The Child in Renal Failure Emotional Impact of Treatment on the Child and His Family
Tom F. Sampson, M.S.
Recent medical science and technological developments create social and emotional problems that necessitate new adjustments on the part of society, and an individual's inability to adapt may result in an increasing number of emotional problems due specifically to such medical advances. Kidney transplantation and chronic hemodialysis (treatment by an artificial kidney machine) are two sources of concern on the part of the mental health professions. Members have rarely studied the long-term effects despite the fact that the knowledge and sight of an individual who has received a kidney transplant or is being dialyzed have become commonplace. Largely unknown is the dayto-day behavior of patients and families as they live with the threat of death from chronic renal failure, and especially with the terms on which they are allowed to continue life, that is, the dialysis machine or a kidney transplant. While behavior under threat of death has been examined in parents and their children who have cystic fibrosis (Turk, 1964; Friedman et al., 1963; Jones, 1957; Jones and Mussen, 1958), congenital heart disease (Glaser et al., 1964; Green and Levitt, 1962), or childhood leukemia (Binger et al., 1969; Orbach et al., 1955; Chodoff et al., 1964), in renal failure the conditions under which life under the threat of death is continued are specific to that disorder. Since only a single diseased system is usually involved (Starzl et al., 1966), it is primarily with the young that the future of transplantation, and hence, to a larger degree, hemodialysis, lies. HerdMr. Sampson L' a clinical psychologist at the Southuiestern Dialssis Center, Dallas, Texas. This paper is a modified version of a paper originally presented at the Southwest Regional Meeting, American Orthopsychiatric Association, Galveston, Texas November 16-18, 1972. Reprints truly be requested from the author at Southuiestem Dialysis Center, 1525 W. Mockingbird Lane, Dalla" Texas 75235.
462
The Child in Renal Failure
463
man and Najarian (I96H) point out that in the past only 10 to 15 percent of the total number of renal transplant patients have been children; results equally as satisfactory as with adults and with longer survival rates can be expected in the future. Thus, an increase in the number of cases involving children can be anticipated, and society must become concerned with the social and emotional adaptations of children with a transplanted kidney and undergoing dialysis. Because of the newness of the procedures, there are few specific data available concerning the emotional and interpersonal adjustments of parents and their children who have received a transplanted kidney or who are on dialysis (Simmons et al., 1971; Kaplan De-Nour and Czaczkes, 1968; Fellner, 1971; Fellner and Marshall, 1968; Lewis, 1974). Few investigations have been directed at the adjustment and emotional responses of the child as well as his family. Of the studies that have, most have limited themselves to describing the acute psychological disturbances occurring during the immediate pre- and postoperative periods (Kernph, 1967; Wright et aI., 19(6). Bernstein (1970) has broadened that spectrum by including the instigation of dialysis and the rehabilitation period following hospital discharge. These investigations demonstrate that transplant operations and hemodialysis are generally quite stressful for the majority of the patients as well as for their families, and the stress has commonly been met through such psychological reactions as denial and depression in both the patient and his family (Schreiner and Maher, 1965). Cramond (1971) studied the impact of transplantation and dialysis on the family, finding that the chronic illness and treatment for the disease were sources of severe strain even in the most secure and well-integrated of families. Shifts in family interrelationships manifested by altered identities and roles were noted in an investigation by Kemph et al. (1969). This paper reports on follow-ups of children who underwent renal transplants and were on chronic hemodialysis, as well as on follow-ups of their families. It is an investigation and description of some of the social and emotional adaptations of the children and their families. Primary emphasis is placed on the intrapsychic and interpersonal alterations that occurred in the patients and the families. The results obtained regarding the adjustments and alterations of family interaction patterns of those on dialysis and of those with transplants will be discussed separately.
