How can health and quality of life be improved? - Chapter 17

How can we cope with chronic illness?

As we have seen in previous chapters, people with a chronic illness are faced with a number of difficult tasks. They have to accept that their bodies are different than before, and therefore they cannot naturally do everything they could do before. They must adjust their vision of their life and life in general accordingly. This often has consequences for their social life. Relationships change and some groups of friends fall away completely from someone's life. Learning to cope with this is a difficult task that in the beginning is often accompanied by negative emotions and less satisfaction with life. For that reason, psychological interventions have been developed that help people cope with the sometimes radical changes.

The earlier interventions such as relaxation therapy and dealing with stress often come only into view when things have already gone wrong. What is being discussed now is more focused on preventing negative consequences and improving overall health and satisfaction with life.

In the beginning the question is what the newly discovered symptoms mean and then there is the fear of the diagnosis. Certainly if it is not immediately clear what is going on, this can be a stressful, lingering period. If the diagnosis is there, someone may have to perform new tasks immediately, such as taking medication a few times a day or doing exercises. In the long term, someone often faces a gradual decline in health and the fact that more and more things are no longer possible.

Tackling risk factors can help to control the course of the disease, but that is an extra task for someone who already has a lot on his mind. Such a person can benefit greatly from an intervention that focuses on regulating the effects of the disease. The most common interventions are mentioned in the next paragraph.

How can distress be reduced?

Information provision

People with a serious illness have concerns about the prognosis, treatment and the possible effects of their illness or the QoL (Quality of Life). The stress is often highest at the beginning, when the disease just comes into the picture, and when rapid changes occur in the syndrome. When people have more information and therefore know better what to expect, the stress can decrease somewhat. That information can be of various kinds. Examples are:

• Information about the nature of the disease and the treatment.
• Information about how you can cope with the disease and treatment.
• Information about behavioral changes that contribute to the reduction of disease or that promote healing.

Research shows that the stress of cancer patients decreases when they are kept informed of their condition, receive information about, for example chemotherapy, are shown around the clinic where they will receive the treatment and have the opportunity to ask the specialists questions.

The way in which bad news is delivered is very important, certainly when it concerns a disease with a very bad or fatal prognosis. It influences the way people will treat their condition. It is therefore important that the person who brings the news has sufficient communication skills.

When people receive a tape recording of the conversation, they can listen to the information again at home, so that they do not miss out on information that did not get through to them during the conversation. This method works well with regard to remembering and accessing the information, but it also ensures that patients are depressed earlier and worse because they hear the bad news a few times.

If someone only receives medical information, this will not reduce or even increase the fear. It is therefore important that people also receive information about how they can handle the medical information and treatment. They will often benefit from information about coping, relaxation techniques and diversion strategies. This is also apparent from research with women who suffer from cervical cancer.

There are also educational programs that provide information about controlling disease and that the disease has no or limited influence on the state of mind. Such programs can give people the feeling that they are in control of their illness and can reduce fears in the long term.

An example of such an education program concerns people who have had a heart attack. A study compared the effect of an information package with relevant information and a 'placebo package' with information about informal counseling. The relevant information was about risk factors, dietary changes, exercise and relaxation, all focused on heart problems. The information programs were 6 weeks in which the patients were also called and asked about their progress. In the year following the study, the people who had received specific information appeared to be less anxious than the people in the control group. The people in the control group went to their doctor earlier with concerns about their condition and symptoms.

A telephone program was used in a similar program. The program provided information on issues such as recovery, dealing with pain and psychological problems and exercise to people who had undergone a bypass and their partners. The program starts with an appointment on the day of the discharge from the hospital in which people receive all kinds of tips and information about, for example, the use of medication. They also received a telephone number that was available 24 hours a day and a number of telephone appointments were made for the next seven weeks. During those telephone conversations, they received even more information that was important in the relevant recovery phase. This method proved effective in changing behavior and in reducing both the patient and his / her partner levels of anxiety.

Stress management training

This is a method that directly relates to dealing with stress. Usually a program focuses on:

• Problem solving: to prevent or minimize external problems that contribute to stress
• Cognitive restructuring: to identify thoughts that trigger stress and to change those thoughts.
• Relaxation: for reducing physical tension.

