Psychological Aspects Of Childhood Cancer Research Paper

At the end of the twentieth century, there is a consensus about the necessity of an honest explanation of the life-threatening nature of the disease to the child. The statistical survival rates, however, do not indicate the prognosis in an individual case, turning the former threat of certainty of death to the threat of uncertainty of the very personal fate. ‘Damocles syndrome’ is the term Koocher and O’Malley (1981) have coined to characterize the psychological situation of the family that has terminated oncological therapy but cannot be sure definitely to have defeated the disease.

1. Psychological Adaptation To Childhood Cancer As A Balance Of Stress And Resources

The occurence of childhood cancer is not associated with any known predisposing social or psychological feature in the child or in the family. Its presence can be regarded a randomly occuring highly stressful life event for ‘normal’ families. As a consequence, psychological research and intervention is not concerned with the detection of suspected psychological causes of cancer but with an understanding of the stress impact imposed by cancer diagnosis on the child’s and family’s psychological functioning and well-being.

The risk of the child or the family to master or to fail the turmoils of the cancer experience may be compared to a balance with one scale pan containing all the stressors resulting from the disease and the other scale pan containing all the resources, competencies, and sources of social support to handle the stress. In some vulnerable families, the strong stressors and demands clearly outweigh only weak resources, thus increasing the probability of emotional suffering and behavioral disturbance in the child and the risk of marital discord or parental depression. Other families are characterized by resilience, i.e., the available resources are strong enough to outweigh the threatening disease impact, thus giving rise to a good adjustment and a personal sense of mastery. Actually, the large majority of patients succeed in mastering the plethora of disease and treatment-related stressors and challenges (Noll et al. 1999).

2. Enhancement Of Effective Coping With Childhood Cancer By Family Counseling

Understanding adaptation to childhood cancer as a psychological balance between burden and resources may serve as a basis for effective psychological counselling strategies. Therefore, the therapeutical task on the way to enhancement of adaptation is a twofold one: the first one is to decrease stress impact and the second one is to increase resource availablity. In order to develop concrete counseling strategies for intervention, a differentiated knowledge is required of the most common and threatening sources of stress, on the one hand, and of the most powerful resources that can be mobilized, on the other. Selected typical stressors for the family of the cancer-sick child are presented in Table 1. They cover practical, emotional, social, and existential domains. As a counterpart, Table 2 shows important resources that can buffer and diminish cancer stress impact, improve adaptation, stabilize quality of life, and protect individual family members and the whole family structure from decompensation. Research has highlighted the central role of family communication behavior. For instance, the intensity of interparental exchange about disease issues is connected closely to an improved parent–child contact and a high disease related information level in the child and the siblings. A fair and respectful sharing of the new burdens and tasks is associated with a high family coherence and stability (Noeker et al. 1990).

3. Psychological Counseling Strategies And Interventions Across Different Phases Of Childhood Cancer Treatment

Based on the knowledge of typical stress and resource factors in families with childhood cancer, psychological counseling programs have been developed (Chesler and Barbarin 1987, Noeker et al. 1990). The counseling interventions are related closely to the specific stressors that characterize certain phases of treatment course. Counseling sessions may take place at the clinic or at home. Basically, all family members should join them; however, also sessions with family subsystems may be indicated, e.g., when mother and father want to find out an agreement on consistent parenting behavior. In the following, selected topics and strategies of a psychological counseling program are delineated according to the major phases of anticancer treatment process.

3.1 Supporting The Initial Coping With Cancer Diagnosis

After being told the diagnosis of childhood cancer, most parents show strong affective reactions like shock, sadness, anger, despair. The primary task of the counselor here is to show nonjudging acceptance of these emotions and to verbalize and clarify them. Ideosyncratic parental lay theories on why exactly their own child has got cancer may interfere with the medical treatment concept. When exploring these subjective disease and treatment concepts special attention has to be paid to frequent parental conceptions of feeling personally responsible and guilty for cancer manifestation (e.g., via genetics, bad food, psychological stress). Psychological clarification and integration of the strong emotional reactions and as well as a stepwise restructuring of inappropriate disease concepts improve the parents’ cognitive capacity for understanding and accepting the oncological treatment concept.

The next major counseling task is to initiate an active, mutually respectful, and supportive coping attitude and behavior within the family unit including:

(a) clarification and expression what kind of support every person in the family needs most from other family members for stabilizing outer and inner equilibrium;

(b) encouragement of open communication and expression of personal feelings, concerns, sorrows, and anxieties among the family members; and

(c) creation of a shared commitment to regard the cancer disease as a common challenge for the entire family.

