When Lori Beaver had a stroke in her 40s, she was the youngest person on her ward at the Foothills Medical Centre in Calgary. “It was a nightmare. Being so healthy one day and then suddenly, you can’t do anything by yourself,” she recalls of that difficult time back in 2003.
She had many detailed questions about life after stroke that doctors could not answer. Years later, after her recovery and return to work, Lori approached her neurologist. “Can I visit the stroke patients? I think they might have the same questions that I did.”
Her one-on-one peer support was a success. The hospital soon created a more formal program; it’s been expanded to help people with other conditions too. “We just offer hope and lived experience and we answer questions about life after stroke,” says Lori.
Value of peers
Peer support for people living with heart conditions or stroke — and their caregivers — is “an important piece of the puzzle,” says Dr. Jill Cameron. She is a Heart & Stroke funded researcher and professor of occupational science and occupational therapy at the University of Toronto. “If they don’t have the opportunity to get information from peers, where are they getting that practical information?”
She says there’s no standard for peer support programs across Canada. They can be informal, where families just start talking in waiting rooms or cafeterias; they can be organized as part of cardiac or stroke rehabilitation; they can take place in group sessions, one-on-one, or via technology.
We offer hope for both the patient and the family.
For instance, Heart & Stroke runs two peer support communities on Facebook; one for survivors and one for caregivers.
COVID-19 has made recovery from heart attack and stroke more complex and isolating. Accessible and virtual peer support resources are increasingly important.
How peer support helps
- A lift for your mood
Depression is one of the most common after-effects of a heart attack or a stroke. Studies show that having a poor social support network can put your health further at risk, but connecting with peers can support emotional wellbeing. Lori recalls visiting one woman who was clearly depressed and refusing physiotherapy. After Lori left her bedside, the patient perked up, began embracing her treatment and told the nurses, “I’m going to get better and come back and be a peer supporter like that woman!”
- Reassurance about little things
The first questions patients often ask of Lori are about activities of daily living. “Can you dress and take care of yourself?” “Can you drive?” They want to know about changes they’ll need at home — like bars in the bathroom — and if they’ll be able to work. “I just try to give them personal feedback,” says Lori. “You can’t compare yourself to another patient, but we offer hope for both the patient and the family.”
- Support beyond your healthcare team
Survivors who have a peer for informal support can focus time with their healthcare team on physical and mental recovery. “Peers are a great resource when people want to get back into life. Survivors need guidance and feedback that may not be covered by regular medical teams,” says Jill Cameron. “The healthcare team doesn’t always speak your language.”
- Real-life tools
Jill Cameron says peers can give something called “instrumental support.” That’s practical advice about how to fill out a form and which number to call to get home care. “You have to know the lingo,” she says. Peers can suggest the correct language to get action.
- Healthier habits
Having a peer may help you take better care of your health. A 2018 study found that people with diabetes who had peer support had slightly lower blood pressure than those who did not. Meanwhile, a 2016 study found that people with cardiovascular disease who joined a peer support program intended to promote exercise were more physically active a year later than those who did not join.
- Help for families
Jill Cameron says caregivers may struggle when a loved one has had a cardiovascular event. Peer support can offer them practical tips plus a safe opportunity to vent — and take care of their own wellbeing. “Often they just want a peer to listen when they say, ‘I’m exhausted.’” Caregivers can also safely — and privately — voice their deepest fears to someone who will understand.
Ask your healthcare team what peer support programs are available, or try the links below.