8. Supporting Individuals with Stroke, Family and Caregivers During Stroke Rehabilitation

Stroke is a life-altering event, which impacts the lives of family members and informal caregivers, who may be expected to assume roles, tasks and responsibilities beyond their current capabilities. Stroke often brings profound changes to daily life, and caregivers frequently assume demanding roles that can lead to physical, emotional, and financial strain. Without adequate support, caregivers may experience burnout, depression, or anxiety, which can negatively affect the care they provide and their own health. This increases the caregiver burden, which can result in depression among caregivers of individuals with stroke (as high as 60 percent has been reported). Families may also struggle with adjusting to new caregiving responsibilities, navigating healthcare systems, and understanding the long-term needs of the stroke survivor. Providing education, and access to support groups can help alleviate these burdens, while also fostering better communication between caregivers, healthcare professionals, the individual with stroke, their family and caregivers. 

These recommendations support the following goals: to emphasize the need for a wholistic approach to care; to help individuals with stroke, families and caregivers to navigate the healthcare system, particularly following the initial acute stage of stroke care; to define the various components of support; to focus on individuals with stroke and their families, highlighting the person with stroke and family-centred care approach; and to address needs beyond the physical impact of stroke. Increased screening, assessment and surveillance of individual with stroke, family and caregiver needs and coping will provide a wholistic person- and family-centred approach to stroke care and optimally lead to better outcomes and adaptation.

Individuals with stroke have emphasized that stroke rehabilitation and recovery is a continuum, in which resource and support needs change overtime. They stressed the importance of psychosocial support for individuals with stroke, their family and caregivers across the continuum of care. They also highlighted that additional support may be required for those who do not have support systems at home. Support for caregivers is also highlighted as an important component along with peer support. Receiving information on community-based services, resources and supports should be tailored to the needs of the individual and help build capacity for self-advocacy when required, and follow-ups with healthcare teams following discharge. 

System indicators:

1. Availability of community-based support programs and services for individuals with stroke and their family.
2. Availability of community-based respite programs and services.
3. Proportion of individuals with stroke with a follow-up visit by a primary care provider in the first year following a hospital admission for stroke (acute and/or rehabilitation).

Process indicators:

4. The number and proportion of individuals with stroke diagnosed with post-stroke depression, measured at each transition point as a proportion of all individuals with stroke.

Patient-oriented indicators:   

5. The change in burden of care for family members and caregivers measured at transition points throughout the recovery period and following changes in individual with stroke health status.
6. The number and frequency of individuals with stroke readmitted to an emergency department or acute inpatient care for reasons related to physical decline or failure to cope, following an initial stroke acute and or rehabilitation hospital stay.

Resources and tools listed below that are external to Heart & Stroke and the Canadian Stroke Best Practice Recommendations may be useful resources for stroke care. However, their inclusion is not an actual or implied endorsement by the Canadian Stroke Best Practices or Heart & Stroke. The reader is encouraged to review these resources and tools critically and implement them into practice at their discretion.

Healthcare Provider Information

• CSBPR Stroke Rehabilitation Planning for Optimal Care Delivery Module: Box 8 Supporting Successful Transitions of Care Checklist
• Canadian Stroke Best Practice Recommendations: Rehabilitation, Recovery and Community Participation following Stroke, Part Two: Delivery of Stroke Rehabilitation to Optimize Functional Recovery; and, Part Three: Optimizing Activity and Community Participation following Stroke, Update 2025
• Heart & Stroke: Taking Action for Optimal Community and Long-Term Stroke Care: A resource for healthcare providers
• NCBI: “Timing it Right”: a conceptual framework for addressing the support needs of family caregivers to stroke survivors from the hospital to the home (Cameron & Gignac, 2008)
• RNAO: Transitions in Care and Services Best Practice Guideline
• RNAO: Person and Family-Centred Care Best Practice Guideline

Resources for Individuals with Stroke, Families and Caregivers

• Heart & Stroke: Signs of Stroke
• Heart & Stroke: FAST Signs of Stroke…what are the other signs?
• Heart & Stroke: Your Stroke Journey
• Heart & Stroke: Post-Stroke Checklist
• Heart & Stroke: Rehabilitation and Recovery Infographic
• Heart & Stroke: Transitions and Community Participation Infographic
• Heart & Stroke: Enabling Self Management Following Stroke Checklist
• Heart & Stroke: Virtual Healthcare Checklist
• Heart & Stroke: Recovery and Support
• Heart & Stroke: Online and Peer Support
• Heart & Stroke: Services and Resources Directory
• CanStroke Recovery Trials: Tools and Resources
• American Stroke Association
• World Stroke Organization
• Stroke Engine

