We used the Web of Science (1996–2005) to search reviewed topics. General search terms referred to psychological adjustment, including: “adjust*”, “adapt*”, “distress”, “depress*”, and “anxi*”. Other searches included terms covering chronic disease (“chronic disease”, “chronic illness”, or a specific disease). For effects of blockades of proinflammatory cytokines, we used “rheumatoid arthritis” or “RA” in the title with one of the drugs (“infliximab”, “etanercept”, “adalimumab”,
ReviewPsychological adjustment to chronic disease
Introduction
Chronic illnesses are disorders that persist for an extended period and affect a person's ability to function normally. Some chronic diseases (eg, rheumatoid arthritis) need long-term pharmacological treatment and are often characterised by progressive physical disability and pain. Others (eg, diabetes) can be medically controlled, but only at the cost of strict adherence to disease management regimens. Thus, a chronic illness has the potential to induce profound changes in a person's life, resulting in negative effects on quality of life and wellbeing.1
After the medical diagnosis of chronic illness, patients are confronted with new situations that challenge their habitual coping strategies. As a result, they must find new ways of coping to adjust to their altered condition.2 We use the terms adjustment and psychological adjustment interchangeably to refer to the healthy rebalancing by patients to their new circumstances. Most patients eventually reach a state of good psychological adjustment, but for about 30% of patients, the adjustment phase is prolonged and sometimes unsuccessful.2
At least five key elements of successful adjustment to a chronic illness have been identified: the successful performance of adaptive tasks (eg, adjustment to disability, maintained emotional balance, and preservation of healthy relationships),3 the absence of psychological disorders, the presence of low negative affect and high positive affect, adequate functional (eg, work) status, and the satisfaction and wellbeing in various life domains.4 Several models have been proposed on how patients could achieve these outcomes, including: the model of cognitive adaptation, which emphasises illness acceptance and perceptions of control over illness;5 the personality model that emphasises the role of personality factors (such as optimism or neuroticism) in adjustment; and the stress and coping model that emphasises strategies used by patients to deal with adaptive tasks imposed by disease.6 The authoritative stress and coping model acknowledges that chronic illness consists of several challenges, but at the same time, it highlights—more than other models of adjustment—processes of appraisal and coping that explain why some patients successfully identify and act on opportunities to manage these tasks whereas others might fail to do so. More recently, the stress and coping model has been extended with the model of self-regulation, which allows patients to deal with illness more proactively.7 Both models show the active role that patients may have in adjusting to the challenges posed by their condition, and they have been used to study processes of adjustment in diverse chronic conditions including cancer, diabetes, HIV-infection, asthma, and rheumatoid arthritis.8, 9
We review prospective (observational) and experimental research in 1996–2005 on four innovative areas in adjustment to chronic illness. We focus on approaches that explain how patients can successfully adjust and review the physiological, emotional, behavioural, and cognitive aspects of the process. First, we discuss pathophysiological factors focusing on the role of cytokines, such as those that reduce activity and affect mood, and that have been shown to interfere with attempts to engage in activities important to patients. As such, to deal with the consequences of cytokines and to remain active is of utmost importance for adjustment. Second, we address the role of dealing with emotions in adjustment processes. For some time, the adaptive role of focusing on emotions has been regarded with suspicion, but a growing consensus has indicated that the confrontation of negative emotions associated with chronic illness could contribute to adjustment. Third, we examine self-management in adjustment and highlight studies that indicate the adaptive benefits of patients' willingness and ability to engage in self-management. Finally, we discuss how chronic illnesses can have positive consequences by showing that a crucial part of adjustment could entail a process of patients finding a benefit from the condition. These findings could explain why people with chronic illnesses, despite the negative physical consequences of their disease, report a quality of life that is notably similar to that of healthy people.
Section snippets
The challenge of patients remaining active despite cytokine activity
Infectious and inflammatory processes can induce a constellation of non-specific symptoms, often called sickness behaviour, including weakness, malaise, inability to concentrate, depressed mood, lethargy, anhedonia, and anorexia.10 Therefore, in addition to dealing with the behavioural, cognitive, and emotional challenges of disease, patients must also cope with these physiologically-induced symptoms to preserve an active life.
The psychological effects of these pathophysiological processes are
Emotion regulation: to feel or not to feel
Patients with chronic illness typically have anxiety, depression, and other negative emotions.2 How these individuals cope with these emotions can affect how well they adjust to their illness. Emotion regulation is a term encompassing several conscious or unconscious styles of experiencing, processing, and modulating emotions.34 Two main categories of emotion regulation have been distinguished: avoidance and inhibition of emotions, and expression and acknowledgment of emotions. Although the
Self-management: improvement of mood and health behaviour
Management of chronic illness is characterised by many responsibilities regarding medication use, lifestyle changes, and behaviour to prevent long-term complications—generally referred to as self-management of disease.71 Many studies have shown that patients who engage in healthy diet, exercise, or other aspects of self-management have physical benefits in terms of fewer symptoms, better functional capability, and fewer complications than those who do not in various diseases (eg, HIV/AIDS,72
Cognitive processing: beyond negative outcomes
Although health-related quality of life of patients with chronic conditions is generally lower than that of healthy controls,1 this difference is less pronounced or even absent in aspects of mental health.1, 103 Individuals can use various cognitive strategies to counteract the negative effect of illness on their wellbeing. Much research has addressed Howard Leventhal's model of illness representations,104 showing that patients' beliefs (eg, about the course and consequences of their illness)
Discussion
Psychological adjustment to chronic illness is tremendously important. An estimated 50% of people have a chronic physical condition, needing some form of medical intervention.136 About 35% of young adults report at least one chronic condition2 and more chronic illnesses occur in older adults. While the average age of the population increases, so does the occurrence of chronic illnesses.137 Moreover, the rapid developments in medical knowledge have resulted in a growing number of chronic
Search strategy and selection criteria
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