Clinical Review

Supporting the Needs of Stroke Caregivers Across the Care Continuum

Journal of Clinical Outcomes Management. 2016 December;23(12)

References

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Caregivers have described unmet needs in many domains including skills training, communicating with providers, resource identification and activation, finances, respite, and emotional support [35,44,48,51,52]. Bakas et al found that in the first 6 months post-discharge, stroke caregivers had needs and concerns related to information, emotions and behaviors, physical care, instrumental care, and personal responses to caregiving [48], and that their information needs change during the course of the patient’s recovery [53]. In a study by Lutz et al [44], caregivers identified multiple areas where they felt they were unprepared to assume the caregiving role post-discharge. These included identifying and activating resources; making home and transportation modifications to improve accessibility; developing skills in providing physical care and therapies; managing medications and behavioral issues; preventing falls; coordinating care across settings; attending to other family responsibilities; and caring for themselves.

In a study of interactions between rehabilitation providers and stroke caregivers, Creasy et al [52] noted that caregivers have needs, which were often not recognized, in the following areas: information; providing emotional support for the stroke survivor and having their own emotional support needs met; being involved in treatment decisions; and being adequately prepared for discharge home. Caregivers’ interaction styles with providers, which ranged from passive to active/directing, affected their abilities to have their needs recognized and addressed. These findings highlight the importance of recognizing the caregiver’s interaction style and tailoring communication strategies accordingly.

Cameron et al [54] noted that caregiver support needs change over time, with needs being highest during the inpatient phase as they prepare for discharge home. Moreover, caregivers who are providing care for stroke survivors with more severe functional limitations need more support over a longer period of time. Recognizing the needs of stroke caregivers, the 2016 Canadian Stroke Best Practice Recommendations on Managing Transitions of Care Following Stroke includes recommendations related to assessing, educating, and supporting stroke family caregivers [55].

Assessing Caregiver Readiness and Related Outcomes

A major contributing factor to poorer caregiver outcomes is inadequate preparation for the caregiving role. Several authors have identified specific assessment domains that must be considered when evaluating caregivers. The Family Caregiver Alliance Caregivers Count Too! Toolkit (www.caregiver.org/caregivers-count-too-toolkit) includes 7 assessment domains [56]. These domains are similar to those included in the Nursing Standard of Practice Protocol: Family Caregiving by the Hartford Institute for Geriatric Nursing [57] ( Table 2 ).

Young et al [58] recommend specific domains for a comprehensive readiness assessment of stroke family caregivers. Caregiver domains include strength of the caregiver/care recipient relationship; caregiver willingness to provide care; pre-existing health conditions, previous responsibilities, caregiving experience, home and transportation accessibility, available resources, emotional response to the stroke, and ability to sustain the caregiving role. This type of readiness assessment should be completed early in the care trajectory, while the stroke survivor is receiving inpatient care, so that care plans can be tailored to address gaps in caregiver preparation prior to discharge. It is especially important for new caregivers and those caring for stroke survivors with significant functional limitations [44]. Currently there are no tools designed to assess a family member’s readiness to assume the caregiver role.