6. Support for Individuals with Stroke, Their Family and Caregivers

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 individual with stroke (as high as 60% has been reported). Families may also struggle with adjusting to new caregiving responsibilities, navigating healthcare systems, and understanding the long-term needs of the individuals with stroke. Providing education, and access to support groups can help alleviate these burdens, while also fostering better communication between caregivers, healthcare professionals, and the patient. 

Individuals with lived experience of stroke emphasize that stroke recovery is a continuum in which resource and support needs change over time. They stress the importance of having the right support in place to promote safety, participation, and well-being throughout recovery and particularly when transitioning back to the community. Understanding the environment that the individual is returning home to, and what support is available or missing, is seen as essential. Mismatches between available support and actual needs can lead to safety risks or reduced participation. Individuals stress the value of being asked directly about their needs and goals, and caution against a one-size-fits-all approach to support. They highlight the need for education and support not only for themselves, but also for family, friends, and caregivers. Peer support is seen as a particularly meaningful source of support, offering encouragement, shared understanding, and practical insights that help individuals feel less alone and more hopeful. 

Mental health support is described as just as important as physical recovery yet sometimes overlooked. Individuals note that challenges with mental health can affect every other aspect of recovery, including motivation, participation, and relationships. Accessing psychological support can be difficult, especially without guidance or resources, and individuals often feel left to navigate this on their own. They emphasize that for those who experience stroke at a younger age or during complex life stages, mental health support is critical as they work to re-establish roles and responsibilities. Individuals express a need for mental health services that are accessible, proactive, and integrated into stroke care.

Healthcare providers are encouraged to work collaboratively with the individual with stroke, family and caregivers to identify support that reflects their life stage, personal context and that support is culturally appropriate and relevant. They call for healthcare providers to play an active role in connecting them, and their support networks, to appropriate resources.

Care transitions take place across the stroke continuum, including primary care, the emergency department, acute care, rehabilitation settings, complex continuing care/transitional bed settings, long-term care and community settings. Processes and mechanisms should be in place in all these settings to address individuals with stroke, family and caregiver support using an individual approach, including:

1. Protocols to involve individuals with stroke and families in healthcare team transition planning meetings and collaborative decision-making regarding goal setting at all transition points.
2. Resources and mechanisms to plan and deliver community-based services which consider the needs of the individual with stroke and family/caregiver (e.g., home care services, psychological support).
3. Models of care that include technology such as virtual care, regular telephone follow-up and web-based support.
4. Appropriately resourced hospitals, rehabilitation facilities, home care services, long-term care and other community facilities that care for individuals with stroke, with identified contact people and case managers/system navigators to coordinate manage stroke care transitions. 
5. Ongoing education and training of healthcare professionals on person- and family-centred stroke care in all settings that care for individuals with stroke.
6. Ongoing support in the form of community programs, respite care, and educational opportunities available to support caregivers who are balancing personal needs with caregiving responsibilities.
7. Processes in place to determine the fit between level of support that an individual has in the community and the level of support that the individual needs to work towards their goals, so that service can be matched to their needs.
8. Opportunities for education and training for individuals with stroke, families and caregivers to provide peer support when requested.
9. Access to self-management support services through virtual care technologies, especially in rural areas and where there are local resource gaps.

System indicators

1. Proportion of stroke programs that provide transitional supports, including community stroke navigator programs, peer support groups, and ongoing recovery supports.
2. Proportion of organizations using standardized, evidence-based care pathways for stroke care.

Process indicators

1. Proportion of individuals with stroke with a documented discharge plan that includes referrals to community-based support or rehabilitation services before hospital discharge.
2. 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 hospital stay.

Person-oriented outcome and experience indicators

1. Proportion of individuals with stroke who report confidence in managing their recovery.
2. Proportion of individuals with stroke who have access to peer-support programs in hospital, and community -based programs following discharge.
3. Percentage of individuals with stroke readmitted to hospital within 30 days of discharge.
4. 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.
5. Proportion of individuals with stroke with access to community stroke navigator programs, peer support groups, and ongoing recovery supports.
6. Changes in quality of life measured at regular intervals using a validated measure during recovery and participation, and reassessed when changes in health status or other life events occur (e.g., at 60, 90- and 180-days following stroke).

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

• Canadian Stroke Best Practice Recommendations: Stroke Systems of Care Module: Box 6 Support for Individuals with Stroke, Their Family and Caregivers Checklist
• Canadian Stroke Best Practice Recommendations: Rehabilitation, Recovery and Community Participation following Stroke, Part One: Rehabilitation Planning for Optimal Care Delivery
• 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 individuals with strokes from the hospital to the home (Cameron & Gignac, 2008)
• RNAO: Transitions in Care and Services Best Practice Guideline
• RNAO: People-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: 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 6

Following stroke, patients, families and informal caregivers are typically faced with multiple life changes and challenges as the patient transitions between the stages of recovery. Gallacher et al. ¹³² reviewed 69 qualitative studies examining the concept of patient burden following stroke, highlighting the impact it may have on the effectiveness of interventions and patient 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 on the health and vocational status of caregivers. Caregivers reported spending significantly longer periods of time providing caring for individuals with strokes, relative to pre-stroke levels. ¹³³ Depression and anxiety may also be increased. Loh et al.¹³⁴ estimated the prevalence of depressive symptoms and anxiety among stroke caregivers to be 40.2% and 21.4%, respectively. Hayes et al. ¹³⁵ 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 (OR=1.62, 95% CI 1.14-2.31) and depression (OR=1.10, 95% CI 1.04-1.17). Ko et al.¹³⁶ 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. ¹³⁷ reported that 6 months following stroke, 35.2% of spouses (19/54) 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 patients and their informal caregivers has been explored in several qualitative studies using in-person or telephone interviews. Similar themes emerged across studies. Cameron et al. ¹³⁸ 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. Patients discussed the need to feel safe in the home environment while caregivers discussed their need to feel supported. Assessing the patient for readiness was a key theme discussed by HCPs. Patients noted gaining insight into what life would be like, and caregivers evaluated their abilities to care for stroke survivor. Patients and caregivers discussed the range of emotions they experienced and how their experienced changes before and after the weekend pass. In a similar study including 24 informal caregivers to individuals with stroke and 14 HCP, ¹³⁹ the themes emerged from both the caregivers and the HCP concerned the type and intensity of support needed, who was to provide support and the method of providing support and the primary focus of care. Creasy et al.¹⁴⁰ 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. ¹⁴¹ 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 individuals with stroke (aged 18 to 55 years) during their recovery. ¹⁴² 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 patients, family and caregiver were examined in a systematic review, which included the results from 18 studies of caregivers of patients recovering from stroke or patient/caregiver dyads.¹⁴³ 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 patients and family members in the intervention group experienced significantly greater improvements in measures of depression, anxiety and quality of life. In studies that included patient/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 ¹⁴⁴ that included 16 trials composed of stroke survivor/caregiver dyads discharged home from rehabilitation hospitals. Intervention in these trials included a written guide for individuals with stroke, 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

There are distinct sex and gender differences in post-stroke informal caregiving. Women caregivers often provide more extensive day-to-day assistance and report higher caregiver burden than men, particularly when caring for individual with stroke with greater disability. ¹⁴⁵ In contrast, men may be less likely to take on caregiving roles, and when they do, they may face challenges in navigating the emotional and physical aspects of care. Tailored support that acknowledges gender differences can help diminish the strain on family members and improve the overall care environment.