What are the impacts and outcomes of illness? - Chapter 14

What is the impact of illness?

People with a chronic illness have to face a number of difficulties, namely:

• Uncertainty: the period that someone finds out what the disease is, how bad the symptoms are and what this means for his life.
• Disruption: when someone finds out that their illness is serious. During this period someone experiences a lot of stress and someone is very dependent on the environment.
• Striving for recovery: during this period the individual tries to gain control of the disease and the symptoms and seeks a way to deal with this.
• Restoration of wellbeing: in this phase someone adjusts his emotional image. The disease and its consequences are accepted.

As with all phase models, not all individuals will move through stages smoothly nor achieve emotional equilibrium or a stage of acceptance and adaptation.

There are also a number of phases with regard to cancer:

1. Initial response: the initial response, for example disbelief and shock. Individuals try to defend themselves at this stage against the implications of the diagnosis and may not receive the information clearly.
2. Dysphoria: this phase can last two weeks. At this stage, individuals see their illness realistically, allowing them to experience symptoms of stress, insomnia, decreased concentration, and anxiety. When information becomes available about the treatment, feelings of hope and optimism will compete with stressful feelings.
3. Adaptation: this period can take weeks or months. In this phase, the patient adjusts more positively to his diagnosis and tries to develop coping strategies.

Research into cancer patients shows that some of them are entering the terminal phase, while they have not yet accepted their illness. Some patients accept their disease less and less as death threatens. It is also very dependent on the course of the disease, in which phase someone is. At one moment someone can be busy accepting his circumstances and the next moment the situation turns out to be worse than expected. There is much criticism of phase models, because these models have expectations about people's responses to certain diseases, while people's responses vary enormously from person to person.

Depression and anxiety

Depression and anxiety are common after heart disease and heart attacks. Emotional stress often persists for many months. The prevalence of emotional stress in cancer patients is 70%, with both anxiety and depression occurring. Five years after cancer recovery, depression also occurs, as well as anxiety. Diabetes is also accompanied by emotional stress, generalized anxiety disorder and symptoms of anxiety. With diseases associated with a certain stigma, such as HIV and AIDS, the social significance that goes with it can lead to stress. Both among children and adults, chronic diseases go along with a twice the prevalence of depression and anxiety. Chronic diseases can also lead to a feeling of being lost.

Emotional reactions to illness

Reactions to diagnosis

Most research has been done on cancer, but negative emotional reactions often occur in other conditions, including sudden brain damage, strokes, heart disease or a positive HIV diagnosis.

Loss of self

People who are ill experience a sense of loss of self. That may be because they have to stay indoors. People who are visibly ill experience the most stress and overall quality of life. Negative reactions from others or seeing themselves as a burden to others prevent them from living their lives normally.

Emotional reactions to COVID-19 pandemic 

The prevalence of depression, anxiety, stress and ptsd symptoms rose in the first half year of the COVID-19 pandemic.

Emotional reactions after treatment and admission

Anxiety prior to surgery is high in children and adults and affects outcomes after surgery, such as repair of wounds. Levels of anxiety in cancer patients increase at certain points in the treatment, for example when someone is waiting for the test result, or when a final stage of treatment has been reached and treatment stops with no prospect of cure. At all stages of treatment it is very important that there is good communication from the health professional. This determines whether a patient feels informed, cared for, and feels able to make choices about the treatment that meets needs and goals.

Reactions at the end of treatment

After treatment, patients may experience emotional ambivalence: on the one hand, treatment and side effects have stopped, but on the other, there is a sense of vulnerability and abandonment that results from decreased contact with health care. These feelings of abandonment have been reported in different groups of patients. 

Fatigue

Fatigue occurs in many conditions. There are also associations between fatigue, depression and anxiety. Such negative emotional correlates of fatigue can amplify the negative effects of illness on a person's life. Fatigue also contributes to weakness, making it a vicious circle.

The effect of negative emotional reactions to illness

Depressed people are less good at sustaining treatment, such as continuing to take medication, stopping smoking after a heart attack, or exercising as part of recovery. People with depression also take more risks, for example in unprotected sex. Anxiety is also associated with poor self-management. There is also evidence for the influence of the course of the disease. For example, experiencing stressful events predicts symptoms getting worse and relapse in MS. Depression also affects whether patients resume functioning before the disease, especially in terms of return to work and social activities. This may be due to the worsening of symptoms in depression or to reduced expectations of positive outcomes.There is evidence that depression is a cause of illness and defects and reduced survival, for example after a stroke. Emotion regulation is important in the outcome of diseases. In other words, how a person experiences, processes and deals with emotions influences adaptation, where avoidance and suppression are maladaptive, and recognition and expression are often adaptive.