Research shows that people who follow a form of stress management feel up to 60 percent better than people who don't. Stress management appears to be effective if the diagnosis has yet to be made, during treatment and after treatment if someone has to learn to live with the physical and emotional consequences of the disease.

Fawzy et al (2014) compared a stress management program with regular care in a group of patients with a malignant tumor that had been removed operationally. Only the active intervention group reported improvements in mood after the intervention and after six months. More recently, in 2001, Antoni et al. Found that a stress management program was more effective than a one-day seminar on improving depression. These benefits were: more enthusiasm to live life, making positive life choices as a result of the disease, a greater appreciation of being alive, and an improved relationship with a partner. In the longer term, Stagl et al. (2014) had shown that women who received stress management training after breast cancer surgery had fewer depressive symptoms than women in the control group even five years after the intervention. This also applies to men with prostate cancer and men and women after radiotherapy. The effectiveness of stress management programs has also been investigated in heart patients. It turned out that most of the interventions were effective. For example, stress management programs have been studied with people with an implanted heart box (ICD). This is a kind of pacemaker. ICD is a relatively new technology, but is being increasingly used. Sears et al. (2007) compared two active stress management programs after ICD implantation, one lasting one day and the other six weekly sessions. Both interventions were associated with reductions in anxiety and cortisol levels in the short term.

Mindfulness

Mindfulness training can be seen as a form of stress management because it is often used to teach patients how to cope with the stress they experience, and it is an effective and easy-to-learn skill. Mindfulness-based stress reduction (MBSR) leads to better coping with symptoms, improved well-being and quality of life, and improved health status. In any case, it is effective in women with an early stage of breast cancer who received radiotherapy, and in people with sleeping problems.

Enhancing social support

Since it has been known for some time that social support helps people to maintain or improve their physical and mental health, a lot of research has been done into the impact of support groups. People with the same health problems can sometimes benefit from each other. In a study, women with breast cancer were randomly assigned to a group intervention or to a standard individual intervention. The therapy was aimed at creating strong mutual ties, expressing emotions, dealing with the direct fear of death, improving relationships with family members and being involved in treatment decisions. Only people who were in the active intervention group were significantly less anxious or depressed.

Other studies into the effect of group therapy show that women who receive group therapy, rather than just information about the subject, suppress their emotions less. They were also less aggressive, impulsive, irresponsible and thoughtless. The conclusion of the study was that this group therapy helps women to express their emotions without becoming unkind or aggressive.

There are also programs for the peers of people who have died from a chronic illness. These programs are primarily focused on the grieving process and on continuing one's own life. Such programs are also available for people with HIV, for example, who have recently lost a loved one to AIDS.

A lot of social interventions have been shown to be effective, but this does not apply to all social interventions. A lot of patients wanted to fall back on friends and family and no longer belong to professional support groups. As a result, interventions have been developed that focus on strengthening family ties and interventions that couples can participate in.

How can illness be managed?

Intervention programs are not only aimed at dealing with the indirect consequences of an illness. It is also important that people treat their medication and symptoms properly. For people with rheumatism it is important that they keep doing their exercises and for people with diabetes it is important that they handle the insulin well. Good interventions have the result that the negative influence of a disease remains limited.

Provision of information

When people know what is good for them and why it is, it can have a positive effect on their behavior. However, that is not always the case. A number of studies into the effectiveness of such information programs on the health of asthma patients showed that the programs had no influence whatsoever on the use of medication, visits to the doctor or the hospital, hospital admissions and lung function. Yet it is said that the programs help as long as they are good enough.

The best programs therefore not only focus on what should change, but also on how someone can do that and how that can be best sustained. When that is done, written information can be an effective and economically attractive way of providing information.

Nowadays everyone can find a lot of information on the internet. Whichever disease you type, you are guaranteed to receive a large number of professional and unofficial websites. On the one hand, this is very positive because everyone can access a large amount of information fairly easily. On the other hand, it is a disadvantage because the different sources of information sometimes contradict each other, and some information is not scientifically based, but is based on the experiences of a person. Health specialists try to solve this problem by giving patients their own web address or a site that they know is good information.

Self-management training

The best way to teach people how to regulate their disease is through self-management training. This method is based on the social cognitive theory of Bandura which suggests that people can learn self-management by practicing and by looking at others. If the student is able to learn something, this sense of control will increase the patient's self-confidence, which stimulates him to learn even more.

