Psychological adjustment to chronic disease - de Ridder, Geenen, Kuijer & Van Middendorp - 2008 - Article

To promote psychological adjustment, patients should remain as active as is reasonably possible, acknowledge and express their emotions in a way that allows them to take control of their lives, engage in self-management and try to focus on potential positive outcomes of their illness. Patients who use these strategies have the best change of successfully adjusting to the challenges posed by a chronic illness.

Chronic illnesses are disorders that persist for an extended period and affect a person’s ability to function normally. Some of these diseases, such as rheumatoid arthritis need long-term pharmacological treatment and are characterized by physical disability and pain. Others such as diabetes can be medically controlled, but only when the patients adhere to strict disease management. This is why a chronic illness sometimes has negative effects on quality of life and wellbeing.

Patients have to find new ways of coping after their diagnosis. Adjustment or psychological adjustment refers to the healthy rebalancing by patients to their new circumstances. For about 30% of all the patients, the adjustment takes very long and is sometimes unsuccessful.

There are five factors to successful adjustment:

1. Successful performance of adaptive tasks (adjustment to disability, maintain emotional balance, preserve healthy relationships)

2. The absence of psychological disorders

3. The presence of low negative affect and high positive affect

4. Adequate functional status (work)

5. The satisfaction and wellbeing in various life domains

There are several models on how patients can achieve these outcomes:

• The model of cognitive adaptation: emphasis on illness acceptance and perceptions of control over illness

• The personality model: emphasis on personality factors (neuroticism, optimisim)

• The stress and coping model: emphasis on strategies used by patients to deal with adaptive tasks imposed by disease. This model also states that chronic illness consists of several challenges, but at the same time it highlights that processes of appraisal and coping explain why patients successfully identify and act on opportunities to manage these tasks whereas others might fail to do so.

The model has also been extended with the model of self-regulation.  Both of these models show the active role of the patients in adjusting to the challenges posed by their illness.

The challenge of patients remaining active despite cytokine ativity

Some diseases (diabetes, cancer, rheumatoid, etc.) produce sickness behavior, which includes weakness, malaise, inability to concentrate, depressed mood, lethargy, anhedonia and anorexia. These effects are mediated by cytokines. For some patients reduced symptoms can be achieved by blockade of cytokines. When patients experience acute illness and feel tired, they will rest and therefore conserve energy and promote healing.  Thus, symptoms that are beneficial during an acute illness can become obstacles to psychological adjustment in chronic diseases.

Emotion regulation: to feel or not to feel

Emotion regulation is a term that includes several conscious or unconscious styles of experiencing, processing and modulating emotions. There are two main categories: avoidance or acknowledging of emotions. The latter can promote good adjustment, while the first can cause maladaptive outcomes.

The style in one’s culture determines which emotion regulation strategy is more adaptive (West: express, Asia: avoid/inhibit).

Although denial and non-expression of emotions can be useful, failure to acknowledge emotions can leave the emotions unresolved and affect the patient’s health negatively and delay help-seeking behavior.

Expression of emotion are beneficial for patients because:

• They provide feedback on progress toward important goals

• Rumination without expressing them is not healthy

• Decrease emotional distress

• Creates opportunities for social support and closeness

• Improved selfregulation

When confronted with chronic illness, it seems better for patients to express than to deny or inhibit emotions, as long as this behavior helps to achieve more insight.

Self-management: improvement of mood and health behavior

Patients find disease management difficult to integrate in their lives. Explanation: the large amount of time and effort that is needed and not feeling benefits with regard to symptoms or wellbeing.

Depression is a risk factor for this non-adherence.

Cognitive processing: beyond negative outcomes

There is almost no difference between patients with chronic conditions and healthy patients in aspects of mental health.

Howard Leventhal’s model of illness representations: the patient’s belief can affect adjustment in chronic conditions such as diabetes.

Dealing with illness can lead to positive outcomes:

• Improved appreciation of life

• Enhanced sense of purpose

• Changes in life priorities

• Improved personal relationships

Finding benefit or growth could be one of the cognitive strategies used to offset the negative effect of illness and could be viewed as part of a so-called response shift process.

To achieve psychological adjustment, patients need to face the reality of being chronically ill and change their lives to adjust to their illness. They should do pleasant activities, acknowledge their emotions and find meaning in small things.