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Peer Support

November 2008

People with limb loss have particular information needs. Topic of the Month is a resource guide of information relevant to amputees. Click on the links below to access articles and Web sites directly. Many of the books and videos can be borrowed through Interlibrary Loan.

Many more resources can be found by searching our online library. Please feel free to share this resource with those who may find this useful. We also welcome your comments and topic suggestions! Contact us via e-mail at library@amputee-coalition.org.

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This includes general resources on peer support, support groups, and the Amputee Coalition’s National Peer Network (NPN). Contact the Amputee Coalition to receive more information about finding or starting a support group or to request a peer visit.

Amputee Coalition Articles & Fact Sheets

Get Ready to Swim: Peer Support Helps Amputees Take the Plunge / Élan Young. Knoxville, TN: Amputee Coalition, 2007. Article from inMotion, October 2007. "Swimming for Fun and Fitness" was one of the most popular sessions at the 2007 Amputee Coalition National Conference, showing a strong demand among amputees to learn swimming techniques, no matter how many years it has been since they entered a pool. Amputees can minimize injury by using common sense and following safety tips.
www.amputee-coalition.org/inmotion/oct_07/swim.html
www.amputee-coalition.org/inmotion/oct_07/swim.pdf
Easy Read: www.amputee-coalition.org/easyread/inmotion/oct_07/swim-ez.html
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/swim.html
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/swim.pdf

Giving Back: Couples Who Peer Visit. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, November / December 2004. The initial shock of amputation often leaves family members overwhelmed and asking the same questions as the new amputee. The Amputee Coalition Certified Family Visitor designation was created in response to the need of family members to have someone to share experiences with.
www.amputee-coalition.org/inmotion/nov_dec_04/givingback.html
www.amputee-coalition.org/inmotion/nov_dec_04/givingback.pdf
Spanish: www.amputee-coalition.org/spanish/inmotion/nov_dec_04/givingback.html
Spanish: Spanish: www.amputee-coalition.org/spanish/inmotion/nov_dec_04/givingback.pdf

Introduction to the Amputee Coalition's National Peer Network: Providing Emotional Support and Information Essential for Recovery / Patricia J. Isenberg. Knoxville, TN: Amputee Coalition, 2007. Article from inMotion, October 2007. The Amputee Coalition of America's National Peer Network (NPN) offers support and information to amputees and parents of children with limb differences. NPN's goal is to help people with their recovery. This article outlines many NPN programs and activities.
www.amputee-coalition.org/inmotion/oct_07/intro_npn.html
www.amputee-coalition.org/inmotion/oct_07/intro_npn.pdf
Easy Read: www.amputee-coalition.org/easyread/inmotion/oct_07/intro_npn-ez.html
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/intro_npn.html
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/intro_npn.pdf

NLLIC Amputee Coalition Fact Sheet: Fundraising for Your Support Group / NLLIC Staff. Knoxville, TN: Amputee Coalition. This fact sheet discusses support group member involvement in fundraising. Ideas for different types of fundraisers are included.
www.amputee-coalition.org/fact_sheets/sgfundraising.html
www.amputee-coalition.org/fact_sheets/sgfundraising.pdf
Spanish: www.amputee-coalition.org/spanish/fact_sheets/sgfundraising.html
Spanish: www.amputee-coalition.org/spanish/fact_sheets/sgfundraising.pdf

NLLIC Amputee Coalition Fact Sheet: Peer Support for Children and Parents / Amputee Coalition Staff. Knoxville, TN: Amputee Coalition. This fact sheet discusses peer visitation and resources for parents and children. Peers can help new amputees adjust to a new life by sharing information, offering emotional and practical support and serving as models of success. Peer support is especially helpful to young people.
www.amputee-coalition.org/fact_sheets/peer_support_children_parents.html
www.amputee-coalition.org/fact_sheets/peer_support_children_parents.pdf
Spanish: www.amputee-coalition.org/spanish/fact_sheets/peer_support_children_parents.html
Spanish: www.amputee-coalition.org/spanish/fact_sheets/peer_support_children_parents.pdf

NLLIC Amputee Coalition Fact Sheet: Online Communication Resources for Those With Limb Loss / National Limb Loss Information Center Staff. Knoxville, TN: Amputee Coalition. Resources for amputees or family members of amputees who would like to communicate with other amputees via Internet bulletin boards or e-mail lists.
www.amputee-coalition.org/fact_sheets/online_communication.html
www.amputee-coalition.org/fact_sheets/online_communication.pdf
Spanish: www.amputee-coalition.org/spanish/fact_sheets/online_communication.html
Spanish: www.amputee-coalition.org/spanish/fact_sheets/online_communication.pdf

