Networking Families on a Prosthetic Clinic for Children
LYNN CHEPOLIS, MS, AND NORMA THORP, MA*Gillette Children's HospitalSaint Paul, Minnesota
Although the Prosthetic Clinic at Gillette Children's Hospital serves children who have surgical amputations secondary to diseases such as cancer, most children seen have problems caused by congenital malformation or traumatic injury. They reside throughout the state and often are the only prosthetic users in their community and school.
The staff includes physicians, nurses, a prosthetist, physical and occupational therapists, a psychologist and a social worker who seek to provide comprehensive services to children and families.
Family networking has proven to be a valuable resource for families receiving clinic services. When a child needs a prosthesis, complex medical and psychological needs may create a great deal of stress within the family. Families in crisis can be helped through the mobilization of varied supportive networks. One such network is other families who use the clinic services. By mobilizing specialized family and peer support, significant personal resources become available in addition to the medical resources customarily provided.
Common Family Stressors
All parents have experienced a traumatic crisis with the birth, illness or injury of their child, yet often have had very little opportunity to discuss their reactions with persons who have had similar experiences. Feelings of grief which arise as a result of the trauma are often felt with an intensity and duration unfamiliar to most people. Even when time has distanced people from the initial trauma, certain events or memories may revive grief reactions. Because of infrequent occurrence of a given handicap, few, if any, lay persons or professionals in the local community have the knowledge or experience required to provide sound advice about what to expect and support for the ongoing adjustment process.
Patients may have difficulty accepting or using the prosthesis in everyday living. Effective daily use, however, does not necessarily indicate sound psychological adjustment. Even those patients who use prostheses effectively may suffer difficulty with self-acceptance and feelings of loneliness manifested by school underachievement, behavior problems, social isolation or any combination of disorders.
Facilitation of Peer Support
Early attempts to develop networks for families in the clinic were very helpful. Several families new to the clinic were introduced to other families: a) to give new families an opportunity to see a child using a prosthesis similar to the one prescribed for their child, b) to give parents an opportunity to ask questions of the other families regarding their feelings and problems they have encountered, and c) to give parents and patients an opportunity to gain information about the practical operation and care of the prosthesis. Meetings not only provided an opportunity for exchange of information, they also facilitated parents' identification and acceptance of feelings, reducing the sense of isolation.
Description of Networking Process
As a result of the initial experiences with families, it was decided to establish regular meetings where all families in the clinic could participate voluntarily. An informal coffee hour before clinic each week and a monthly evening meeting were started. The primary goal of the meetings was to provide families with the opportunity to obtain support from a credible, caring group and to generate options for solving complex family problems. The primary emphasis of the group was participation of the members. Group interactions were initiated by brief staff presentations on a relevant topic, patient panel discussions or brief videotapes shown at the beginning of the session.
Frequently in family support meetings parents expressed disagreement regarding the issue of overprotection. One parent becomes increasingly overprotective while the other is increasingly demanding as the conflict persists. Parents also described feelings of guilt, vulnerability, fearfulness and reduced trust in the predictability of their world. Sorting issues related to the child's dependence and independence become confusing within this context. Teenage prosthetic patients attending the coffee and family group sessions have been a valuable resource, enthusiastically encouraging parents to foster their child's sense of independence. They related how important it has been to have their parents believe in them, encourage them and trust in their ability to find ways to accomplish what they wanted to do. Frank and open discussion provided new ideas and permission for parents to change attitudes toward their responsibilities and their child's capabilities.
During another meeting parents of a child who recently lost a limb in an accident described how easy it was to blame themselves. Underlying the self-blame appeared to be feelings of guilt and failure to protect the child. The parents of a congenitally malformed child identified with these feelings, describing how they retraced the pregnancy time and again to see if they could identify a reason why this had happened to their child.
Open discussion of emotionally sensitive issues seemed to relieve a great deal of tension in family members. They were helped to identify their feelings and see that blaming was a common way of coping with a tragic situation over which they had minimal or no control. Blaming was an attempt to answer for themselves the question, "Why did this happen to my child?" With increased awareness of their feelings and acceptance of human vulnerability, parents enhanced their self-esteem. Hopefully, with support, group members will be able to redirect blaming tendencies and anger into a more positive direction, focusing their attention and energies on ways to make their lives and family relationships more meaningful.
During one parent support group, a father discussed anger about his daughter's resistance to using her upper-limb prosthesis. He had been told she needed to practice every day. The practice sessions turned into power struggles and eventually complete rejection of the prosthesis by the child. The father was concerned that her rejection of the prosthesis was going to limit her in some way in the future but expressed hatred of the prosthesis for the trouble it was causing in their relationship. The ambivalence he was feeling toward the prosthesis created an unresolved conflict for the family, maintaining high tension levels in the family unit and intensifying everyone's rejection of the prosthesis. Although the medical staff had been aware of the child's rejection of the prosthesis, no one had a very clear understanding of why it was happening. By providing the parent with the opportunity to communicate freely what was happening to the family, the clinic team could begin to meet some of the family's needs. A special meeting was arranged with the father, physician and social worker, in which the parent could raise his concerns. He was reassured that by allowing his daughter not to wear the prosthesis he was not damaging her potential for using the prosthesis in the future. The family was encouraged to relax its demands on the child's use of the prosthesis and to avoid any power struggles with her regarding its use. Reducing the tension and conflict in the family regarding prosthesis use may help the child to develop a more positive attitude. Also, other family problems that need to be dealt with may be identified with the focus of tension no longer on the prosthesis.
Through the experience we have had bringing individuals and families together, it is evident that family networking is a valuable source of support and information. Family networking reduces the sense of isolation and fear of the unknown, provides the opportunities for individuals to work through complex, intense feelings that accompany grief and offers hope as they see it manifested in the lives of others with similar experiences. By providing a setting where families with similar stresses can share with each other, we believe we can encourage positive attitudes and healthy adjustment.
The authors gratefully acknowledge the encouragement of Richard Johnson, MD, and other clinic staff in developing this approach to patient services.
*Family Services, Gillette Children's Hospital, 200 East University Avenue, Saint Paul, MN 55101