Positive emotional responses to illness

A positive or optimistic view can be directly or indirectly linked to positive outcomes. Being optimistic is associated with less severe pain and less fatigue among cancer patients ten weeks after chemotherapy. Pessimists have more maladaptive coping strategies. The main benefits of positive emotions are the promotion of psychological resilience, the removal of negative emotions and the triggering of an upward spiral of positive feelings.

The most frequently mentioned positive consequences after stress or trauma are:

• Closer relationships with loved ones.
• Greater appreciation for life.
• A sense of increased personal power.
• Greater degree of spirituality.
• A change in life priorities and goals.

Whether people will experience positive consequences depends on how they approach the disease, what they have to deal with the disease themselves (self efficacy) and how much social support they receive.

Many people indicate that they have appreciated the life and things that they have since they are sick. They realize that small things can make a person happy, now that they know it can be over. People who overcome a disease are often happy because it feels like they are getting a second chance.

How can we cope with illness?

In 1984, Moos and Schaefer described three processes that a person goes through when he falls ill.

1. Cognitive approach: the patient examines the consequences of the illness for his or her life.
2. Adaptive tasks: the patient does things that are related to being sick, such as learning to deal with the disease and the possible treatment, and things to maintain his emotional balance and maintain his social relationship.
3. Coping skills: the patient falls into a way of dealing with the situation that is either approach- oriented, problem-oriented or emotion-oriented.

The adaptive tasks that are required after chronic illness are:

• Dealing with the symptoms of the disease and possibly with pain.
• Keep control of the disease, including managing symptoms, treatment, or preventing progress.
• Managing communicative relationships with health professionals.
• Preparing for an uncertain future.
• Maintaining self-image and self-confidence with challenges.
• Maintaining control and emotional balance over health and life.
• Dealing with changes in relationships with family and friends.

Coping by denial or avoidance

In the beginning, denying an event can be an easy and effective way to minimise any threat and cope with the distress felt. In the longer term, however, denying a threatened event appears to have negative effects. It often ensures that someone develops inefficient coping strategies. It leads to more depression and more sadness and worry. In adolescents, avoidance does not seem to have negative consequences, but depressive coping does. And in a group of patients with rheumatism, denial was even associated with positive outcomes. Perhaps denial is a good way to deal with long-term pain, the researchers explain these results.

Problem-focused and acceptance coping

When someone accepts their illness and then learns to cope with the illness, it is associated with less worry and sadness. Problem-focused coping is associated with a better, more positive state of mind, while emotion-focused coping is associated with a more negative state of mind. However, individuals do not use one coping strategy. Multiple types of coping strategies are often used simultaneously and this can change during the illness. Culture can also influence the type of coping strategies that are used. In addition, the time in which people live has a major impact on the prevailing beliefs and expectations. This also changes the outlook on the disease, the stigma and the possible treatments.

Religious coping and spirituality

Religious beliefs are associated with greater appreciation of challenges, greater optimism, hope and positive appreciation of events and personal growth, and better emotional and physical adjustments in the elderly. In the West, many people describe themselves as spiritual, but not religious. Spirituality is more individualistic than collectivist and more emotion-focused than problem-oriented, and more inward-looking. It is also more anti-authoritarian and more concerned with self-actualization.

What are the illness outcomes?

Finding benefit and post-traumatic growth

People experiencing significant health or life events often report positive psychological changes (post-traumatic growth). For example, they have strengthened personal relationships, a greater appreciation for life, a sense of increased personal strength, greater spirituality, and a valued change in life priorities and goals.

Acceptance coping is defined as accepting the reality of the situation and the fact that the situation is not easy to change.

Social comparison is the process by which a person or group of people compare themselves with others.

Research has shown that individuals with a lot of social support indicate a high degree of benefit finding, regardless of their degree of acceptance, coping, or social comparison.

The acceptance of illness

Acceptance is seen as positive for a person's mood and coping and various health outcomes including fewer disabilities due to pain, improved physical functioning and improved well-being. It is positive for adaptation and the quality of life.