464
Tom F. Sampson PROCEDURE
Twenty-two children (15 females and 7 males), ranging in age from 10 to 18, and their families were studied by exploring their social a(~justments. their activity levels, their performance in school and at work, their family interactions, emotional status, and intrafarnily stress and unity. Of the 22, 14 had received a kidney from a member of the family, the mother in 12 instances, a father and an older sibling in the other 2. Of the 8 children on hemodialysis, 7 had no prospect of receiving a kidney from a living relative and therefore were waiting indefinitely for a cadaver kidney. The one remaining patient was undergoing dialysis while potential donors were being screened medically. The frequency of dialysis in each instance was three times per week. Of those 8 children being dialyzed, 2 had been taught to use the machine in the home, while the remaining 6 were dialyzed at the Center. Of the 22 families, 4 had been disrupted by divorce prior to the time the patient was brought to the clinic, the elapsed time between the divorce and the first clinic visit varying from 4 years to 10 months. In these families disrupted by divorce, 3 of the patients and their siblings lived with the mother, while the remaining patient lived transiently with both the mother and the father (see Table I). Tahle I Patien t- Family Chararte ristics Patient I
2 :~
4
5 fi
7 H
9 10 II
12
Is 14
15 16 17 IH
19 20 21 22
Sex
Age
F F M F M M F F M F F M M M F F F F F F F F
IH Is
Dialysis
17 IH lfi
17 15 15 17 12 16 16 17 15 II
10 IH 14 Ili
9 16
17
Transplant
Donor
Family Status
X X X
Mother Father Mother Mother
X X X X
Mother Mother Mother Sister
X
Mother
X X X X X X
Mother Mother Mother Mother Mother Mother
Married Married Divorced Married Married Married Married Married Married Married Married Divorced Married Married Divorced Divorced Married Married Married Married Married Married
X X X X
X X X X
465
The Child in Renal Failure
The patients and family members were evaluated psychologically within one week of the first clinic visit, except in 4 instances, and before any medical treatment of the child was initiated. The study included a 2-hour structured interview with the patient and his parents, administration of the Wechsler Intelligence Scale for Children and Draw-A-Person test to the child, and the Wechsler Adult Intelligence Scale, Rorschach, and Minnesota Multiphasic Personality Inventory to at least one of the parents. The follow-up interviews of the child who had received a kidney transplant and of his family began upon the first visit to the clinic after his discharge from the hospital, and interviews were conducted at each clinic visit thereafter. For those children on dialysis and their families, interviews were conducted after the first week of dialysis, and then at monthly intervals. Specific areas explored with the patients to assess both their preand posttreatment level of functioning were: school performance, behavior change, affect, activity level, and social and peer relationships. Areas of concentration for the family as a unit were: family unity, patient-parent and patient-sibling relationships, father-mother relationships, relationship of child patient with donor, and family stress. DIALYSIS
The Child For the child on dialysis, age is a determining factor in his capacity to comprehend the nature of his disease and the necessary medical procedures. The patient and his family experience end-stage renal disease with hemodialysis as a nonspecific stress. We noted in our sample of patients, during the early phases of dialysis, withdrawal behavior under the impact of illness and painful treatment, as Anna Freud (1952) had described for other patients. These children slept as much as possible and tended to shun interaction with those around them. Initially, most of them manifested a mild depressive reaction due to loss of health, activity, and altered family relationships. They employed denial to escape their unwanted situation, whatever their ages. Regression was more frequent in the younger patients, who reverted to earlier learned methods of coping with stress, such as crying, whining, and demanding behavior. These reactions were particularly prevalent when one or both parents were allowed to visit them while they were on dialysis. The withdrawal behavior of the children was modified with time. The weeks of continuing treatments forced the withdrawing pa-
466
Torn F. Sampson
tient into continued contact with the staff: the repeated nature of the treatments pressed him to communicate more actively and accept the reality of his situation. Anxiety related to fears of pain and altered body image persisted, and anxiety was aroused further by immobilization: being "on the machine" produced feelings of dependency and hostility. As a consequence, the hostility of the child patient was often directed to the staff of the unit. In contrast to the withdrawn child were those children who showed a coping mechanism characterized by a readiness to interact with others. These children were immediately open to all manner of help and nursing care, and became increasingly dependent upon the staff and their families. They profited from the secondary gains, the extra attention, the comforting acts of the staff and family. While the withdrawn group tended to ask for pain medication apparently to escape, we gained the impression that their counterparts who asked for medication did so largely because of the personal attention attached to it. School as well as nonschool activities were drastically curtailed. Dialysis is a time-consuming procedure (about 18 hours weekly), and is usually performed during the time a child would normally be in school. 'The child talked more spontaneously about his feelings of sadness because of missing his peers and falling behind in school. The isolation appeared more acute for the younger child than for the adolescent. Only 2 of the 8 children on hemodialysis made concerted efforts to return to school or to obtain homebound teaching. In the remaining 6 children, the unwillingness to return was motivated primarily by the fear of being different and therefore alienated from their peers. The school records of the 6 revealed that they had been fair to poor students, while the 2 who participated in the homebound program were above average scholars. It appears, then, that the children with poor educational productivity and little enthusiasm for school prior to the procedures utilized their illness and treatment as reasons for less participation in any kind of educational activity. The Family
The dependency nurturing of the family added to the child's reluctance to participate in school and social activities. The families tended to approach the child as fragile and became unduly authoritative and overprotective in the management of the child's disease. The overprotection was more noticeable in the families in which the child patient had had a long history of renal disease and other
The Child in Renal Failure
467
