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Psychosocial Considerations in Pediatrics: Use of Amputee Dolls

Jennifer Svoboda, BS

Introduction

Amputee management is never a simple situation. It involves much time and effort from not only the patient, but also from family, friends and the healthcare team. When the amputee is a child, the case becomes more complex. Amputation is a mutilation of an individual's body image, and it produces a sense of finality (1, 2). It is difficult for many families to accept and understand why their young, innocent child must live life as an amputee. The parents love their child but may be unable to cope with his or her limitations. Therefore, it is important for the prosthetist to understand the impact an amputation, whether acquired or congenital, has on a child and his or her parents, family and friends.

Etiology of Limb

Deficiencies in Children The cause of congenital limb deficiencies is unknown in more than 90 percent of the cases (3). While research continues to try to determine the cause of congenital limb deficiencies, current uncertainties often result in parental feelings of guilt and confusion (4). Acquired limb deficiencies, usually caused by traumatic accidents or sudden illness, are as devastating emotionally as they are physically for the child and his or her family.

Emotional Reactions

A sequence of emotions occurs following a traumatic loss of a limb, amputation due to cancer or other disease, or birth of a child with a congenital absence (5, 6).

Inevitably, the first feeling experienced is shock. This emotion is felt intensely, but generally not for long. Some authors describe this first emotion as fear, which incorporates confusion, a sense of unreality or emotional numbness (7).

After the initial shock of an amputation, a period of denial sets in. The amputee and/or the family become defensive when discussing the situation, or they may acknowledge the amputation but deny the subsequent prosthetic or surgical intervention.

In the next stage, bargaining, the family acknowledges the situation and may become extremely compliant in hopes that in return for their good behavior, the lost limb will be replaced.

Of course, when that doesn't come to be, depression develops. Depression, which is essentially a combination of sadness and anger turned inward, may have been building since shortly after the child's birth or trauma. The final emotions are adaptation, reorganization and acceptance. The amputee and family accept the situation, understand it and continue with their lives despite differences or disabilities. Though it can take a long time to reach this stage, it is very rewarding. The amputee's level of confidence should continue to increase as time progresses.

Team Approach

There are very few situations in rehabilitation where the team approach is not applicable. For child amputees, it is particularly essential. The team is made up of the physician, prosthetist, physical therapist, occupational therapist, nurse and possibly the psychologist and school teacher, but the most important members are the child and his or her family (7, 8).

Healthcare professionals should bear in mind when discussing the situation that the amputee is a child, with all the needs of any other child. Too often, the physician views the child as a patient with surgical needs, the physical therapist sees the child as a contracture, the prosthetist sees a residual limb and the psychologist sees a social problem.

In addition to communication among healthcare professionals, there must be communication with the amputee and the family. The healthcare professionals, no matter how observant, accurate or thorough, can never understand the situation as well as the parents, who are with the child nearly 24 hours a day (see Figure 1 , Figure 2 , and Figure 3 ) (7, 9).

Developing a Positive Body Image

Child amputees must develop positive self-esteem and body image to achieve self-acceptance. Body image includes physical, psychological and social aspects and is formed by constantly changing emotions and body perceptions (10). Disturbances of one's body image occur when changes are not accepted or when previous images do not coincide with reality. If an amputee cannot acknowledge a missing limb, then he or she may never completely accept his or her body or situation.

Parents of child amputees may also experience disturbance in the body image of their child (11). Although they may accept the child as a whole, they may have difficulty accepting the deficient limb, which could inhibit the child's acceptance. Parents can help their child develop a positive body image by encouraging him or her to participate in a range of activities. The child will learn his or her strengths and limitations and gain self-esteem.

Such demographic variables as age, sex, socioeconomic status and level of amputation usually are not significantly correlated with level of self-esteem nor do they predict adaptation (12). Other dynamic variables such as social support, family function and self-perceptions are significantly correlated with self-esteem and adaptation. Generally, support from classmates, parents, teachers and friends as well as strong family organization, moral-religious emphasis and family cohesion will enhance self-esteem and psychological and social adaptation. A child amputee's perception of his or her appearance, behavior, and social and athletic ability will also significantly affect his or her self-esteem. In addition, extreme emotions and family conflicts may hinder the child's acceptance (12).

Amputee Dolls

The author created amputee dolls to help amputees and their families accept their situations and promote positive attitudes toward prosthetic fitting. The dolls have also helped healthcare professionals understand the impact of pediatric amputations, enabling prosthetists to recognize the importance of psychological factors that may be affecting their patients. The dolls also encourage team members to communicate openly, creating a less stressful prosthetic fitting process.

