# Motivation and emotion/Book/2013/Emotion and cancer diagnosis

* Multimedia presentation (5 min)

## Overview

A cancer diagnosis is often associated with feelings of fear, pain, hopelessness and death and therefore is always a stressful situation to the patient (Vaartio, Kiviniemi & Suominen, 2003). The emotional impact of a cancer diagnosis can be identified after the initial shock. There are many factors that can predict the impact of a cancer diagnosis on an individual. These factors include age, sex, the cancer type, how the news were told to the patient, the support network of a patient and his/her coping resources.[factual?] But how do people cope with a traumatic event such as a cancer diagnosis? All cancer patients are individuals who have their personal ways of coping with the diagnosis. These 'ways to cope' can be predicted by one's age and sex; men are often more comfortable dealing with the disease by themselves, whereas women tend to resort to external support, such as support groups and social relationships.[factual?] Adolescents, on the other hand, often seek support from mainly from their parents.[factual?]
It is normal for a patient to feel shocked and upset after hearing the news, but sometimes the psychological effects can be long-term (Iwamitsu et al. 2005, Levine et al. 2007). Even though, at present, the psychological effects are well known, depression and anxiety are still under-diagnosed in cancer patients (Vaartio, Kiviniemi & Suominen 2003). One of the theories that try to explain the emotional impact of a cancer diagnosis is Snyder's hope theory (Gum & Snyder 2002). This chapter will discuss the emotional impact of a cancer diagnosis on both the patient and the carers, and then consider group-specific ways to cope with the diagnosis and its adverse effects.

## The emotional impact
### On the patient

Initial reactions to a cancer diagnosis usually include shock and fear.[factual?] After the initial reaction, coping mechanisms surface to protect the patient from despair. Some patient experiences are listed in Table 1. The coping skills that have a positive effect on the patient's mood include adopting a personal locus of control, having a positive attitude, taking a minimising perspective, focusing on solving problems that arise, having a will to fight, and seeking social support (Rosen, Rodriguez-Wallberg & Rosenzweig, 2009). Negative coping skills include avoidance and escapism, hopeful thinking, self-blame, and giving up, which all lead to a worse adaptation to the diagnosis (Rosen, Rodriguez-Wallberg & Rosenzweig). Young women, especially, are vulnerable to psychological distress (Rosen, Rodriguez-Wallberg & Rosenzweig). It has also been found that telling the patient to be tough and have the will to fight is not as effective as an empathetic approach (Rosen, Rodriguez-Wallberg & Rosenzweig).
It is the health professional's duty to break the news in an appropriate way. A bad way to break the news (inadequate information, no empathy etc.) has been associated with a negative psychological outcome in patients, such as an increase in the amount of psychological distress, anxiety and a worse mental adaptation process (Paul at al. 2009). These outcomes are connected to a worse outcome in the patient's health and quality of life (Paul at al.). There has been some research on developing a good strategy to break the news to a patient, but the data is still inadequate. There are some issues which have been identified as important and which should be discussed with the patient during the session. For example, the patient should be able to feel like he or she is getting the best treatment available (Schofield et al. 2001). The patient usually prefers a doctor who does not try to hide the diagnosis behind words; the patient's trust seems to increase if the health professional uses the word "cancer" (instead of e.g. melanoma) when breaking the news (Schofield et al.). In addition, patients with different types and stages of cancer seem to have the need of different bits of information (Schofield et al.). The approach should be patient-centered instead of disease- or emotion-centered (Schmid Mast, Kindlimann & Langewitz, 2005).
Social support is essential for the somatic and mental health of the patient (Iwamitsu et al. 2005). Social support has also been noted to affect the way the patient deals with his/her illness (Vaartio, Kiviniemi & Suominen 2003). Patients who express their emotions to their friends and family and who have a positive attitude, are more likely to get through the emotional impact of the diagnosis without much psychological distress. In some patients the inability to express emotions can be associated with the feelings of helplessness and hopelessness, which have been found to lead to a worse prognosis (Iwamitsu et al.). It has also been proven that the reactions are always individual, and there are many factors that contribute to the emotional impact, such as race, education, cultural values and beliefs, and personal experiences (Halbert et al. 2009).
Depression and anxiety in cancer patients are fairly common, but in carers these mental problems are even more common (Edwards & Clarke, 2004). Often when a cancer patient is affected by depression, the carers get depressed as well. This indicates that the same factors are associated with both the patient's and the carers' mental status. Some of these factors include the type of cancer, physical independence, type of treatment, time passed from the diagnosis and subjective concerns (Edwards & Clarke). It has been suggested that all cancer clinics should offer the patient the opportunity for counseling, psychotherapy, relaxation exercises and practical advice, without the patient asking (Soothill et al. 2003).
Table 1. Male cancer patients' experiences during the illness trajectory (reproduced from Vaartio, Kiviniemi & Suominen 2003)
| Period of illness trajectory | Concepts | Category |
| Beginning | Physical changes, loss of weight, abnormal physical signs | Suspicion on illness |
| | Anticipation, hearing the diagnosis, shock, helplessness, ignorance | Encounter with cancer |
| | Contact with health care system, confirmation of diagnosis, telling significant others, entering patient role | Cancer becomes reality |
| During treatment | Complications, loss of weight, loss of hair, nausea, loss of appetite | Changes in body image |
| | Fatigue, depression, fear of the unknown, need to cope | Individual illness experiences |
| | New social contacts with staff | New social roles |
| During convalescence | Recovery of body image, physical traces of illness | Physical restoration |
| | Suspicion, uncertainty, clinical checkups | Anxiety following treatment |
| | Gratitude, reflection upon meaning of cancer | Reflection |
| | Relationship with partner, family ties, colleagues | Social roles in transition |

