Supporting the Needs of Stroke Caregivers Across the Care Continuum
Approximately 45% of stroke survivors in the US are discharged either to an inpatient rehabilitation facility or SNF for rehabilitation [4]. Patients discharged to an inpatient rehabilitation facility receive a minimum of 3 hours of therapy per day and are cared for 24 hours/day by a staff led by registered nurses (RNs) with rehabilitation expertise. SNFs do not have minimum requirements for hours of therapy, 24-hour RN staffing, nor a requirement for nurses with specialty training in rehabilitation. Pressure to reduce the length of stay in acute care often results in providers transitioning stroke survivors to the post-acute care setting that accepts the patient first. Because SNFs have fewer criteria for admission, they are more likely to rapidly accept a patient for care when compared to an inpatient rehabilitation facility. Providers must determine and make recommendations for the most appropriate level of post-acute care to ensure the stroke patients’ rehabilitation needs can be met in the recommended setting [5,69]. It is also essential that family caregivers have the knowledge and skills to advocate for the appropriate level of post-acute care based on the stroke survivor’s expected recovery trajectory. Research has demonstrated that that stroke survivors admitted to an inpatient rehabilitation facility, when compared to similar patients in a SNF, have better outcomes, including improved function [70] and lower re-hospitalization and death rates [71,72]. The Association of Rehabilitation Nurses provides resources for health care professionals and patients regarding rehabilitation. For more information for professionals about levels of post-acute care, see www.rehabnurse.org/uploads/files/healthpolicy/ARN_Care_Transitions_White_Paper_Journal_Copy_FINAL.pdf [73]. For information for patients and caregivers, see www.restartrecovery.org.
Providers must also be knowledgeable about community resources in order to provide connections to services and agencies that are relevant to the changing needs of the caregiver over time. Initially, caregivers may need assistance in meeting the stroke survivor’s BADL/IADL, and later needs may expand to include support groups, respite, and opportunities for a greater community engagement.
Training in time management provides room in the busy caregiving schedule for self-care for the caregiver. Providers must assist with determining routines that meet the needs of both the caregiver and stroke survivor, as the health of each is dependent on the other. Assistance in developing a wellness program that is feasible for the caregiver to maintain will improve adoption of health promoting practices.
As discussed above, the needs of both the stroke survivor and caregiver vary along the post-stroke trajectory. Therefore, both caregivers and stroke survivors should be assessed intermittently over time: caregivers for evidence of effective coping strategies and confidence in the sustaining the caregiving role, and stroke survivors for improvement in their functional abilities and compensatory strategies in BADL/IADL. The opportunity for the stroke survivor to assume household tasks that decrease the caregiver burden, in addition to providing a greater sense of purpose for the stroke survivor, must be explored. For example, the stroke survivor may be able to assist with activities such as meal planning and components of meal preparation or light housekeeping utilizing adaptive devices as needed.
Additional research is necessary to understand how the needs of caregivers change over time, the appropriate timing of reassessment, and the evaluation of interventions to facilitate the transition into this role, while preventing the adverse effects of caregiving on the health of the caregiver and stroke survivor during this transition period.
Conclusion
There is clear evidence that stroke caregiving can have detrimental effects on the physical, mental, and emotional health of caregivers, and that these effects are sustained over time. Evidence also indicates that caregivers who are not well-prepared to assume the caregiving role are more likely to experience negative outcomes. Studies suggest that the time of transition from inpatient care to home is a time of crisis for caregivers and that their support needs are high during this time. However, research also indicates that while needs may change over time, caregivers need ongoing support, especially if they are providing care for a stroke survivor who has moderate to severe physical, cognitive, and/or communication limitations.
In order to better understand the needs of stroke caregivers, a pre-discharge assessment of their readiness to provide care should be conducted so that interventions can be tailored to address their needs to minimize negative effects of a poorly planned transition [69]. Currently, there are assessment tools that can be used with caregivers post-discharge to assess their self-reported needs (after they have an understanding of the role) and caregiving outcomes. Research is needed to develop a valid and reliable tool thatpre-emptively assesses the gaps in caregiver readiness that can be utilized prior to the transition from the institutional setting to home. This will enable the identification and evaluation of primary prevention strategies to improve caregiver preparation so that the adaption to the new caregiving role can be expedited, minimizing the adverse health effects on both the caregiver and stroke survivor.
Providers must be aware of the changing needs of stroke survivors and tailor plans of care accordingly, using evidenced-based interventions. Policy makers must consider research on the long term effects of caregiving and consider legislation to support the health and respite needs of the growing population of caregivers. This will contribute to attaining the 3 aims of the National Quality Strategy: improving quality of care, improving health, and reducing health care system costs [74].
Corresponding author: Barbara J. Lutz, PhD, 601 S. College Rd., Wilmington, NC 28403, lutzb@uncw.edu.
Financial disclosures: None.
