Cancer in Children: Clinical Management, 5th Edition

Chapter 9. Psychosocial issues

Bob F. Last

Martha A. Grootenhuis

Introduction

Today approximately two-thirds of children with cancer survive their illness. This also means that one-third of children diagnosed with cancer still die as a result of their illness. Children with cancer generally die because the treatment was not successful after a relapse, or as a consequence of therapy complications. Although chances of survival decrease after a recurrence of the disease, an increasing number of children with relapse do survive, or their lives can be prolonged. Survival rates of children with cancer have increased dramatically in recent decades. In the developed countries about one in every 1000 adults reaching the age of 20 years will be a long-term survivor. This progress in medical care has changed the focus in paediatric psychooncology from descriptions of the impact of expectation of death of the child to estimating the impact of living with and after treatment for cancer on the quality of life of the child and the family. The whole family has the difficult task of adjusting to a situation dominated by the stresses of long-lasting uncertainty and uncontrollability. The emotional consequences for the children, parents, siblings, and survivors will be described.

Experiences like hospitalization, undergoing painful medical procedures and multiple operations, or taking medicines affect physical, cognitive, and social–emotional development. Parents are facing the stresses and concerns of raising a child suffering from a disease with an unpredictable course and outcome. How children and parents cope with the disease and its consequences contributes to good or poor adjustment. In the second part of this chapter coping, communication, and child-rearing issues will be discussed as important intermediate factors. Suggestions for support are given in the third section of this chapter. A special section is dedicated to the palliative phase, because this period demands different strengths from the child and the parents.

Emotional reactions

Appraisal

People evaluate the significance of events for their well-being through cognitive appraisal processes. Each specific emotion corresponds to a different appraisal, a different situational meaning structure.1Every situation consists of different components. The component which is dominant for a person determines which emotion will arise. Components which are important in the appraisal of the situation for children with cancer and their parents are uncertainty, uncontrollability of the situation, responsibility, restriction of freedom, and the long duration of the situation. Uncertainty about the course and outcome of the disease is a condition related to hope and fear. Indications pointing to a remission of the disease contribute to a feeling of hope and trust, while indications of a relapse or recurrence of the disease evoke feelings of fear that all efforts will be unsuccessful. Being confronted with cancer means being confronted with uncontrollability, which easily evokes feelings of helplessness. Children and parents cannot influence the disease or the treatment process very much. This is in the hands of doctors and nurses. The child has to undergo many painful medical procedures while parents stand by helplessly. The child is frequently unable to attend school, participate in sports, and/or play with friends. Parents have to make arrangements for work, housekeeping, holidays, support for the siblings, and so on. These limitations of freedom of action evoke feelings of frustration and anger. The answer to the question as to who or what is responsible for the situation is related to feelings of guilt if the person feels that he or she is to blame, or anger if someone else is to blame. Long duration of the threatening situation is associated with feelings of exhaustion and depression if the child or parent does not perceive an end to the suffering.

Children

The family of a child with cancer lives under high emotional distress during the medical treatment of the ill child. Children are faced with repeated invasive medical procedures as part of their treatment or as a method for evaluating the effectiveness of treatment. Frequent visits to the hospital ward are common, especially when the treatment is of long duration or when complications occur. The family is confronted with constant uncertainty regarding the course of the disease and its prognosis, and with changes in the ill child's physical condition, appearance, and behavioural reactions to the illness.

Children differ from adults. From birth until adulthood children are in a process of physical, cognitive, emotional, and social development. In developing their abilities to cope with their environment children are dependent on adults. Together they are in a child-rearing relationship, in which the parents play an important role. Younger children need their parents to cope with basic fears and basic desires and also with the demands of socialization. Older children need their parents in learning to cope with questions related to physical growth, development of personal identity, and difficulties of functioning in peer groups. Children also differ from adults in their understanding and experience of health, illness, and medical care. Depending on the child's developmental level special needs have to be met in the context of the family (parents, siblings) and the wider social environment (friends, school, health care workers).

Improvement in treatment schemes has resulted in a better quality of life during treatment compared with some decades ago. An example is the increase of treatment in day-care centers. Nevertheless, children with cancer experience much physical discomfort during treatment. Feelings of anxiety can easily arise when confronted with painful medical procedures like bone marrow aspiration, lumbar puncture, and venepuncture. Supportive care programmes aimed at preparing children for these procedures have been shown to be effective in reducing negative emotions. Isolation of children (in case of bone marrow transplantation or radio-isotope treatment) can evoke heightened levels of separation anxiety, especially in younger children. In the outpatient treatment period, children with cancer can find it difficult to return to school, which may result in school phobia if proper support is absent. However, studies of emotional functioning of children have not revealed deviant emotional functioning in terms of psychiatric disorders. Like children suffering from a chronic disease, children with cancer tend to develop more submissive and less assertive behaviour.