### On family and friends

Patients who talk about their emotions are more likely to get genuine social and emotional support and feedback (Iwamitsu et al. 2005). In addition, it is beneficial for the patient if the family is able to express their feelings about the illness and the treatments (Edwards & Clarke, 2004). The carers should maintain a good quality social network and avoid problems in the relationship with the patient. Some coping mechanisms that the carers use are considered negative, such as avoidance and deterioration of the relationship with the patient (Pitceathly & Maguire, 2003).
For male companions, communication within the family relieves psychological distress best, whereas for female companions external support is more important (Pitceathly & Maguire, 2003). Changes in lifestyle and daily routines have a larger impact on female than male carers. Interventions can be used to relieve stress in the carers, but they have been noticed to be effective only when all members are willing and co-operative (Pitceathly & Maguire). Also, cancer clinics usually offer help to patients; all health professionals should be able to find solutions for practical problems, when needed (Edwards & Clarke, 2004).
The majority of the carers (family and friends) manage well mentally after the initial shock, but a small minority suffer from serious psychological distress and mental disorders, such as depression and affective disorders (Pitceathly & Maguire, 2003). Women, carers with psychiatric problems and carers who take a negative approach in dealing with the patient's illness and its effects, all have an increased risk of having mental problems (Pitceathly & Maguire). The carers, more often than the patients, keep their emotions to themselves; only half of the carers who get psychological problems seek for help (Pitceathly & Maguire). Often, the emotional distress of the carers increase when the patient's illness advances and the treatments become palliative. The prevalence of psychiatric disorders in carers is 30-50% after the treatments have become palliative, whereas in the earlier stages of cancer the prevalence is 20-30% (Pitceathly & Maguire).

