When an individual undergoes an amputation, whether through trauma or a planned surgery, they experience a wide range of emotions from stress and anxiety to depression and anger. They may feel alone and unsure of what the future holds for them after their amputation. Through utilization of a peer visitor, not only will new amputees receive valuable information that will help them in their new way of living, but they will get to see a real life example of what they will be able to accomplish with a few years of hard work.
“When you look at emotions that an amputee will go through post-amputation there is depression and the stages of grieving just as if they lost some individual who was very important to them in their life,” Jared Howell, MS, CPO, of the board of directors for the American Academy of Orthotists and Prosthetists, told O&P Business News. “Most individuals with amputation will ultimately come to acceptance, but bringing in another individual who has gone through the same experience provides hope. Providing hope is a critical element to care because the patient is entering into a world with a lot of unknowns. Many are not sure what is going to happen with their life and many may be wondering if they will ever get up and walk again. Having an individual with an amputation who has gone through it before provides hope for the future, and a realistic view and perspective for what is required to be successful with a prosthesis.”
Whether one-on-one or through a support group, peer support is beneficial to new amputees because it helps build self-confidence and provides them with information on the disability, as well as coping mechanisms from someone who has firsthand experience.
“Studies show that [peer support] certainly does help [individuals] know [they are] not alone,” Carrie Davis, national coordinator of the Amputee Empowerment Partners program at Hanger Clinic, said. “Amputees who received peer support say that it improves their outlook and gives them a sense that they know they can overcome this, they are not alone and they have somebody that they can ask questions.”
Amputees who train to become peer supporters also benefit from the experience as a way to move forward by giving back.
“For people who volunteer it is a passionate thing. We are passionate about the cause and we tell most people we get more out of the volunteering, like self-satisfaction or feeling good about helping somebody, than the people we help because they have so many other things on their plate in the beginning,” Charlie Steele, peer visitor and support group leader for the Amputee Coalition, said. “I strongly believe just about every individual with limb loss should have peer support as soon as possible after surgery.”
Becoming a peer visitor
Many amputees who become peer visitors do so because they had a peer visitor when they were in the hospital and found it to be a helpful and encouraging experience. With several national and regional peer visiting programs and support groups, there are many ways to apply to become a peer visitor or to start a support group. However, there are certain criteria amputees must meet before they can attend peer visitor training.
Peer training program applicants must be:
• At least 12 months post-amputation;
• Able to communicate well with others and handle multiple program tasks;
• Able to network with health care facilities and professionals who serve amputees;
• Able to make the minimum time commitment to the position;
• Knowledgeable about and supportive of the Amputee Coalition and a registered friend in the Amputee Coalition database;
• Knowledgeable in basic limb loss statistics including all levels of amputation and about the effects of limb loss;
• Able to pass a criminal background check if required by the hospitals or rehab centers;
• Able to provide three references, including at least one from a health care provider and one from his or her support group leader if the applicant is a member of a support group; and
• Able to provide current and active email address and phone number.
Once amputees meet all criteria, they attend an 8-hour training course where they perform a mixture of activities, including readings, role play and team building exercises. Some peer visiting programs, like the one offered at the Rehabilitation Institute of Chicago (RIC) Life Center, also offer continuing education courses for their peer visitors throughout the year to keep them up-to-date on peer support training skills.
“We have a formal peer visitor program where we select individuals based on certain criteria including how well they have coped and adjusted to their new life,” Lisa Rosen, MS, manager of the RIC Life Center, said. “[Peer visitors] go through a full day’s training program and then they are continually mentored throughout the year and offered continuing education opportunities to broaden their knowledge.”
Once individuals have passed training, they can go out into the community and make relationships with hospitals and rehabilitation facilities who can contact them when they have a patient who needs an amputation. Hospitals that are in smaller areas that do not know of local support groups or peer visitors can contact someone at the Amputee Coalition who will go through the database and find an amputee who matches the patient’s amputation, cause of amputation, age and gender.
“The match is important and we try to match the level of amputation. We want a below knee if [the patient is] a below knee vs. a below knee visiting an above knee because a below knee never operated a mechanical and computerized knee,” Steele said. “You don’t want a person who is 24 years old and doing triathlons as an amputee visiting someone 67 years old. So we try to get the best match as we possibly can.”
Steele added that when there is not an amputee in the area who can peer visit with a patient, they try to find an amputee who would be available to speak with the patient over the phone to help answer some of the patient’s questions and relieve any anxieties.
“A lot of peer visits over the years have been over the phone because geographically there were no ‘in-person’ visitors nearby,” he said. “In-person visits are preferred, but phone visits do help relieve the anxiety and provide the individuals with information about the process.”
However, peer visiting does not end when the patient leaves the hospital or rehabilitation center. Peer visiting continues months after the amputation as the new amputee comes across daily issues.
“Peer visits usually average 30 minutes to an hour; some may go longer, but that is not the whole process. The patient is not going to be able to ask all the questions that are going to come up because they have not gotten to certain stages yet,” Steele said. “In many cases, a peer visitor will exchange numbers and they keep in touch for the first 2 [months] to 4 months or more as that person is going down the road to readjustment and recovery and have more questions that they couldn’t think of while they were in the rehabilitation hospital.”
