Group Therapy For Parents Of Congenital Amputees

Maxine T. Wallace, M.S.W., A.C.S.W.


One of the most important aspects in treating child amputees is to provide help to parents in dealing with their emotional reactions and needs. As we have learned, the child's attitude toward himself and the success or failure of the prosthetic treatment program is largely determined by the attitude of the parents toward the deficiency. Parental attitudes are shaped by the variety of experiences they are exposed to when the child is born, and their emotional strengths and adaptations to stress.

Help Needed

Professional intervention by the physician, clinical social worker and/or psychiatrist is needed to help parents handle their feelings concerning the birth as well as to cope with the problems that will arise in caring for a limb-deficient child. Many parents have not received these necessary services, and they come to the Juvenile Amputee Clinic in various stages of readiness or lack of readiness in their ability to handle their problem.

Case Work Services

In treating the child and his deficiency our clinic attempts to provide opportunities for parents to verbalize their feelings about their child and, thereby, to receive support and help in handling these feelings and in developing constructive attitudes. As part of this approach our Juvenile Amputee Clinic has provided individual case work services for the past three years.

Group Sessions Initiated

In the Spring of 1965 closed, short-term group sessions were initiated under the leadership of the clinical social worker. Parents who might derive particular benefits from an opportunity to jointly consider, clarify and understand their

problems were selected as participants. In the group they could help each other and perhaps develop a problem-solving process to improve adaptive patterns and family functioning in a therapeutic milieu. The group leader was assisted by another clinical social worker who acted as a silent recorder and a part-time staff psychiatrist who was available for consultation. The sessions were held for eight consecutive weeks, each session lasting an hour and a half. Evening meetings were held for the convenience of the fathers.

Group Composition and Interaction

The group was composed of five sets of parents whose children ranged in age from two months to four years, and had limb deficiencies which ranged from mild to severe. The children had either been fitted with prostheses and received training or were in the process of being fitted. The parents were having difficulty in keeping the prosthesis on the child for any length of time.

The group members were in the middle socioeconomic category and were accustomed to private medical care. This was their first experience in receiving services of a large metropolitan medical center. Prior medical care had not included counselling service with respect to parental problems and concerns about the anomalies. Information regarding such treatment was not provided, although some parents had requested this data from private obstetricians, pediatricians and local county health departments.

Role Of Each Parent

Because of her numerous visits in bringing the child for medical care, prosthesis fitting and training sessions, the mother is usually most closely associated with the clinic on a direct and continuous basis. The father, as the major wage earner, has limited time for participation in the treatment program. However, we have observed that the impact of the birth of a limb-deficient child is just as devastating for the father, and his continuing need for help with his feelings is as great.

The fathers attendance record at evening group sessions and the quality of their participation substantiated this supposition. They had comparatively fewer absences and were less hesitant in expressing their feelings than their wives. On the whole they had clear insight into their attitudes and feelings and how these affect the child's adjustment and mold his self-image.

Group Dynamics

The group leader opened the sessions with a discussion of goals, but as could be expected in their first structured group experience the members were hesitant as to where and how to begin. The fathers took the initiative in introducing each couple. The introductions were interspersed with a discussion of problems and feelings concerning the birth and rearing of a limb-deficient child. Strained congeniality prevailed throughout the first session. Each parent seemed to have the implied question: "Why am I here?" After the first few meetings, the atmosphere improved. Apparently the similarity of experiences and mutual understanding of distress served to unite the group. The discussions helped the distressed parents, persistently steering them toward understanding their problems and constructive thinking.

In the group parents shared some concerns that they had been reluctant to reveal in the one-to-one interview with the social worker. In two families the mother and father were able to speak to each other about their child and their marriage for the first time. In one, the father spent long hours at work. The wife was busy at home with the responsibilities of a large family; she seldom waited up for him because of her hectic day. The husband preferred to think that his wife had made a good adjustment and did not need to talk about the child. They only discussed those items that were urgent and pressing. The wife was surprised and pleased to know that her husband could talk to her about his concerns for their son and the family.

Positive Factors

The positive factors that made group treatment possible were parental strengths to verbalize feelings and reactions, define problems and concerns, analyze them objectively, and find more appropriate ways of handling these problems.

