A Whole-Person Approach to Diabetes Health Education Part 3 of 4

In my last post, I began an in-depth examination of the psychological factors influencing blood glucose control, starting with the effects of emotional depression and effectiveness of one's coping skills. In this post I focus on the effect of mental stress and personality characteristics.

Mental Stress and Diabetes Management

Health Effects of Stress
Prolonged mental (emotional, psychological) stress can cause persistent high blood glucose levels. Mental stress can be caused by many different things, including problems in one's marriage, job, health, or finances. When people are anxious, angry, guilty or ashamed about such problems, their mental stress triggers the "fight-or-flight response" in their bodies. This automatic response prepares their bodies to take action to deal with a perceived danger by fleeing from it or attacking it, even if those problems pose no real physical threat.

In preparation for the threat, various hormones (including adrenalin, noradrenalin and cortisol) surge through the body. This biological process raises blood glucose levels in order to increase one's energy level to help handle the threat. Since diabetic people have insufficient or ineffective insulin, the glucose piles up in the blood and can result in persistent hyperglycemia. This rise in blood sugar under mental stress almost always happens to people with Type 2 diabetes, although it may be mixed in Type 1 diabetics (i.e., blood glucose levels rise for some and drop for others). Physical stress (such as illness or injury), on the other hand, causes higher blood glucose levels in people with either type of diabetes.

Another way mental stress can raise blood glucose levels is by interfering with one's self-care. For example, any diabetic person (Type 1 or 2) who is under mental stress may drink more alcohol, use illicit drugs, exercise less, forget (or not have time) to check one's blood glucose, fail to plan proper meals, etc.

Mental Stress Reduction Methods
Learning to control one's mental stress is therefore very important. Some people find relaxation therapy helpful. Relaxation techniques may include breathing exercises, progressive relaxation, exercise, and positive thinking. Another way to reduce mental stress is to develop more effective coping skills. And still another is to change some of the things in one's life that are creating stress.
Stress reduction methods can be learned by reading self-help books and listening to recording, meditating, receiving psychological counseling, obtaining assertiveness training, joining a support group, etc. The benefits of stress reduction on lowering blood glucose are clearest with Type 2 diabetes since stress blocks the body from releasing insulin. But even those with Type 1 diabetes can benefit from reducing their stress levels because it can help them take better care of themselves.[1]
Helping people deal with their mental stress in diabetes health education programs is, therefore, another way to improve outcomes.

Personality Characteristics and Diabetes Management

How well a person manages his or her health, including diabetes and other chronic conditions, can be understood in terms of four health personality types: Activists, Wannabes, Inactives and Ignorers/Deniers. Each personality type has its own set of attitudes, beliefs, emotions, motivations, and behaviors.

Activists
Activists' attitudes about managing their health can be expressed by the attitude: "I believe I can do whatever must be done, and I'm willing to do it!" This positive, adaptive way of thinking reflects a joy of living and a willingness to manage one's health competently.
In terms of their character traits, Activists tend to be confident, motivated, aware, rational, and assertive. They seek knowledge about their health status and risks to help them make wise decisions and take responsible action. They try to understand how to avoid health problems and self-manage chronic conditions by using their knowledge to live healthily. Activists, therefore, are rational people who manage their physical and mental health using positive, proactive coping strategies, such as:

• Trying to understand what caused the problems and thinking of different ways to handle it.
• Determining what has to be done to manage their condition and then adhering to an effective plan of care.
• Talking to people about what they are going through and seeking advice or help.
• Viewing their health problem as something that helps them change or grow in a good way.
• Rationally accepting that their condition cannot be cured, which minimizes their emotional distress while motivating them to do what is necessary to avoid complications.

The more a diabetic person's character traits resemble an Activist, the more likely he or she is to manage the condition effectively.

Wannabes
A second group of individuals is the "Wannabes" (want-to-be). Wannabes think and talk about improving their health and wellbeing, and are willing to learn about healthy living, but they never seem to act on it, or do so half-heartedly. This is because they tend to have attitudes and beliefs such as:

• "I may be able to do what's required to improve my health, but I'd rather not deal with it right now."
• "I'm not sure what to do."
• "I'm just not ready."

As a result, Wannabes tend to be aware—or are willing to be aware—of their health problems and risks, but they lack the self-confidence and motivation they need to actually do something about it. Their self-doubt and lack of drive may come from the belief that they may not be able to do things the way they should. This uncertainty, in turn, may cause them to avoid making decisions and changing their behaviors for fear of failure; they don't want to be ashamed or embarrassed if they try, but do not succeed.