NLLIC Amputee Coalition Fact Sheet: Starting a Support Group: The Basics / National Limb Loss Information Center Staff. Knoxville, TN: Amputee Coalition of America. Starting a support group is a responsibility, a challenge and a very meaningful experience. This fact sheet offers a listing of first steps compiled from successful support groups and organizations all over the country.
www.amputee-coalition.org/fact_sheets/start_sg.html
www.amputee-coalition.org/fact_sheets/start_sg.pdf
Easy Read: www.amputee-coalition.org/easyread/fact_sheets/start_sg-ez.html
Spanish: www.amputee-coalition.org/spanish/fact_sheets/start_sg.html
Spanish: www.amputee-coalition.org/spanish/fact_sheets/start_sg.pdf

NLLIC Amputee Coalition Fact Sheet: Understanding Amputee Coalition's National Peer Network / National Limb Loss Information Center Staff. Knoxville, TN: Amputee Coalition of America. An explanation of the Amputee Coalition’s National Peer Network. Includes information on the network's purpose and how it works, as well as required training for peer visitors.
www.amputee-coalition.org/fact_sheets/peer_network.html
www.amputee-coalition.org/fact_sheets/peer_network.pdf

National and Regional Support Groups Reach Out to New Amputees / Kim Norton. Knoxville, TN: Amputee Coalition, 2007. Article from inMotion, July / August 2007. This Easy Read translation (original article title is “Reaching Out”) is about how regional / local support groups work with the Amputee Coalition to reach out to community members who need support.
Easy Read: www.amputee-coalition.org/easyread/inmotion/jul_aug_07/reach_out-ez.html

Notes from the Medical Director: First and Foremost, Listen! Lessons Learned From Mentors and Peer Visitors / Douglas G. Smith. Knoxville, TN: Amputee Coalition, 2003. Article from inMotion, November / December 2003. Doug Smith, Amputee Coalition Medical Director, discusses the important role that mentors can play in our lives and how a peer visitor can become a mentor.
www.amputee-coalition.org/inmotion/nov_dec_03/listen.html
www.amputee-coalition.org/inmotion/nov_dec_03/listen.pdf

Offering Enhanced Support Through Community Partnerships / Cecile B. Evans... [et al.]. Knoxville, TN: Amputee Coalition of America, 2007. Article from inMotion, January / February 2007. Sherri and William Samuels, leaders of the Memphis area support group Out On A Limb (OOAL), have collaborated with a variety of community organizations to enhance OOAL's assistance and support function for members. This article discusses how OOAL has partnered with organizations such as the Amputee Coalition, local libraries and health professionals, as well as how they gained credibility within the community.
www.amputee-coalition.org/inmotion/jan_feb_07/community_partners.html
www.amputee-coalition.org/inmotion/jan_feb_07/community_partners.pdf

Paying It Forward: How One Texas Family Keeps Giving Their Gift of Hope / Erin M. King. Knoxville, TN: Amputee Coalition, 2007. Article from inMotion, October 2007. This article is about how one family started a support group after receiving a meaningful peer visit. They offer practical advice for others starting support groups.
www.amputee-coalition.org/inmotion/oct_07/paying_forward.html
www.amputee-coalition.org/inmotion/oct_07/paying_forward.pdf
Easy Read: www.amputee-coalition.org/easyread/inmotion/oct_07/paying_forward-ez.html
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/paying_forward.html
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/paying_forward.pdf

The Power of Peers / Becky Bruce. Knoxville, TN: Amputee Coalition, 2003. Article from First Step: A Guide for Adapting to Limb Loss, 2003. This article looks at the importance of peers in providing guidance and emotional support when faced with an amputation.
www.amputee-coalition.org/first_step_2003/power-of-peers.html
www.amputee-coalition.org/first_step_2003/power-of-peers.pdf
Spanish: www.amputee-coalition.org/spanish/first_step_2003/power-of-peers.html
Spanish: www.amputee-coalition.org/spanish/first_step_2003/power-of-peers.pdf