health problems. Interdependency. usually between the patient and the mother, had developed, and had thereby limited the patient's opportunity and capacity to engage in age-specific developmental tasks. The results ill these patients were reflected ill immaturity, disturbed relationships with others, and difficulty in delaying impulse discharge; hence, they handled stress poorly. These patients and their parents were more demanding of the staff and seemed to project their hostility onto the staff. Patient-mother relationships became increasingly close in all instances. In 2 of the 3 families in which divorce had occurred. the existing interdependent child-mother relationship progressed to further overinvolvement and overidentification between the two. The patients reported feeling closer to their mothers since the beginning of dialysis, but they did not report an increase in closeness of relationship with their fathers. It will be noted later that the same phenomenon occurred between the patients who received a kidney transplan t and their donors, who were almost excl usively their mothers. The patients found it easier to talk with their mothers about a wider variety of topics than they had before treatment. Conspicuously missing from their increased range of conversation, however. was the patients' disease, other than the harmless and benign vagaries of how they might be feeling on that day. It is interesting that age and sex seemed to have an effect upon the degree of closeness of the relationship with either parent as reported by the patients. Of the female patients, 2, ages 10 and II, described a feeling of increased intimacy with their parents since the initiation of dialysis. In contrast, of the 6 adolescent patients, each reported the relationship with his parents to be only slightly closer than it had been prior to dialysis. This seemed to be part icularly the case fOJ' the 4 males. The males seemed to continue to keep their strong allegiances to their peer groups, despite the fact that their normal dailv association with them had decreased sharply. The adolescent 'males did not enjoy the same opportunity for intimacy with a significant adult as that enjoyed by the younger patients, and of being able to turn to another in time of need. These adolescent patients tended to remain withdrawn and subdued in their interactions with the staff and their fellow patients. Essentially the same behavior was observed by the parents in the home. The increased involvement and identification of the mother with the patient were observed by both parents. The mothers viewed it as an integral part of their role obligations, and denied that they thought it had interfe-red in any real way with their roles of wife or
46H
Tom F. Sampson
mother to the remaining children. They did acknowledge that they were removed from the rest of the family in a physical sense more than previously, but felt sure all members "understood" the necessity of it. A fceling of role displacement was prominent ill the fathers in these families. Resentment was related to two sources: their wives and their jobs. The fathers felt their wives were not allowing them to perform their role of father with the child, and displaced them as heads of the family by conferring with the staff and relating information to them secondhand. Their work prevented them from being at the Center on each day the child received treatment, causing resentment of their jobs. Spouse dominance was not observed to shift in any other area. Those families which had been father-dominant prior to diagnosis and treatment continued to be so afterward, with the specific exception that the wife conferred with staff almost exclusively alone, but even then not in a decision-making capacity. By the same token, families which were mother-dominant during the prediagnosis and pretreatment periods continued to be so following the instigation of treatment. T'he st rcss and disru ption caused by the prcscncc of a child with a diagnosed terminal disease and its subsequent treatment seemed to accentuate the preexisting family interaction patterns. Families which had demonstrated poor or potentially poor adjustment previously experienced an attenuation of their adjustment patterns following the discovery of the child's renal failure. Decision-making, problem-solving ability and willingness to discuss interactions became increasingly more difficult for these families. The effect on those families disrupted by divorce was to exclude the hither, increasing his emotional distance from his children and especially from the patient. In each such case, the relationship that did exist between the divorced partners became more brittle. The close-knit family was also observed, however. Families which were unified became even more cohesive while going through the same painful experiences. To be sure, they encountered moments of disruption when the stress became acutely intense, e.g., emergency hospitalization, but then they regained their equilibrium. Unlike the families which had been poorly adjusted previously, there were fewer reports of sibling jealousy toward the patient, drop in school performance, or acting-out behavior in the home in those families showing greater unity. The nature of the adjustment made by the family to the knowledge of the child's terminal disease was determined in part by the
The Child in Renal Failure
469
suddenness of onset and whether or not the instigation of dialysis was immediately necessary. Sudden appearance of symptoms, particularly in cases in which there had been no previous history of kidney problems documented by other physicians, followed closely by dialysis, proved to be most difficult for all families. When renal failure had been diagnosed in the child months or years prior to his coming to the Center, the time interval had allowed for at least a marginal adjustment. Numerous hospitalizations and visits to the doctor, restricted diets, and decreased social activities over a period of time seemed to have conditioned these families to the extremes of each that they were to encounter; whereas the family in the acute onset situation found all of this "dumped" on them suddenly and without warning. KIDNEy'rRANSPLANTS
The Child Before the Transplant The child who receives a kidney transplant and his family experience virtually the same problems and adjustments as the child on dialysis, because in each instance the child who received the kidney underwent the same diagnostic procedures and dialysis as well. The period of dialysis for these children was considerably shorter, however, lasting only as long as it took to screen all potential donors in an effort to obtain the best possible match. The child receiving a kidney transplant and his family were aware that the term of dialysis was in all likelihood not going to be long, thus making it more tolerable. Furthermore, there was the hope of a more normal life with a transplant. Unlike the children on long-term dialysis, however, the child and family awaiting the transplant hung in limbo. The uncertainty which surrounded the question of whether or not the transplant would take place, and, if so, when, produced marked frustration. The result was a disruption in their usual style of life, causing time virtually to stand still for them. The patient himself seemed to have no desire, nor did he make any effort, to introject himself in any way back into his pretreatment life; indeed, of the desires he did have, all seemed to be pleasure-oriented. For this period, the patients' kidney disease proved to be a handicap that prevented them from having boyfriends or girlfriends; they dated rarely, and then mostly in groups. Their peer relationships became scarce, and most of the patients' time was spent in more or less isolated activities, such as watching television, reading, or doing household chores.