What is the link between illness and quality of life?

Good health care is much more than the pursuit of good clinical results. Certainly when people are chronically ill and therefore have to stay in a hospital or other institution often or for a long period, it is important that they are made as comfortable as possible there. We have already seen in the previous parts how important a person's mental state is for the course and recovery of illness. The quality and accessibility of healthcare is also something that certainly contributes to this.

Quality of life (quality of life, QoL) is a judgment of the individual about his own life at a certain moment. Health-related quality of life refers to the experience of (dis) health or illness and is associated with a certain state of mental and physical functioning and how you feel at work, at school or as a parent.

According to the World Health Organization (WHO), QoL covers the following aspects:

1. Physical health: pain, energy, discomfort, sleep.
2. Psychological (psychological health): positive feelings, self-confidence, memory and concentration.
3. Level of independence: self-care, activities, mobility, medication, work capacity.
4. Social relationships: personal relationships, social support, sexual activity.
5. Relation to environment: relation to physical safety and security, financial resources, opportunities for learning, transport.
6. Spirituality, religion and personal beliefs

Research on QoL has so far mainly focused on the physical aspects of human well-being. And although it is certainly part of it, it does not say everything. The one man with a broken leg is not the other. There is also a psychological factor.

Influences on QoL

Age

The (limited) study of QoL in children is mainly aimed at children with a chronic disease such as asthma or epilepsy. Diseases that are chronic, but not immediate and not necessarily life threatening. According to Bowling, some diseases have an extra impact on children that you don't see in adults. With children, it often takes away the possibility of exercising or playing with peers. This can have a lot of influence on their self-confidence, mood and development. For children, having a disease can also lead to adulthood and an increased appreciation of life, which is sometimes called post-traumatic growth.

Of most influence on the QoL are the severity of (possible) attacks, the loss of independence, limitations in daily life,concerns about the reactions of others and concerns about side effects of medicines. The general QoL is less influenced by health and disease than by economic factors. The age at which someone has a stroke has no direct influence on the QoL. Older people are more likely to lose their independence and become dependent on others. Older people with a limiting illness are particularly concerned about their physical functioning and physical activity, social support and social contact. The type of disease has less influence on the QoL than these aspects. Non-limiting chronic diseases do not affect QoL. The reason why some people with a chronic illness report a higher quality of life than expected, is that when a situation is clear and understood as a permanent feature of one's life, adaptation is easier and better than when someone believes that his / her circumstances are temporary and can change.

Aspects of the disease and quality of life

Aspects of the disease are important: pervasive and persistent pain and disabilities are associated with a lower quality of life. The severity of the disease is not unavoidably or consistently associated with a lower QoL. What is of great influence is the way in which someone approaches his disease (appraisal) and how he deals with it (coping).

Neurological consequences such as memory loss or attention problems can have a negative influence on someone's physical and psychological functioning, two main elements of the QoL. These restrictions can also prevent someone from being able to assess their QoL as well.

Culture

In Western cultures, health and healthcare are seen as something individual, in non-Western cultures it is often a collective concern. Culture partly determines how people deal with pain, how they view modern or traditional treatments, how dependent they want and can be and how they are used to communicating. Compared to Western people, the Chinese beliefs are different in terms of social support and they mainly communicate by telling a specialist about their immediate complaints. The latter also influences their own description of their QoL.

Aspects of treatment and quality of life

Research into different types of treatment is usually done to see what effect a treatment has on a certain subpopulation or to see if different treatments have a different effect on QoL. Research into children with cancer, for example, shows that the children in remission have a higher QoL than the children who undergo intensive treatment.

A study with leukemia patients compared two types of bone marrow transplantation (BMT) with chemotherapy. A heavy form of chemotherapy preceded both forms of BMT. Subsequent research showed that people who had undergone BMT were more tired, had more social and sexual problems and that their work and leisure time were often disrupted by the consequences of the treatment. Receiving bone marrow from a close family member also appeared to have a greater negative effect on someone's QoL than when it was from an unknown donor.

When you compare people who have undergone MBT in their youth to people who have not undergone BMT in their youth, no difference in QoL is found. Even if the overall health of the BMT group was lower. You could conclude from this that undergoing severe treatment in youth does not have lasting effects on QoL.