Evidence Table and Reference List

Following stroke, individuals with stroke, families and informal caregivers are typically faced with multiple life changes and challenges as the individual with stroke transitions between the stages of recovery. Gallacher et al. ⁸⁴ reviewed 69 qualitative studies examining the concept of burden following stroke, highlighting the impact it may have on the effectiveness of interventions and individual with stroke satisfaction with health care services. The authors identified the components of stroke recovery that were particularly burdensome to patients including receiving information, interacting with others, comparing treatment options, managing in different environments (acute care, inpatient rehabilitation, community, society) and adjusting to daily activities. Caring for a person following a stroke may also have a considerable impact of the health and vocational status of caregivers. Caregivers reported spending significantly longer periods of time providing caring for stroke survivors, relative to pre-stroke levels. ⁸⁵ Depression and anxiety may also be increased.  Loh et al. ⁸⁶ estimated the prevalence of depressive symptoms and anxiety among stroke caregivers to be 40.2% and 21.4%, respectively. Hayes et al. ⁸⁷ conducted telephone interviews with 275 veterans who had sustained a first-ever stroke and their informal caregivers to explore the association between caregiver characteristics and the development of injuries.  Caregivers who reported a physical injury were more likely to report higher levels of burden, provided more hours of care per week, exhibited more depressive symptoms and fewer healthy days per month compared to carers reporting no injury. The most common type of injury reported was a back injury and 53% of injured carers stated that the injury interfered with their ability to provide care. Significant predictors of injury were higher caregiver burden (odds ratio [OR]=1.62, 95% CI 1.14-2.31, p=0.008) and depression (OR=1.10, 95% CI 1.04-1.17, p=0.001). Ko et al. ⁸⁸ interviewed 132 caregivers and reported that while 52% were working full time or part-time, prior to the stroke, the majority of working caregivers reported reducing their hours of paid work, or missing work, while 9 caregivers retired or resigned. Rochette et al. ⁸⁹ reported that 6 months following stroke, 35.2% of spouses, of a sample of 54 had a high level of burden (Caregiver Strain Index score ≥7) and 17% were identified with possible depression (Beck Depression Inventory [BDI] score ≥10). 

The needs of individuals with stroke and their informal caregivers have been explored in several qualitative studies using in-person or telephone interviews. Similar themes emerged across studies. Cameron et al. ⁹⁰ included 16 patients recruited from an inpatient rehabilitation stroke facility and 15 informal caregivers, who were interviewed following their first weekend pass from inpatient rehabilitation and again 4 weeks following discharge home. Twenty health-care professionals (HCP) were also interviewed. Three key themes emerged including issues surrounding preparing patients for safe return home. Individuals with stroke discussed the need to feel safe in the home environment while caregivers discussed their need to feel supported. Assessing the individual with stroke for readiness was a key theme discuss by HCPs.  Individuals with stroke noted gaining insight into what life would be like, and caregiver evaluated their abilities to care for stroke survivor. Individuals with stroke and caregivers discussed the range of emotions they experienced and how their experienced changes before and after the weekend pass. In a similar study, ⁹¹ including 24 informal caregivers to stroke survivors and 14 HCP, the themes that emerged from both the caregivers and the HCP concerned the type and intensity of support needed, who provides support and the method of providing support and the primary focus of care, which varied across the care continuum (i.e., as survivor transitioned from inpatient rehabilitation through community care).

Creasy et al.⁹² interviewed 17 family caregivers close to the point of discharge from hospital and the again within 4 months of discharge. In the first interview, caregivers expressed information needs related to their role as caregiver in preparation for discharge home and expressed concerns for their own emotional support needs and their ability to provide emotional support. During the second interview caregivers discussed their experiences with caregiver-provider interactions, some of which were positive, others, negative. The caregivers of 90 patients were interviewed one year following stroke. ⁹³ Caregivers reported delays and barriers waiting for applications/funding for alterations to make the home more accessible, having to provide care in the immediate post-discharge period with no skills training and lack of follow-up with GPs. They also described difficulties coping with patients’ quick anger and emotional lability and lack of attention to their physical and emotional ability to provide care. Semi-structured interviews (conducted by Zoom) were used to explore the experiences of 19 young stroke survivors (aged 18 to 55 years) during their recovery.⁹⁴ Four themes emerged; (1) the need for longitudinal medical follow-up and information provision; (2) the need for psychological/psychiatric care; (3) the need to adapt community supports and resources to young survivors; and (4) the need to centralize and integrate community stroke services and resources.

Interventions to provide support to individuals with stroke, family and caregiver were examined in a systematic review, which included the results from 18 studies of caregivers of individuals recovering from stroke or individual with stroke/caregiver dyads.⁹⁵ Participants were recruited from acute hospitalization and from the community. Most caregivers were spouses. The interventions included elements of skills building, psychoeducation and support and were provided mainly face-to-face (group or individual) with some telephone and web-based elements. In studies that recruited family members, both individuals with stroke and family members in the intervention group experienced significantly greater improvements in measures of depression, anxiety and quality of life. In studies that included individuals with stroke/caregiver dyads, there was significantly greater improvement in one or more of the outcomes, including life satisfaction. Anxiety and depression were also decreased significantly in another systematic review ⁹⁶ that included 16 trials composed of stroke survivor/caregiver dyads discharged home from rehabilitation hospitals. Intervention in these trials included a written guide for stroke survivors, and/or video training, group discussions and face-to-face consultations, which were implemented in a hospital setting. Trials also included telephone support after discharge, an educational intervention and support with home visits or telephone support following discharge.

Sex & Gender Considerations

Sex and gender differences significantly shape how family members provide support for individuals with stroke post stroke, often reflecting traditional caregiving roles and societal expectations. Women, particularly daughters or spouses, are more likely to assume caregiving responsibilities, with many stepping into this role due to social norms that associate women with caregiving duties. This can lead to women experiencing higher levels of physical and emotional strain, as they balance caregiving with other responsibilities such as work and managing family life. In contrast, men are less likely to take on caregiving roles, and when they do, they may face challenges in navigating the emotional and physical aspects of care, as societal expectations often discourage them from expressing vulnerability or seeking help. As a result, men may struggle with recognizing the emotional and psychological needs of the stroke survivor, or they may underreport their own stress or exhaustion. These gendered patterns can influence the quality of care and the well-being of both the stroke survivor and the caregiver. Tailored support that acknowledges these gender differences—such as providing additional emotional resources for women caregivers or encouraging men to engage more actively in caregiving tasks—can help alleviate the strain on family members and improve the overall care environment.