470
Tom F. Sampson
Noticeably absent was planning for the future. Future time perspective shrank to the immediate, and in no case extended beyond that nebulous transplant date. We had noticed before that all possible future activities discussed by these patients were contingent upon "if I get my transplant," or if they were older, "if my transplant works." Accompanying the shortened future time perspective was difficulty in postponing gratification of desires. These children were reacting to a situation in which they seemed to feel there was a possibility that their wishes and goals might never be realized, and that they had better get what they could while they could. Like those children on long-term hemodialysis, the patient on dialysis prior to transplant initially experienced an anxiety stress reaction, which was in most cases mild. The severity of the anxiety appeared to be dependent upon the patient's prior ability to adjust to stress, and upon parental anxiety about managing their chronically ill child. Mild depressive reactions were apparent in the patient, his mood fluctuating with the speed with which his potential donors were worked up. Unlike the patients on long-term dialysis, the group on dialysis awaiting transplant commonly did not show withdrawal. The child awaiting a transplant adapted to dialysis more easily than the patient who had little hope of an imminent transplant. He appeared more alert to his surroundings and curious about the machine itself, although he continued to see hemodialysis as a threat. Transplantation was approached by the child with considerable ambivalence. In the initial phases of the extensive preparations of the patient and of the donor, if the patient was to receive a kidney from a relative, the patient was enthusiastic and in high anticipation. He was eager to talk with the staff about his upcoming transplant, and what laboratory or other medical tests he and his donor had undergone. At this point in his preparation or period of waiting for a kidney, he was not, however, anxious to hear the results of the tests, or what he could expect of a kidney transplant. Virtually every patient seemed to have created a fantasy that his "new kidney" would make a "new person" of him or do so much more than allow him better health. Explanations of what the surgery itself would be like and what limitations he would have following the transplant were not well received, because they did not confirm his expectations of being a "new person." As the date for the transplant was set and grew nearer, the patients evidenced more tension and anxiety (see Lewis et al. [1969], especially: "When she was confronted by the reality of the procedures, increasing anxiety altered her perception" [p, 146]). Al-
The Child in Renal Failure
471
though, as was described earlier, the children were initially anxious to relate their expectations and "pleasant" fantasies about what the transplant would do for them, as that time grew nearer, their behavior evidenced the presence of frightening fantasies. much like those described by Toker (1971) in children who were to undergo heart operations. They began to show an interest in the more "mundane" aspects of the surgery and transplant, e.g., would it hurt very bad? How long would they be in the hospital? Would they have to dialyze afterward? Although in some respects the patients were interested in obtaining real and factual information, they continued to cling to their fantasies about the life they would have following transplantation. One such boy was certain he would now be able to play football in high school and follow in the footsteps of his brother who had done so, who had received an athletic scholarship, and who was held in high esteem by the bunily and cornmunitv.
The Child After the Transplant Following discharge from the hospital, the patients reported feeling unhappy, noted worrying, and were observed to be mildly depressed. The female patients admitted to periodic crying accompanying their depression. Such dysphoria was found at its peak three to four weeks after hospital discharge, when it became apparent to them that they were not "like new" and that continued close medical supervision would be required. A diminution in their worrying and unhappiness occurred after approximately two to three months, or when the time between clinic visits lengthened. The patients' emotional status, it became apparent, was directly related to their fears of rejection of the kidney and actual rejection episodes. Hospitalization and an increase in frequency of clinic visits following rejection crises resulted in depressive reactions and, in the younger patients, in regression. Preoccupation with the new kidney and problems of rejection were ever-present, regardless of the length of the posttransplant period. In the majority of the cases, there was an exaggerated concern about the status of the new kidney, the effect of which was a dramatic decrease in their level of activity compared to that of their preillness level. An additional factor involved family pressure to remain inactive, which will be discussed in a later section. Despite the fact that all patients were physically capable of returning to school within three months after surgery, only 2 did so. Return to school proved to be a period of particular stress. Difficulties were encountered in adapting their
472
Tom F. Sampson
new self-concept to the environment outside the family. Immunosuppressive drugs causing a Cushingoid appearance resulted in identity problems, altered body image, and feelings of inferiority leading to apprehension about returning to school. These children were reported by their parents as preferring to stay at home, as being moody and quiet, watching more television, and as sleeping later.
Thl' Famif)' The child with the newly transplanted kidney occupied a special place in the family, the result of which in most of the families was a behavior change noted in the other siblings. In one instance, siblingjealousy led a sister to pack a patient's suitcase for him to leave. Because of the fact that the sick child required a great deal of the parents' time and energy, the siblings often felt pushed aside, and thought that the patient occupied a more important position than they. There was resentment toward the patient and their parents, especially by the younger siblings, with the feeling that the patient was being treated as a "baby." Thus, for the majority of the siblings, the special treatment provided the patient produced fedings of being displaced. Their reactions led them to challenge the parents actively as to whether or not the patient was actually still sick, and also to display hostile behavior in the home. After all, had not the patient received a new kidney? The "special" relationship between the patient and the donor often placed husband and wife at odds over such family matters as discipline of the patient and other siblings, and how much freedom to allow the patient. The alliance formed between the donor and the patient tended to place the parents at polar opposites. The alliance seemed to providc the parent-donor many of the emotional supplies earlier derived from the spouse. In two instances, however, the strains on the family brought them closer, even in the one family that had previously been on the brink of separation. Despite the extremely disrupting effects of kidney transplantation upon the family, the effects did not appear to be permanent, with few exceptions, and the swing back to normal or near-normal came rel
Tom F. Sampson, M.S.