Importance of peer support training
Organizations such as the Amputee Coalition, the Amputee Empowerment Partners and RIC Life Center have a strong belief in the importance of peer visitor training. According to an article published in First Step by the National Limb Loss Resource Center, “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 health care professionals can hinder rather than help individuals in crisis situation.” The article continues to list objectivity, listening skills and appropriate techniques as skill sets amputees will develop through training.
However, even after attending a training course, there may be certain individuals who are still deemed not ready for peer visiting by the peer visitor trainer.
“All of our trainers have undergone about a 4-day training course so they can decide if an individual is ready to become a peer visitor,” Jessie Cantrell, peer support coordinator at the Amputee Coalition, told O&P Business News. “Just because someone takes the peer visitor course does not mean that they are actually ready to make peer visits and ready to meet with people, so [the trainers are trained] to look for signs that would allow them to pass or not pass an individual from a class.”
During training, one skill amputees need to exhibit is communication, which is important to provide correct and coherent information to patients.
“It is important that [peer visitors] have excellent communication skills because when someone is new to their disability, they are typically at a vulnerable time in their lives,” Rosen said. “When they meet a peer, they ask both personal and medical questions and a peer is not a doctor so we want to make sure that they know what not to say. Everyone’s experience is different and just because one person has one outcome, it does not mean that the other person will have the same, so the training is essential.”
Being able to provide the right information is only part of peer visiting. A peer visitor needs to know how to listen to and comprehend what the patient is experiencing physically and emotionally.
“Too many non-certified peer visitor amputees living a full and productive life think by telling their story they will encourage new amputees,” Steele said. “To a small degree it does, but listening to and understanding the new amputee’s concerns, anxieties, etc. is what helps the peer visitor understand and answer their questions and direct them to resources that help address their concerns.”
Besides providing trainees with communicating and listening skills, according to Steele, peer visitor training helps amputees:
• Know and understand the entire process that was developed through the experiences of many peer visitors before them;
• Understand and comply with federal and state laws and hospital rules for volunteers;
• Have a greater knowledge of local and national resources available;
• Understand ethical boundaries and behavior;
• Stay away from recommending drugs, providers, etc.; and
• Be conscious of activities that may expose them to legal problems.
It is also important that peer visitors are individuals who are active in their community, leading a fulfilling life and are able to hold relationships with other individuals.
“When someone goes through a life changing event such as losing a limb, it pulls the carpet out from under them and their life gets turned upside-down and people want to get their life back and be as independent as possible,” Rosen said. “That is where a peer mentor can help as they can offer insight and support from someone who has been there. If the person who is providing support has not made that successful transition back to their life, then they would not be a very good mentor.”
Peer support for caregivers
An individual undergoing limb loss is not the only one who may need and benefit from peer support. Caregivers and family members may also need the support to help them understand what they need to do and how they can help.
“A lot of family members reach out to us because their life is about to change or has recently changed,” Cantrell said. “They want to be able to help their family member, but are also experiencing their own anxieties and concerns. So it is very helpful when they can speak to another caregiver for encouragement and support.”
According to Steele, there are spouses who have undergone peer support training along with their partner, but instead of focusing on what to say to the patient, training emphasized what to say to the spouse or caregiver. Even if a caregiver does not undergo training, the Amputee Coalition provides plenty of information that could help, including an amputee packet provided to the amputee at their first peer visit.
“We tell [peer visitors] that often they are going to have a family member present during visiting hours. Most of the time it is a spouse and the peer visitor can tell them that the Amputee Coalition has a lot of information, studies and people who have experience as a spouse or caregiver to an amputee,” Steele said. “So we do have spouses who have sat through peer visitation training, and we have a lot of information that people can call up and get that will help a caregiver, spouse or family member.”
The Amputee Coalition also provides support for parents who have a child with congenital limb loss by connecting them with parents who went through the same situation and whose child is succeeding.
“[The peer support program] does so much more than medical intervention because it is working on the individual’s emotions as well. It helps to empower people who are affected by limb loss to achieve their full potential in life,” Steele said. “There are many that are doing this and that do it well. The only thing we are trying to do is leave no amputee without peer support and we need more hospitals and health care facilities to understand the power of it and help us achieve that goal.” — by Casey Tingle
AgrAbility Peer Support Resources. Available at: http://fyi.uwex.edu/agrability/staff-development/peer-support-resources-toc/peer-support-resources/. Accessed August 15, 2014.
Amputee Coalition CPV Criteria. Available at: www.amputee-coalition.org/support-groups-peer-support/documents/cpv-criteria.pdf. Accessed August 15, 2014.
First Step 2001: Facing Amputation Surgery: The Value of Peer Contact. Available at: www.amputee-coaltion.org/first_step/firststepv2_s1a08.html. Accessed August 15, 2014.
Online, password-protected, peer support Available at: www.EmpoweringAmputees.org
Hanger Clinic’s Amputee Empowerment Partners. Available at: www.hangerclinic.com/new-patient/Pages/Amputee-Empowerment-Partners.aspx
Disclosures: Cantrell, Davis, Howell, Rosen and Steele have no relevant financial disclosures.