Education and Support Interventions for Caregivers of Persons With Stroke (January 1,1999–December 31,2019)

Full Systematic Review Question

This systematic review addressed the following question: “What is the evidence for the effectiveness of interventions within the scope of occupational therapy practice for caregivers of people who have had a stroke that facilitate maintaining participation in the caregiver role?”

Current Theme Reported

The main theme of the articles included in this systematic review brief is caregiver education and support interventions.

Clinical Scenario

Caregivers of people who have had a stroke often experience negative effects of caregiving in the areas of employment, finances, and physical and emotional health (Collinson & De La Torre, 2017; Loh et al., 2017; National Academies of Sciences, Engineering, and Medicine, 2016; National Alliance for Caregiving & AARP Public Policy Institute, 2015). When the caregiver experiences negative effects, then the person who has had a stroke also experiences negative effects, such as greater incidence of institutionalization, more frequent and longer hospital stays, and poorer outcomes (Bakas et al., 2014). Caregivers of those who have had a stroke identify a need for information and education about stroke and the resulting impairments (Hafsteinsdóttir et al., 2011). Occupational therapy practitioners report routinely providing caregiver training and education in activities of daily living, transfers and mobility, rehabilitation techniques, stroke education, community resources, cognitive strategies, and problem-solving skills (Lawson et al., 2015). Moreover, stroke guidelines recommend that the caregiver receive education, training, and counseling to mitigate the negative effects of caregiving (Winstein et al., 2016). The systematic review theme presented here addresses interventions that use both education and psychosocial support or psychosocial support only for caregivers of people who have had a stroke to determine whether these interventions improve caregiver outcomes such as depression, anxiety, burden, knowledge, and self-efficacy.

Summary of Key Findings

Six Level 1b randomized controlled trials reported in 7 articles met the inclusion criteria (Table 1). Their risk of bias ranged from low to high. The levels of evidence used in this review are from Oxford Centre for Evidence-Based Medicine (2009). These articles assess the use of caregiver psychosocial support interventions in combination with caregiver education and training about caregiving and stroke. An additional 2 Level 2b studies examined the use of psychosocial support without a stroke or caregiving education component. These studies are further synthesized and divided into subthemes.

Bottom Line for Occupational Therapy Practice

Caregivers of people who have had a stroke report that they need emotional and psychological support across the continuum of care, even months after the stroke (Hafsteinsdóttir et al., 2011). Caregiver support has been deemed a critical service (Cameron & Gignac, 2008), and some occupational therapy practitioners are providing interventions to address caregiver support needs (Lawson et al., 2015).

The strongest evidence supports use of a family support organizer (FSO) to provide interventions that benefit caregivers of people with stroke. However, the intensive nature of employing or serving as an FSO may prohibit implementation for many occupational therapy practitioners. Therefore, occupational therapy practitioners should consider implementing the underlying principles of FSOs, including the delivery of individualized support and education over a long period of time (≥12 mo) via multiple remote and in-person methods.

When providing social and psychological support interventions for caregivers, occupational therapy practitioners should consider using individual interventions instead of group interventions, given that individual interventions show more promise to improve caregiver knowledge, health status, and quality of life, among other outcomes. In addition, interventions that include home visits have stronger evidence than interventions that do not include home visits, indicating that the inclusion of home visits in interventions targeting caregiver support and education is likely beneficial.

Group delivery of support is likely more time- and cost-efficient than individual service delivery. If practitioners do choose to deliver group psychosocial support, there is a higher level of support for a telephone-based support and education group than for in-person delivery of group support. This model of delivery might be preferred because of the convenience and ease of access to groups delivered remotely for caregivers with caregiving responsibilities in the home. If occupational therapists deliver support and educational groups, they may consider offering them remotely to facilitate improved outcomes for caregivers.

There is limited evidence for the use of progressive muscle relaxation or modified reminiscence therapy alone to address caregivers’ needs. Practitioners should evaluate the existing evidence for other potential interventions or consider combining these interventions with other techniques that have higher strength of evidence.