Barbara J. Anderson, PhD, CDE and Abigail K. Mansfield Marcaccio, PhD
This week’s excerpt answers the following questions:
- How do you screen patients for psychological issues at diagnosis of diabetes?
- When can you use the terms "a touch of sugar" and "borderline diabetes"?
- How important is it to address misconceptions about diabetes?
- What are the three main points to make clear to your type 1 patients at diagnosis?
- How can primary care providers can foster support?
The treatment of diabetes involves more than just correction of metabolic abnormalities and extends beyond the prevention of this condition’s feared complications. People with diabetes have a chronic disease, one that will be with them for the rest of their lives, and one that they cannot easily ignore for any extended period of time. Every aspect of their lives is intertwined with the treatment of their disease.
Not surprisingly, the impact of diabetes on the psychological status of a patient, as well as the impact of a patient’s mental health on his or her diabetes, must be addressed as an important component of the treatment of diabetes. Failure to do so will potentially reduce the efficacy of other metabolically focused treatment modalities and negatively impact the quality of life for the patient.
This chapter traces the mental health needs of people with diabetes throughout the lifecycle of their condition, beginning with diagnosis and extending through the many years of treatment. It is incumbent on all healthcare professionals who interact with a person having diabetes to be cognizant of the patient’s mental health needs and to forge supportive relationships with that individual. Such relationships, in turn, can foster healthy behaviors.
One must also recognize that there are obstacles to diabetes care and self-management. Often, the primary care provider is best equipped to recognize such obstacles and to work with patients to overcome them effectively. On occasion, help from mental health professionals may also be needed to assist in addressing the needs of these individuals, to provide support and intervention to address both the impact of diabetes on the psyche and the influence of the psyche on the diabetes.
Diagnosis and Ongoing Support
The diagnosis of diabetes is a period of crisis for many individuals and their families. Patients and family members face two complex and often conflicting tasks — to begin grieving the loss of health and a spontaneous lifestyle and to learn the complex new language and skills involved in managing diabetes. The discovery of a chronic illness can trigger strong emotions and stir up existing emotional problems. For this reason, it is important to screen patients carefully at diagnosis to identify the following:
Patient’s developmental stage: Determine the expected developmental tasks for the patient’s stage in the life cycle (see Table 23-1).
Patient’s coping style: Determine how patient and family members have handled other medical crises.
Mental health history of patient/family members: Ask about current or past mental health diagnoses, especially depression, anxiety disorders, eating disorders, and learning problems. Find out if the patient is currently receiving, or has received, mental health treatment.
Current life stresses that are potential psychosocial barriers to effective diabetes management: Screen for financial problems, health insurance problems, other health/ mental health problems, educational/ learning problems, a recent move, job stresses, marriage and family conflicts, etc….
Previous exposure and experience with diabetes: Many patients and families only know out-of-date "horror stories" based on older family members or friends who suffered from diabetes complications. Assess how a patient’s experiences with diabetes may impact his or her adjustment to it.
Emotions Commonly Seen at Diagnosis
Sadness. Feelings of sadness are very normal at diagnosis, as patients and family members begin the necessary process of mourning the loss of health. Typical behaviors include crying, withdrawal, lack of interest in sleeping or eating, and anger at healthcare providers or hospital staff. When these feelings and behaviors last more than six weeks, the patient should be referred to a mental health professional who is familiar with diabetes and depression.
Anxiety. Feelings of distress, anxious thoughts, and increased worrying are also commonly seen at diagnosis. Patients and family members may pace, talk fast, ask the same questions over and over, seem unable to concentrate and learn, and express concern over every decision that is made about treatment. If this level of anxiety persists for more than six weeks, the patient should be referred to a mental health professional who is skilled in treating patients with diabetes and anxiety disorders.
Denial. Many patients and family members initially show feelings of disbelief about the diagnosis of diabetes or try to minimize the reality of its onset. These efforts to deny the diagnosis are very normal initially, but if denial continues, it can interfere with effective learning and disease management. It is important for healthcare providers to be straightforward about the diagnosis. Especially when a patient is diagnosed with type 2 diabetes, providers should not state that the patient has "borderline diabetes" or "a touch of sugar" or the "mild kind" of diabetes.