Starting a Support Group / Élan Young. Knoxville, TN: Amputee Coalition, 2007. Article from inMotion, October 2007. Face-to-face support groups offer great opportunities for people with similar struggles to learn from each other. New amputees can better adjust to life with limb loss by attending support groups with their peers. However, not every amputee lives near an active support group. For amputees who want to meet others like them, starting a support group may be the best solution. Based on the experience of support group leaders nationwide, the Amputee Coalition suggests some basic steps for starting a group.
www.amputee-coalition.org/inmotion/oct_07/starting_sg.html
www.amputee-coalition.org/inmotion/oct_07/starting_sg.pdf
Easy Read: www.amputee-coalition.org/easyread/inmotion/oct_07/starting_sg-ez.html
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/starting_sg.html
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/starting_sg.pdf

The Strong Bonds of Summer: Amputee Coalition Youth Camp Provides Peer Support to Young Amputees / Élan Young. Knoxville, TN: Amputee Coalition, 2007. Article from inMotion, October 2007. The Amputee Coalition offers a camp for kids to come together for an experience far away from some of the main stressors in their lives. The Amputee Coalition Youth Camp hosts a mix of workshops, games and activities intended to engage them socially and physically. The camp is about discovery for young amputees.
www.amputee-coalition.org/inmotion/oct_07/youth_camp.html
www.amputee-coalition.org/inmotion/oct_07/youth_camp.pdf
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/youth_camp.html
Spanish: www.amputee-coalition.org/spanish/inmotion/oct_07/youth_camp.pdf

Support and Information for Upper-Limb Amputees: Just a Few Keystrokes or Phone Call Away / Eric A. Westover. Knoxville, TN: Amputee Coalition, 2005. Article from inMotion, May / June 2005. Information and resources for the upper-limb amputee.
www.amputee-coalition.org/inmotion/may_jun_05/upper-limbsupport.html
www.amputee-coalition.org/inmotion/may_jun_05/upper-limbsupport.pdf
Spanish: www.amputee-coalition.org/spanish/inmotion/may_jun_05/upper-limbsupport.html
Spanish: www.amputee-coalition.org/spanish/inmotion/may_jun_05/upper-limbsupport.pdf

Trained vs. Untrained Peer Contacts: How Much Difference Does it Make? / Georgie Maxfield and Cheryl Bias. Knoxville, TN: Amputee Coalition, 1999. Article from inMotion, March / April 1999. Georgie Maxfield and Cheryl Bias discuss the importance of trained amputee peer contacts to the new amputee.
www.amputee-coalition.org/inmotion/mar_apr_99/trained.html

When You Just Can't Get Out. Knoxville, TN: Amputee Coalition, 2006. Article from inMotion, November / December 2006. This article discusses ways to remain active and social even if you are homebound or have limited time away from home. Possibilities include online support groups, virtual games, ham radio and volunteering.
www.amputee-coalition.org/inmotion/nov_dec_06/cant_get_out.html
www.amputee-coalition.org/inmotion/nov_dec_06/cant_get_out.pdf
Spanish: www.amputee-coalition.org/spanish/inmotion/nov_dec_06/cant_get_out.html
Spanish: www.amputee-coalition.org/spanish/inmotion/nov_dec_06/cant_get_out.pdf

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Books

Living Through Loss: A Training Guide for Those Supporting People Facing Loss/ Fay W. Jacobsen, Margaret Kindlen, and Allison Shoemark. London; Bristol, PA: Jessica Kingsley Publishers, 1997.ISBN: 1-85302-395-7. This is a manual for those working with issues of terminal illness and bereavement.

Member Support Group Manual: A Publication of the National Limb Loss Information Center.Knoxville, TN: Amputee Coalition. This manual, produced by the Amputee Coalition, includes information that will be useful for newly formed as well as established amputee support groups.

What Can I Say? A Guide to Visiting Friends and Family Who Are Ill/ Simon and Karen Fox. Santa Barbara, CA: Adventures in Caring Foundation, 2003. ISBN: 0965580326. The purpose of this book is to help you feel more confident and at ease when visiting friends or family who are sick. An easy-to-read, 94-page book is both practical and inspiring.

The Essence of Being Real / Jennifer L. Wilkerson. Baltimore, Md.: Sidran Press, c2002. ISBN: 1-886968-12-8. This manual can be used to form a new support group or enhance a pre-existing support group. The tools in this manual will give you a deeper understanding of how trauma affects relationships and how peer support can create long-lasting and meaningful change.

