Caregivers may ignore their health as they do not have the time or energy to care for themselves
This article by Anna Garnett of Western University. Maureen Markle-Reed of McMaster University and Patricia H Strachan of McMaster University originally appeared in the conversation and are published here with permission.
Stroke is a major cause of disability in Canada. Every year, more than 50,000 Canadians suffer from stroke, of which about 40% live with a lasting impact on stroke health. When a person with a stroke returns home, up to 80-90% of home care is provided by family and friends known as informal caregivers.
Long-term care can be a wonderful and rewarding experience. However, if care continues for months or years, it can become difficult and the caregiver’s own health can begin to be compromised.
To better support caregivers, we sought to understand the considerations they made when choosing to access and use assistive services. In our study, we interviewed stroke caregivers and healthcare providers. This helped me better understand their experience as a caregiver and helped identify what helped or hindered their ability to find and use the right support.
Stroke and brain
A stroke occurs when blood flow to the brain is blocked by a blocked blood vessel or when a blood vessel in the brain tears. As a result, part of the brain is damaged.
In the most severe cases, stroke causes death. In other situations, the impact on human health is different. Some people have mild effects from stroke. For example, weakness and numbness in certain areas of the body quickly return to normal.
However, in moderate to severe strokes, the effects of the stroke can be persistent and even permanent. These effects include depression, anxiety, paralysis, mobility problems such as communication and dysphagia, changes in personality and cognitive abilities, and prolonged malaise.
Life after stroke
People living affected by a stroke after hospital treatment require rehabilitation services provided in inpatient and outpatient facilities. For outpatient rehabilitation, people with a stroke usually live at home and participate in the program 2-5 days a week for at least 8 weeks. Caregivers are often present to support people with stroke and learn about stroke management.
Depending on the needs of the person suffering from the stroke, the caregiver may help with changing clothes and washing, supporting mobility, communication, and many other tasks. Being a caregiver is a big adjustment and can be overwhelming. Over time, caregivers may become accustomed to and rewarding, but caregiving can also have a negative impact on their health.
Our study found that some caregivers experienced depression, especially when they were unable to participate in activities such as socializing with friends or exercising. In some cases, people are uncomfortable or unfamiliar with the effects of a stroke, and their social networks change due to the loss of friendship. Caregivers may ignore their health because they do not have the time or energy to care for themselves.
Programs and barriers
Services are available to assist caregivers and stroke patients. Support programs include home care, caregiver support meetings, community-based day trip programs, and overnight rest. These services provide rehabilitation, exercise, and social involvement for people suffering from stroke, allowing caregivers to move away from their caregiving role or seek help from other caregivers.
These services also allow caregivers to fulfill other responsibilities, such as groceries, attending appointments, socializing, and engaging in physical activity to manage their health. increase. However, many caregivers are unaware of which services exist or cannot use these services.
Some community-based programs are expensive, and people with a stroke may need special transportation that is also expensive. Caregivers may have to quit their jobs, or people with a stroke may be unable to work and lose their income. Over time, costs can be exorbitantly high.
According to our research, caregivers may not be able to leave a person with a stroke alone to join a support group. Caregivers may hesitate to accept support because they do not trust that the person suffering from the stroke will be properly cared for in the absence.
It can be difficult for caregivers to know about the service. This means that many caregivers do not use these services and continue to manage their care responsibilities independently, even if they may benefit from them.
Support caregivers
Better policies and programs are needed to support these caregivers and help maintain their health and well-being. According to our research, existing policies and programs have the following potential improvements:
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Accessible community-based health and social services, including caregiver health and wellness activities that are delivered in conjunction with stroke patient programs, and hybrid caregiver support conferences that provide an online alternative to face-to-face gatherings. Increased availability.
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Support for navigating the healthcare system to identify and access services.
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Increased access to financial assistance for caregivers, including increased subsidies and income tax cuts.
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Healthcare policy changes to emphasize ongoing family-centric care within the community environment. This helps to foster trust between caregivers and healthcare providers, facilitate early detection of caregiver concerns, and provide more opportunities for caregivers to access services.
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Raising funding and availability for community-based healthcare professionals such as social workers, nurses, occupational therapists, physiotherapists, speech therapists, and recreational therapists.
Stroke caregivers provide critical care and support to help people with stroke live at home in the community. More needs to be done to formally recognize and support caregivers in engaging in this important task without sacrificing their health and well-being.
Anna Garnett, Arthur Rabat Family School of Nursing, Associate Professor, Faculty of Western University Health Sciences.Maureen Markle Reed, McMaster University School of Nursing, Professor of Human-Centered Interventions for Elderly People with Multiple Diseases and Their Careers and Chair of the Canadian Research Committee, and Patricia H., Associate Professor of McMaster University.・ Strachan
This article has been republished from Conversation under a Creative Commons license. Please read the original article.