Wannabes, therefore, tend to cope with their doubts and fears through avoidance. For example, they may:

• Try to feel better by doing enjoyable or interesting things, rather than focus on managing the health problem.
• Act as if there is no problem, or try not to think about it.
• Express negative emotions by yelling or crying, taking it out on others, or avoiding certain people, rather than doing something constructive.
• Hope a miracle will somehow make things better or that one's wishes or prayers would be answered, rather than gaining knowledge and self-managing their health problem.
• Resign themselves that nothing can be done, even though this is an erroneous assumption.

While some of these coping strategies may alleviate their emotional distress temporarily, it is a maladaptive in the long-term since it fosters procrastination. Their inaction, in turn, allows their health to deteriorate. Nevertheless, there are several positive aspects of the Wannabe personality.
Since Wannabes think and talk about improving their health and wellbeing, they may be willing to participate in a whole-person diabetes health education programs that help them gain knowledge about their health problems and risks, as well as help them understand how to manage their diabetes. And they may be agreeable to wellness coaching and counseling offered through the program, which focuses on overcoming their self-defeating psychological obstacles and developing more adaptive coping strategies. Useful health information technologies would also help them gain the knowledge and skills they need. The goal is to help them become more like the Activists, so they will be motivated, capable, and psychologically prepared to manage their diabetes.

Inactives
A third personality type is the "Inactives." They think about their health on occasion, but do not believe they should or can do anything to manage their diabetes. This is because they tend to have attitudes and beliefs such as:

• "I doubt I'll be able to do what's required to improve my health and prevent complications, so why even bother."
• "I don't deserve to be sick…it's not my fault…so why should I have to be the one to do anything about it"—or—"I do deserve to be sick…Illness is my punishment…I'm just getting what I deserve."

Inactives, therefore, doubt that they can deal effectively with their health risks and problems. Some of them also believe they do not deserve what has happened to them, which makes them feel resentful and angry. The mental stress this causes not only distracts them from focusing on constructive health improvement activities, but it can actually raise their blood glucose levels as discussed earlier. Some Inactives, on the other hand, may believe they deserve to be sick due to self-loathing, or there is no hope and they are doomed.

The result is that the Inactives, like the Wannabes, lack the self-confidence and motivation they need to improve their health and manage their diabetes. What makes Inactives less likely to change their unhealthy lifestyles is that:

• Their self-doubt is stronger because it comes from the belief that they are not able (rather than may not be able) to do what is necessary to manage their health effectively.
• Their inertia (inaction) may be exacerbated by (a) fear that they will be shamed if they try to manage their health but fail, (b) the belief that there is no good way to manage their health, and (c) despair related to the belief they deserve to be ill.

The end result is poor management of their diabetes.

The way Inactives attempt to cope with their pessimism, fear, anger, resentment, and despair is similar to the negative avoidance strategies the Wannabes use. And, as with the Wannabes, the maladaptive coping strategies of the Inactives may alleviate their emotional distress temporarily, but hurt them in the long-term since their inaction allows their health problems to worsen.
Nevertheless, since Inactives think about their health and wellbeing on occasion, it is possible for them to become more focused and motivated through the help of wellness coaching, counseling, and useful health information technologies. They may, for example, be willing to gain greater knowledge about their problems and learn constructive strategies for dealing with them. And they may be willing to get help to use the knowledge they gain to self-manage their diabetes by helping them:

• Overcome their inertia, changing their self-defeating psychological obstacles (including self-doubt, fear, anger and shame)
• Replace their negative avoidance-based coping strategies with the positive strategies of the Activists.

Ignorers/Deniers
"Ignorers/Deniers" just don't focus on their health. These people "close their eyes and ears" to information about healthy living. They refuse to acknowledge or accept they have health problems or risk factors; or they refuse to do anything about it. These maladaptive behaviors are a consequence of a self-destructive mindset that includes attitudes and beliefs such as:

• "I do not accept there's a problem with my health" – despite convincing evidence to the contrary.
• "I'm fine the way I am … It doesn't matter what others say" – even though their health is deteriorating, relationships are crumbling, and overall quality of life is suffering.
• "I'm different … I'm special … I'm not like those other people … Nothing's going to happen to me!" – false sense of security and invincibility.
• "I don't trust doctors" – an attitude based on gross overgeneralization.
• "Getting help is a sign of weakness ... A strong person handles one's own problems" – an irrational belief driven by pride and based on distorted measure of self-worth.

