By Kathy Spozio

Erie Group is A-FACT

April's issue of the Communicator, published an article titled "Gaining Respect and Recognition for your Peer Visitation Program." (You can find it at http://www.amputee-coalition.org/communicator/vol3no2pg3.html). It presented a concept that suggests there is more than one approach to developing a successful peer visitation program and featured the Central California Amputee Education Support Group (CCAESG). Under the direction of Liz Zemke, RN, ACA Regional Representative (Region K) and below knee amputee, this group and visitation program became both well established and respected over the years. In contrast, this month's article, featuring the Amputees & Families Actively Caring Together (A-FACT) group, will demonstrate what can be done to grow a start-up group into a noteworthy program in less than a year.

In the spring and early summer of 2001, a unique birthing process was underway at the Hamot Health Foundation in Erie, Pennsylvania, albeit, not in the maternity ward. Like many newborns, Hamot's new arrival had been planned for a long while, even before its conception. As a matter of fact, James Ray, Pharm.D., clinical pharmacist in pain and palliative care at the health center, had been envisioning ways to support amputees as part of a comprehensive program that would address issues facing amputees on a larger scale: pre, during, and post amputation, particularly in the area relative to pain management. Part of Dr. Ray's vision included the creation of what the medical center calls "Order Sets," i.e., specific guidelines to assist medical professionals in helping to ensure their patients' reception of optimal outcomes of amputation surgery. As part of this in-depth plan, the Amputees & Families Actively Caring Together support group was born.

Organizing and spearheading the efforts of the group is pain management nurse, Donna Rapheal. She has shared Dr. Ray's vision from the get-go and has been the real impetus behind the development and nurturing of the group thus far. 

In most cases, a peer visitation program grows from within an already established support group; however, the Erie group wasn't traditional in this sense. The beginning of their support group and peer visitation program happened on the same day.let's call it the birth of twins! It was August 11, 2001, when Gary Torick and I presented a peer visitation training to nine amputees and eight healthcare professionals. The local television station was there to interview attendees and presenters and, later that evening, Gary and I saw ourselves on the evening news. The media did an excellent job promoting both the local support group and the ACA; they even flashed the ACA's contact number on the TV screen. Rapheal, the group's facilitator, believes that the coverage has helped a lot with the growth of the group that now numbers 23, ranging in age from 21 to 85.

Following its August inception, A-FACT has met regularly on the fourth Monday of each month. The diverse programs have included both social gatherings and educational sessions, including speakers on diabetes, prosthetic hygiene, a Christmas party, and two social dinners at local restaurants. It was at one of these dinners that things turned really "social." On a particular night in October, 2001, the news media were present to provide highlights for the evening newscast. One of the reporters got wind of the recent engagement, just a few hours previous to the meeting, of one of the support group's members and zoomed in on the couple and their story. It was by watching the evening news that the couple's families learned of their engagement. Now, that's a novel way to get publicity, for both the support group and the couple! 

The Hamot group has also had some out-of-the-ordinary experiences in their short tenure together. Donna Rapheal, along with two of the group's members, an above-knee and a below-knee amputee, was invited to teach six sections of a health class at the local high school. They were warmly received and discussed issues concerning diabetes prevention, cardiovascular disease, and cancer, among other amputee related topics. One of the participants, who was a teen when she lost her leg to cancer, spoke frankly concerning how kids in school were cruel and made fun of her. The hope of the all the presenters, said Rapheal, is that the young adults will realize the importance of respecting people with disabilities. "Hopefully, the message we left the students with," said Rapheal, "is that people who are different can be found in all walks of life." Another out-of-the-ordinary happening will occur in September, 2002, when a support group member, Ron Holman, cyclist and double above-knee amputee, will hand-pedal from Erie to Pittsburgh to raise disability awareness. The bike ride, to be sponsored by Healthsouth and supported by Hamot's Amputees & Families Actively Caring Together, will raise money for a scholarship fund for students with disabilities. 

Although the group is still working on the idea of a newsletter, the Hamot foundation and the support group facilitator have just put the finishing touches on a publication called the "Amputation Education Handbook." This 85 pages-plus document covers a wide gamut of topics and information intended for pre and post amputees. A sampling of the table of contents includes such topics as: What to Expect During your Stay, Pain Management, Physical Therapy, Occupational Therapy, After Discharge (skin care, ace wrapping, depression, signs of infection, home care, peer visitation network, support group, ACA, and more), Nutrition, Web Sites, Prosthetists, and Definitions (of common prosthetic terminology).

Rapheal credits the assistance of the ACA and former regional representative Gary Torick and the Pittsburgh based support group Unlimbited for help in gathering resources for a packet that is supplied to amputees who receive peer visits. Contents of the A-FACT packet includes a copy of First Step and inMotion magazines, a welcome letter from Rapheal, information on the support group and peer visitation, applications for a Pennsylvania handicap parking placard or license plate, application for the city of Erie transportation assistance service for people with disabilities, glossary of prosthetic definitions, a copy of You're Not Alone, and a listing of local prosthetists.