Psychosocial influences on the quality of life

Among physically healthy people, depression and anxiety disorders appear to have a negative influence on QoL. Symptoms of anxiety and depression in people who have had a heart attack in the last 15 days are a good predictor for a lower QoL. Ethnic origin also appeared to have an impact on the QoL. Various studies have shown that non-white people generally have a lower QoL than white people.

Dealing with the situation in an evasive manner appears to make a positive contribution to the QoL when the situation is actually not controlled. When someone in such a situation wants to influence things that are beyond his control, that is only frustrating. For example, when people learn to accept their chronic pain, it has a positive influence on their QoL.

Of all the sources that people can possibly fall back on in difficult times, such as when they are sick, social support is one of the most important. All kinds of positive relationships have been found between (alleged) social support and coping with and adaptation to the disease.

However, the direction of causality is not always clear. When one of the two factors changes, for example when the QoL changes or the (alleged) social or emotional support, it is not always the case that the other factor also changes. From studies that look at the two factors in this way, you cannot always conclude that the two factors are inextricably linked.

Targets and QoL

The self-regulation theory of Carver and Scheier describes the process of achieving goals related to illness. It is proposed that the disturbance of personal goal attainment caused by chronic illness and its consequences is likely to influence a person's perceived QoL. Approaching the event (the disease), the disturbed approach to the goal, expectations of the final result, approximation of possible sources and the way of coping all influence QoL.

Thus, the disease-specific QoL can sometimes be predicted from the preceding QoL, avoidant coping and a less stressful approach to the whole. Setting goals for yourself, such as wanting to do things for others and having lots of fun, after a (heart) operation is associated with anxiety, depression and a low QoL (self report). Setting goals probably causes someone to give a different meaning to the disease. Someone rather sees the disease as 'something' that makes social contacts more difficult and means less to others.

Coronary angioplasty is a procedure where a small balloon is placed in a blocked coronary vein of a person with atheroma.

How can quality of life be measured?

There are various reasons for doing research on the QoL and determining the QoL of people. Institutions and specialists want to be able to properly inform people about the effects that a certain treatment is likely to have on them. They also want to be able to provide patients with information about what they can do best to minimize the unpleasant effects of the treatment, for example by pointing out the importance of social support.

Research into QoL can also provide a good picture of which alternative interventions are most suitable. Often interventions are compared in terms of costs and clinical outcomes, but especially when the clinical outcomes are equally good, it is important to choose the one that best fits the patient.

When someone is asked about his QoL, the specialist gets a better picture of the general condition of the patient. This can improve communication between patient and practitioner. The practitioner then has a better picture of what the points are that the patient has difficulty with. As a result, he can better adapt his information provision to the specific characteristics of the patient and better assist in choosing between different treatments.

An important side note when measuring QoL is that physical, emotional and social characteristics are not part of the QoL. They can explain why someone thinks their QoL is low, but they are independent of meaning. Then you may wonder whether you can better measure someone's general QoL, or whether you can better focus your research on disease-specific QoL. When you measure the general QoL, you can easily compare different disease groups. However, you may miss the points that are specific to a certain type of illness, such as the fear of cancer recurrence. Specific measurements do take that type of point into account, but then it is more difficult to compare diseases.

• Practicability: under some conditions it is difficult to perform a QoL. For example, in people with diseases where communication is disrupted, interviews cannot be conducted. By conducting the interviews with the authorized representative, a number of methodological problems arise. For example, results cannot be compared well with each other, or the results need to be standardized.
• Response shift: some individuals with limiting diseases sometimes indicate that they have a higher QoL than healthy people. Researchers think that this has to do with the response shift; changes in subjective reports from people whose health status has changed. They have probably changed beliefs because of their illness.
• Culture: the QoL has developed in the English language and must therefore be translated if it is taken in other countries. As a result, the meaning of questions is sometimes lost. They do not know certain concepts in other countries and certain diseases have a different prevalence. Cultural differences have an impact on statistical data, so that the conclusions are also influenced by cultural differences.
• Age: if a QoL is taken from a child, children's versions of the QoL must also be present. Other aspects of development are important for children and adults. In addition, children of a certain age are unable to understand certain things. Abstract domains such as feelings are only developed around the age of seven. If parents enter the QoL for the child, this will not fully match the feelings and thoughts that the child has.