Barbara J. Anderson, PhD, CDE and Abigail K. Mansfield Marcaccio, PhD
- What is "Miscarried Helping"?
- What are the steps in preventing "Miscarried Helping"?
- How can you foster an open provider-patient relationship?
- What are the steps to preventing diabetes "burnout"?
- How can primary care providers foster support?
- How can eating disorders be prevented?…
Support from family and friends helps patients cope with the complex disease of diabetes and its management; likewise, primary care providers can help families help the patient. But without specific guidance from medical providers, family members who mean well and try to help often achieve precisely the opposite. Misguided attempts at helping often result in undermining patients’ sense of control or competence in diabetes management. "Miscarried helping" is the term that describes family involvement that becomes destructive and undermines the patient’s attempts at healthy diabetes self-care. The overall goal in encouraging families to help the patient is to provide help that feels positive and supportive to the patient. "Miscarried helping" happens when the support attempts of family members (or friends) fail because they are excessive, untimely, or inappropriate. Examples of "miscarried helping" include:
- second-guessing or arguing with the patient about his or her management decisions ("if only you had checked your blood glucose, you would have known you were low")
- blaming the patient for making an unhealthy choice (saying "should you be eating that?" just as the patient bites into a donut)
Often when family members have unrealistically high expectations for the patient’s blood glucose levels, weight loss, or self-care behavior, the help they provide tends to "blame and shame" rather than support the patient.
TABLE 23-2. Steps to Prevent "Miscarried Helping" and Teach Positive Family Involvement
The provider-patient relationship plays a pivotal role in effectively managing diabetes. Although research has shown that both doctors and patients believe that discussing emotional well-being is important, most often, neither doctors nor patients raise the issue. Since physical and emotional health are linked, and because emotional well-being has a direct impact on patients’ capacity for self-care, healthcare providers must address emotional health. They can begin to do so by raising the following issues at each medical visit:
- Ask about the emotional impact of diabetes.
- Invite patients to talk about their negative feelings about diabetes.
The primary characteristic of a good provider-patient relationship is open, trusting communication. Healthcare providers can help foster good communication with patients:
- Encourage patients to bring a written list of questions they would like to have answered by the end of the visit. Work through the list together. If time does not allow for all questions to be answered, work with the patient to prioritize and get the most important questions answered before the end of the visit.
- Avoid blame and criticism. Focus instead on positive steps the patient is already taking or is ready to take.
In addition to forging supportive and trusting relationships with patients, it is important for providers to be aware of some of the practical obstacles to successful diabetes treatment that many patients face. Below is a list of such obstacles.
Cost. Diabetes supplies may not be affordable if patients do not have health insurance; doctor visits may be too expensive, and/or transportation to and from appointments may also be a barrier.
Timing. Many patients have difficulty finding time in their daily routines for diabetes tasks. In addition, taking time off from work for regular healthcare appointments may be especially problematic for some patients.
Assertiveness. Many patients do not know how to take advantage of the resources their healthcare team has to offer. The idea of asking questions, and making sure that the answers are clear, is foreign to many patients.
Work and School Environments. Not all patients have an educated or supportive work or school environment in which diabetes tasks can be easily attended to without embarrassment.
Diabetes can be a heavy load to carry, for both patients and family members. Often, people with diabetes come to feel discouraged and overwhelmed by all of the responsibilities that come with managing diabetes, especially when expectations for blood glucose values or self-care behavior are unrealistic. These feelings can lead to "diabetes burnout," which can be dangerous because burnout makes engagement in healthcare management tasks and general self-care impossible.
- feeling helpless, irritable, hostile
- feeling chronically depleted, lacking energy and motivation for diabetes care
- feeling overwhelmed and defeated by diabetes
- feeling unmotivated and/or unwilling to change
- having strong negative feelings about diabetes
- seeing healthcare providers infrequently
- feeling alone with diabetes care
Below are some steps primary care providers can take to help patients who are struggling with burnout (adapted from Polonsky, 2002. See Suggested Reading.):
- Help patients to recognize the signs of diabetes burnout (see list of symptoms above).
- Establish a strong, collaborative relationship with patients.
- Negotiate treatment goals with patients, with an emphasis on being realistic. Make sure goals are concrete and achievable.
- Pay attention to strong, negative feelings about diabetes. Your best "first response" is to listen well, and not to jump in to solve patients’ problems for them.
- Optimize social and family support.
- Engage patients in active problem solving. The patient may need help articulating the problem. Or the patient may have a solution, but need help articulating or implementing it.
