In today’s health care system, patients are often discharged from acute care following life-changing events with little or no information or resources. Professionals required to handle complex patients must transfer them through fragmented systems as dictated by payor codes/eligibility requirements, utilization review boards, case management guidelines and limited agency resources.
In this context, it is unlikely that patients see a specialist, receive valuable resources or have an opportunity to meet or talk to someone who can relate to their concerns. This lack of information promotes feelings of isolation, lowers sense of self esteem and decreases movement toward positive adaptation thus emphasizing the need for peer support.
While rehabilitation specialists can fabricate devices, improve function, appearance and strength, only interaction with other amputees can replace fear of the unknown with information and knowledge. When helplessness, depression and low self esteem are replaced with hopefulness, and the focus on loss evolves into a future vision of quality life with meaning and purpose, then rehabilitation becomes an active collaborative partnership between patients and professionals to reach goals.
Modeling by peers who move beyond minimal survival expectations further demonstrates that quality living can include active participation in sports and recreational activities. Peers can discuss their personal experiences, including training, device modifications and practice with activities of daily living to achieve independence. Reminders of these needs flooded my life, recently in at the Families & Amputees in Motion (FAIM) picnic as new amputees shared experiences including tying shoes, handling multiple items of food on picnic plates and of course, enjoying numerous activities from jumping jack, to tennis and gymnastics.
It is easy to overlook the need for peers as we attempt to focus on possibilities rather than problems. Everyone knows a story from TV, newspapers even magazine about amputees in sports, the military etc. Yet, without the personal interaction, such feats generally seem impossible to the new amputee or new parent still experiencing a profound sense of loss and grief. Most people need to touch, feel and understand foreign concepts prior to acceptance.
If you have not included peer support in your daily practice, you should. It’s as easy as contacting your local support group, scheduling patients with similar issues together. Many people actively support activities, picnics, sport events, instructional programs etc. After over 25 years since FAIM started in Chicago, it’s a joy to see how many new amputee families attend our annual picnic. Experienced amputees willingly talk to new amputees and their families. They share their challenges and demonstrate their accomplishments to others who struggle with the same issues they did many years before. Peer support is a win-win situation! It helps those who give as well as those who receive it. If you have not been involved, you’re missing the opportunity of a lifetime.