The Function of a Parent Group in the Adaptation to the Birth of a Limb-Deficient Child
DARLENE TALBOT, M.S.W. CAROL SOLOMON, M.S.W.
Mothers of young patients at the Child Amputee Prosthetics Project (CAPP) at U.C.L.A. have from time to time expressed the desire to meet and talk with other parents of children with similar limb deficiencies. In response to this need, time-limited parent groups have been held periodically at CAPP over the past few years. This article will discuss one such group which met during the fall of 1977. The purpose of the group was to provide parents with an opportunity for growth through the sharing of their experiences, feelings, and concerns as parents of limb-deficient children.
The group was composed of seven mothers and the two CAPP social workers who served as leader and co-leader. Although the mothers would have liked their husbands to participate in the group, there was not sullicient interest among the husbands to include them. The limb-deficient children ranged in age from 15 months to 2 and 1/2 years. Six of the children have congenital upper-limb deficiencies, and one child has a surgically converted lower-limb deficiency. All of the children but one are boys, and all are developmentally normal.
On the basis of previous experience, the leader believed that the salient issues likely to emerge in the sessions could he grouped into three major categories:
- The emotional trauma of the birth experience and the associated painful feelings
- The social implications of the limb deficiency in terms of dealing with the reactions of others
- Concerns about the child's physical, social, and psychological development and the parental role in fostering a healthy self-image.
To assist the parents in focusing their discussion, a structured format was utilized. At the opening of each session, the leader posed, for the groups consideration, alternative topics relating to the three categories of issues. The leaders then took an active role in facilitating the group interaction to insure that all members would have an opportunity to express themselves fully. The group met once a week for a period of nine weeks, and each session lasted 1 and 1/2 hours.
The discussed issues included all three of the aforementioned categories. The group members shared day-to-day experiences and problems as well as past events and reactions. They exchanged viewpoints, philosophies, and ways of coping.
The leaders were struck by the intensity and detail with which the mothers spoke of their experiences and feelings at the time of the child's birth. The need to review the past seemed to be shared by all of the mothers. As Maxine Wallace found in her work with similar groups at the District of Columbia General Hospital 2 , the mothers gave strong emphasis to the ways in which physicians and nurses handled the tasks of informing theni of the child's limb deficiency and referring them for care. Some of the mothers were still angry about the lack of support they received from their obstetricians, while others reported more positive experiences and maintained feelings of warmth and gratitude. The mothers also spoke of the emotional impact of the support, or lack of it, from spouses, other family members, and friends. They shared the anger they had experienced either toward God or over the unfairness of life, and some related the envy felt toward friends who had delivered normal babies. In addition, there was discussion of recent events which elicited renewed feelings of sadness.
Another area of great interest was the beginning of school for the limb-deficient child. This transition from the protected environment of the home to the social milieu of the school is perceived by most parents as a natural point of onslaught of negative peer reactions. Because of the mothers' concerns about dealing with this transition, it was decided to invite three mothers of school-age children to one of the meetings. The guests shared their early and current experiences. Included were their own anxieties prior to the beginning of school, the individual approaches used to prepare the child, the communication with school personnel, and the children's actual adjustments. The guests offered reassurance to the mothers that their children's problems were not likely to be as numerous or overwhelming as anticipated. This fact they had learned from their own experiences.
During the nine weeks, meeting attendance was generally good, and no one dropped out of the group. Although each session was formally concluded, some of the members seemed reluctant to leave and usually lingered for awhile. Some of these mothers continued to have social contacts after the termination of the group sessions. The mothers were eager to share their experiences and feelings, and they communicated openly, both giving and receiving emotional support from one another. They expressed appreciation for the structure provided, stating that it helped them to focus on difficult issues.
All of the mothers felt that there is a great need to educate the medical community regarding the emotional needs of parents and the need for adequate referrals for the ongoing care of their children. Some of the mothers were zealous in their desire to play a role in this education. In addition, they wished to) reach out to new parents of other limb-deficient children to offer support and guidance. Early in the course of the group sessions, some of the mothers expressed the desire for more open communication with their husbands regarding their child's limb deficiency. They felt that their husbands found it difficult or were unwilling to share their concerns and anxieties with them. As a result, these mothers tended to inhibit themselves emotionally. During the nine weeks some increase in this communication did, in fact, occur. One mother reported, "We are able to be slightly more open in discussing the limb deficiency. I could tell that my husband enjoyed hearing what we discussed each Friday, and we would discuss the topics presented." Similar statements were made by other mothers. In addition, the mothers wanted their husbands to meet one another, and to share something of the group experience. Therefore, they planned a potluck dinner which was held at one of their homes after the conclusion of the sessions.
