Cancer therapy is unique and results in many unusual situations. It is frequently carried out by a team.1 It causes tremendous mental ahd social pressures in addition to those already being felt by the patient and the family affected by cancer. It requires treatment over a prolonged period. The management may utilize sophisticated diagnostic approaches; it may employ chemotherapy, radiotherapy, surgery, or other methods. Patients, as well as their families, often express a feeling of simply being "lost" in this deluge of management.
There are additional problems, relating to fear and guilt, that may affect the family and friends as well as the patient. There are special situations in which the person is forced to learn how to handle unkind or thoughtless comments. Children may be unmercifully teased over the loss of hair as a result of chemotherapy or radiation. The adjustment to the disease and its management, and the happiness of the child, may be just as important to the child and his parents as the dose of radiation or chemotherapeutic agent. In a rather large interdepartmental effort at our medical center, therapy groups of several types are being used as an adjunct to the other methods of cancer therapy. We believe that these group sessions help the patients, their family and friends, and the physicians caring for them adjust to the many additional problems posed by management of their unique situations.
The use of groups in assisting with the management of adult patients, as well as children, with cancer has been growing in recent years.1'4 Ablin and colleagues related that parents of hospitalized leukemic children sought one another in lounge areas.5'6 In so doing they formed spontaneous groups, since they regarded other parents as the most important sources of emotional support. Friedman et al. utilized the group concept to include families of hospitalized leukemic patients. They reported "highly gratifying results."7 Similar studies have been reported.8"14
In this article I will report on several types of groups that have been used at the University of New Mexico for patients who have cancer. It is hoped that others might be stimulated to employ this method in an attempt to provide more complete care for their patients with various types of cancer. The various groups have been developed by persons from several departments within the medical center. This interdisciplinary approach has provided expertise that probably was not present in any one department. The departments of internal medicine, pediatrics, family and community medicine, and psychiatry have all participated. Dr. John Saiki of the department of hematology has provided the stimulus for much of this coordinated work.
Some of these groups have employed specialized techniques that might be called encounter sessions. Other groups have used the format of instructional groups or have not been dominated by any specialized techniques. It is for this reason that, at this point, no term seems to quite describe the entire panel of group sessions used,
PARENTS OF CHILDREN WITH LEUKEMIA
This group has now been meeting for over two years and is handled in an informal "conference format" on a continuing basis.13 The group has been limited to parents of children with leukemia (Figure 1). The meetings have been held on a weekly basis during the first hour and a half of the hematology-leukemia clinic. The children are brought to the hospital early in the morning, and their blood is drawn for whatever tests are needed on that day. The children then go to a cancer playgroup session, and the parents are invited to the group session.
The composition of the staff has varied but has usually included, on a continuing basis, a medical social worker, a physician, and other staff personnel. There have been other persons-including psychiatrists, physicians, nurses, and medical students - who have attended the group for shorter periods. After 20 minutes or so of questions or light talk, the discussion turns to areas in which parents are able to share at a deeper level some of their problems, feelings, frustrations, and fears relating to their children's illness.
Several results were recurrently expressed by the parents as well as the staff as being either benefits from or outcomes of these group sessions. The parents reported relief at simply having a group where they could come together and say exactly what they felt. In their family and daily living, they were not allowed a situation where they could express the feelings of guilt or even hatred that at times appeared during the therapy of their children. Parents commented that they felt an easing of tensions in simply talking to other parents. Many said the group helped them tackle their own problems, such as denial of the children's illness and subsequent depressions, to final acceptance of the illness. They felt a closeness and obtained more help from other parents in the group than from professional staff personnel, as "the staff are not walking where we walk." The group lent emotional support during crises when each family needed it. Such support was particularly needed during periods of unusual illness or when families faced problems associated with depression.
It was also of value, from the standpoint of both staff and parents, to learn that there is a great need on the part of the children to express anger. This related both to treatment and to the disease itself. Most parents feït a significant improvement in the behavior of their children when they allowed the children to express their true feelings and did not attempt to repress them, as is so commonly done in family living. During the sessions death and dying were frequent subjects for discussion. This often was the first opportunity the parents had to discuss their feelings on these matters. By expressing some of their own thoughts within the group, they found it much easier to help prepare their children and the siblings for such discussions.
Many parents encountered problems in handling overindulgent grandparents or other relatives or friends who made unfortunate comments or would actually tease the ill children. Parents shared solutions to this problem and learned how they could support their children in such situations. Many parents felt a need to share the stresses encountered in simply living with uncertainty. Many found it very difficult to discipline their ill children. The children learned this very easily and soon would manipulate the parents into untenable situations. Most of the parents in the group felt that discipline should be administered in the same manner as before the child was ill. When families adapted their disciplinary behavior to this, it solved many problems for the child who was ill and those that had arisen with siblings.