Since the 1980s, quality of life has been included in studies of the consequences of chronic illness for adults and, more recently, children. The current consensus on the assessment of quality of life is to include at least four domains: physical, cognitive, social, and emotional functioning. Health-related quality of life (HRQoL) refers to the specific impact of an illness, injury, or medical treatment on an individual's quality of life. The effects of childhood cancer and its treatment often increase the child's dependence on his or her parents and other adults and decrease participation in peer- and school-based activities. This could have an adverse effect on the accomplishment of developmental tasks, resulting in an impaired quality of life.

A number of studies have shown implications for quality of life and various areas of functioning when a child is confronted with treatment for cancer. Perhaps one of the major findings is that prophylactic treatment of children with acute lymphoblastic leukaemia (ALL) by cranial radiation affects cognitive development negatively, particularly if this treatment is given at an early age.2 Many children with cancer experience school-related problems, which create difficulties with academic work as well as jeopardizing social relationships.3 In many paediatric oncology units part of the intervention programme involves helping children to return to school and to respond to the questions and reactions of others.

Parents

Until the prognosis of childhood cancer improved, studies mainly focused on how parents dealt with the threatened and almost certain loss of their children. Particular emotional reactions for parents were feelings of anger, blame, grief, and guilt. With the increased survival of children with cancer, parents have to deal with the uncertainty and unpredictability of childhood cancer. Many studies have been conducted among parents of children with cancer and different reactions have been reported for different phases of treatment.4 Researchers who focused on parents of newly diagnosed children, or children who are in treatment, have reported increased emotional distress such as anxiety or depression compared with normal subjects. In longitudinal studies increased negative emotions such as anxiety, depression, insomnia, or somatic and social dysfunctioning are also found shortly after diagnosis. Uncertainty and loneliness were the most frequently reported problems in a study conducted by Van Dongen-Melman et al5 Being a mother, low socio-economic status, no religious affiliation, other chronic disease in the family, and concurrent stresses were important risk factors for more emotional problems of parents in this study, and these risk factors have also been reported in other studies. It has been argued that parents of children with cancer are at risk for post-traumatic stress symptoms (PTSS). Highly anxious parents are at particular risk for PTSS and they may benefit from approaches (such as enhancing self-efficacy) that decrease anxiety during and after treatment.6

Survivors

Since the introduction of modern therapies (around 1980) more children with cancer are surviving their illness. Therefore the interest in the side effects of cancer treatment in cancer survivors has increased. These side effects include both medical and psychosocial problems that influence the survivors' quality of life. While many survivors have no physical evidence of disease and appear to have made full recoveries, others have to come to terms with the chronic, debilitating, or delayed effects of therapy. All remain at risk for the development of late sequelae of the former disease and/or treatment and of second malignancies. Furthermore, in most cases the life-threatening experience of cancer is never forgotten (see also Chapter 11).

Most research about survivors shows that they function well psychologically. However, some studies report that survivors have lower rates of marriage and parenthood, job discrimination, difficulties in obtaining work, and problems in obtaining health and life insurance, as well as worries about reproductive capacity and/or future health problems in their children. Clinical reports suggest that many survivors of childhood cancer experience fatigue as a long-term effect of their treatment.7

Although inconsistent data have been reported across studies, the following factors related to the functioning of survivors have been discussed. Female gender, older age at follow-up, greater number of relapses, presence of severe functional impairment, cranial irradiation, and minority survivors are associated with an increased risk of emotional problems. Survivors of central nervous system tumours and ALL seem to be at risk for educational deficits. The same is true for cranial irradiation and early age at diagnosis. Finally, survivors of bone tumours are more likely to perceive their health as fair or poor, and also report lower physical functioning than controls.

Siblings

When a child is diagnosed with cancer, siblings experience their own distress. They have to adapt to the idea that their brother or sister is ill, to changing roles in the family, and to a sudden decrease in attention from their already overburdened parents. Siblings may be overwhelmed by fear for the health of their brother or sister and by fear for their own health, by guilt for not being sick themselves, by concerns for their parents, and by feelings of isolation, jealousy, anger, and frustration.8 The siblings of the child with cancer need to adapt to these changes, to additional responsibilities, to a decreased physical and emotional availability of the parents, and to intrusive and conflicting emotions. Whether or not siblings are able to adapt depends on the resilience of the family and the child. There is some evidence for the hypothesis that psychosocial distress is temporary. Although emotional problems diminish over time, siblings may still experience limitations in their social interactions for a longer period. Adolescent girls seem to be especially at risk for internalizing problems.