## Group specific ways to cope
### Men

Male cancer patients may have both physical and emotional difficulties. It is typical that male patients are more willing to fight against cancer by themselves, instead of leaning on support groups or therapy sessions (Halbert et al. 2009, Vaartio, Kiviniemi & Suominen 2003). Men who are allowed to have a bit of control over themselves during their treatment cope better with the diagnosis than men who feel helplessness. This indicates that men have a strong need for maintaining active behaviour (Vaartio, Kiviniemi & Suominen).
Male patients complain about having fatigue more often than women do (Vaartio, Kiviniemi & Suominen 2003). Fatigue in this case may mean either physical tiredness or the lack of coping resources. Male patients often look as if they are coping really well with the cancer and its effects, but it is still very important for outsiders to offer their help and support (Vaartio, Kiviniemi & Suominen). Ways to support the patient include offering information, interactive behaviour in relationships, supporting decision-making, offering help to solve physical problems and maintaining integrity (Vaartio, Kiviniemi & Suominen). Some options for support are listed in Table 2.
If the disease is poorly processed by the patient, it can lead to a poor mental health and mental activity (Halbert et al. 2009). The most common coping mechanisms for men are avoidance and intrusive thoughts. Men, who are not open to talking to their families and friends do not process their illness as well as men who do (Halbert et al.). If the patient has a spouse, it is often beneficial for the patient to have their spouse present when meeting the health professional. In most sessions, the spouse is able to ask more questions than the patient; thus acquiring more information for the patient. (Halbert et al.)
Table 2. Options for support (based on Vaartio, Kiviniemi & Suominen 2003 and Halbert et al. 2009)
* Ways to support the patient
* Increasing patient's information
* Interactive behaviour towards the patient
* Supporting decision-making
* Offering help to solve physical problems
* Maintaining integrity
* Improving communication between patient and carers
* Teaching the patient stress reduction techniques
* Teaching the patient insecurity reduction techniques
* Treating treatment-related symptoms adequately
* Psychoeducation
* Helping the patient identify and strengthen the most important sources of support

### Women

For women, external support is important. This includes social support, therapy counselling and support groups (Vaartio, Kiviniemi & Suominen 2003). Similar to male patients, female patients cope with the diagnosis better if they express their feelings and are open to their family and friends (Iwamitsu et al. 2005). This also helps the patient to get better emotional and social support and to handle the negative and unfamiliar emotions. The patient has to recognise and understand her emotions to learn how to express them and how to cope with them. This is called emotional competence (Iwamitsu et al.).
Female patients who suppress their negative feelings have more emotional distress, depression and fatigue than those who do not. Psychological intervention is an effective way to treat these patients (Iwamitsu et al.).
Female patients use spirituality more than men to overcome their distress caused by the illness. It is not uncommon that after a mental trauma (such as a cancer diagnosis), the spirituality of the patient increases (Levine et al. 2007). Spirituality is usually seen as a positive coping mechanism, but in some rare cases the patient can blame a higher power for their diagnosis and become desperate (Levine et al.). Spirituality and prayer, which are directly associated with quality of life, have been used for a long time to cope with illness and misfortune. Spirituality, which is the individual's own beliefs, hopes and meaning, should not be mixed up with religiousness, which refers to the beliefs of a group (Levine et al.).