One of the most important things providers can do in working with patients who suffer from burnout is to allow patients to talk about their negative feelings and, above all, to foster open and trusting communication. Keeping the door open to medical care is imperative.
Major Psychological Obstacles to Diabetes Care
Thus far, we have given attention to promoting supportive relationships and behaviors. Unfortunately, even in the context of supportive familial and provider-patient relationships, patients sometimes come up against major psychological obstacles to diabetes care. The following sections address some of these obstacles.
Alcoholism and Addictions
Addictions and alcoholism have important implications for diabetes care because they severely limit the capacity of a person with diabetes to attend to daily self-care tasks such as blood glucose monitoring, insulin injections, taking antidiabetes medications, and healthy eating. In addition, maintaining daily structure and keeping medical appointments is often problematic for people with an active addiction. Healthcare providers can help patients to identify addictions and/or substance abuse patterns, and can provide resources and referrals for treatment. It is critical that doctors maintain open and respectful relationships with people struggling with substance abuse or dependence.
Substance Use as Self-Medication
Unfortunately, one of the most common myths about substance abusers is that they are disreputable people. In fact, people who abuse alcohol and/or drugs are almost always abused, anxious, or depressed. People who use drugs and/or alcohol as a coping mechanism may be trying to escape from any of the following feelings or situations: current or past physical or emotional abuse, professional or interpersonal stress, financial stress, emptiness, depression, anxiety, loneliness, hopelessness, grief or anger.
Screening for substance abuse should be a standard part of a medical interview. Ask patients about routine alcohol and drug use (e.g., how many drinks do you have each day). If patients report using alcohol or drugs frequently, ask them if they believe this is causing problems for them. If they answer affirmatively, make referrals (see "Intervention and Support" below).
Finally, if you believe a patient may be struggling with alcohol or drug use, raise the issue yourself. State what you see and why you believe that what you are seeing is a problem, but avoid statements like "you’re an addict" or "you’re an alcoholic."
The following commonly used acronym, CAGE, may be helpful in screening for substance abuse:
Cut Down — have you ever tried to cut down on your alcohol/drug use?
Annoyed — have you ever gotten annoyed by someone’s criticism of your drug/alcohol use?
Guilty — have you ever felt guilty about your use of alcohol/drugs?
Early — have you ever felt as though you had to use alcohol/drugs early in the Day?
The obvious and important diabetes-specific problem with substance abuse is that its impact on self-care capability usually prevents patients from achieving optimal glucose control. For people with diabetes, this can be extremely dangerous, and may lead to severe low blood glucose levels or, conversely, elevated levels leading to diabetic ketoacidosis or hyperosmotic coma.
When severe, addictions can prevent an individual from achieving any semblance of control at all, and efforts to concurrently control the glucose levels and the addictive behavior may lead to failure and frustration on both fronts. In such extreme situations, it may be necessary to temporarily abandon all efforts at improving glucose control beyond survival management, and directly address the addiction first. While seemingly sidetracking efforts to improve metabolic control, this approach may ultimately achieve better success sooner rather than struggling with both together and achieving neither.
Insulin syringes can be a source of anxiety for people with substance abuse problems. For a recovering drug addict, syringes often represent intense shame. Using insulin syringes for diabetes care can trigger memories of using drugs or shooting up, or can feel like "back-sliding." It is important to validate feelings that come up with the use of insulin syringes and also to remind patients that within the context of diabetes, using syringes is about self-care, not drug abuse
Intervention and Support
- Keep a list of local Alcoholics Anonymous and Narcotics Anonymous meetings handy to give to patients when necessary.
- Familiarize yourself with local drug and alcohol treatment programs.
- Keep a list of drug and alcohol detoxification centers on hand and offer to call to reserve a spot for patients who are ready to go, but need help getting there.
- Encourage patients who are trying to stop using alcohol or drugs to take advantage of their social supports whenever possible. Recovery from addiction is not a "one person show."
Women with diabetes are twice as likely to develop an eating disorder than women without diabetes, and about one-third of all women taking insulin struggle with "subclinical" symptoms of eating disturbances, such as restrictive eating, a preoccupation with weight and shape, feelings of guilt after eating specific foods, and misuse of insulin for weight control (Jones, et al, 2000. See Suggested Reading.). As in the population at large, women are more vulnerable to the diagnosis of eating disorders than are men. Clinically diagnosable eating disorders such as anorexia nervosa and bulimia nervosa, as well as more "subclinical" disturbances of "disordered" eating attitudes and behaviors present a serious risk to the patient with diabetes. It is well-documented that eating disorders and "disordered eating" are associated with poor metabolic control, problems in adherence, and increased rates of microvascular complications in women with diabetes. Therefore, it is important for primary care providers to understand how to identify an eating disorder or "disordered eating" in a patient with diabetes, as well as how to work with the patient and family to prevent the development of an eating disorder secondary to the diagnosis of diabetes.