As miniature models of humans, dolls have played a prominent role in many areas of child psychology and development. Dolls help children learn and understand difficult concepts. They reduce the complexity of the medical world to the level of play, allowing children to develop and ask questions while putting them at ease. Play is important to a child's development and can be a form of expression and therapy (13).

Dolls often improve attempts at communicating with children. They have pacified children's fear of injections and other lab procedures (14). They have helped children testify in child abuse cases and cases involving assault or rape. There are also a few instances where dolls were used to prepare a child for amputation (15-17). Of even greater importance, dolls can help children and their families better understand and prepare for prosthetic use.

Commercially available amputee dolls cannot serve the same purposes as the author's dolls since most depict only pirate characters with wooden peg legs. Mattel's doll Hal, a three-track skier, may help inspire children to realize their potential in sports activities sans prosthesis, but it does not serve as a role model to encourage daily use of the prosthesis at school and at home (18). The author's dolls were designed so children could relate both to similar limb deficiencies and to the appropriate prosthesis (see Figure 4 ).

The author has created four amputee dolls. Three are used at Texas Scottish Rite Hospital (TSRH) in Dallas, Texas, and one is used at Scottish Rite Children's Medical Center in Atlanta, Ga. One of the dolls is an above-knee amputee who wears a nonarticulated prosthesis with Silesian belt and SACH foot, similar to many children's first prosthesis (see Figure 5 ). Another doll is a below-knee amputee (see Figure 6 ). Her prosthesis has a SACH foot and cuff suspension. The remaining two dolls are below-elbow amputees (see Figure 7 and Figure 8 ). Both wear passive hand prostheses similar to those fitted to young children. One of the BE amputee dolls also uses a figure 9 harness with his prosthesis, which helps explain suspension systems to parents. Each of the dolls also has a test socket that fits onto its residual limb as well as a laminated definitive prosthesis to aid prosthetists in explaining the prosthetic fitting procedure.

Discussion

The amputee dolls have been well received. The dolls have proved to be a beneficial instructional aid when healthcare professionals are explaining the prosthetic treatment plan. The dolls also have promoted communication among child, parents and healthcare workers.

Parents of amputee children report that the dolls have been useful in explaining the amputation to a child's siblings and peers. Some parents had created their own versions of amputee dolls. One mother said a friend made her family an amputee Cabbage Patch doll to explain the son's BE amputation to his younger sister. Another mother said she had a porcelain doll leg made for one of her daughter's dolls. Her daughter played with the toy, often donning or doffing the "prosthesis" while the mother did the same to her daughter's prosthesis.

Dolls can help families express concerns. After one child's parents saw the doll, they were able to ask questions about the weight, size, color and trimlines of the prosthesis. A psychologist may present a child with the doll, let him play with it for a while and then ask questions such as "How do you think your friend (the doll) feels about his prosthesis?", "What things make your friend sad?" and "How do other people treat your friend?"

Occupational and physical therapists have found the dolls useful as an instructional aid and for playtime. The system at TSRH allows children to be admitted to the hospital for one to three weeks for daily intense physical therapy during the fitting process. Playtime is included to maintain the child's interest and attention. Faster progress is noted when therapy sessions are enjoyed by the child, parent and therapist.

In addition, dolls have increased the effectiveness of presentations to area high school and college students who are interested in health sciences. TSRH's Child Life Department uses the dolls to show groups who tour the hospital a concrete example of how a prosthesis is used.

Increasing the awareness of physically normal children about children with disabilities is essential. Nearly all amputee children attend regular schools and can be fully functional and independent, but their peers need to understand their physical challenge. Children can often be cruel when they do not understand why someone is different from themselves, and they express their fear or ignorance by lashing out. Educating youth about disabilities may hasten the end of society's long-held attitude of discrimination toward those with physical and mental disabilities. Conclusion Amputee dolls have been useful not only as an educational aid but also as a counseling tool, a prosthetic model and a toy. The child amputee, members of the healthcare team and the child's parents and siblings have all benefited from the amputee dolls with prostheses.

Acknowledgments

The author thanks the staff at Texas Scottish Rite Hospital for all of the advice, cooperation and support throughout this project. A special thank you to Don Cummings, CP, director of prosthetics; Karen Courtney, assistant director, child life department; Adenia Spencer, OTR; and Debby Short, LPT.

JENNIFER SVOBODA, BS, is a 1991 graduate of the prosthetics and orthotics program at the University of Texas Southwestern Medical Center in Dallas. She is currently employed at Fillauer Orthopedic in Chattanooga, Tenn.

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18. For more information on Hal's Pals for Challenged Kids, write to Hal's Pals, P.O. Box 3490, Winter Park, CO 80482.