Parents also found it helpful to have the staff describe to them, in greater detail in the group than was customary in the clinic, how the various procedures related to therapy were done and why they were done. The parents felt that, by having this type of preparation, they could explain the various procedures to the children. The children accepted this interpretation more readily from the parents than from the staff. who usually were in a hurry to perform the procedures in the clinic.
Family therapy is currently used as a treatment method in many areas by therapists in the behavioral sciences. It has recently found a place in family practice and psychiatry. In this setting the therapist or physician in an office or home attempts to define problem areas within the family in the presence of the whole family. With the entire family present, problems can be identified and the therapist or physician can be in a better position to help the family work towards solutions. It is useful to observe family interaction, both verbal and nonverbal, in this setting. By such observations the physician gets ready information on interpersonal relationships, on various growth patterns within the family, on identity crises or role problems, and on physical and social interactions.
Many families with a child who has cancer have additional stresses; family therapy can be an opening to discussion for them. In one family it was realized that when the child was diagnosed as having cancer, the father suddenly began to avoid the child. He increasingly retreated into his work. He returned to work in the evenings and abdicated all care of the child to the mother. When one of the children pointed this out to the father, he realized that it was important to the whole family for him to play a more active role in the care of the child with cancer. As the family continued in therapy, they felt that the father's participation actually provided support for the family rather than being divisive as had his earlier absence.
In another case in which a child with cancer was being followed in family therapy, the misbehavior of siblings was discussed, This took the form of teasing or calling the ill child names. The extra concern of the parents for the sick child was interpreted by the siblings as more love. The sick child was not punished as often or as severely as the other children, and the siblings resented this. They also saw school absences and trips to the doctor as favoritism, since this was time alone with one or both of the parents for the child who had cancer. The siblings actually had very little understanding of the illness and its treatment, nor did they have much understanding that the disease would ultimately be fatal. When the other children were given some understanding of these things and, at the same time, were allowed to share their feelings with the parents regarding "special treatment and punishment," both parents and the other children were able to adjust considerably.
Traditional family therapy can also be of value because it is in this milieu that most of the interactions of children with cancer occur. This can be an important source of comprehensive care for the entire family undergoing cancer treatment.
A seminar was started as an interdisciplinary effort by the staff from the departments of pediatrics, internal medicine, education, hematology, oncology, surgery, family practice, and renal diseases, including medical students in addition to members of the house staff. The purpose of this staff seminar was to deal with problems in understanding the care of patients with terminal diseases. This group was started as a sharing session in which members were invited to bring their problem patient, or to present their problems in dealing with terminal diseases. Most of the patients or problems were linked to situations arising from patients' having cancer. The members participating in this seminar ranged from full professors to freshman medical students, and represented a broad spectrum of hospital staff personnel. There were no definite ground rules, although first-name usage was felt to be important.
One intern brought in a patient for whom there were honest differences of opinion about how therapy should be managed. This led to a very provocative discussion about how a particular physician's belief in therapy influenced the patient's decision to accept or reject therapy. It was a problem for physicians at all levels of training and experience to control their own decision, either justly or unjustly, to influence their patients' decisions. It was felt that, indeed, physicians did influence their patients' decisions regarding therapy; each physician had to understand this and have his own feelings enter into the situation in an appropriate manner. It was interesting that many physicians had avoided this approach to looking at their recommendations for therapy. Several physicians pointed out the deficiency of "pure medical" or "pure surgical" conferences in which therapy decisions are made. These conferences are often an attempt on the part of physicians to avoid the fact that they should also consider their patients' feelings regarding therapy that may be difficult; cause illness, social trauma, or social problems; or necessitate disfiguring operations.
Figure 1. One of the group sessions in which mothers of children who have leukemia have been meeting to discuss problems related to understanding of the disease and their reactions to the disease and its management.
One of the staff members who had had a cancer operation shared his feelings regarding postoperative depression. None in the group had realized the importance and the frequency with which postoperative depression is encountered. Many felt that after this experience they would be more perceptive and would be receptive to these feelings in their patients.
It was pointed out that many physicians would refer to psychiatry for assistance in dealing with situational or social problems relating to chemotherapy or other cancer therapy in their children rather than handle this relationship themselves. At one point in this discussion, a physician jumped up and almost shouted that "it's damned difficult." All physicians felt that referring a case to psychiatry is frequently an "escape" physicians use. In most cases the primary physician caring for his patient during cancer chemotherapy is able to best manage the psychologic problems himself if he is able to examine his own feelings and those of the patient.
This group also brought to several members of the team the realization of the importance of utilizing the patient's resources. For instance, there are a number of people in the community who can help their patients deal with questions associated with death and dying. In some cases a family member, a social worker, a minister, or friends may be helpful. Deeper understanding by physicians and other team members was obtained when they realized that the play therapist had to translate a dying child's problems to the rest of the families and children in the unit. The physicians did not realize that the therapist had to do this until she one day shouted, "Speak to me!"