After the sessions ended, a questionnaire was sent to the mothers to obtain their assessment of the group experience. All of the mothers felt that the group had been helpful to them. One mother stated, "I have gained personal strength from the group. I always felt free to express myself, knowing that I would not be judged and would not 'shock' anyone with my true, deep feelings." Another wrote, "I liked being able to talk about everything and get it off of my chest, and I knew the people I was talking to really knew my feelings." In addition, several mothers expressed the desire to get together again periodically in the future, ". . . to see how we're doing."
A review of the data indicates that several factors warrant further discussion. All of the mothers who participated in the group were considered by the leaders to be actively involved in the process of adaptation or reorganization which follows the birth of a malformed child. All had warm relationships with their children, and all seemed to function well in their various social roles. At the same time, they were eager for the group experience and felt they had benefited from it. In addition, the lapse of time after the birth of the child (as long as 2 and 1/2 years) seemed to have no diminishing effect upon the satisfaction they obtained from their reiteration of the birth experiences and the related feelings. These factors led the authors to ask, "What specific function does such a group serve in the process of adaptation?"
The authors believe that the answer to this question lies in the role of the peer group in our society and in the nature of the mourning process. The influence of peer acceptance upon the development of the self can hardly be overestimated. In addition, the peer group provides a frame of reference for the testing of norms and values. In the words of Irvin D. Yalom, "Not only do we rely on others for approval and acceptance but also for continual validation of our important value systems." 3
It has been demonstrated that individuals seek to establish frames of reference for new and unfamiliar situations. A mother of a normal child has access to many frames of references: her friends, her own mother, other female relatives, and the widely available literature on motherhood and infant care. The mother of a handicapped child, on the other hand, has no easily accessible frame of reference against which to evaluate those experiences, expectations, and feelings which are not only unfamiliar but also deeply disturbing. The parent group provides this needed frame of reference. Within her peer group, the mother of a handicapped child can obtain validation of the feelings and reactions which may he frightening or unacceptable to her peers who are rearing normal children. In addition, she can evaluate her ways of coping, increase her coping skills, and enhance her adaptation through the broadening of her individual perspectives.
Mourning the birth of the defective child is central to successful adaptation. This mourning process involves repeated experiencing of the feelings of grief over the loss of the expected, perfect child. It is through this repetition over time, with its concomitant discharge of feelings, that the impact of the loss is lessened and the healing of the wound takes place1. However, Dr. Albert J. Solnit and Mary H. Stark1 have noted that in mourning the birth of a handicapped child there is, "...no time for working through the loss of the desired child before there is the demand to invest the new handicapped child as a love object." Thus, the mourning process may be hindered by the requirements of reality.
In addition to time and opportunity, the work of mourning requires the recognition and acceptance by the self of unacceptable thoughts and feelings. This self-acceptance can be, and often is, facilitated by the acceptance of professionals. It appears, however, to be especially promoted by the acceptance of peers who have "been there" and who, after all, are not paid to understand. Consequently, the parent group is most conducive to fostering the important work of mourning by providing time, opportunity, and an atmosphere rich in empathy and support.
In summary, we contend that the process of adaptation is a continuous one which can be facilitated at any time by a parent group in the following ways:
- By providing a frame of reference or testing ground for dealing with the present
- By promoting the continuing work on the unfinished business of the past.
While one may question whether mourning is ever truly finished, the following statement indicates that through the group experience at least one mother had reached a major turning point: "I feel that I don't have to dwell on the past anymore--I can look forward to the future!"
1. Solnit, Albert J., and Mary H. Stark, Mourning and the birth of a defective child. Psychoanal Study Child, 16:526, 1961.
2. Wallace, Maxine T., Group therapy for parents of congenital amputees. Inter-Clin Inform Bull,5:2:10-15, November 1965.
3. Yalom, Irvin D., The Theory and Practice of Group Psychotherapy. Basic Books, New York, 1970, 40.