The Importance of Peer Connections and Support
Peer support groups are where people can share their stories, how they deal with tough times, and helpful tips. These groups help people feel like they belong and give them strength because everyone there is going through similar things. In these groups, people with spinal cord injuries and their support persons can learn new things, become stronger, and work towards getting better and living on their own.
While people with SCI may or may not feel ready to connect with others with SCI at this early stage, our research shows that support persons to these individuals can really benefit from the information exchange that occurs when connecting with others who have a shared experience.
Even if the person with a spinal cord injury (SCI) isn't ready to talk to others with SCI yet, our studies show that their support persons can really benefit. They learn a lot when they connect with others who are going through similar things. Besides getting emotional support, support persons also learn important tips about how to actually take care of someone with an SCI. You can ask your SCI rehabilitation center if they have a "peer support program" for both people with SCI and their support systems. Here are some places to find peer support to get you started:
Working Together: SCI Happens to the Family
Family support is important for people getting better from a spinal cord injury (SCI). Families give strong emotional, practical, and social support. However, it's really important that this help makes the person with SCI feel strong and lets them make their own choices. Even though families can help with everyday jobs, speak up for what their loved one needs, and cheer them on, the person with SCI should always be the center in their own journey to get better. People with SCI should help make decisions, set their own goals, and stay in charge of their own life, helping them become more independent.
Quotes from our study about person with SCI and support person’s relationship:
"But he is accepting it (the injury). And we talk a lot about it. And getting ideas from other people, people fdr him to talk to, support groups and that. He's not ready to go get into that yet. But he will, sooner or later, I think. But we're very open. Our relationship's really good."
"No, 'cause he kept, his thing is, "All right, mom, I know you know what's best so you go ahead and choose."
"No, definitely. It's his decision. Like I said, I offer options and he has to choose."
Family and Friends Who Want to Help
It's hard when so many family members and friends ask how they can help, but you're so overwhelmed you can't even think of what to tell them. How can you help them help you? Here are some ideas to get you started:
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Help with Chores at Home: Getting help with things around the house is a huge help for the caregiver. This can be cleaning, tidying the yard, mowing the grass, or just general help keeping the house in shape. Friends and volunteers have even helped with big home changes like building and painting.
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Rides and Transportation: Getting rides is very important. This could be helping the person with SCI get to their appointments, or helping the caregiver with their own errands, like picking up kids from school or just giving them a ride.
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Emotional Support and Breaks: Being a caregiver can be stressful. It's really important for family and friends to offer emotional support. This means being someone to listen, let them vent, or just cheer them up. Some family or friends can give the caregiver a break by staying with the person with SCI for a while.
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Practical Help: Friends and family can help in practical ways, like bringing food or organizing a "meal train" so there's always food ready. Gift cards for dinner out can also give the caregiver a break from cooking. In the beginning, friends might even visit the caregiver at the hospital and bring them things they need, focusing their help directly on the caregiver.
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Financial Help: Family and friends might help with money, or help pay for things like changes to the house or for paid help.
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Fun for the Person with SCI: Friends visiting can be a really important way for the person with SCI to see people and talk, especially if they have to stay home a lot. While this doesn't directly help with care, it helps the person with SCI feel good emotionally. Some caregivers also try to take the person with SCI out to do fun things they enjoyed before their injury, like gardening or going to events.
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Finding Help and Information: Caregivers said they needed help figuring out complicated systems like insurance, Medicaid, and SSDI (money help from the government). NT204B felt it is difficult without a team experienced in such situations and wished for better resources to connect people with the right support. NT213B found that finding organizations takes time they don't have.
There's a strong feeling that "it takes a village" to provide support, and everyone needs to be involved. It's important to check in on the caregiver and ask them how they are doing.
Mental Health Resources
Imagine suddenly not being able to do things you used to, or needing help with almost everything. Spinal cord injury can be really tough on a person's mental health. It is not just the person with SCI that feels this way. The caregivers for them can also have a hard time with their mental health from physical, emotional, and financial work of providing care and support. When someone has spinal cord injury, it’s good to get mental health support early on by asking their healthcare providers to suggest a psychologist, psychiatrists, or counselors specializing in neurohabilitation and chronic conditions. Peer support groups, whether they meet online or in person, can give a lot of comfort and share what they’re going through and learn from each other’s experiences. Also, places like the Model Systems Knowledge Translation Center, and the United Spinal Association provide mental health information and support networks just for people with SCI and their families. It’s important to remember that it’s normal to go through a tough time emotionally after a spinal cord injury. Asking for help from a professional is not a weakness; it’s a brave and important thing to do to feel better overall.
Video Series to Learn More about Living with an SCI
Facingdisability.com Voices of Experience is a 10-part video series for people with new spinal cord injuries showing people who have been living with paralysis for years. This is a way to show that people can live successfully after SCI.