Recent medical science and technological developments create social and emotional problems that necessitate new adjustments on the part of society, and an individual's inability to adapt may result in an increasing number of emotional problems due specifically to such medical advances. Kidney transplantation and chronic hemodialysis (treatment by an artificial kidney machine) are two sources of concern on the part of the mental health professions. Members have rarely studied the long-term effects despite the fact that the knowledge and sight of an individual who has received a kidney transplant or is being dialyzed have become commonplace. Largely unknown is the dayto-day behavior of patients and families as they live with the threat of death from chronic renal failure, and especially with the terms on which they are allowed to continue life, that is, the dialysis machine or a kidney transplant. While behavior under threat of death has been examined in parents and their children who have cystic fibrosis (Turk, 1964; Friedman et al., 1963; Jones, 1957; Jones and Mussen, 1958), congenital heart disease (Glaser et al., 1964; Green and Levitt, 1962), or childhood leukemia (Binger et al., 1969; Orbach et al., 1955; Chodoff et al., 1964), in renal failure the conditions under which life under the threat of death is continued are specific to that disorder. Since only a single diseased system is usually involved (Starzl et al., 1966), it is primarily with the young that the future of transplantation, and hence, to a larger degree, hemodialysis, lies. HerdMr. Sampson L' a clinical psychologist at the Southuiestern Dialssis Center, Dallas, Texas. This paper is a modified version of a paper originally presented at the Southwest Regional Meeting, American Orthopsychiatric Association, Galveston, Texas November 16-18, 1972. Reprints truly be requested from the author at Southuiestem Dialysis Center, 1525 W. Mockingbird Lane, Dalla" Texas 75235.
462
The Child in Renal Failure
463
man and Najarian (I96H) point out that in the past only 10 to 15 percent of the total number of renal transplant patients have been children; results equally as satisfactory as with adults and with longer survival rates can be expected in the future. Thus, an increase in the number of cases involving children can be anticipated, and society must become concerned with the social and emotional adaptations of children with a transplanted kidney and undergoing dialysis. Because of the newness of the procedures, there are few specific data available concerning the emotional and interpersonal adjustments of parents and their children who have received a transplanted kidney or who are on dialysis (Simmons et al., 1971; Kaplan De-Nour and Czaczkes, 1968; Fellner, 1971; Fellner and Marshall, 1968; Lewis, 1974). Few investigations have been directed at the adjustment and emotional responses of the child as well as his family. Of the studies that have, most have limited themselves to describing the acute psychological disturbances occurring during the immediate pre- and postoperative periods (Kernph, 1967; Wright et aI., 19(6). Bernstein (1970) has broadened that spectrum by including the instigation of dialysis and the rehabilitation period following hospital discharge. These investigations demonstrate that transplant operations and hemodialysis are generally quite stressful for the majority of the patients as well as for their families, and the stress has commonly been met through such psychological reactions as denial and depression in both the patient and his family (Schreiner and Maher, 1965). Cramond (1971) studied the impact of transplantation and dialysis on the family, finding that the chronic illness and treatment for the disease were sources of severe strain even in the most secure and well-integrated of families. Shifts in family interrelationships manifested by altered identities and roles were noted in an investigation by Kemph et al. (1969). This paper reports on follow-ups of children who underwent renal transplants and were on chronic hemodialysis, as well as on follow-ups of their families. It is an investigation and description of some of the social and emotional adaptations of the children and their families. Primary emphasis is placed on the intrapsychic and interpersonal alterations that occurred in the patients and the families. The results obtained regarding the adjustments and alterations of family interaction patterns of those on dialysis and of those with transplants will be discussed separately.