Coping, communication, and child-rearing issues

Coping

‘Coping’ is the term used to describe how a person deals with a stressful situation. Lazarus and Folkman9 define the coping process as ‘cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of a person’. One's perceptions, or cognitive appraisals, are important elements in regulating distress or managing the problem causing the distress. Problem-focused coping involves direct efforts to ameliorate the problem causing the distress, whereas emotion-focused coping is directed towards regulating effects surrounding a stressful experience.9 People not only have emotions, they also handle them. When a family has to cope with the life-threatening illness of a child, there is little that family members can do to change the situation or exert control over it. Without control, family members have to rely on emotion-focusing coping strategies or cognitive control strategies. The following disease-related cognitive control strategies are often seen in children with cancer and their parents.10 They can rely on the competence of the medical specialists and keep faith in the treatment regimen (vicarious control). They can try to remain optimistic about the course of the disease and the future and wish for better times (predictive control). Furthermore, they can try to understand the situation in order to gain a sense of control by finding information and sharing feelings with other (interpretative control). Parent's intensive use of the Internet shows the reliance on this control strategy. Apart from information seeking, social support is also an important coping strategy for parents of children with cancer. Social resources can reinterpret the meaning of the situation so that it seems less threatening, or may provide distraction from their concerns.

One of the best-known ways of coping is the use of denial. Individuals facing a lifethreatening illness often go through a phase of denial; they try to protect themselves from painful or frightening information related to external reality. Whether denial is a negative force or can be considered as adaptive is a point of controversy. Denial can be useful, but in the long run it can also lead a patient to conceal serious physical complaints. This is the difference between denial of facts and denial of implications. Patients who are able to function effectively and are able to maintain a high degree of optimism, behaviour that may be viewed as denial, can also be viewed, from a cognitive viewpoint, as using ‘selective information processing’ or considered to be showing healthy denial. The term ‘resilience’ has been introduced to bridge the gap between the differing viewpoints. It describes the strengths and abilities of patients' and families, who can ‘bounce back’ from the stress and challenges they face and eliminate, or minimize, negative outcomes.11 It is the experience of many health care providers that patients or families show the ability to adapt to stress and to be able to cope with a threatening situation. This capacity to keep on going is what is meant by ‘being resilient’. This corresponds to the work of Folkman and Moskowitz12 who stress the importance of positive reappraisal (reframing a situation in a positive light) in coping with a chronic illness.

Communication

Communication about the disease involves two aspects: exchange of information about the disease and exchange of emotions evoked by the situation. To a large extent, communication between child and parents consists of attempts to reduce uncertainty and increase control. Information about the disease can reduce the child's uncertainty. It enables the child to distinguish better between events that are threatening and events that are not. It provides the child with a safety signal and is an important means of achieving control of the situation. The beneficial effects of open information on the child's emotional functioning have been shown in various studies.13 Open information motivates the child to make an (ongoing) effort to endure the highly aversive treatment. Moreover, understanding what is wrong with you can itself provide some sense of control. However, knowing and understanding the facts, given the nature of the situation, is not enough for setting up an effective barrier against the threat. Thus most of the communication concentrates on protection from the arousal of negative emotions evoked by the threat.

In communication between child and parents, it is very striking that protecting oneself is often achieved through protecting the other. Attempts to influence the other's appraisal in order to reduce his or her negative emotions not only involve showing compassion and empathy, but also serve to protect oneself against confrontation with the other's emotions. This is called the law of double protection. It is essential for the child to believe that his or her parents are strong; if they can handle the situation, it gives the signal that the threat can be averted. The parents, in turn, need to believe that the child is strong; if the child can handle the situation, it strengthens their confidence that the child will survive. The parents' avoidance of discussing their worries and grief related to the illness prevents the child from thinking about it, and protects the parents from being confronted with the child's emotions. We also find this phenomenon in the child. Not asking questions which might worry the parents, hiding grief, and being brave are attempts at preventing the parents from being distressed and themselves from being overwhelmed by the parents' emotions. The child should not be forced to talk about the disease, but a response should be made to the often subtle hints which children give when they want to talk about the situation. An area of tension exists between the need to control the situation by double protection and the need to share emotions with the other person. If the threatening stimuli and the emotions are too strong to be denied, then the need for sympathy and support becomes dominant. Open communication fulfils this need. Concealing facts which cannot remain hidden from the child strengthens the child's cognition that ‘it is too bad to talk about’.