Ignorers/Deniers, therefore, differ from the other personality types in important ways. Following are some examples:

• The three other types of individuals think about their health and, when confronted with a health problem, many question whether they are able to do what is necessary to improve things, which may make them feel anxious due to self-doubt. Nevertheless, they may be willing to learn and act responsibly despite their anxiety and doubt. Many Ignorers/Deniers, however, are so terrified by the notion that their diabetes may lead to serious complications that they avoid thinking about their health—preferring, instead, to pretend everything is all right. As a result, Ignorers/Deniers may refuse to accept the reality of their situation, even when confronted with the threat that they are likely to die from their health problems, because such possibilities are just too painful to consider. Although this denial and self-deception may keep their fear in check for a while, their inaction and ignorance makes them very vulnerable to worsening health.
• If Ignorers/Deniers did think about their health, many would feel hopeless and helpless, believing they are incapable of managing their illness effectively. And those who portray an air of invincibility are likely covering up great self-doubt and fear; or they may even be delusional.
• Some Ignorers/Deniers may also be so distrustful of the healthcare profession that they won't even consider seeing a doctor, often until it's too late.
• While health problems may cause other personality types to become sad, or even depressed, for a time, they are able to get themselves motivated and begin to take constructive action because they want to live and be happy. Ignorers/Deniers, on the other hand, may be so lonely and depressed that they believe they have nothing for which to live. For them, the prospect of living longer in chronic emotional pain isn't motivating. This prevents them from having the drive and focus needed for constructive action.
• While other individuals are willing to get help when they need it, Ignorers/Deniers may have been so influenced by their cultures that they believe seeking assistance for personal problems is a sign of weakness.
• Unlike the other personality types, Ignorers/Deniers may have physical addictions or powerful psychological compulsions that prevent them from focusing on healthy living until they reach "rock bottom," which, unfortunately, may be too late.

What this means is that Ignorers/Deniers rely on some of the same maladaptive coping strategies as the Wannabes and Inactives.
Because these thoughts, feelings and reactions are so deeply ingrained in their personalities, getting through to Ignorers/Deniers is very difficult. However, all is not lost! Through wellness coaching, counseling, innovative self-help software, they may be influenced by the "reframing" methods discussed earlier.

Dealing with a person's lack of trust may require intervention by a wellness coach or counselor who takes the time to establish a close, positive relationship with the Ignorer/Denier, and who has the knowledge and experience to gain the person's confidence.
As for Ignorers/Deniers with addictions or compulsions, lengthy psychotherapy (and possible medications) may be needed before they acknowledge their problems and are willing to deal with them.

In diabetes health education courses, wellness coaches and counselor should begin by focusing on helping Ignorers/Deniers understand and reframe their maladaptive beliefs and attitudes. This will enable them to be more open to gaining knowledge and awareness of their diabetes. Innovative health information technologies that help focus and entice them to break through their negative mindsets and resistance would also be helpful. Once Ignorers/Deniers stop deceiving themselves, have a stronger desire to live and enjoy life, gain trust, are more aware and open to receiving help, and are no longer controlled by their addictions/compulsions, they can be treated as Inactives or Wannabes as appropriate.

In my next post, I discuss the role of health information technology supporting innovative diabetes health education programs.

References
American Diabetes Association. Stress. See http://www.diabetes.org/type-1-diabetes/stress.jsp
Patrick Ober, M.D. How Does Stress Affect Diabetes And How Can I Better Manage Stress? See http://abcnews.go.com/Health/DiabetesLivingWith/story?id=3845034

Mental Health and Information Technology

NAMI of Indiana Conference

I just returned from a wonderful conference about mental illness at NAMI of Indiana. NAMI—the National Alliance on Mental Illness—founded in 1979, is the nation's largest grassroots organization for people with mental illness and their families with affiliates in every state. Their mission is "to eradication of mental illnesses and to the improvement of the quality of life for persons of all ages who are affected by mental illnesses" by providing support, education, and advocacy. One memorable event was a poignant and enlightening keynote address about the journey to recovery from schizophrenia by NAMI board member Frederick J. Frese, Ph.D.
The session in which I participated was a panel discussion about health information technology for persons with mental health problems. Following is an expanded version of my contributions.

