Supporting the Needs of Stroke Caregivers Across the Care Continuum

Interventions to Improve Caregiver Outcomes

In a review of 39 articles representing 32 caregiver and dyad intervention studies, researchers from the AHA made 13 evidence-based recommendations. Recommendations with the highest level of evidence indicated that (1) interventions that combined skill-building with psycho-educational programs were better than psycho-educational interventions alone; (2) interventions that are tailored to the individual are preferred over “one-size-fits-all” interventions; (3) face-to-face interventions are preferred, but telephone interventions can be useful when face-to-face is not feasible; and (4) interventions with 5 to 9 sessions are recommended [65]. In a review of 18 studies, Cheng et al confirmed the recommendation that psychoeducational interventions that focused on skill building improved caregiver well-being and reduced stroke survivor heath care utilization [66].

Studies also recommend that families may need family counseling to help them develop positive coping strategies and adjust to their lives after stroke [66]. Stroke survivors and their families experience grief and loss as they begin to realize how the stroke has changed their relationships, roles, responsibilities, and future plans for their lives (eg, work, retirement). While many inpatient rehabilitation facilities may provide services from a neuro-psychologist to discuss post-stroke changes in the brain and possible behavioral and emotional manifestations, referrals for family counseling to address the impact of stroke on the family and community reintegration are seldom provided [9].

Recent interventions have shown promise in improving stroke caregiver outcomes. For example, Bakas et al. completed a randomized controlled trial of an 8-week, nurse-delivered, Telephone Assessment and Skill-Building Kit (TASK) intervention [67]. Caregivers in the intervention group with moderate to severe depressive symptoms at baseline demonstrated significant improvements in depressive symptoms and life changes at 8, 24, and 52 weeks. The TASK shows promise because it can reach caregivers in rural and urban areas at a relatively low cost [67].

Recognizing the need to improve post-acute care for stroke survivors and their family caregivers, several large funded clinical trials are being tested in the US and globally. For example, the ATTEND Trial in India is testing a home-based, caregiver-led rehabilitation intervention [68]. The Comprehensive Post-Acute Stroke Services (COMPASS) study in North Carolina, is a state-wide pragmatic, randomized controlled trial testing a comprehensive community-based patient-centered post-acute care intervention with stroke survivors and their caregivers (www.nccompass-study.org). Results of these and other studies will continue to identify evidence-based strategies to improve care coordination, quality of care, and post-stroke outcomes for stroke survivors and their caregivers

Recommendations for Clinicians

Based on this review we have identified strategies that clinicians can implement across the care continuum that may help reduce caregiver strain and burden, and improve outcomes for family caregivers and the stroke survivors for whom they provide care. The evidence suggests that caregivers need assistance in building skills, not only in providing the care needed by the stroke survivor but also in solving problems as they arise; navigating the multiple systems of care, including understanding options for post-acute care; accessing community resources; communicating effectively with health care and social support providers; and dealing with the emotional effects of stroke [44,52].

Caregivers need help in navigating the multiple providers and systems of care to get the services the stroke survivor needs as well as to secure support services. They need information from trusted sources about stroke prevention and available community resources. Providinga list of resources is often insufficient, especially in the first few weeks or months post-stroke; these caregivers are already overwhelmed with the enormity of the tasks and responsibilities that they have taken on as a caregiver. Instead they need someone who can advocate for them and connect them with the appropriate resources at the right time.

They also need assistance developing and maintaining self-care strategies so they can sustain the caregiving role long-term. Identifying opportunities for respite and helping them activate informal and formal resources, such as other family members, friends, church groups, neighbors, and services from local senior centers, independent living centers, or area agencies on aging can help them identify assistance with the breadth of duties including care of the stroke survivor, meal preparation, transportation, or a supportive listening ear. It is important for the caregiver, in addition to any other close support person as available, to have a facilitated discussion withthe healthcare team to brainstorm activities where assistance may be provided and who might be approached to help.

The timing of providing support and resources is also critical. Becoming a caregiver is a process and often family members who are new to the role need more intense direct assistance and support when the stroke survivor first comes home, but many may need ongoing support over time. Research suggests it can take caregivers up to 3 years to figure out how to manage the new responsibilities, learn to navigate the multiple systems for careand services, establish confidence in their abilities, deal with the emotional upheaval, and to adapt to their new lives [23].

Research indicates the 44% of stroke patients receive no post-acute care. Clinicians also need to advocate for patients to get the most appropriate level of organized, coordinated, and inter-professional post-acute care [5]. This requires that they understand the different levels of post-acute care, including the criteria for admission, the scope and intensity of nursing, therapy, physician and other services provided in each setting, and the associated clinical outcomes. This knowledge is also necessary to enable clinicians to educate stroke survivors and their caregivers on post-acute care so that they understand the process and can effectively self-advocate for the provision of appropriate services as needed.