You may have intelligent doctors who provide you with the best treatment possible and supportive caregivers who have your best interests in mind, but no one can really understand the daily challenges you face like someone who is also going through or has gone through similar events as you have or has taken care of a loved one with a similar diagnosis.
Research has shown that there is an increasing body of research and anecdotal evidence that demonstrate the benefit of peer support for managing long-term conditions.
One study, for example, examined individuals who experienced traumatic brain injury and their families. “Participants in the peer support program reported positive impacts of peer support on increasing their knowledge of TBI, enhancing their overall quality of life, improving their general outlook, and enhancing their ability to cope with depression post TBI.”1
Benefits of peer-to-peer mentoring may include:
- Providing emotional and social support (decreasing your negative emotions and stress and encouraging you to maintain your treatment)
- Helping you apply your treatment to your daily life (incorporating healthy eating, physical activity, stress management, depressions treatment info medication management)
- Encouraging you to seek further treatment when necessary
- Giving you ongoing support when you need it over your lifetime
“People living with chronic illnesses have a great deal to offer each other; they share knowledge and experience that others, including many health care professionals, cannot understand…Peer support interventions can be a powerful way to help patients with chronic diseases live more successfully with their conditions.” 2
Below are links to several organizations (organized by diagnosis) that offer peer-to-peer mentoring programs that may provide you with similar benefits as you cope with your swallowing disorder and other symptoms of your diagnosis.
Cancer (Head & Neck)
Cerebral Palsy
- MyChild (CerebralPalsy.org) Mentors
- Cerebral Palsy Guide
- Cerebral Palsy Group
- Cerebral Palsy Guidance
Dementia
- Alzheimer’s Association Early Stage Peer-to-Peer Outreach Program: http://www.alz.org/pa/in_my_community_helping.asp#estage
Multiple Sclerosis
Parkinson Disease
Stroke/Brain Injury
- American Stroke Association WarmLine
- Brooks Rehabilitation Peer Family Support Program
- DMC Rehabilitation Institute of Michigan Peer Mentoring Services
- Inova Rehabilitation Center Stroke Peer Mentor Program
- Stroke Survivors Association of Ottowa Peer to Peer Visitation Support Program
- Stroke Recovery Association NSW Mentoring Program
- Christopher and Dana Reeve Foundation Peer & Family Support Program
If you are aware of another peer-to-peer support resource that may benefit others with swallowing disorders, please email us at info@nfosd.com.
1Hibbard, M. R., Cantor, J., Charatz, H., Rosenthal, R., Ashman, T., Gundersen, N.,…Gartner, A. (2002). Initial findings of a mentoring program for individuals with Traumatic Brain Injury and their families. Journal of Head Trauma Rehabilitation., 17(2), 112-31. Retrieved from http://bit.ly/1bJ0RzG
2Heisler, M. (2007). Overview of peer support models to improve diabetes self-management and clinical outcomes. Diabetes Spectrum, 20 (4). 214-221. Retrieved from http://spectrum.diabetesjournals.org/content/20/4/214.full#sec-7