It was felt that a staff seminar of the health care delivery team caring for children with cancer can alter the behavior of physicians and other team members. Such a group can help develop a deeper understanding of the team concept. Patients made valuable contributions to the group, since this was a chance for them to speak directly to the whole team with suggestions or criticisms.
CHILDREN'S PLAYGROUP: CHILD LIFE PROGRAM
The department of pediatrics was instrumental, as part of its chiìd life program, in identifying a particular group that would pay attention to the children who have malignant diseases. The group for children undergoing cancer therapy has functioned as part of the hematology-o neology clinic in pediatrics. On clinic mornings, after the children have had their blood specimens drawn, the parents participate in the parents' group mentioned above. While the parents are in their group, the children attend a play-therapy session on the pediatrie ward in the hospital.
The children associate with other children who have leukemia and realize that these children are still attending school and are still able to laugh and play and enjoy one another. They learn that other children who have had the disease for a considerable time do survive and still have the ability to identify with one another. Children have developed close friendships and have been quite supportive of one another through difficult periods. The children are able to ventilate their true feelings and assist one another at play. Besides identifying with children within their own level, they relate across age differences. They are able to share what they think of their disease, how it makes them feel, and some of their hopes and fears.
This group has played a desensitizing role. In certain circumstances the children are allowed to play roles, and much of their role playing is directed towards helping them understand some of the therapeutic regimens they undergo (Figure 2). They play at giving injections to one another, performing lumbar punctures, and so on. There are some doll punching bags available, and with a vengeance the children named these for the various physicians and nurses responsible for their care. It is the feeling of the staff that this group has helped in the care of the children and in many cases has aborted potential or overt behavior problems. It has also assisted in helping the children understand work procedures and making their stay in the hospital much more tolerable.
PERSONAL GROWTH GROUP
Dr. Les Libo, from the department of psychiatry, started a group for adults and adolescent cancer patients. There are several comments he has made about this group that have been of benefit to the patients as well as to the staff. This particular group has helped solve loneliness problems. The patients have said that they feel an "emotional communion with one another."
Figure 2. Some of the children at play in the children's play groups that are a part of group therapy sessions at the University of New Mexico School of Medicine. These play groups have been of great value in helping children to understand their illness and how treatment relates to their daily lives. It allows them to share their problems with one another and has been of value in helping children verbalize their fears and feelings about their disease and treatment.
The group has met as a "staff on stage" type of group. They have purposely excluded informational exchanges and have dealt with their disease as it affects their feelings. The group has commented that, by encouraging the patients and staff to reveal their true feelings, they feel "liberated" and that by "being yourself you can truly accept yourself." This group has dealt with ways in which cancer patients may make life more pleasurable and more meaningful. They have stressed the importance of living each day more completely, getting to know each other more fully, and improving the quality of life together as a family, as friends, or in whatever way the situation might demand.
This was one group in which encounter-type techniques were used. It consisted of patients with malignancies, as well as staff and patients operating on a first-name basis only, frequently sitting on pillows on the floor, and employed some modern group techniques. One of the most valuable comments was made by a senior staff member, who noted that a feeling of relief and marked openness was generated by this group. He expressed this after having very hesitantly started working with his patients on a first-name basis.
Dr. Libo thinks that such a group should be as heterogeneous as possible in age, occupation, and disease. It was noted that in this group older persons related unusually well with youth. Also, he found it better to meet for longer times at wider intervals than to have frequent hourly meetings. It is also important for the staff to be humane and to provide the role model. Patients liked and trusted the staff much more when they could respond with feeling, allowing a touch, a hug, crying, laughter, etc. Generally it was felt to be more effective not to limit such a group to verbal levels of communication, but to use role playing, relaxation, awareness sessions, as well as other techniques.
It was felt that such a group can indeed help cancer patients live a better life. For the adults discussion of death was not so important as other things, because many of these patients had learned how to handle this. With children, however, it is sometimes necessary to spend some time in such discussion. Also, the members of these groups can help one another by visiting each other. Laryngectomy patients, patients on dialysis, or a mended-hearts club, for instance, can find people with whom to share problems. This has led to the growth of a friends group and a buddy system, by which two people will help support one another through various phases of their disease. While this group consisted of adults, some of these techniques can be used effectively in children's groups, either in a play group or in a more formalized setting.
Current therapeutic usage of the term "marathon sessions" normally means a prolonged period, such as 24 hours or a weekend, of more or less continuous activity relating to whatever problems are at hand. A "minimarathon session" of four hours during an afternoon has been developed for teenagers who have various types of cancer. Most of the teenagers fall into sarcoma, lymphoma, or leukemic groups. This intermittent "mini-marathon session" is the newest of the groups that have been formed for cancer patients. It is too early to tell what the eventual outcome of this group will be. Even after a few sessions, however, there has been some response that might be of value for others considering this sort of a group. This particular group met with six staff personnel and 13 youths ranging in age from 13 to 21.