Supporting Amputees: A Guide for Religious and Community Organizations / Sheryl B. Samuels and William B. Samuels. A project of OOAL, Out On A Limb – Memphis-area limb-loss support group. Memphis, TN: Out On A Limb, 2006. Amputee support falls largely on religious and community organizations. This pamphlet assists clergy and agency professionals working with people facing or living with limb loss. It summarizes needs, issues and possible alternatives of care.

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PubMed®

Advances in Amputee Care / Pasquina PF, Bryant PR, Huang ME, Roberts TL, Nelson VS, Flood KM. Citation to Article: Archives in Physical Medicine and Rehabilitation, 2006 Mar;87(3 Suppl 1):S34-43; Review.
www.ncbi.nlm.nih.gov/pubmed/16500191

Building a Successful Support Group for Post-Amputation Patients / Marzen-Groller K, Bartman K. Citation to Article: Journal of Vascular Nursing, 2005 Jun; 23(2):42-5.
www.ncbi.nlm.nih.gov/pubmed/16102471

Nursing's Role With Amputee Support Groups / Jacobsen JM.
Citation to Article: Journal of Vascular Nursing, 1998 Jun; 16(2):31-4. Review.
www.ncbi.nlm.nih.gov/pubmed/9735733

Other Amputees Are the Greatest Help in Dealing With Limb Loss/ Page N, Rowe J.
Citation to article: BMJ, 1998 Sep 5;317(7159):682.
www.ncbi.nlm.nih.gov/pubmed/9728011

Patient Information on Phantom Limb Pain: A Focus Group Study of Patient Experiences, Perceptions and Opinions / Mortimer CM, Steedman WM, McMillan IR, Martin DJ, Ravey J.
Citation to Article: Health Education Research. 2002 Jun;17(3):291-304.
www.ncbi.nlm.nih.gov/pubmed/12120845

Peer Visitation for the Preoperative Amputee Patient / Fitzgerald DM.
Citation to Article: Journal of Vascular Nursing, 2000 Jun; 18(2):41-4.
www.ncbi.nlm.nih.gov/pubmed/11249285

Traumatic Below-Elbow Amputations / Freeland AE, Psonak R.
Citation to Article: Orthopedics, 2007 Feb; 30(2):120-6. Review.
www.ncbi.nlm.nih.gov/pubmed/17323634

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Videos & CD-ROMs

Living With Diabetes: Challenges in the African American Community / produced by University of Michigan Diabetes Research and Training Center; executive producer, Patricia Barr; producers / directors, Patrick Murphy, Scott Mann. Alexandria, VA: American Diabetes Association, c2000. ISBN: 1580400302. VHS. A series of 12 short programs designed to be viewed and discussed in a separate session of about an hour. Each episode is set in the New Hope Baptist Church, which serves the African American community. A diabetes support group meets at the church and each program tells the story of one member of the group.

There Is Life After Amputation / Real Life Video Productions. Westland, Mich.: Real Life Video Productions, c2005. DVD. Summary: Presents the personal stories of the amputees involved in the Amputee Support Group at Saint Joseph Mercy Hospital in Ann Arbor, Michigan. The group discusses coping, peer support, family involvement, goals, challenges, hobbies, interests, laughter and support groups. For family members, caregivers and anyone who has experienced or is anticipating an amputation.

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Web Sites

Amputee Coalition. Knoxville, TN: Amputee Coalition of America, 1999-.
This Web site provides a wealth of information to all amputees. Search the library for more resources, call the toll-free hotline for information or submit a question online.
www.amputee-coalition.org

National Peer Network & Parent Support Network. Knoxville, TN: Amputee Coalition, 1999-. This is the main Web page for the Amputee Coalition’s National Peer Network (NPN). NPN connects trained and experienced peer visitors nationwide to people with limb loss to provide encouragement and information. The Parent Support Network is specifically for parents of children who have limb difference. Remember that you are not alone. If you want to speak with another amputee or parent, contact the Amputee Coalition and ask to be connected with someone of the same gender and age group with similar limb differences.
www.amputee-coalition.org/npn_about.html

National Peer Network: Support Group Listing. Knoxville, TN: Amputee Coalition, 1999-. This National Peer Network feature lists amputee support groups registered with the Amputee Coalition of America. Find a support group near you. Listings sorted by state.
www.amputee-coalition.org/support_groups/npn_group_list.asp