Open information enables the child to discriminate between facts and the implications of those facts. By supplying the facts and simultaneously offering reassurance and hope of a favourable outcome, the child will again be in a position to build up self-protection. Open information is a necessary condition for effective self-protection.

Child-rearing attitude

Parents of children with cancer have a difficult task. They are faced with the threat of a possible loss of their child and have to find a way of coping with the emotions that arise from the situation. Moreover, they have to comfort their child and give him or her the support that is needed during hospitalization and medical treatments which are often painful. It is understandable that most parents tend to be more indulgent and protective to their seriously ill child than they were before the illness was diagnosed. Changes in behaviour as a result of the side effects of treatment (e.g. aggressiveness during periods in which the child is given the drug dexamethasone) can be very difficult for the parents to handle. In general, a more protective attitude is not harmful for the child's development, but over-indulgence without setting limits and structuring the child's behaviour will increase feelings of uncertainty in the child. The same is true for the siblings in the family. The focus of the parents is on the child with cancer and the other children often receive less attention from their parents for a period of time. Parents may have feelings of guilt towards their other children, resulting in an over-indulgent attitude. Alternatively, parents may react more restrictively to their other siblings by changing their child-rearing values since daily worries seem less important. In reaction, the siblings may withdraw themselves from family life. In giving support to the parents one should be aware of these possible changes in child rearing and discuss their problems in this area in an open way.

Support

Guidelines for support

In caring for children with cancer and their families it is helpful to ask three questions on a regular basis.14

1.   What situational characteristics (uncertainty about the course of the disease, restriction of freedom of action, uncontrollability, or responsibility) are dominating for the child or the parents?

2.   Which coping strategies do the child or the parents use and are these strategies (still) effective? In other words, which emotions are dominant?

3.   What sources of support are available and do the child and/or parents use these possibilities of social and/or professional support?

In coping with a stressful situation, children and parents use the various control strategies in a specific way. Psychosocial intervention is indicated if control fails and subsequently the child and/or parents need support in rebuilding their defences. At such a moment, the child and/or parents are no longer able to control their emotions themselves and rely on different control strategies. For example, if a child is very scared about the course of the disease, we should look critically at the amount and content of information he or she has about the illness (enhance interpretative control). If the child fears a negative outcome of the disease and shows little confidence in his or her doctor, it may be necessary to give information and enhance faith in the treatment and physician (enhance vicarious control).

An awareness of the developmental and cognitive levels of the child at the time of diagnosis, and the psychologic and situational status of the family, is crucial for providing appropriate interventions. An important guideline in psychosocial preventive care is encouragement of open communication within the family and the wider social environment. It is helpful to ask the child and the parents regularly about their concerns and worries.

In all phases of the disease it may be necessary to refer the child, the parents, or other family members for professional help by a psychologist, social worker, or psychiatrist. Frequent reasons for referral are questions about the cognitive development of the child and school-functioning, difficult behaviour related to side effects of treatment, emotional problems and the need to change ineffective coping strategies, support in reorganizing family life, and financial problems.

Close cooperation between the paediatric oncologist and the psychosocial coworkers is a precondition for effective preventive and supportive psychosocial care. Bereavement follow-up care of parents and siblings, which is an integral part of terminal care, should be integrated into the psychosocial care of families. Continuing improvements in outcomes of cancer therapy and in psychotherapeutic treatment will reduce the psychologic impact and assist with the child and family's adjustment to childhood cancer.

Palliative phase

If the disease cannot be cured the treatment will be focused on palliation. However, in most cases it is not possible to define the terminal period very clearly. Often, the child with cancer is on a sliding slope with worsening prognosis, but the pendulum of hope and fear remains present for a long time. In these circumstances an important role is reserved for the doctor. Giving open information by telling the child and the parents that the treatment is no longer aimed at curing the disease but on palliation of symptoms will bring forward the process of grief and mourning.

After a long period of uncertainty there is now certainty about what can be expected from medical treatment. Research has shown that children with cancer, as early as the age of 4 years, develop a notion of their own mortality based on their experiences with the disease.13 Their concept of death is linked with their developmental stage: a very young child will perceive death as temporary; in the elementary school period the concept of death develops to a more final separation; from the age of 12 the child knows that death is a universal phenomenon that is related to everything living.15 In the palliative phase it is important that the child can express his or her thoughts and emotions about the impending death. In this period children need to be reassured that they will not be left alone and they will not endure unnecessary pain. The words that will be used to talk about the meaning of death will depend on the family's beliefs and religion and the age of the child. Some children want to talk specifically about certain wishes, about what they want to do once more, or about the organization of the funeral. Young children may discuss these matters in an indirect way, by making a drawing or by telling a story. In approaching the child it is important to be open to these subtle hints.