From the very beginning the members of this group developed a close rapport with one another, and each felt a closeness that would encourage mutual support in various therapeutic settings. The feeling of unity within the group was so intense that four of the six staff persons felt very emotionally involved. These staff members often came close to tears and felt almost envious that, by a lack of disease, they were prohibited from close rapport with these youths.
The youths all commented that their disease brought them into a closer relationship with their parents than they had had before diagnosis. Since the advent of illness, each had experienced less stress in living with the family. This group more readily expressed a belief in magic or miracles related to treatment than has been experienced in the adult groups. The youths also expressed a greater and more intense religious belief and activity than have the adults in other groups. The youths also tended to be more self-policing. While sitting informally on pillows, they exhibited corrective behavior quite strongly. One of the members had given up and had refused to accept any more chemotherapy; the other members castigated him and insisted that he was making a mistake and should return to therapy.
As has been observed in other groups, the teen group readily realized that they had divided their world into a "sick world" and a "well world." The "sick world" included the people of the health care delivery team, their very close friends, girlfriends, boyfriends, or immediate family members. They were willing to invite people from the "sick world" to participate with them in this group therapy session. However, they explicitly stipulated that anyone from their "well world" life - such as schoolmates, associates, and friends who are less close- should be excluded from this group. They did not want their "weil world" friends to be exposed to their feelings and to the fact that they are ill, vomit, have diarrhea, etc.
This group appeared more ready to acknowledge the possibility of death and dying, associated particularly with relapses in their disease, than were some of the adults from the other groups. However, the youth group more .quickly tended to kick it out of their consciousness and, unlike the adult groups, did not spend much time discussing death and dying. For instance, when one of the group members died between sessions, one of the first comments made at the next session was that "he did not die of his disease."
The youths were very offended when they felt that someone was "babying them" or pitied them. They had many questions about dating and marriage and were defensive if they believed anyone would consider dating them out of pity. Most of this group still had high career goals; they still planned to continue their education and in general prepare for various careers. They also repeatedly expressed interest in finding methods to prevent their disease from interfering with their family life, since a continued healthy family life was very important to them.
This teenage group also formed a "buddy system." The group suggested this and urged the staff to form a buddy system. In this system one, two, or three people become better acquainted and feel that they know one another on a personal level. They make themselves available to help support another person at times of hospitalization or at the time of any other special need.
This is not an exhaustive review of all types of groups that can be used in the therapy of children with various types of malignancies. It does, however, outline how an interdisciplinary and interdepartmental approach can be utilized to help in the care of patients with cancer. The final answer is not yet in, but we certainly hope that the experiences gained here can be used to stimulate others to develop and study in a more scientific manner the use of such groups in the care of children with cancer.
1. Graham, J. R. Certain aspects of group psychotherapy. Unpublished observations, 1974.
2. Siegel, A. A hospital program for young adults. Arch. Gen. Psychiat. 22 (1970), 166.
3. Sorenson. E. T. Group therapy in a community hospital dialysis unit. J. A. M. A. 221 (1972), 899.
4. Linder. R. Mothers of disabled children: The value of weekly group meetings. Develop. Med. Child Neural. 12 (1970), 202.
5. Ablin, A, R., et al. A conference with the family of a leukemic child. Amer. J. Dis. Child. 122 (1971), 362.
6. Binger, C. M., et al. Childhood leukemia: Emotional impact on palient and family. New Engi. J. Med. 280 (1969), 414.
7. Friedman, S. B., et al. Behavioral observations on parents anticipating the death of a child. Pediatrics 32 (1963). 610.
8. Bozeman. M. F.. Orbach, C. E., and Sutherland, A.M. Psychological impact of cancer and its treatment. Ill : The adaptation of mothers to the threatened loss of their children through leukemia. Cancer 8 (1955). 1.
9. Natterson, J. M., and Knudson, A.G. Observations concerning fear of death in fatally ill children and their mothers. Psychosomatic Med. 22 (1960), 456.
10. Vernick, J., and Karon, M. Who's afraid of death on a leukemia ward? Amer. J. Dis. Child 109 (1965). 393,
11. Kubler-Ross, E. On Death and Dying, Sixth edition. New York: The Macmillan Company. 1970.
12. Group therapy eases pediatrie stay. Med. World News 55 (May 4, 1973), 56.
13. Helfron, \N,A., Bommelaere, K.. and Masters. R. Group discussions with the parents of leukemic children. Pediatrics 52 (1973). T31840.
14. Richards, A. I., and Schmale, A. H. Psychosocial conferences in medical oncology. Ann. Intern. Med. 80 (1974), 541-545.