The self-management training is a training that consists of structured phases. As has been shown to be important in learning behavior, the next phase is not passed on if someone does not sufficiently master the previous skills. The self-management training courses can be carried out well in groups. You have the opportunity to learn from others. The training is usually focused on the practical side of keeping the disease under control and the emotional side receives less attention. They are also not preventive interventions. Self-management training is all about coping with the current disease.

For example, in the case of a group of rheumatism patients, the training will be focused on exercise, pain management, healthy eating, prevention of fatigue, taking medication, dealing with stress and depression, dealing with medical assistance, and looking at alternative medicine.

Various studies show the success of self-management programs. One of the first studies focused on people with arthritis and it showed that the pain could be reduced by 20 to 30 percent and people could use 40 percent more functional options.

Self-management is not only trained in groups or during personal appointments. More and more programs are being developed that people can follow at home. For example with video, via the internet or on the basis of telephone conversations. The results of this type of method are often good, and in any case better than when there is no program at all. A disadvantage of this way is that people often have difficulty maintaining the program over a longer period of time.

Stress management

Counteracting stress has the positive effect that someone feels calmer and therefore feels better. In addition, it appears that relaxation also has a positive influence on blood sugar levels.

Research on the substance HbA (1c) shows that the level of this substance is lower in people who do relaxation exercises. The substance HbA (1c) is in the blood and regulates blood sugar levels.

It is therefore useful for patients with diabetes to practice relaxation. A diabetes management program works best in combination with a stress management program. Participants in a study of these programs gained less weight if they were in the group that received the combination training.

Enhancing social and family support

Although friends, family, colleagues and other people in the immediate vicinity of a sick person have a great deal of influence on the emotions and well-being of the patient, there are hardly any interventions or programs that focus on that social environment. Programs that do focus on the social environment of the individual usually achieve positive results.

Such a program is aimed at people with diabetes or CHD and their peers. The peers should serve as an example because they know a lot about the subject. There are also programs that allow people with diabetes to bring their best friend to the meetings. When someone's best friend also knows a lot about the problem that the sick person is facing, he is a better support and can better help if needed.

Emotional expressing

A way of expressing emotions that everyone knows but that is now being developed as a therapeutic intervention is the written expression of emotion. The instructions for this method are usually of the following type:

1. Find a quiet place where you can't be disturbed and write, type or talk in a recorder.
2. Plan at least three times a minimum of 15 minutes for writing. Then keep writing for 15 minutes in a row.
3. Let go of everything and describe your deepest feelings about the event. Involve topics such as your youth, your current relationship and friends and family. How are all these topics related to the past, the future and the current situation? What do you feel when you write about these topics?
4. You can write about something different every day or every day about the whole. Don't worry about spelling, grammar or something like that. You can throw away the written as soon as you are done, or save it somewhere for yourself.
5. If one way doesn't work well, try another way. Is it too heavy? Then take some gas back and write lighter. The point is that you can put your thoughts and feelings on paper.

When people do this they often report a short increase in depressive or anxious feelings. In the longer term, they feel better and physical health also appears to be improving. This method has the most effect on people who first want to hide and evade their feelings.

How can disease progression be prevented?

Counseling: The Life Stress Monitoring Program (LSMP) supported middle-aged male heart patients with counseling to prevent disease progression. The results of this program are divided. The intervention group achieved better results than the control group, but socio-economic differences were found between the groups that possibly explained this difference. The M-HART has repeated this investigation and came to different results. The men in the control and intervention group showed no difference and the women in the intervention group were worse off than the women in the control group.

Stress management training: Health can be improved through a stress management program. This has brought benefits to patients with HIV and CHD. The best known program is the program from Friedman et al. (1986) who reported a trial known as Recurrent Coronary Prevention Program. It was aimed at men with type A behavior who had experienced an MI. They received either rehabilitation, or rehabilitation plus type A management, or a usual care group. People in the type A management group had half the risk of a new infarction than people in the traditional rehabilitation program. A program usually combines educational, social and movement aspects. Treating depression in heart patients can produce positive results for the prognosis of their disease. However, there is no evidence yet and further investigation will have to show whether this is correct.Research has also been done into whether stress management procedures can influence the health outcomes of people with cancer. This indeed appears to be the case. The emphasis is now mostly on investigating the quality of life rather than the length of life.