem solving includes the following steps, which are done together with the patient:

• Develop a clear definition of the problem: What is the issue? What does the patient want to happen? Pick one problem and distill it down to its smallest parts.

• Brainstorm possible solutions: Identify realistic goals (use the SMART framework), and guide the patient toward selecting his/her own resolution.

• Select a solution: Identify what is possible within the patient’s power and implement that plan. Think specifically about how the solution will be carried out, when, and how often. If the patient plans to start walking more, have the solution be a certain time of the day to walk, identify where, and identify for how long.

• Evaluate the solution: Decide on a time frame to see if the solution worked. If it did not, encourage the patient to try another solution while not being disappointed or frustrated.

Goal setting and time management

Diabetes requires a significant amount of time for self-care activities; therefore, the priority given it by a patient is tantamount to the success of the treatment regimen:

• Assess the priority of diabetes self-care: Where on the patient’s priority list is diabetes care? Is it high enough to make a commitment to it? It will be difficult for the patient to make a time commitment to these tasks unless these goals are given significant priority.

• Determine an approach for reluctant individuals: The use of motivational interviewing and skills, such as agenda setting, rapport building, negotiating, building readiness to change, and assessment of importance and confidence, may be helpful when working with a reluctant patient.9,10

Support system

Help the patient identify the person or people who can play the following roles in his/her life:

• Someone who can help with the day-to-day “mechanics” of diabetes (e.g., cooking and meal planning, keeping prescriptions filled, being an exercise partner)?

• Someone with whom the patient can share frustrations and achievements?

• Someone who can run interference in situations that wear the patient down or that the patient continually finds frustrating?

Manage stress

Help individuals identify different methods for coping or managing stress. For example, ask them what they like to do to relax or what they do when they feel very stressed. Some people like to listen to music, read a book, or talk with a friend.

Other types of stress management skills are as follows:

• Exercise: Exercise creates many benefits for everyone. Not only is it a large part of a successful diabetes-management regimen, but it also pays huge rewards as part of a stress-management program. The more consistent the exercise, the greater the benefit.

• Relaxation: Begin with progressive relaxation. This is the alternate tensing and relaxing of muscle groups to know the difference between tense and relaxed muscles. Work with large motor muscles and progress to fine motor muscles. Autogenic relaxation focuses on producing physical sensations that are associated with relaxation. Imagining body parts as feeling heavy and warm can reduce the tension in the body. Imagery is the creation of a relaxing scene in the mind in which the person feels free and relaxed and totally removed from pressure and worry. Using relaxation successfully requires practice sessions of ~20 min twice daily for 6 weeks. Before that, it may be difficult to implement the benefits of relaxation in the middle of a stressful moment.

• Biofeedback: Biofeedback is the monitoring of a bodily function such as heart rate, brain waves, or hand temperature. In the learning process, it is coupled with relaxation so that a patient can learn to create the conditions that help calm the body.

SUMMARY

Nurses play a key role in helping individuals live successfully with diabetes. To help individuals with diabetes, it is essential that nurses provide current and accurate diabetes information or understand how and when to refer their patients to specialists with appropriate expertise. The American Diabetes Association, the American Association of Diabetes Educators, and a local certified diabetes educator are good resources.

Interactions with a patient may last for only a limited amount of time. Unless the patient has requested that information be kept confidential, the health-care team should be apprised of any changes or concerns regarding individual patients. Patients tend to have great trust in nurses and are frequently more comfortable discussing some aspects of care with the nurse. Nurses may be more aware of options available for patients, and should communicate this to all on the health-care team. It is important that the patient receive a consistent message from each of his or her health-care professionals. Any information obtained from the assessments that causes concern should be directed to the patient’s primary health-care provider and certified diabetes educators. Interactions with the patient may broaden the primary health-care providers’ understanding of the patient and help them better meet the patient’s needs. It may be appropriate to encourage a social services or mental health consultation.

Frequent interactions with patients, however brief, may be vital in encouraging the patient to maintain a continued commitment to diabetes care. Because of the investment of time and interest on the part of the health-care provider, the patient may find that living with diabetes can be easier.

REFERENCES

1. Anderson B, Rubin R (Eds.). Practical Psychology for Diabetes Clinicians. 2nd ed. Alexandria, VA, American Diabetes Association, 2002

2. Polonsky WH. Understanding and treating patients with diabetes burnout. In Practical Psychology for Diabetes Clinicians. 2nd ed. Anderson B, Rubin R, Eds. Alexandria, VA, American Diabetes Association, 2002, p. 219–228

3. Fisher L, Mullan J, Skaff M, Glasgow R, Arean P, Hessler D. Predicting disease distress among primary care patients with type 2 diabetes: a longitudinal study. Diabet Med 2012;26:622–627

4. Strandberg RB, Graue M, Wentzel-Larsen T, Peyrot M, Rokne B. Relationships of diabetes specific emotional distress, depression, anxiety and overall well-being with HbA1c in adult persons with type 1 diabetes. J Psychosom Res2014;77:174–179

5. Polonsky WH, Fisher L, Earles J, Dudl RJ, Lees J, Mullan J, Jackson RA. Assessing psychosocial distress in diabetes; development of the diabetes distress scale. Diabetes Care 2005;28:626–631

6. Vileikyte L, Leventhal H, Gonzalez JS, Peyrot M, Rubin RR, et al. Diabetic peripheral neuropathy and depressive symptoms: the association revisited. Diabetes Care 2005;28:2378–2383

7. Egede LE, Nietert PJ, Zheng D. Depression and all-cause and coronary heart disease mortality among adults with and without diabetes. Diabetes Care 2005;28:1339–1345

8. Lustman PJ, Singh PK, Clouse RE. Recognizing and managing depression in patients with diabetes. In Practical Psychology for Diabetes Clinicians. 2nd ed. Anderson B, Rubin R, Eds. Alexandria, VA, American Diabetes Association, 2002, p. 229–238

9. Rollnick S, Mason P, Butler C. Health Behavior Change: A Guide for Practitioners. London, Churchill Livingstone, 1999

10. Miller WR, Rollnick S (Eds.). Motivational Interviewing: Preparing People for Change. 2nd ed. New York, Guilford Press, 2002

ADDITIONAL READING

American Diabetes Association. Caring for the Diabetic Soul. Alexandria, VA, American Diabetes Association, 1997

Anderson B, Funnell M. The Art of Empowerment: Stories and Strategies for Diabetes Educators. 2nd ed. Alexandria, VA, American Diabetes Association, 2005

Polonsky W. Diabetes Burnout: What to Do When You Can’t Take It Anymore. Alexandria, VA, American Diabetes Association, 1999

Young-Hyman D, Peyrot M. Psychosocial Care of People with Diabetes. Alexandria, VA, American Diabetes Association, 2012