Understanding Mental Health Problems from a Whole-Person Perspective

Mental health problems range from severe psychiatric disorders (such as schizophrenia, bipolar disorder, PTSD, etc.) to a very wide range of less severe psychological disorders adversely affecting one's social and emotional life (such as phobias and anxiety disorders, depression, eating disorders, compulsions, family strife, learning disabilities, substance abuse, and numerous other problems).
Viewed from a whole-person perspective, all mental health problems can be understood by grouping them into these four categories of disturbance:

1. Disturbances of sensory perception. This refers to hallucinations, such as seeing or hearing things that do not exist.
2. Disturbances of cognition (thoughts, attitudes, beliefs). This ranges from psychotic delusions and thought disorders to neurotic, irrational, self-defeating ways of thinking that just about everyone has at times (such as exaggerating things, being narrow-minded, having faulty opinions, making poor judgments, etc.)
3. Disturbances of emotion. This refers to excessive, deficient, and inappropriate emotions, including emotions that feel good for a while (e.g., manic euphoria), painful emotions (e.g., deep depression and chronic anxiety), and lack of emotion (alexythimia).
4. Disturbances of behavior. This includes irresponsible and self-destructive actions (e.g., not managing one's health, abusing drugs or alcohol, and attempting suicide); excessive passivity/avoidance; excessive aggression; etc. Such behaviors tend to be closely related to one's perceptions, beliefs, and emotions.

And all of these disturbances are linked to one's physiology, including one's hormones, brain, genetics, etc.
Since everything in interconnected, it's why I call it a whole-person perspective.

Benefit of Integrating Psychological with Biomedical Information

The benefit of integrating these four types of psychological information (above) with biomedical (biological/physiological) information is also related to the whole-person perspective of human health. This is because it helps us understand the:

• Interplay between biomedical and psychological factors
• Link between mental/emotional/behavioral problems and many physical problems.

Examples of this mind-body connection include:

• Disturbances of physiology that are related in some way to situational/psychological conditions, but without actual permanent end-organ damage, such as migraines, functional bowel disease and types of chronic pain
• Disturbances where actual physiological and psychological pathologies are evident, such as hypertension, peptic-ulcer disease, hyperthyroidism, asthma and chronic skin disorders
• Serious physiological disorders that tend to appear or flare up with significant life changes and stress, such as disturbances in autoimmunity
• Mental health problems caused by biomedical factors such as delirium, dementia, organic hallucinosis, and organic delusional, mood, personality and anxiety syndromes
• Illnesses such as coronary heart disease and cancer that may be helped with adjunctive treatments which promote changes in patients' behaviors (e.g., improve eating, sleeping, and exercise habits) and psychological states (e.g., reducing resentful anger and stress-proneness)
• Emotional difficulties often associated with medical illnesses and procedures such as AIDS, bone marrow transplants, severe burns, heart or liver transplants, end-stage kidney disease entailing dialysis, hip fracture, open-heart surgery, and plastic surgery
• Maladaptive behaviors and attitudes that have obvious deleterious health effects on oneself and/or others, such as substance and alcohol abuse, anorexia, bulimia, excessive eating, smoking, unsafe sex, recklessness, suicidal tendencies, and abusive behavior toward others.

Integrating psychological and biomedical to understand the whole-person is important, therefore because, for example:

• People with severe mental illness are more prone to die from things such as heart disease and complications from diabetes due to smoking, poor diet, inactivity, failure to follow doctor's orders, etc.
• Up to half of all primary care physicians' cases are either accompanied by, or constitute, psychological problems.
• Psychological problems cause, exacerbate, or impede healing of many physical illnesses.
• Psychological and psychiatric treatment mental health problems helps improve people's physical health and thus reduces overall medical costs.
• People who manage their physical and mental health more effectively are more focused and productive, tend to live longer, have a better quality of life, and enjoy a greater sense of wellbeing. [See this link for more]

It is important for people with mental health problems, along with their caregivers, to understand how specific maladaptive cognitions and emotions lead to irresponsible behavior and worsening health. And they should be helped to use knowledge of the whole person to make positive changes in their lives by making more informed decisions and acting more responsibly. This includes adhering to evidence-based treatment plans designed to reduce symptoms and improve overall health & wellbeing. It also includes better "self-maintenance" (i.e., taking better care of oneself), which promotes wellness by (a) avoiding new health problems and complications and (b) preventing existing chronic conditions from worsening.