464
Tom F. Sampson PROCEDURE
Twenty-two children (15 females and 7 males), ranging in age from 10 to 18, and their families were studied by exploring their social a(~justments. their activity levels, their performance in school and at work, their family interactions, emotional status, and intrafarnily stress and unity. Of the 22, 14 had received a kidney from a member of the family, the mother in 12 instances, a father and an older sibling in the other 2. Of the 8 children on hemodialysis, 7 had no prospect of receiving a kidney from a living relative and therefore were waiting indefinitely for a cadaver kidney. The one remaining patient was undergoing dialysis while potential donors were being screened medically. The frequency of dialysis in each instance was three times per week. Of those 8 children being dialyzed, 2 had been taught to use the machine in the home, while the remaining 6 were dialyzed at the Center. Of the 22 families, 4 had been disrupted by divorce prior to the time the patient was brought to the clinic, the elapsed time between the divorce and the first clinic visit varying from 4 years to 10 months. In these families disrupted by divorce, 3 of the patients and their siblings lived with the mother, while the remaining patient lived transiently with both the mother and the father (see Table I). Tahle I Patien t- Family Chararte ristics Patient I
2 :~
4
5 fi
7 H
9 10 II
12
Is 14
15 16 17 IH
19 20 21 22
Sex
Age
F F M F M M F F M F F M M M F F F F F F F F
IH Is
Dialysis
17 IH lfi
17 15 15 17 12 16 16 17 15 II
10 IH 14 Ili
9 16
17
Transplant
Donor
Family Status
X X X
Mother Father Mother Mother
X X X X
Mother Mother Mother Sister
X
Mother
X X X X X X
Mother Mother Mother Mother Mother Mother
Married Married Divorced Married Married Married Married Married Married Married Married Divorced Married Married Divorced Divorced Married Married Married Married Married Married
X X X X
X X X X
465
The Child in Renal Failure
The patients and family members were evaluated psychologically within one week of the first clinic visit, except in 4 instances, and before any medical treatment of the child was initiated. The study included a 2-hour structured interview with the patient and his parents, administration of the Wechsler Intelligence Scale for Children and Draw-A-Person test to the child, and the Wechsler Adult Intelligence Scale, Rorschach, and Minnesota Multiphasic Personality Inventory to at least one of the parents. The follow-up interviews of the child who had received a kidney transplant and of his family began upon the first visit to the clinic after his discharge from the hospital, and interviews were conducted at each clinic visit thereafter. For those children on dialysis and their families, interviews were conducted after the first week of dialysis, and then at monthly intervals. Specific areas explored with the patients to assess both their preand posttreatment level of functioning were: school performance, behavior change, affect, activity level, and social and peer relationships. Areas of concentration for the family as a unit were: family unity, patient-parent and patient-sibling relationships, father-mother relationships, relationship of child patient with donor, and family stress. DIALYSIS
The Child For the child on dialysis, age is a determining factor in his capacity to comprehend the nature of his disease and the necessary medical procedures. The patient and his family experience end-stage renal disease with hemodialysis as a nonspecific stress. We noted in our sample of patients, during the early phases of dialysis, withdrawal behavior under the impact of illness and painful treatment, as Anna Freud (1952) had described for other patients. These children slept as much as possible and tended to shun interaction with those around them. Initially, most of them manifested a mild depressive reaction due to loss of health, activity, and altered family relationships. They employed denial to escape their unwanted situation, whatever their ages. Regression was more frequent in the younger patients, who reverted to earlier learned methods of coping with stress, such as crying, whining, and demanding behavior. These reactions were particularly prevalent when one or both parents were allowed to visit them while they were on dialysis. The withdrawal behavior of the children was modified with time. The weeks of continuing treatments forced the withdrawing pa-
466
Torn F. Sampson
tient into continued contact with the staff: the repeated nature of the treatments pressed him to communicate more actively and accept the reality of his situation. Anxiety related to fears of pain and altered body image persisted, and anxiety was aroused further by immobilization: being "on the machine" produced feelings of dependency and hostility. As a consequence, the hostility of the child patient was often directed to the staff of the unit. In contrast to the withdrawn child were those children who showed a coping mechanism characterized by a readiness to interact with others. These children were immediately open to all manner of help and nursing care, and became increasingly dependent upon the staff and their families. They profited from the secondary gains, the extra attention, the comforting acts of the staff and family. While the withdrawn group tended to ask for pain medication apparently to escape, we gained the impression that their counterparts who asked for medication did so largely because of the personal attention attached to it. School as well as nonschool activities were drastically curtailed. Dialysis is a time-consuming procedure (about 18 hours weekly), and is usually performed during the time a child would normally be in school. 'The child talked more spontaneously about his feelings of sadness because of missing his peers and falling behind in school. The isolation appeared more acute for the younger child than for the adolescent. Only 2 of the 8 children on hemodialysis made concerted efforts to return to school or to obtain homebound teaching. In the remaining 6 children, the unwillingness to return was motivated primarily by the fear of being different and therefore alienated from their peers. The school records of the 6 revealed that they had been fair to poor students, while the 2 who participated in the homebound program were above average scholars. It appears, then, that the children with poor educational productivity and little enthusiasm for school prior to the procedures utilized their illness and treatment as reasons for less participation in any kind of educational activity. The Family
The dependency nurturing of the family added to the child's reluctance to participate in school and social activities. The families tended to approach the child as fragile and became unduly authoritative and overprotective in the management of the child's disease. The overprotection was more noticeable in the families in which the child patient had had a long history of renal disease and other
The Child in Renal Failure
467