For the parents, the message that the child cannot be cured is a shock. Disbelief and the notion that what was feared are becoming reality now often go hand in hand. Thoughts about how the death of their child might come and about the funeral, but also about what fine moments with the child will be missed, evoke feelings of pain and grief. Sometimes parents do not communicate with each other about these thoughts and feelings in order to protect each other.

Often parents fear the way that their child will die. Will my child suffer from needless pain? Will it happen when I am not there? In this period parents are often very irritable. They may be angry not only with the doctor who cannot cure their child, but also with other people in their environment because they are in a condition of heightened irritability with little interest in others. During the child's illness, parents suffer from feelings of guilt. These feelings might arise from perceived shortcomings in meeting the needs of the child, or from questioning whether everything has been done to cure the disease. During these days most parents live in a situation of heightened alertness. They may be very active and want to spend most of the time with the dying child. Sometimes they doubt whether they are strong enough to hold on, especially if other burdensome circumstances are present, such as marital problems, unemployment, health problems in other family members, or financial problems.

For parents, it is important to experience moments of warm closeness and intimacy with the child which they can look back on gratefully later. Many parents describe a change of values in their life. Some goals (e.g. material wishes) become less important, while others, like enjoying family time, are more valued. In many cases these changes in values are long lasting.

In conclusion, it should always be possible for a declining child to die without unnecessary physical pain, fear, or anxiety. It is essential that he or she receives adequate medical, spiritual, and psychologic support, and at no point feels abandoned. Palliative care, in the terminal phase of cancer, should be tailored to the different needs and desires of the child and the family, with the aim of providing the best possible quality of life for the days that remain.

References

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2. Jankovic M, Brouwers P, Valsecchi MG, et al. (1994). Association of 1800 cGy cranial irradiation with intellectual function in children with acute lymphoblastic leukaemia. ISPACC. International Study Group on Psychosocial Aspects of Childhood Cancer. Lancet 344, 224–7.

3. Eiser E (2001). Cancer. In: Koot HM, Wallander JL (eds) Quality of Life in Child and Adolescent Illness. Concepts, Methods and Findings. Hove, UK: Brunner–Routledge, 267–96.

4. Grootenhuis MA, Last BF (1997). Adjustment and coping by parents of children with cancer: a review of the literature. Support Care Cancer 5, 466–84.

5. Van Dongen-Melman JE, Pruyn JF, De Groot A, Koot HM, Hahlen K, Verhulst FC (1995). Late psychosocial consequences for parents of children who survived cancer. J Pediatr Psychol 20, 567–86.

6. Best M, Streisand R, Catania L, Kazak AE (2001). Parental distress during pediatric leukemia and posttraumatic stress symptoms (PTSS) after treatment ends. J Pediatr Psychol 26, 299–307.

7. Langeveld NE, Grootenhuis MA, Voute PA, de Haan RJ, van den Bos C (2003). No excess fatigue in young adult survivors of childhood cancer. Eur J Cancer 39, 204–14

8. Zeltzer LK, Dolgin MJ, Sahler OJ, et al. (1996). Sibling adaptation to childhood cancer collaborative study: health outcomes of siblings of children with cancer. Med Pediatr Oncol 27, 98–107.

9. Lazarus RS, Folkman S (1984). Stress, Appraisal, and Coping. New York: Springer.

10. Grootenhuis MA, Last BF (2001). Children with cancer with different survival perspectives: defensiveness, control strategies, and psychological adjustment. Psycho-Oncology 10, 305–14.

11. Patterson JM (1995). Promoting resilience in families experiencing stress. Pediatr Clin North Am 42, 47–63.

12. Folkman S, Moskowitz JT (2000). Positive affect and the other side of coping. Am Psychol 55, 647–54.

13. Van Veldhuizen AM, Last BF (1991). Children with Cancer. Communication and Emotions. Lisse, The Netherlands: Swets & Zeitlinger.

14. Last BF, Grootenhuis MA (1998). Emotions, coping and the need for support in families of children with cancer: a model for psychosocial care. Patient Educ Couns 33, 169–79.

15. Eiser C (1990). Chronic Childhood Disease. An Introduction to Psychological Theory and Research. Cambridge, UK: Cambridge University Press.



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