In addition, since side-effects from psychotropic (and other) medications can be annoying, debilitating, or even deadly, it's important to know how any medication being taken may
be causing or exacerbating a person's physical and psychological symptoms.
Thus, there are many reasons to integrate psychological with biomedical information for a whole-person perspective.

Whole-Person Health Information Technology for the Consumer

Health information technology focused on the whole-person must take into account all aspects of an individual. And if it is designed for the consumer, it must useful and inexpensive. So, a cost-effective health information technology able to manage a huge diversity of information over a person's entire lifetime, and to delivery this information in an understandable and helful manner is essential.
The type of technology I'm describing—a Personal Health Profile (PHPro) —is related to Personal Health Records (PHRs) since it is for the consumer, as opposed to Electronic Medical Records (EMRs), which are designed for the healthcare professional. There are important differences, however, between a PHR and PHPro:

• A PHPro is more comprehensive (complete) than a PHR. PHRs typically track immunizations, allergies, lab tests, medications, doctors' information, office visits and hospitalizations, physical exams, living wills and advance directives, insurance information, emergency contact information, and other similar information. A PHPro, on the other hand, extends the information it manages to include detailed psychological information about a person's emotional state, along with a wide range of behaviors, perceptions, and cognitions. It also adds a person's physical symptoms, risk factors, wellness activities, coping strategies, motivation and confidence, environmental influences, and more. In other words, a PHPro truly focuses on the whole-person by pulling together all the information related to the interplay between mind, body, emotions, behaviors and environment. As such, a PHPro is more like a personal health encyclopedia due to the depth and breadth of the information it contains.
• The PHPro is also more useful. Now I'm not saying PHRs aren't useful; they do manage certain health information, and may allow health data to be exchanged. But a PHPro goes well beyond accessing and sharing basic health information. That's because it also focuses on enabling deep self-understanding and promoting responsible action by increasing awareness and better self-care. It does this by providing actionable information & instruction that help the person gain practical knowledge and use it to prevent physical and mental health problems, as well as to move toward healing and recovery. How does a PHPro do it? By, for example:
  • Comparing people's symptoms to the possible side-effects of their medications, identifying the symptoms that may be caused or exacerbated by each medication being taken, and advising them what to do about it.
  • Using interactive, personalized, coping and problem solving guides, including ones that help people deal with stressful situations through a systematic process of evaluation and guidance, such as the process depicted in the "Stress and Coping Process Model" flowchart overview at the end of this post.
  • Giving people constructive feedback in ways that inform and motivate.
  • Providing warnings, alerts and reminders.

Protecting the Privacy of Personal Health Information

Although a great deal has been done in recent years to improve the security of information stored in remote databases "in the cloud," (i.e., in the Internet), many people feel more confident that their personal health information would be kept private if they could:

• Input sensitive information about their mental and physical health into their own computers and have it stored in a securely encrypted data file that stays there locally, in their computers, rather than in a remote database containing health records of thousands or millions of other people …
• And at the same time, if they had the option to retrieve basic and less sensitive medical information from remote places (such as their doctors' EMRs, Google Health, Microsoft Health Vault, etc.), and have this information added automatically into their locally stored data file …
• And, when it comes to sharing their information, if they could select the specific pieces of data they wish to share and the specific people they authorize to receive it.

Evolving the First PHPro

I envision that most PHRs will evolve into whole-person focused PHPros over the next few years. Currently, there is only one PHPro; it is our PH Profiler™, a next-generation software tool we've been developing off and on since the early 1980's. I have written about the PH Profiler on this blog in a series of posts starting at this link. It is currently being prepared for next-stage beta testing, and we are forming alliances with universities and consumer organizations to evaluate it and provide feedback that will guide its continued evolution.
I say this because people with special needs—including people with severe mental illness, the elderly, and persons with physical disabilities—would benefit from specially constructed instruments that meet their particular needs. For any consumer-facing information technology tools to be truly useful, grassroots organizations serving these individuals, such as NAMI, must have considerable input into their development. That is why I am committed to working closely with such organizations in order to develop multiple versions of the PH Profiler, which are tailored to their needs.
And collaborating with academia is so important because researchers are the ones who develop evidence-based guidelines that promote high-value care for the consumer. Being able to provide researchers with a wealth of aggregated, de-identified data (to protect everyone's privacy) about symptoms, causes, treatments and outcomes (results) provides and ongoing "feedback loop" that generates ever-increasing knowledge, which leads to ever more cost-effective care through better decision support systems (see this link for a continuous quality improvement feedback loop).


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