health problems. Interdependency. usually between the patient and the mother, had developed, and had thereby limited the patient's opportunity and capacity to engage in age-specific developmental tasks. The results ill these patients were reflected ill immaturity, disturbed relationships with others, and difficulty in delaying impulse discharge; hence, they handled stress poorly. These patients and their parents were more demanding of the staff and seemed to project their hostility onto the staff. Patient-mother relationships became increasingly close in all instances. In 2 of the 3 families in which divorce had occurred. the existing interdependent child-mother relationship progressed to further overinvolvement and overidentification between the two. The patients reported feeling closer to their mothers since the beginning of dialysis, but they did not report an increase in closeness of relationship with their fathers. It will be noted later that the same phenomenon occurred between the patients who received a kidney transplan t and their donors, who were almost excl usively their mothers. The patients found it easier to talk with their mothers about a wider variety of topics than they had before treatment. Conspicuously missing from their increased range of conversation, however. was the patients' disease, other than the harmless and benign vagaries of how they might be feeling on that day. It is interesting that age and sex seemed to have an effect upon the degree of closeness of the relationship with either parent as reported by the patients. Of the female patients, 2, ages 10 and II, described a feeling of increased intimacy with their parents since the initiation of dialysis. In contrast, of the 6 adolescent patients, each reported the relationship with his parents to be only slightly closer than it had been prior to dialysis. This seemed to be part icularly the case fOJ' the 4 males. The males seemed to continue to keep their strong allegiances to their peer groups, despite the fact that their normal dailv association with them had decreased sharply. The adolescent 'males did not enjoy the same opportunity for intimacy with a significant adult as that enjoyed by the younger patients, and of being able to turn to another in time of need. These adolescent patients tended to remain withdrawn and subdued in their interactions with the staff and their fellow patients. Essentially the same behavior was observed by the parents in the home. The increased involvement and identification of the mother with the patient were observed by both parents. The mothers viewed it as an integral part of their role obligations, and denied that they thought it had interfe-red in any real way with their roles of wife or
46H
Tom F. Sampson
mother to the remaining children. They did acknowledge that they were removed from the rest of the family in a physical sense more than previously, but felt sure all members "understood" the necessity of it. A fceling of role displacement was prominent ill the fathers in these families. Resentment was related to two sources: their wives and their jobs. The fathers felt their wives were not allowing them to perform their role of father with the child, and displaced them as heads of the family by conferring with the staff and relating information to them secondhand. Their work prevented them from being at the Center on each day the child received treatment, causing resentment of their jobs. Spouse dominance was not observed to shift in any other area. Those families which had been father-dominant prior to diagnosis and treatment continued to be so afterward, with the specific exception that the wife conferred with staff almost exclusively alone, but even then not in a decision-making capacity. By the same token, families which were mother-dominant during the prediagnosis and pretreatment periods continued to be so following the instigation of treatment. T'he st rcss and disru ption caused by the prcscncc of a child with a diagnosed terminal disease and its subsequent treatment seemed to accentuate the preexisting family interaction patterns. Families which had demonstrated poor or potentially poor adjustment previously experienced an attenuation of their adjustment patterns following the discovery of the child's renal failure. Decision-making, problem-solving ability and willingness to discuss interactions became increasingly more difficult for these families. The effect on those families disrupted by divorce was to exclude the hither, increasing his emotional distance from his children and especially from the patient. In each such case, the relationship that did exist between the divorced partners became more brittle. The close-knit family was also observed, however. Families which were unified became even more cohesive while going through the same painful experiences. To be sure, they encountered moments of disruption when the stress became acutely intense, e.g., emergency hospitalization, but then they regained their equilibrium. Unlike the families which had been poorly adjusted previously, there were fewer reports of sibling jealousy toward the patient, drop in school performance, or acting-out behavior in the home in those families showing greater unity. The nature of the adjustment made by the family to the knowledge of the child's terminal disease was determined in part by the
The Child in Renal Failure
469
suddenness of onset and whether or not the instigation of dialysis was immediately necessary. Sudden appearance of symptoms, particularly in cases in which there had been no previous history of kidney problems documented by other physicians, followed closely by dialysis, proved to be most difficult for all families. When renal failure had been diagnosed in the child months or years prior to his coming to the Center, the time interval had allowed for at least a marginal adjustment. Numerous hospitalizations and visits to the doctor, restricted diets, and decreased social activities over a period of time seemed to have conditioned these families to the extremes of each that they were to encounter; whereas the family in the acute onset situation found all of this "dumped" on them suddenly and without warning. KIDNEy'rRANSPLANTS
The Child Before the Transplant The child who receives a kidney transplant and his family experience virtually the same problems and adjustments as the child on dialysis, because in each instance the child who received the kidney underwent the same diagnostic procedures and dialysis as well. The period of dialysis for these children was considerably shorter, however, lasting only as long as it took to screen all potential donors in an effort to obtain the best possible match. The child receiving a kidney transplant and his family were aware that the term of dialysis was in all likelihood not going to be long, thus making it more tolerable. Furthermore, there was the hope of a more normal life with a transplant. Unlike the children on long-term dialysis, however, the child and family awaiting the transplant hung in limbo. The uncertainty which surrounded the question of whether or not the transplant would take place, and, if so, when, produced marked frustration. The result was a disruption in their usual style of life, causing time virtually to stand still for them. The patient himself seemed to have no desire, nor did he make any effort, to introject himself in any way back into his pretreatment life; indeed, of the desires he did have, all seemed to be pleasure-oriented. For this period, the patients' kidney disease proved to be a handicap that prevented them from having boyfriends or girlfriends; they dated rarely, and then mostly in groups. Their peer relationships became scarce, and most of the patients' time was spent in more or less isolated activities, such as watching television, reading, or doing household chores.
