Peer support and preventing caregiver burnout
By Ruth Kapelus
Strokes are devastating—not just for survivors, but also for their family members, loved ones and caregivers. Yet with the right support, the journey to recovery can be made easier. Stroke Recovery Canada, a program of March of Dimes Canada, offers post-recovery support, education and programs for stroke survivors, their families and health care providers.
Strokes usually occur unexpectedly, and as a result family members are often unprepared to become caregivers. They therefore have extensive needs and are at risk for negative outcomes. Interventions that facilitate coping, problem-solving skills and support can decrease the negative effects of caregiving. Family and friend caregivers are subject to specific economic, social and health stresses,such as:
• increased out-of-pocket expenses, lost wages and changes to pension entitlements
• marginalization, isolation, loneliness and an identity change within the community
• mental health disturbances, including anxiety and depression
• physical injuries, such as back and neck conditions
Coinciding with the needs of new stroke sufferers and caregivers are studies and firsthand accounts that demonstrate how support from fellow stroke survivors can help with regaining independence and confidence. Stroke Recovery Canada connects survivors and their caregivers with a network of support that can help them reclaim their independence, find sense of community and thrive. Of particular importance is peer support.
Lived experience is key
Peer support provides emotional and practical encouragement in a safe environment. Survivors can share their knowledge and experiences, and hopes and concerns—without judgment. In addition, many peer-support groups include a crucial caregiver component. Survivors and their caregivers will often divide into two different rooms, providing a safe space for everyone to discuss their challenges and fears, and to learn from one another. Stroke survivors can provide emotional and practical support not only to other survivors, but also to those who care for them. This helps families to understand that they are not alone. At a group meeting, people come together as equals to offer one another guidance and encouragement on a reciprocal basis. The benefits of support groups include improved psychosocial and relational functioning, community development, chronic disease management and prevention, and understanding of effective coping strategies.
Surviving and thriving
Peer-support groups will emphasize the importance of caregivers taking regular and meaningful breaks from their duties. This prevents burnout and helps caregivers to “recharge their batteries,” allowing them to regain enough energy to continue providing quality care for their loved ones. Through the Stroke Recovery Canada program, survivors and caregivers can:
• Talk to a fellow survivor or be connected to a support group
• Learn more about stroke, stroke symptoms and stroke recovery
• Find stroke-recovery resources in their area
• Find support for fellow caregivers and family members
Help for families
In Ontario, March of Dimes Canada also has a Recreation and Integration Services Program that provides day and overnight trips for people with disabilities, including stroke survivors. Family members can enjoy excursions either together or singly, knowing that their loved ones are being well taken care of in a warm, professional and safe environment, and allowing caregivers a much-needed break. This will translate into a more relaxed and happy home.
10 Important messages for survivors
1) Partner with your caregiver for daily exercise
2) Eat well—proper nutrition can speed up stroke recovery.
3) Plan low-sodium meals.
4) Continue with your physical therapy. Ask for specific priorities and ongoing refinements, and make sure you are using the proper techniques for strengthening limbs and practicing daily tasks.
5) Ask your physician about treatments to reduce spasticity. These might include physical therapy, oral medications, Botox injections and the baclofen pump.
6) Work with an occupational therapist to help to improve your functional status. Address more complex activities by breaking them down into manageable tasks.
7) Talk to your physician if you experience depression for more than two weeks. Depression can be directly related to damage to your brain, and can also be caused by some prescription and over-the-counter medications.
8) Talk to your partner about sex. There are rarely medical reasons as to why stroke survivors can’t become sexually active again, but interest might be lost because of medication-related decreased libido, spasticity, fatigue or an altered appearance. Keep an open mind and consider other forms of lovemaking.
9) Slow down and work in partnership with your caregiver. Surprisingly, you might just start noticing and appreciating things you had simply missed before in the bustle of daily life.
10) Don’t rush things. Stroke recovery is a journey that can take years, but teamwork, a positive attitude and actively pursuing rehabilitation can make all the difference.
Contact Stroke Recovery Canada to find a local support group. You can also request a free information pack or subscription to The Phoenix, a newsletter for stroke survivors and their caregivers. Visit www.marchofdimes.ca or call 1-800-263-3463.
Ruth Kapelus works for March of Dimes Canada.