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Commentary: Problems of New Caregivers of Persons with Stroke
Rehabilitation Nursing Editorial Board Member
The article by Dr. Pierce and colleagues offers initial evidence from qualitative data about the perceived problems of new caregivers of persons with stroke who live a distance from urban areas and services often offered in these areas. The three most commonly reported problems were related to addressing independence issues, emotions, and living with physical limitations. These are particularly important in light of emerging evidence and our better understanding of neuroplasticity and new intensive neurotherapeutic treatments. These new approaches are focused on helping persons with stroke regain independence and overcome physical limitations when possible. These new therapeutic approaches often involve intensive task practice to regain function. Although these approaches may help persons with stroke be more independent, the intensive approaches present another challenge for new caregivers to balance. In certain rural settings, persons with stroke, even if able to participate, may not have access to these new rehabilitative approaches.
Many of the problems caregivers identified in this study are similar to those identified in other studies. The caregiver’s goal of promoting a return to normalcy is certainly a universal phenomenon. This may be particularly true when care recipients are high functioning as most were in this study. As the authors point out, stroke is a sudden event with improvement often occurring within the early months post stroke. The uncertainty of how much recovery is possible linked with the expectation that if care recipients work hard they will get maximum results may create unrealistic expectations. This may be especially true when physical function improves, but there are persisting emotional and behavioral changes that may not improve at the same pace of physical recovery.
The caregivers in this study identified the stroke as the reason for the resulting problems with little attribution to care recipients’ co-morbidities. As the authors point out, the stroke is often blamed even when other comorbidities may affect care recipients’ recovery. For example, persons with stroke and heart failure may experience fatigue associated with the heart failure that interferes with their ability to take part in physical therapy activities. Post stroke depression is a separate treatable illness; however, caregivers may not discuss care recipients’ depressive symptoms with their healthcare provider if caregivers perceive these symptoms to be part of the stroke. Moreover, post-stroke depression may influence all aspects of stroke recovery.
The problems caregivers identified are not unique to those individuals in a rural setting, particularly those problems that were associated with promoting normalcy. These problems were “independence issues” and “balancing it all”; however, in more rural settings access to expertise to help address these problems might be less available. For example, addressing emotions was listed as one of the common problems and access to neuropsychologist or psychiatrists who may have expertise in treating persons post stroke or with multiple co-morbidities may be limited. As the authors point out, addressing the emotions and behaviors as a common problem was also identified by Bakas, Austin, Okonkwo, Lewis, and Chadwick (2002) and in our own work (Clark, Dunbar, Aycock, Courtney, & Wolf, 2006). The focus of stroke recovery still remains largely on the physical recovery, and the emotions or behaviors of persons with stroke receive little attention. Therefore, caregivers are not well prepared to respond to these changes when trying to manage at home.
Dr. Pierce and colleagues are to be commended for testing a Web-based intervention (reported in previous articles) and making an in-depth examination of problems perceived by new caregivers in this current article. Identification of the challenges faced by persons with stroke and their caregivers will aid us in designing future interventions. Scientists working to develop these interventions need to be clear that the design of these interventions will require interdisciplinary cooperation to create effective interventions that fully address the physical and emotional recovery needs of persons with stroke without creating additional stress for caregivers—interventions designed to improve outcomes for both will be even more effective.
Bakas, T., Austin, J. K., Okonkwo, K. F., Lewis, R. R., & Chadwick, L. (2002). Needs, concerns, strategies, and advice of stroke caregivers the first 6 months after discharge. Journal of Neuroscience Nursing, 34(5), 242–251.
Clark, P. C., Dunbar, S. B., Aycock, D. M., Courtney, E., & Wolf, S. L. (2006). Caregiver perspectives of memory and behavior changes in stroke survivors. Rehabilitation Nursing, 31, 26–32.