470
Tom F. Sampson
Noticeably absent was planning for the future. Future time perspective shrank to the immediate, and in no case extended beyond that nebulous transplant date. We had noticed before that all possible future activities discussed by these patients were contingent upon "if I get my transplant," or if they were older, "if my transplant works." Accompanying the shortened future time perspective was difficulty in postponing gratification of desires. These children were reacting to a situation in which they seemed to feel there was a possibility that their wishes and goals might never be realized, and that they had better get what they could while they could. Like those children on long-term hemodialysis, the patient on dialysis prior to transplant initially experienced an anxiety stress reaction, which was in most cases mild. The severity of the anxiety appeared to be dependent upon the patient's prior ability to adjust to stress, and upon parental anxiety about managing their chronically ill child. Mild depressive reactions were apparent in the patient, his mood fluctuating with the speed with which his potential donors were worked up. Unlike the patients on long-term dialysis, the group on dialysis awaiting transplant commonly did not show withdrawal. The child awaiting a transplant adapted to dialysis more easily than the patient who had little hope of an imminent transplant. He appeared more alert to his surroundings and curious about the machine itself, although he continued to see hemodialysis as a threat. Transplantation was approached by the child with considerable ambivalence. In the initial phases of the extensive preparations of the patient and of the donor, if the patient was to receive a kidney from a relative, the patient was enthusiastic and in high anticipation. He was eager to talk with the staff about his upcoming transplant, and what laboratory or other medical tests he and his donor had undergone. At this point in his preparation or period of waiting for a kidney, he was not, however, anxious to hear the results of the tests, or what he could expect of a kidney transplant. Virtually every patient seemed to have created a fantasy that his "new kidney" would make a "new person" of him or do so much more than allow him better health. Explanations of what the surgery itself would be like and what limitations he would have following the transplant were not well received, because they did not confirm his expectations of being a "new person." As the date for the transplant was set and grew nearer, the patients evidenced more tension and anxiety (see Lewis et al. [1969], especially: "When she was confronted by the reality of the procedures, increasing anxiety altered her perception" [p, 146]). Al-
The Child in Renal Failure
471
though, as was described earlier, the children were initially anxious to relate their expectations and "pleasant" fantasies about what the transplant would do for them, as that time grew nearer, their behavior evidenced the presence of frightening fantasies. much like those described by Toker (1971) in children who were to undergo heart operations. They began to show an interest in the more "mundane" aspects of the surgery and transplant, e.g., would it hurt very bad? How long would they be in the hospital? Would they have to dialyze afterward? Although in some respects the patients were interested in obtaining real and factual information, they continued to cling to their fantasies about the life they would have following transplantation. One such boy was certain he would now be able to play football in high school and follow in the footsteps of his brother who had done so, who had received an athletic scholarship, and who was held in high esteem by the bunily and cornmunitv.
The Child After the Transplant Following discharge from the hospital, the patients reported feeling unhappy, noted worrying, and were observed to be mildly depressed. The female patients admitted to periodic crying accompanying their depression. Such dysphoria was found at its peak three to four weeks after hospital discharge, when it became apparent to them that they were not "like new" and that continued close medical supervision would be required. A diminution in their worrying and unhappiness occurred after approximately two to three months, or when the time between clinic visits lengthened. The patients' emotional status, it became apparent, was directly related to their fears of rejection of the kidney and actual rejection episodes. Hospitalization and an increase in frequency of clinic visits following rejection crises resulted in depressive reactions and, in the younger patients, in regression. Preoccupation with the new kidney and problems of rejection were ever-present, regardless of the length of the posttransplant period. In the majority of the cases, there was an exaggerated concern about the status of the new kidney, the effect of which was a dramatic decrease in their level of activity compared to that of their preillness level. An additional factor involved family pressure to remain inactive, which will be discussed in a later section. Despite the fact that all patients were physically capable of returning to school within three months after surgery, only 2 did so. Return to school proved to be a period of particular stress. Difficulties were encountered in adapting their
472
Tom F. Sampson
new self-concept to the environment outside the family. Immunosuppressive drugs causing a Cushingoid appearance resulted in identity problems, altered body image, and feelings of inferiority leading to apprehension about returning to school. These children were reported by their parents as preferring to stay at home, as being moody and quiet, watching more television, and as sleeping later.
Thl' Famif)' The child with the newly transplanted kidney occupied a special place in the family, the result of which in most of the families was a behavior change noted in the other siblings. In one instance, siblingjealousy led a sister to pack a patient's suitcase for him to leave. Because of the fact that the sick child required a great deal of the parents' time and energy, the siblings often felt pushed aside, and thought that the patient occupied a more important position than they. There was resentment toward the patient and their parents, especially by the younger siblings, with the feeling that the patient was being treated as a "baby." Thus, for the majority of the siblings, the special treatment provided the patient produced fedings of being displaced. Their reactions led them to challenge the parents actively as to whether or not the patient was actually still sick, and also to display hostile behavior in the home. After all, had not the patient received a new kidney? The "special" relationship between the patient and the donor often placed husband and wife at odds over such family matters as discipline of the patient and other siblings, and how much freedom to allow the patient. The alliance formed between the donor and the patient tended to place the parents at polar opposites. The alliance seemed to providc the parent-donor many of the emotional supplies earlier derived from the spouse. In two instances, however, the strains on the family brought them closer, even in the one family that had previously been on the brink of separation. Despite the extremely disrupting effects of kidney transplantation upon the family, the effects did not appear to be permanent, with few exceptions, and the swing back to normal or near-normal came rel
