I recently had an opportunity to read this excellent book written by Social Worker Kenneth Sharoff. It presents a model of therapy he calls “Cognitive Coping Theory” (CCT) and applies this model to working with individuals who have chronic (or life limiting) and terminal illnesses.
Below I present some of the content from the book I found particularly useful.
Executive, Policy and Operational Beliefs
The first concept in the book, after the discussion of how CCT fits in with CBT and other therapies and models is the idea of policy, executive and operational beliefs. Policy beliefs are the most high-level, and roughly match what is called schema in other therapies. Examples of executive beliefs given in the book include:
- My body should not interfere with my ability to pursue my career
- Doctors must find a cure for my disease. Doctors and modern medicine should be able to cure me
Executive beliefs are often “shoulds” or “musts” that frame an individual’s approach to a situation. They dictate rights and beliefs about what an individual will experience – even when those things are out of that individual’s control. These policy beliefs are then carried out by executive beliefs, which explore how the policy belief is carried out.
One example is someone who wishes to join the Police Service even though they have found themselves paralyzed after an accident. They may hold policy beliefs like “I should be able to do whatever I set my mind to” and “My body should not interfere with my ability to pursue my career”, the resulting executive beliefs might look like:
- Get angry at those around me who do not recognize my struggle
- Continue trying to join the Service even though I am not able to
- Vent my jealousy at individuals who are not limited in this way
The policy beliefs influence the Belief part of the Cognitive Behavioural Therapy ABC scale, while the executive beliefs influence the Consequences part:
- Activating Event – I am not able to pursue my chosen career
- Belief – I am inferior if I can’t pursue my dreams
- Consequences – I feel worthless, angry, jealous, etc.
The last type of beliefs are known as operational beliefs. These are the most concrete thoughts that an individual has related to their illness. Examples include:
- I am worthless
- My life is awful
- It’s not fair that I am experiencing this
These might be compared to the unconscious thoughts typical of CBT. Changing the executive beliefs, which dictate coping strategies, or responses is a key part of CCT.
Phases of Coping with Disease or Disability
Sharoff dictates five phases of coping with disease or disability. They are:
Like most models, this is presented linearly but an individual may move back and forth among the phases as they proceed through their illness or disease.
In the crisis phase, the individual is first experiencing symptoms. They may be experiencing feelings of threat or loss, and experiencing a loss of self-esteem, self-efficacy, and increases in physical discomfort or other direct impact by the illness.
Sharoff describes “dream crush” – the feelings experienced by someone who has discovered that their plan for themselves is no longer possible because of their illness. He identifies “self-placement” as a significant component of this. Self-placement is the task of comparing yourself to where you want to be in life at a particular point in time; realizing that you are not “living up” to this ideal causes significant distress.
Changes in identity are also common in the crisis stage.
In the postcrisis phase, an individual has become accustomed to their situation. They begin to stabilize in that things become routine. As they resume as much of their previous roles as possible, the feelings of “anomie” end. The postcrisis state may lead to alienation if they have not are still experiencing negative emotions as a result of their illness’s effect on the body.
The alienation phase involves a psychological disconnection from the body. An individual struggling with a chronic disability or disease may actually disscoiate themselves from their body and see it as distant or distinct from themselves. This provides short-term coping but will not allow the individual to progress past this state.
Hostility or indifference towards their body is common, as individuals seek to separate themselves from their disease. The major tasks of this phase are to neutralize bitterness and to work on beliefs of disfiguration. If individuals believe they are disfigured, the negative beliefs that lead tot his will need to be worked on in order to avoid a loss of self-esteem or feelings of inferiority.
The consolidation phase may be entered into directly after the postcrisis phase if the individual is coping adequately, or may require significant work in the alienation phase if they are not. An individual in the consolidation phase feels more in control of their life, and may experience increased self-efficacy.
Although an individual may experience a loss of meaning, they can develop new goals and behaviours that work within the limitations of their body. If they are able to do this successfully they will begin to move to the Synthesis Phase.
The final phase of coping is the Synthesis Phase. This phase is marked by a blending of the old and the new, and a recognition that although an individual is changed by their illness they can still find a quality of life and activities that bring them happiness.
Sharoff suggests a variety of coping skills and strategies for each phase that an individual that will pass through. For instance, for individuals who have magical thinking or wish that they could control things like what activities they can perform now that they are limited by their disability, focusing on “area thinking” is one strategy to work on this. In area thinking, an individual considers each goal and whether that is within their control. If it is not, it is consciously replaced by a different goal that is within their ability to control.
What is below is just a few of the many skills, subskills and microskills contained in each category. They are accompanied by detailed explanations and demonstrations of the skills and other tools to make them as useful as possible in therapy.
Assimilation and Rejection of Suffering
Assimilation of suffering means to cope with suffering and to accept that some degree of discomfort, pain or suffering is a necessary part of the process of coping. It is expressed by complaining and expressions of powerlessness, with an undercurrent of magical thinking that if one rejects or denies their reality or the future that it will go away.
This involves acceptance of the reality (without enjoyment of it), forbearance (accepting showing “patience, tolerance, and restraint” with themselves demonstrating endurance as a personal goal), and forgiveness of one’s body, self, their deity or others they may blame for the illness.
Other coping skills that may be used include guided imagery, therapeutic metaphors (such as David versus Goliath) deep breathing, self-encouragement and substituting automatic thoughts when they occur. Outcome enactment is borrowed from solution-focused therapy and asks clients to identify when they do not suffer, and then to note what thoughts or feelings underlie that lack of suffering.
