By Kristina Kokorelias
Stroke is a leading cause of disability among adults (1). The majority of individuals with stroke return to the community with physical and/or cognitive impairments, and rely on family members to support everyday activities (2). Informal caregivers are an extremely valuable resource, and their support often allows individuals with stroke to remain in their homes, rather than residing in institutionalized care settings (3). Caregivers also play an important role in promoting successful rehabilitation outcomes (2-4).
Unfortunately, existing literature suggests caregivers are at risk for poor mental health outcomes (3). Because of caregiving, many report significant disruptions to their social life, leisure time, and emotional health (2,5). These lifestyle changes are related to fatigue, distress, and decreased quality of life (2,3). Therefore, caregivers are at risk of experiencing high emotional distress (3).
The body of literature discussing stroke caregivers’ mental health has continued to grow. As a result, rehabilitation clinicians and scientists can make clinical recommendations from a vast amount of literature on the factors associated with depression in stroke caregivers.
Factors associated with Depressive Symptoms in Stroke Caregivers
A wide range of factors have been associated with depressive symptoms in stroke caregivers. These include feeling burdened by the caregiving role (6), and interference with valued life activities (7,8) such as volunteering. In addition, caregiver characteristics, such as having a high sense of personal mastery including feeling competent completing care tasks, are associated with fewer depressive symptoms (7-9). However, it is unclear if other factors such as caregivers’ general health status (7), feeling socially supported (10-13), and depression after stroke (14), are significantly associated with caregiver depression. The current evidence base may enable rehabilitation professionals to identify caregivers who are at risk for depression and who may need additional support from our rehabilitation health and social care systems.
Suggestions for Rehabilitation Professionals
Caregiver burden has been identified as a risk factor for caregiver depression (15). Burden is a term broadly used to describe the stress experienced by caregivers as a result of their role. This burden includes psychological, emotional, physical, and sociological results of stress (15). It is recommended that rehabilitation science researchers conduct future research to focus on clearly defined components of burden that most affect caregivers’ levels of depressive symptoms. This research would also help clinicians target specific support interventions for caregivers who experience types of burden (i.e., financial). Moreover, clinicians are also encouraged to educate caregivers on ways to reduce the risk of caregiver burden. Clinicians frequently interact with caregivers during the stroke rehabilitation process. Therefore, clinicians also have a responsibility to recognize and be aware of changes in mood that caregivers experience while caring for their loved one.
Caregiving for an individual with a stroke may cause a disruption in the caregiver’s routine way of living, and can result in significant lifestyle disruptions to the caregiver. Decreased participation in valued activities because of caregiving was found to be a risk factor for caregiver depression (7,8). Caregivers’ limited ability to participate in valued activities can result in emotional distress. This finding has been consistently reported in the literature among cancer (16,17) and dementia caregivers (18). Thus, it is recommended that clinicians support stroke caregivers’ participation in valued activities. This recommendation has important implications for caregivers’ mental health and their capacity to continue providing care to individuals with stroke. For example, it is within the scope of occupational therapy practice to educate caregivers on available community respite services that may allow caregivers the time to participate in valued activities while providing a break from caregiving.
Furthermore, a high sense of personal mastery is associated with lower levels of depressive symptoms in stroke caregivers. Mastery can be described as an individual’s sense of control over difficult caregiving circumstances (19). In the context of stroke caregiving, caregivers with a high sense of mastery may be better able to use a problem-focused approach, which focuses on targeting the causes of stress (20,21), when faced with such challenges.
For example, caregivers with low mastery may ask rehabilitation health care professionals for social support and additional information on stroke rehabilitation to help increase their feelings of mastery. In those who care for people with dementia, a higher degree of personal mastery reduces the effects of depressive symptoms (22). It is plausible stroke caregivers may experience a similar result. By improving mastery and promoting a balanced lifestyle, clinicians can support stroke caregivers and decrease the risk of poor mental health outcomes.
Another way rehabilitation clinicians can improve mastery in caregivers is by encouraging them to work together with the rehabilitation team. This may help the caregiver and clinicians work toward finding realistic solutions that the caregiver can sustain on their own. The cooperation of all members is advantageous to the rehabilitation process for supporting caregivers, and to help improve patient outcomes. For example, including caregivers in the rehabilitation process might help to clarify goals of care aligned with the values of the individual with stroke and their family. Moreover, education should be provided to caregivers through ongoing communication with the rehabilitation team, so that they feel better prepared to care for their loved one at home. For example, physical therapists should adequately educate caregivers in the rehabilitation exercises they want the individual with stroke to perform outside of the clinic, hospital, or skilled nursing facility. Rehabilitation scientists are encouraged to research ways to improve the sense of personal mastery in stroke caregivers.
In conclusion, this article has highlighted some key factors associated with depressive symptoms in caregivers and provided suggestions for how to mitigate these symptoms. Caregivers who experience burden and interference with participation in valued activities, and who have low personal mastery, are more likely to report higher levels of depressive symptoms (7,8). Rehabilitation professionals are encouraged to be educated on these factors so that they may help identify stroke caregivers at risk for poor mental health outcomes. This will also support rehabilitation professionals to allocate health resources efficiently that can help support stroke caregivers. Rehabilitation professionals, including both clinical practitioners and researchers, are in a unique position to help support stroke caregivers’ well-being. By supporting caregiver well-being and potentially reducing the risk of depressive symptoms through suggestions outlined in this article, rehabilitation professionals can assist caregivers in delivering the highest quality care to their family member affected by stroke.
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