3.2 Phase OF Intensive Oncological Treatment

After the family has overcome the initial shock of cancer diagnosis psychological counseling should assess primary vulnerability and resource factors in the child or in the family. Factors of vulnerability that were already present before diagnosis (e.g., behavioral or developmental disorders in the child, intense sibling rivalry, marital discord, inconsistent parenting styles, socioeconomic disadvantages) may interfere with a competent adaptation to demands of disease and treatment. Their assessment improves the chances for early and preventive intervention. At least as important as the assessment of risks and deficits, however, is the exploration of strenghts and competencies. If a counselor turns the family’s attention to positive experiences of crises in the past that were resolved successfully, problem-solving strategies may be reactivated that have proven specific effectivity in this individual family. In addition, psychological counseling in this phase includes:

(a) Encouraging active participation in the management of the illness;

(b) Initiating clear and practical responsibilities for the day-to-day management of additional chores and tasks; making sure that agreements are perceived as a fair sharing of the burden by every family member;

(c) Parenting issues (e.g., ways to show affection without spoiling and pity);

(d) Mobilization and acceptance of concrete social support from neighborhood or classmates; and

(e) Facilitating communication between family and healthcare team.

3.3 Positive Course: Long-Term Remission Of Disease And Process Of Reintegration

After termination of intensive oncological therapy, anxieties stay alive in patient and family concerning a return of the disease which would require a completely new start of therapy with, however, decreased chances for cure. Families suffer from intrusive thoughts and emotions concerning cancer relapse. Cognitive-behavioral intervention strategies can support the patient and family members to observe these recurrent thoughts consciously, to accept them as a natural reaction to their unnormal situation, and at the same time, to not to get too much involved every time anxieties arise. In addition, counselor and family may cautiously anticipate and go through possible responses and options for the case of an actually occuring relapse.

Termination of therapy also requires encouragment of the child to give up their sick role and corresponding privelegies and to promote the social reintegration in previous roles, groups, and obligations.

3.4 Negative Disease Course: Recurrent Relapses, End-Stage Of Disease, Death, And Dying

The diagnosis of cancer recurrency requires a similar accepting and verbalizing counseling behavior concerning the intense emotional reactions as in the former diagnosis shock. This process may include a clarification of ambivalent tendencies towards continuation or discontinuation of oncological treatment since the parents wish to maintain any chance for cure, on the one hand, and do not want to make the child suffer from a stressful but senseless therapy, on the other. With the worsening of treatment course, the threat of loss of the child is gradually intensified leading to the following counseling topics:

(a) Preparing parents for communication with the child on death and dying. Finding individually appropriate images integrating truth and hope;

(b) Searching for phantasies on a good way to spend the remaining time together; development of other important goals besides survival like e.g., freedom from pain; and

(c) Enhancing imagery on a suitable way of parting in dignity.

If the child actually dies, it is important to say that the therapy failed and not the child or the family. The family’s engagement shown for the child should be acknowledged. Individually suitable mourning rituals may be conceived that combine keeping related to the deceased child and, at the same time, letting them go. Family members may be encouraged to take their time for mourning and grief according to their very personal needs not according to expectations of their social network.

Summarized, many counseling interventions focus on the enhancement of open and clear family communication. The mobilization of this key resource for effective coping with the burden of childhood cancer may refer to the intrafamilial exchange of personal needs and concerns, the practical organization of day-to-day routines, or the subtle communication between parents and child about their chances of survival.

Effective extrafamilial communication may refer to establishing cooperation and agreements with the staff or to mobilizing and accepting support from the extended social network. If such competencies are not only applied but even refined during the treatment process, the ‘cancer experience’ may even stimulate processes of individual maturity and family coherence.

4. From A ‘Protective’ To An Open Approach

There follow some guidelines on how to inform children with cancer about their diagnosis. Some decades ago, a so-called ‘protective’ approach was preferred which consisted of not telling the child the life-theratening nature of the disease. In the meantime, not only changes in ethical considerations but also the progress in medical treatment options have led to a broad consensus that there is no responsible alternative to telling the truth even to preschool children. Today, medical progress allows the combination of the bad news of cancer diagnosis with the good news of reasonable hope for cure. Therefore, telling children the truth includes two realistic key messages: first, that death has to be expected if no treatment is performed, and second, that even treatment does not necessarily guarantee survival. Information given to the child should be appropriate to their cognitive and emotional age and maturity. In small children, showing concrete treatment procedures and instruments and offering plausible explanations for sensory experiences like vomiting during chemotherapy is more effective than abstract explanations about malignant cells. An approach that avoids telling the truth implies serious medical and psychological ‘side-effects’ to be considered:

(a) A child will not accept the enormously distressing treatment procedures without the awareness of the serious consequences in case of therapy refusal. Thus, true information is necessary for compliance with treatment, and compliance with treatment is necessary for medical treatment success.

(b) Children who lack plausible information on their condition tend to develop other explanations for the occurrence of their disease (Eiser 1993). A frequent one is the conception that the illness represents a punishment for own misbehavior.

(c) Trust in the parents is one of the most important psychological resources for the child to protect them from feelings of loneliness and depression. A child uncovering the parents’ well-meant lies will not only have to struggle with the adversities of disease and treatment but, in addition, with social alienation.

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