A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
Spinal cord injuries (SCI) occur along the tight bundle of cells and nerves that relay messages from the brain to and from the rest of the body. People with SCI may experience temporary or permanent changes in movement, strength, sensation, and body functions below the place of injury. Depending on the specific location of the injury, SCI can also lead to paralysis in some or most of the body, and people with SCI may use a wheelchair or other mobility device to get around.
Peer support can help people with SCI adjust to life and adapt to changes after their injury. Through peer support, people with similar disabilities give and receive emotional and educational support in a respectful way. Studies have shown that peer support can provide friendship, emotional support, and positive health benefits to people with disabilities. People with SCI reported improved psychological well-being, increased participation in social activities, and increased life satisfaction after receiving peer support. Formal peer support may be offered to people with SCI in the hospital, with a mentor assigned to them during their post-SCI recovery. Informal peer support can come from within the community and can provide extended benefits to people with SCI after they are discharged from the hospital. Informal peer support can be delivered in group sessions, one-on-one, and even online.
Past studies have mostly focused on the benefits mentees receive from peer support and not on the benefits to the one providing the support. In addition, few studies have focused on the benefits of informal support for people with SCI. In a recent NIDILRR-funded study, researchers wanted to explore the experience of giving and receiving informal peer support in people with SCI.
Researchers at the Disability, Rehabilitation, Engineering Access for Minorities project interviewed 16 individuals with SCI between the ages of 22 and 58 who were part of a larger study looking at an exercise program for people with SCI. Participants were between 1- and 25-years post-injury and primarily used a wheelchair for transportation. The majority of participants were male and from ethnically diverse backgrounds. As part of the larger study, participants were interviewed about their experiences with exercise and adapting to life after SCI. During the interviews, participants also discussed their experiences of giving and receiving support from their peers, recalling times they learned from people who had lived in the community and when they shared their knowledge with people new to SCI. Responses were transcribed and categorized into themes and subthemes.
Researchers found that three main themes emerged related to informal peer support: learning new ways to adapt, helping others adjust, and teaching new skills.
- Learning new ways to adapt: Participants mentioned that through informal peer support they learned or relearned how to do activities in their day-to-day living such as cooking or getting out of the house. For example, peers shared tips on how to travel through town independently.
- Helping others adjust: Participants shared the importance of being able to help their peers adjust to their new life post-injury by talking about their own experiences. Participants discussed wanting to motivate others and finding purpose in helping others see their potential.
- Teaching new skills: Participants reported that the process of teaching their peers what they learned and sharing new information with them was rewarding. Participants mentioned that teaching was a give and take experience where both people were learning from each other. Individuals who had SCI injuries for a longer period of time not only taught people who recently received SCI injuries but also learned from them.
According to the authors, learning how to adapt from informal mentors was important in adjusting to life post-injury for the participants in this study. Through informal peer support, participants acquired new skills that helped them in their daily living and with traveling outside their homes, increasing their sense of autonomy and leading to more social participation and mobility within the community. The authors also noted that even those with older injuries learned something new in the informal peer relationship, and suggested that the give-and-take of informal peer support allows those with older injuries to share their knowledge and experience, but also allows those with newer injuries to teach new methods of adaptation to their more experienced peers.
As indicated by the authors, informal peer support may be a beneficial tool in the extended treatment of people with SCI beyond the hospital. Informal peer support can have specific benefits for both parties in the relationship, not just for the person receiving support. The authors suggested that practitioners may want to provide opportunities for newly injured individuals to meet and interact with those who have lived longer with their SCI in less formal settings, such as monthly gatherings or community events. While formal peer support relationships are more structured without the opportunity to choose a mentor or mentee, informal peer support may provide opportunities to establish relationships with peers who are closer in age, background, or other characteristics. Future research may be beneficial in exploring how informal peer relationships are formed and how to facilitate them.
To Learn More
The Research in Focus series examined NIDILRR-funded research on the role of health and social support networks in the life of people with SCI.
- For People with Traumatic Spinal Cord Injury, Relationships and Social Supports May be Linked to Life Satisfaction
- People with Long-Term Physical Disability Have a Lot to Share About Successful Aging
- SCI Advocates and SCI Practitioners Share Their Strategies for Successfully Navigating the Complex Healthcare System
The National Paralysis Resource Center offers many programs and resources for people with SCI and other forms of paralysis, including a peer mentor program for people new to paralysis and their families.
To Learn More About this Study
Pebdani, R.N., Leon, J., Won, D.S., deLeon, R.D, Dy, C.J., Keslacy, S. (2023). “Teaching somebody else makes you a better person:'' A phenomenological exploration of the importance of informal peer support for individuals with spinal cord injury. Disability and Health Journal, 16(4), 101505. This article is available from the NARIC collection under Accession Number J92772.