### Adolescents and children

The prevalence of cancer in adolescents or children is low, but when it happens, it creates massive challenges for the whole family. When an adolescent gets cancer, it has a huge impact on the emotional and psychological development of the child. For a child, there are three important traits they need to develop during adolescence: autonomy, independence and sexuality. Cancer patients are driven to take a step back in their development when they need to rely on their parents and other people once again. This challenges their newly acquired independence. It can also have a negative impact on the adolescent's development in these areas (Abrams, Hazen & Penson 2007).
For a young cancer patient (whether it's a child or an adolescent), social support is essential. This includes family, friends and usually the hospital staff. In the family, it is usually the mother who gives most support. Having friends also benefits the patient greatly. One best friend, who has known the patient long before the diagnosis, has been noticed to be better for the patient's mental well-being than many recently acquired friends (Abrams, Hazen & Penson, 2007). The hospital staff often makes the patient feel supported and cared for. They can also contribute to the patient's well-being by helping the patient feel like a normal child/adolescent (Abrams, Hazen & Penson).
Appearance and relationships are important for the adolescents' self-esteem. Changes in the body during treatment may have a stressful impact on the patient. Being away from school and other activities can have a negative impact on relationships with friends and create a feeling of isolation. Especially for an adolescent this is hard, because these relationships are extremely important to create an identity for oneself (Abrams, Hazen & Penson, 2007). Many adolescent patients also have pointed out that it is hard to create a sense of independence when the parents are overprotective during the treatment period (Abrams, Hazen & Penson).
Often children cope well with the diagnosis after the initial shock, believing in their own resources and having the will to fight the disease, but, because of this, the emotional distress can sometimes go unnoticed (Abrams, Hazen & Penson, 2007). A well-formed patient-doctor relationship can help to identify the distress of the patient early on, and this helps to prevent bigger problems from developing. In difficult situations the doctors can suggest treatments, such as therapy (cognitive behavioral therapy or psychotherapy), interventions (support groups, music- or art therapy, relaxation techniques, massage or acupuncture) or medications (e.g. SSRI's for difficult depression), to treat the mental difficulties of the adolescent. The patient should be given the opportunity to voice his or her opinion on the treatment suggested. Some of the adolescents want to have a part in making the decisions, whereas some want their parents to do the decisions for them (Abrams, Hazen & Penson).

## Snyder's hope theory

One of the theories created to explain the emotional impact of a cancer diagnosis is Snyder's hope theory. The center of Snyder's hope theory are the person's cognitions about goals, based on the assumption that human behavior is goal-directed. According to Snyder's theory, the superordinate goal of a person is survival, because a person has to be alive to be able to pursue earthly goals (Gum & Snyder 2002). Hope is "a cognitive set that influences behavior and affective functioning" (Gum & Snyder). An awareness of terminal cancer has significant effects on all components of hope: the person's goals as well as the agency (goal-directed determination) and pathways (planning of ways to meet goals) used to reach those goals (Gum & Snyder). The magnitude of the impact on a person depends on four factors: the importance of the goal, the number of goals blocked, the size of the blockage, and the time frame of the blockage (Gum & Snyder). In this case, death is the ultimate goal blockage, as it blocks all goals permanently. This may explain why many patients with terminal cancer experience strong and numerous negative emotions. Research has shown that high-hope individuals have more coping mechanisms than low-hope individuals (Gum & Snyder).

## Conclusion

Mental disorders are still under-diagnosed in cancer patients; therefore it is important to know how the diagnosis affects the patient's psyche. A cancer diagnosis can have both psychological and physiological impacts on both the patient and the carers. In addition, the psychological well-being of the patient seems to be connected to the psychological well-being of the carers. Social support is extremely important for both the patients and the carers; in both groups a weak social network is associated with stress, anxiety and a worse quality of life. The patient should be taught about the positive and negative ways to cope and they should be offered help dealing with mental or social problems by the health professionals. The health professional, who breaks the news to the patient, should have enough knowledge about what information to give to the patient, when to give it and how.
Male patients tend to prefer individual counseling over groups sessions. Since male cancer patients have a strong need for activity and autonomy, they should be allowed to retain some control over themselves and their surroundings during treatment. It is important for the carers to offer physical help to the male patients, even if they keep declining. Male patients should try to express their emotions to their families as much as possible.
Female patients tend to prefer support groups and social support over individual counseling. Also spirituality is more common in woman than in men. Hiding negative feelings can induce helplessness and hopelessness, which can lead to a worse prognosis. Therefore it is important for the patient to express his/her feelings. Psychological intervention is effective for female patients who have problems in expressing their feelings.
For children, and especially for adolescents, personal development is crucially important. For an adolescent, a cancer diagnosis is a big step back in terms of becoming independent and therefore it has a huge effect on not only the patient, but on the whole family. For children and adolescent patients, a strong social network (family, friends and hospital staff) is essential and good communication helps to identify problems in mental health early on. If serious mental problems arise, interventions and psychiatric treatment can be used, but only if the child is compliant with the treatment.