It appears that the action has only just begun in this Great Lake locale and plans for the future include a pediatric spin off of this adult group. With a Shriners Hospital located in the same town, Rapheal has already opened dialogue with the administration in hopes of hosting a joint meeting and including both kids and parents from the Shriners' facility.

As you can see, there's a lot happening in the Erie, PA, amputee community. Thanks to Donna Rapheal, the Hamot administration, and the active amputees of this group, progress has been fast and furious in a very short period of time-and that's A-FACT! 

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Peer Visitation Q and A Forum

Dear Kathy,

At a recent support group meeting, one of the amputee members shared with the group that they were feeling quite depressed. They said they felt there was no reason to "go on" and that life was not worth living. They also indicated they had a plan for taking their life. This left me and the other members with an uncomfortable and somewhat helpless feeling. What is the role of a support group leader given this type of situation? I felt very worried and even somewhat responsible for what this member might do.

Michelle

Dear Michelle,

I can certainly understand your feeling of uncertainty and sense of accountability. Facing an issue such as this, i.e., someone either alluding to or threatening to take his or her life, is serious. This is a real dilemma and a sensitive question to address. I would also like to say that this type of situation could arise not only in a support group setting, but during a peer visit as well. For that reason, I will attempt to provide guidance for both scenarios.

Let me start by referencing and reprinting the ACA's peer visitation training material, which presents a section on suicide. While this material is written specifically for situations that may occur during peer visitation, it also has application for other related functions, such as support group meetings.

(From the Peer Visitation Training Manual:)

Suicide is not a subject people enjoy discussing. However, when people have symptoms of severe depression, it is important to learn ways to recognize suicidal ideation (i.e., the forming of ideas) so precautionary measures can be taken if needed.

Suicide is a complex behavior usually caused by a combination of factors. Research shows that almost all people who kill themselves have a diagnosable mental or substance abuse disorder or both, and that the majority has depressive illness. Studies indicate that the most promising way to prevent suicide and suicidal behavior is through the early recognition and treatment of depression and other psychiatric illnesses.

Two conditions can be associated with suicidal ideation. 

• An increase in a stressor that is considered to be unbearable.
• A feeling of total lack of ability to cope with the stress alone or even with others' help

Suicidal potential is higher:

• for people who feel hopeless and desperate;
• for men than women;
• for people over age 65;
• if the onset of a stressor was sudden;
• if the person has no family or friends;
• if the person has a history of past suicidal attempts or if there is a family history of suicide;
• when the person has a chronic, debilitating illness;
• when the person has no outlet or has been rejected by others;
• if the person has a detailed plan (when, where, method) and has access to the means (i.e., a gun); and/or
• if the person is impulsive.

It is not true that if a person talks about suicide, they will not attempt it. Seriously suicidal people make such comments for a variety of reasons-it is extremely important to take these remarks seriously and refer that person for a mental health evaluation and treatment. A person in crisis may not be aware that they are in need of help or be able to seek it on their own. Unless you are a trained professional, it is not your role to conduct any type of crisis intervention.

So, you might still be wondering; what can you do in real life, whether you are conducting a peer visit or a support group meeting. While this will vary somewhat, dependent on which situation you find yourself in, let's look at both to see how we could react if such an emergency arose.

To get some ideas that may be helpful, I consulted a trained professional, Lisa Paffrath, MS, CACD (Masters of Social Work, Certified Addictions Counselor Diplomate). Lisa pointed out, "Depression is the problem, suicidal thoughts is the symptom;" and someone untrained should "never attempt to counsel a person who manifests suicidal tendencies." She does suggest, however, that there is a difference between offering counseling and offering to "be there" for someone in crisis until help is found. In the case of an emergency, all counties in the United States have mental health personnel. These professionals are trained to assess an individual to determine their need for care and can be reached by dialing 911. This kind of help could be appropriate in either the peer visit or support group setting if no other responsible parties are present and if the person is threatening to harm themselves or others. One caveat here; never remain in any situation where you feel you may be harmed.

During a peer visit, however, we are usually not alone with the amputee, in which case other responsible parties should be made aware of the situation. For instance, if the visit were in a hospital setting, it would be appropriate to pass information like this to the nurse or administrative person in charge. If the visit is at home and other family members are present, the information should be shared with them.

Lisa further suggests that as the facilitator of a support group, it would be wise to address this issue in a general sense to the entire group just like you would present other "rules" of procedure. For instance, you could say that any personal issues discussed in the group setting, health-related or otherwise, are considered confidential and will be held in confidence by all members. However, the exception to this would be if someone indicates they were going to harm themselves or others. In this case, members should be made aware that professionals would be contacted. 

Please remember, there is only so much we can do in either setting. And while we should never attempt to counsel anyone manifesting suicidal tendencies, doing nothing may not be the best solution when someone threatens to harm himself, herself, or another.

If other support group leaders or peer visitation coordinators have information, advice and/or questions to share, please forward them by email directly to Kathy Spozio at mermaid@usachoice.net.