A Source of Emotional Support and Information for Amputees and Their Families

When someone wakes up in the hospital after having a limb amputated or discovers that their child has been born with a congenital limb deficiency, he or she might experience shock, anger, denial, or even depression. Life might no longer seem worth living. Questions might bombard the person’s mind: "How can anyone, especially someone of the opposite sex, stand to look at me?" "How will my child play baseball or football?" "How can I make a living without arms or legs?"

It is a time of panic and reflection. New amputees and parents of children with limb deficiencies know that family and friends really cannot understand their feelings no matter how much they would like to. And although doctors, social workers, and therapists might have treated numerous amputees before, they really cannot understand what it is like to lose a limb unless they have gone through it themselves.

That’s why peer support is so important.

"Nothing brings more hope to a new amputee about life after amputation than a trained peer contact," says social worker Cheryl Bias. "I have observed the value of a well-matched, trained peer contact, and I have also seen a new amputee’s eyes glaze over when I, a nonamputee, have talked with them. This reaction is markedly different when compared with the patient’s attentiveness to someone who is living with amputation day to day."

Only a fellow amputee can convince the new amputee that feeling discouraged is natural, but that limb differences do not define the person. Though the limb-deficient person might have to learn to do things differently, he or she is still the same person. The veteran amputee can show by his or her presence that there is life and opportunity after recovery. If he or she has a family, it will demonstrate that a person with a limb deficiency can have a social life. If he or she is working, it will demonstrate that people with limb differences can work and make a living – that life goes on. And if the veteran amputee is an athlete, artist, archer, or architect, it might help drive home the message that almost nothing is beyond the reach of people merely because of limb differences.

"Seeing someone who has a similar amputation but is active and doing well in life can bring so much hope to the new amputee," says Liz Zemke, a registered nurse and an ACA regional representative.

Five years ago, when Zemke’s right leg was amputated at the knee, there was no amputee peer visitor program in place for her to reach out to for comfort and direction. "It would have made all the difference in my recovery if I had had the kind of support, understanding, and information that only amputees can provide to each other," she says.

Peer supporters can also demonstrate some of the practical aspects of being an amputee, such as how to perform daily activities like driving and cooking, how to use a prosthesis, how to get involved in sports or recreational activities, how to deal with strains in personal relationships, and how to help family members and friends cope.

Seeing someone who has survived and thrived regardless of a limb deficiency gives the new amputee or family member new hope that life is still full of opportunities. The inspiration from such an example is worth thousands of words from those who have never been tried by the fire themselves.

"I can’t emphasize enough the importance of being able to link with someone who has been there, done that," says Becky Bruce, ACA outreach information specialist.

A left below-knee and right Syme amputee, who also has diabetes, Bruce has endured repeated operations and hospitalizations. Through it all, she has retained a zany sense of humor and a unique perspective on life. "At first, I didn’t go to a support group; I felt alienated. But after I had my Syme procedure, I joined a group, and I felt an instant camaraderie with the people there that I couldn’t get anywhere else."

The importance of training

The Amputee Coalition of America (ACA) and the National Limb Loss Information Center (NLLIC) recognize the benefits of peer contact. That is why the National Peer Network was established - to help people with limb differences and their families make contact with those who have had similar experiences.

Although some amputees might be naturally good as peer supporters, the ACA and the NLLIC, along with many others, strongly support peer training.

"I believe it is very important to train peer visitors," says Marianne Rankin, a member of the ACA board of directors and a bilateral below-knee amputee. "Peer training teaches you that your role is to complement the individual’s medical care but not compete with or replace medical professionals. It teaches you how to present yourself in a professional manner while ensuring that you maintain sensitivity toward the patient’s emotions and acknowledge the reality of the situation. It also teaches communication techniques to promote emotional recovery and empathetic listening."

Untrained peer visitors are more likely than trained ones to unwittingly cause harm to those they are trying to help. Over-identifying with negative emotions, attempting to solve the problems of others, offering one-size-fits-all solutions, giving medical advice, and criticizing healthcare professionals can hinder rather than help individuals in crisis situations. And these are just a few of the errors that untrained peers can make.

Experienced amputees who have successfully made the transition to their new life are the best candidates for fulfilling the job of a peer visitor. Good training – with a brief orientation to best practices for peers, guidelines to follow, and resources available – helps peers develop the objectivity, listening skills, and appropriate techniques that will increase the chance for successful encounters.

The ACA provides such training through the ACA Peer Training Program, which includes presentations, discussions, and role-playing to prepare individuals to communicate effectively and complement, rather than hinder, medical care. Generally, this is done in a six-hour workshop that deals with the stages of grief and loss, communication techniques, coping skills, and available resources.

Twelve peer training seminars are offered each year across the country to maintain a large pool of trained peers. This training and certification helps assure callers of qualified, timely follow-up, assistance, and support. In addition, the ACA works collaboratively with support groups to provide peer training, experienced trainers, training manuals, possible funding sources, and educational materials.

"ACA-certified peer training not only provides a peer visitor with the basic skills to conduct a peer visit, but also provides an environment for individuals to network with others who have the same interest in being a peer visitor," explains Leslie Duncan, NLLIC program manager for education and research. "I believe that communication, support, and the sharing of ideas and experiences between trained peer visitors are key components in the success of the National Peer Network."

Finding a peer contact or support group

Even after people with limb deficiencies or their families make the decision to speak to a peer visitor, they might find it difficult to locate one in their geographic area on their own.

Through the ACA National Peer Network’s ever-growing database of trained and experienced amputee peers, those with limb deficiencies or their families can be put in touch with someone who has offered to help. The ACA will also attempt to match them with someone in the Network of similar age and the same gender, who has gone through a similar limb loss.

The Network is part of an information hotline where 24-hour contact is available via phone, fax, e-mail, and surface mail. Those in need of assistance might receive help by talking to someone on the ACA hotline, by arranging a visit or phone conversation with an individual, through letters, fax, or e-mail, or by attending a support group meeting.

Incoming requests for information or assistance are documented and forwarded to the appropriate ACA information specialists for processing. The ACA currently has 12 volunteer regional representatives who are experienced support group leaders. These individuals are located nationwide and communicate with groups in regions varying in size from three to five surrounding states. Regional representatives have knowledge of new groups forming in their region and special group activities (e.g., sports, social, and educational activities) and can readily identify special-interest support groups on request. Information specialists, the outreach information specialist, and regional representatives offer referrals to amputee support groups that are as close as possible to the inquirer’s city.

Becky Bruce notes that some people who call the ACA are disappointed when they find that there is not a support group within a 50-mile radius of their home. "Start one yourself," she advises. "ACA can help you. Many people don’t understand what’s involved. It’s not just a group of people crying and telling their story; some people can’t open up that quickly. Sometimes you can go to a meeting and not say anything. You can listen and learn."

The ACA and the NLLIC are available to help amputees find peer visitors or support groups in their area, to train peer visitors, to help establish support groups, and to help show those with limb differences and their families that their lives are not over – that they have merely turned a new page where new opportunities await.

Contact the ACA National Peer Network to find a peer support person or support group. Call toll-free 1-888/AMP-KNOW (267-5669) or write: The Amputee Coalition of America, National Limb Loss Information Center, 900 E. Hill Avenue, Suite 205, Knoxville, TN 37915- 2568. E-mail: NPNinfo@amputee-coalition.org

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