Most parents could make constructive use of the help provided by the group process. Unfortunately, not all of them were able to use the group sessions advantageously. One couple had a twelve-month old daughter, Jane, who was born with one hand. She was fitted with a prosthesis at eight months of age. The parents tended to repress and deny feelings of guilt, rejection and anger. They were forming dangerous attitudes about the child and her deficiency, in that any misbehavior was blamed on her defect. The couple did not want the child to wear the prosthesis, nor did they want their entrenched neurotic patterns of coping with the problem disturbed. The mother told the group that the child's personality changes when she wears the prosthesis. Without it, she is a sweet, sparkling baby who plays freely, babbles incessantly and loves company. However, when she wears the prosthesis, she frowns and scowls, rarely smiles, beats the furniture as if she were trying to break it off, or waves it threateningly in the air. The mother rationalized that Jane rejects the prosthesis. However, in clinic and training sessions, Jane uses the prosthesis to crawl, hold a ball and other toys, and seems to have a normal temperament for a child twelve months of age. These parents were included in the group with the hope that it would provide them with a therapeutic milieu in which they could ascertain that they were not alone with this problem, and allow them an opportunity to air their feelings. Some slight progress was made during these sessions.

Group Discussion and Concerns

At the outset, the group members were concerned about the cause of the anomalies and why this calamity should have happened to them. They suffered guilt feelings about having caused the anomalies, and were sensitive to the reactions of the public, friends and relatives concerning their child's deficiency and the prosthesis. However, like parents of normal children, they were also concerned as to the foundation they could give the child during the formative years which would aid him in developing to his optimum potential. The discussion centered around three broad areas: feelings about the birth of a defective child, parent-child relationships, and treatment goals.

Reaction to Birth and Interpretation of Deformity

An area given considerable emphasis by the parents and one which incurred strong hostility concerned the methods used in informing them of the birth of a malformed child and the way the situation was handled by the obstetrician. Prospective parents desire a normal, healthy and well-formed baby without complications. If this image is shattered, parents turn to the obstetrician for salvation and guidance.

At the group sessions we learned that the private obstetrician had not always provided the support and guidance needed by the parents. Usually a nurse or pediatric consultant informed the father about the child's deformity and he had to inform the mother. Then the mother or both parents could not see the child and/ or the deficiency for hours or days after delivery. Parents were frantic when the obstetrician was not immediately available for consultation and, when he did arrive, had little guidance to offer.

In analyzing their attitudes toward the obstetrician and other professional staff, the parents could accept the medical profession's lack of knowledge concerning the reason for the anomalies. With some anger, they could also accept the lack of information as to what could be done to obtain help for the child and themselves. However, they were extremely hostile about the apparent inertia of the medical staff in finding out what could be done.

The group wanted obstetrical and other hospital staff informed so that they could provide information to the parents concerning the availability of help. One mother voiced the sentiment of the entire group in saying "You can forgive them for not knowing what to do and where we should go, but they not only didn't know but didn't try to find out. They merely stated that they did not know."

In relating a similar experience, another couple was made to feel that they had committed the cardinal sin against their obstetrician by having him deliver their child. The obstetrician was so grief-stricken that the parents felt that they had to support him, thus intensifying their own guilt in producing the child and bringing an unwanted tragedy on the obstetrician. This was an additional burden at a time when they really needed direction and support for themselves.

The impact of the birth was still quite vivid and parents reacted as if it happened recently. Many feelings of guilt, rejection, anger and depression were discernible during the group sessions. Some parents indicated that they had entertained death wishes for their child as a means of solving the problem.

Concern with the Attitudes Of Relatives and Others

As stated parents were particularly aware of the attitude of others toward their child's deformity. Considerable emphasis was given to discussing how relatives, friends and business associates might be prepared. For example, they wanted to know if you explain to guests, who may or may not have children, about the child with limb deficiencies, or do you let them see the child first hand and "let the chips fall where they may?" The parents thought that some curiosity and comments were normal, but they were annoyed when people persistently stared or questioned beyond reasonable limits. Adults were more offensive than children in this area and they did not properly control their children's questions. One father felt that parents who are supersensitive to the curiosity and reaction of others have not made an adequate adjustment themselves. He went on to explain that when he takes his child on public outings his body becomes tense at the anticipation of stares and comments. He theorized that these body tensions conveyed to the child his feelings of non-acceptance and rejection.

The amount of hostility, annoyance, and discomfort exhibited by the parents reflects their level of adjustment to the birth of the limb-deficient child and their acceptance of the deficiency and the prosthesis. Those parents who are supersensitive to the curiosity of others and dread public outings have not made a good adjustment to the birth of the child, nor have they accepted the deficiency and the prosthesis. Those parents who are aware of their feelings and question "what to do", are in the process of making a good adjustment and accepting the deficiency and the prosthesis. Those parents who dealt with the situation realistically have made the best adjustment and, therefore, accept the deficiency and the prosthesis in a rational manner.