Sensitive pacing of information to be learned is another important strategy for preventing denial. Many patients become overwhelmed in dealing with their grief and the new medical language and technical skills that they must learn immediately. It is important to be realistic about what patients are expected to learn and master at diagnosis. Focusing on "survival skills" at this stage will help many patients become more quickly engaged in learning to manage their disease.
TABLE 23-1. Development and Diabetes
Guilt and Blame. Guilt and blame are negative feelings that can hinder a patient’s ability to cope and family members’ capacity to make lifestyle adjustments. Feeling guilty is a very common response to the diagnosis of both type 1 and type 2 diabetes. With regard to type 2 diabetes, there is a common misconception that solely the person’s eating habits, especially eating too many sweets, caused diabetes. If this misconception is not addressed at diagnosis, the patient may feel guilty and/or family members may blame the patient or themselves for the disease. The ramifications of guilt and blame can undermine the crucial support networks that are integral to effective and sustained diabetes care. Thus, it is important for primary care providers to foster support by encouraging patients and family members to look forward toward what they can do, rather than backward at who is to blame.
When a person is diagnosed with type 1 diabetes, it is very important to make three points clear to the patient and family:
- Type 1 diabetes is caused by an interaction of genetic predisposition factors and environmental trigger factors.
- Nothing the patient and/or parents did caused the diagnosis of type 1 diabetes.
- Although researchers are investigating the prevention and causes of type 1 diabetes, currently there is no way to prevent it.
Doctors and healthcare providers can help support patients through the crisis of diabetes by being aware of the aforementioned responses to the disease, and by being sure to:
- screen the patient/family for depression, anxiety, eating disorders, and learning problems
- identify psychosocial barriers to effective diabetes management in the patient’s environment
- provide straightforward information about the diagnosis and a realistic discussion of disease management, addressing patient/family concerns and questions
- pace information so that patient/family do not become overwhelmed
- inform the patient about new advances in treatment of diabetes and prevention of complications
- normalize initial feelings of sadness, denial, anxiety, or anger
- refer to a mental health provider familiar with diabetes if strong emotions persist for six weeks beyond diagnosis
Supporting the Person with Diabetes after Diagnosis
It is imperative that all patients have consistent and reliable social, medical, and emotional support, both at diagnosis and beyond. Paradoxically, American cultural values such as independence and self-sufficiency often prove to be detrimental when applied to diabetes management. Such expectations of independence and self-sufficiency contribute to a dynamic in which the person with diabetes is completely alone with his or her disease. Sadly, this dynamic in turn leads to diminished attention to diabetes care. There is a great deal of research that shows that patients who have strong support networks adjust better to life with diabetes, both physically and emotionally, than those who do not.
In addition, because diabetes care demands a great deal of time and energy both in the doctor’s office and at home, two sources of support are important: medical and family support. Patients need strong medical support to help:
- know how/when/why to check blood glucose levels and administer medications
- learn about sick-day management, sliding scales, exercise, carbohydrate counting and meal planning, weight loss, and reduction of other risk factors to good health
- problem-solve around the broad range of questions that all new patients inevitably have about lifestyle, behavior change and safety
In the same way that patients benefit from a cooperative approach to medical care, so too do they benefit from a supportive approach to diabetes care outside of a medical setting. A life-long condition that demands daily energy and attention, diabetes is not a "do-it-yourself" disease. People with diabetes need support from family members and friends for all of the following reasons:
- to help with the timing and work of daily diabetes tasks like giving insulin, taking medication and checking blood glucose
- to recognize and respond to the signs of severe low blood glucose and extreme high blood glucose
- to listen to and support the person with diabetes through the emotional highs and lows that predictably come with adjusting to life with a chronic disease
Diabetes requires involvement and support from medical personnel, family and friends. No one with diabetes should be expected to "go it alone."
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