Discomfort and Frustration Management
Sensory diversion training is used to cope with physical discomfort. It involves choosing a sense like sight, smell, or touch and mindfully focusing on an item involving that sense. For instance, if someone who is experiencing pain focuses on an object they can see, and follows it with their eye, tracing it and creating a mental map. Then, moving to the next object, continuing this process until they are no longer aware of their negative physical symptom.
“No Mind No Thing” is a technique borrowed from Buddhism to deal with frustration or other negative experiences by attempting to clear the mind of conscious thought. This is a meditative technique that involves staying in the present and taking in all sensory input. Use of a white noise machine may be helpful in this regard.
Self-instruction training involves using positive self-talk by examining the positive aspects of thinking well and maintaining mantras. Managing activities can help an individual avoid frustration but running up against the wall created by their illness.
An individual’s identity can be challenged by the onset of their illness. Identity is measured by one’s belief in their membership in a group, such as men, military veterans or construction workers. For instance, a woman who believes that in order to be a woman she must have breasts will experience distress when she loses a breast to a mastectomy as a part of breast cancer treatment.
Identity adulteration describes the process by which an individual’s identity has changed as a result of their condition. Identity alienation is indifference towards the individual’s changed body, while identity loss is the recognition that an individual has (rightly or wrongfully) lost their membership in a chosen group.
Reconciling identity involves realizing that we often adopt restrictive definitions of what it requires for membership in a category. Continuing the example of the woman missing her breast, reconstructive surgery may allow her to feel like she belongs to the group again, or seeing other elements of womanhood like nurturing behaviour.
This is especially important for men who often put high standards on themselves, believing a very narrow definition of manhood. Expanding that definition to include stability, being a provider, being confident and assertive, and other “soft skills” may help reduce the distress an individual feels when they cannot participate in their former vocation, if they are physically not as imposing as they were, or are experiencing other symptoms as a result of their illness.
Self-support training involves the reduction of self-criticism and building a strong internal support network so that individuals do not have to rely on others who may be inconsistent in their ability to provide support. Self-support training involves focusing on strengths (known as becoming a self-booster), holding self-compassion, self-advocacy and exoneration training.
Exoneration training is a skill that may be used when someone holds themselves responsible for their shortcomings. For instance, someone who cannot pursue a hobby of running because of their multiple sclerosis may blame themselves for that outcome – even though they have no control over it.
Sharoff recommends instead, staging a “mock trial” in an individual’s mind. Stack all the evidence for the belief, against all of the evidence against. Play prosecutor and defense, in order to stimulate a protective instinct in the client. If they steadfastly hold to their belief that they are responsible, he recommends taking it further and having them determine guilt or innocence, and even prescribe punishment! The reason for this seems paradoxical, but punishing themselves for their own maladaptive beliefs helps them to realize the futility of their thought processes and may enable them to begin moving towards a less blameful attitude.
Uncertainty is at the heart of chronic illness, disability and disease. Although an individual’s disease course may stabilize, in many cases there is an uncertainty about the future. Self-monitoring is suggested in order for clients to recognize when they are feeling uncertain.
Deep breathing and other relaxations exercises can be used to cope with high levels of anxiety, along with “worry management” where an individual decides to limit their thoughts about their illness to a certain time per day (such as 15 minutes in the morning and 15 minutes at night.) This management gives them permission to push those thoughts out of their mind at other points in time, and apply thought-stopping when necessary.
Bitterness Disposal Training
Bitterness is an extremely common part of coping with a chronic illness or disease. Bitterness can be experienced inwardly (such as bitterness with your illness or your body) and outwardly (such as challenges with friends or family.) Examining one’s identity as perceived by others is an element of this process, followed by comparing that image of others to one’s self-image in order to determine if others are making unrealistic demands on them.
Recognizing that the disease is the cause of their feelings may help them externalize those thoughts. Cognitive restructuring allows an individual to compare their thoughts and expectations about those around them with the reality, by examining the other person’s identity (the husband or wife, the brother or friend) and how that affects their behaviour.
Constructive mourning allows an individual to grieve the changes in their life, by allowing that person to ventilate those emotions.
Body Accommodation and Disfigurement Neutralization
Body accommodation is the process of recognizing that one’s body has changed and setting softer standards to accept the body as it is rather than rating it or comparing it with a previous body or someone else’s body. This can be a difficult process as it involves realistic expectations and changing negative attitudes.
Positive self-talk before engaging in activities can help mitigate automatic thoughts of weakness or worthlessness that may occur as a result of the disability.
Disfigurement neutralization involves evaluating the client’s beliefs about themselves, and the words that they use. Assigning meaning to those words as a severe negative evaluation, that can be changed. New beliefs about an individual should be proposed, that see the body objectively, the result of the illness and not the individual’s decisions.
Meaning-making is the process of making a new plan for one’s life after the onset of an illness. This can be because depression or physical/emotional limitations have caused an individual to be unable to pursue their dreams or because the onset of a terminal illness makes them feel like their existing plans are no longer powerful enough to satisfy their desire for meaning in their life.
This process involves deciding on new goals, starting from the very small (like waking up at a specified time or engaging in basic hygiene) to larger goals, like exploring new options. Instilling hope will help the client stay curious and continue to move towards their new goals.
This may also involve helping clients learn to be “alone” with themselves to stimulate creativity, and allow clients to explore new options.
Finally, limitation management involves activities to help clients cope with their “new self.” Limitations caused by illness can create a feeling of helplessness and a lack of control that can cause depression, anger or other sensations. This involves skills previously discussed like deep breathing and relaxation, forbearance, and acceptance of things that one cannot change.
Focusing on elements that are within an individuals’control may help move individuals closer to the things that bring them happiness. Self talk can also be helpful in this regard.