Effect on Siblings

The parent-child relationship was of utmost concern to the parents. Because they focused all their attention on this relationship, the parents tended to deny the impact of such a birth on the siblings. Apparently they preferred to believe that the siblings were flexible, adjusted easily to stress, and were unaffected by the birth of the child.

Attitude Toward Child's Questions and Reactions

The parents were concerned on how the child would react toward them for having produced him with anomalies. They found it most difficult to cope with the child's question of "Why am I different?" Internalized guilt feelings were projected through their search for ways of discussing his deficiency with him and when to do so. The general attitude tended to be "what will I tell my child, when I stand before him guilty? - I didn't give him an arm or leg. How will he forgive me when I can't forgive myself?" They tried to define the age when the child begins to notice and inquire about his physical differences and to decide what to tell him. Those who had had this experience were wondering if their approach was correct. Those parents who were anticipating it wanted to be told what to say and were anxious to have the experience behind them. To some degree, the parents wondered how to discuss the child's physical differences with him without causing a feeling of separation between them and hostility in the child.

Attitudes towards an explanation reflected parental feelings about the child's deficiency and the prosthesis. Those parents who were having difficulty in coping with this situation tended to feel the child could not accept the simple explanation of "you were born this way." In the group they tried various complex answers, such as "God didn't give you a hand or leg, but in Heaven all things will be made equal - the lame shall walk, the blind shall see and you will have a hand, arm or leg, whichever is the case." In analyzing this problem the parents found the God theory least acceptable. They saw the truth, unassuring as it sounded, as the most logical answer.

Parents wondered if they could do a good job of explaining to the child when they were so uncertain themselves. They thought that if the child asked too often, this indicated that they were not doing a good job.

Concern with Child's Growth and Development

Methods of rearing a limb-deficient child were critically analyzed by the parents. It appeared that parents were more acutely aware of the needs of their children than they had realized and were either meeting these needs or could be guided to do so. Those who had made the best adjustment could see the child's need for independence and self-sufficiency and were providing appropriate experience regardless of the extent of the deficiency. Parents had a great deal of awareness of and concern about overdependence and overprotectiveness. The mothers tended to be more concerned than the fathers, although each indicated some problems in these areas. All felt that helping the child achieve developmental levels in spite of his limitation was crucial. There was some discussion as to whether a child should be placed outside the home for habilitation; all the parents agreed that the child should remain in the home where he could receive the necessary Stimulation for growth and development. Early education and college training were seen as indispensable for these children.

Attitude Toward Treatment

Parents felt the need for a treatment program that would aid the child to function as effectively as possible. They believe that this includes help with feelings and reactions as well as medical treatment and a prosthesis that is functional and cosmetically acceptable. The parents also believe that their attitude exerted considerable weight on the child's acceptance of the prosthesis and that the child who rejects the device probably believes his parents also reject it. The group felt that if the prosthetic program is to be successful, the clinic should not fit the child before parental attitudes have been assessed.

Most parents need a treatment program in which they are allowed to express negative feelings about the birth of a defective child and the prosthetic device without fear of rejection or repudiation by the clinic staff. Some parents complained that clinic staff gives technical explanations and puts too much emphasis on prosthetic fitting, training, and wearing and not enough on the feelings of the parents and the child. However, when feelings become too painful, parents themselves tend to involve the clinic staff in the more technical aspects as an escape from painful exposure of their feelings. The clinic staff should be aware of these feelings and defense mechanisms and handle them constructively as a part of the total treatment program.

Conclusion

As is becoming apparent to all disciplines treating the limb-deficient child, the need for help to both parents after birth and during the treatment and habilitation of the child in the formative years of development is most crucial. These parents come to the clinic striving to cope with the emotional trauma involved in having a deformed child. They are trying to help the child form a healthy self-image and to participate successfully in a treatment program. The habilitation of this child is an arduous task for the parents. Therefore, casework services, support by the physician, and other staff should be provided as part of the treatment program. In our clinic we have learned that group sessions with the social worker are valuable in meeting this need. Parents derive benefits through mutual support and analysis of problems in a therapeutic milieu which is an essential part of the process.

Maxine T. Wallace, M.S.W., A.C.S.W. is a Supervisory Clinical Social Worker with the Juvenile Amputee Clinic Crippled Children's Services District of Columbia General Hospital