As a Cultural Phenomenon
Dieting, preoccupation with weight, and striving for the thin body ideal are common among girls and women in American culture today. This obsession with thinness is apparent in the media and in advertising. Recent studies have revealed that more than 50% of 9-and 10-year-old girls are already dieting and trying to lose weight. It is important to keep this cultural perspective in focus when working with women who have diabetes. In addition, a range of other variables such as genetics, individual temperament, self-esteem, and family interaction all contribute to the development of eating disorders.
Some female patients may be struggling with an eating disorder at the time of diagnosis of diabetes. Moreover, specific aspects of diabetes and its treatment (e.g., weight gain associated with the start of insulin treatment or improved metabolic control, and dietary restraint as a method of metabolic control) may cause feelings of deprivation and accentuate the drive for thinness that accompanies eating disturbances.
Early Warning Signs of Eating Disorders
(Adapted from Goebel-Fabbri et al, 2002. See Suggested Reading.)
- An unexplainable elevated hemoglobin A1C in a patient knowledgeable about diabetes may indicate the patient is cutting back on insulin to control weight by purging calories from the body through the urine.
- Frequent diabetic ketoacidosis (DKA) may be caused by omission of insulin. Patients with serious eating disorders may learn how to avoid hospitalization for DKA by giving themselves only enough insulin to stay out of the hospital.
- Anxiety and avoidance surrounding being weighed may indicate an eating disorder.
- Bingeing with food or abusing alcohol frequently occur along with an eating disorder.
Prevention of Eating Disorders — Steps for Primary Care Providers
- Ask female patients of all ages directly about body and weight dissatisfaction. Keep in mind that many women experience dissatisfaction with their weight due to media images and cultural messages. Respect the patient’s feelings about her weight and educate the patient who has unhealthy or inappropriate weight goals.
- Ask new patients directly about past or current struggles with eating or weight. Clearly, diabetes in the context of an established eating disorder is a risk factor, and the patient should be asked about past or current treatment. If the patient is currently seeing a therapist for eating issues, this therapist needs to become part of the diabetes team and be educated about how diabetes adds to the risk of an existing eating disorder.
- Nutritionists on diabetes teams need to be up-to-date and emphasize healthy eating, not rigid dieting. The goal of a diabetes meal plan is flexibility, not restriction. Collaborate with the patient to set realistic weight goals.
- Be realistic; avoid perfectionism. Avoid setting unrealistic blood glucose goals or expectations for perfect self-care behaviors. Help patients to avoid self-blame by modeling realistic expectations for their blood glucose levels and behavior.
- Allow patients to express their negative feelings about having diabetes. Make it clear that it is normal for patients to occasionally feel burdened or discouraged by the diabetes regimen.
- Avoid transferring all the responsibility for diabetes care to preadolescent patients. Positive family involvement provides important support for the challenges of managing diabetes during adolescence.
Intervention and Support
Because eating disorders constitute a major risk factor in diabetes, it is important to identify therapists (psychologists, social workers, psychiatrists) who are comfortable treating patients with diabetes and an eating disorder.
Treatment – Severe eating disorders, especially anorexia nervosa or chronic insulin omission, are life-threatening, and the patient may require an admission in an inpatient eating disorders unit. Identify one that has experience in the treatment of patients with eating disorders and diabetes.
State and National Agencies – If it is difficult to identify local inpatient or outpatient intervention resources, contact the state medical society, the state diabetes association, IAEDP (International Association of Eating Disorder Professionals), or AABA (American Anorexia and Bulimia Society).
American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 4TH ed. Washington, DC, American Psychiatric Association, 1994.
Goebel-Fabbri AE, Fikkan JL, Connell A, Vangsness L, Anderson BJ. Identification and treatment of eating disorders in women with type 1 diabetes mellitus. Treatments in Endocrinology. 2002; 1 (3): 155–162.
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Polonsky, WH. Understanding and treating patients with diabetes burnout. In B.Anderson and R. Rubin (Eds.)Practical Psychology for Diabetes Clinicians. Alexandria, VA: American Diabetes Association, 2002, 219–228.
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