Previous Section 8. Supporting Individuals with Stroke, Family and Caregivers During Stroke Rehabilitation
NEW Stroke Rehabilitation Planning for Optimal Care Delivery
NEW Stroke Rehabilitation Planning for Optimal Care Delivery

9. Education for Individuals with Stroke, Family and Caregivers During Stroke Rehabilitation

Recommendations and/or Clinical Considerations
  1. Education for individuals with stroke, their family and caregivers, is an integral part of stroke rehabilitation and recovery that should be included as part of all healthcare encounters, and during transitions [Strong recommendation; High quality of evidence]. 
  2. Individualized rehabilitation and recovery learning needs and goals should be assessed and documented by members of the healthcare team [Strong recommendation; Moderate quality of evidence]. 
  3. Individuals with stroke, their family and caregivers should undergo an assessment to determine readiness for education, health literacy, psychosocial support, ability to integrate rehabilitation and recovery knowledge and training, and to access appropriate health information and social services [Strong recommendation; Moderate quality of evidence].
  4. Opportunities to learn and master self-management skills should be provided during the rehabilitation and recovery process to support the development of self efficacy and self management [Strong recommendation; Moderate quality of evidence]. Refer to Box 9 for additional information regarding self-management topics for individuals with stroke, their family and caregivers.
  5. With consent, family members and caregivers may be invited and encouraged to attend rehabilitation therapy sessions and given the opportunity to learn rehabilitation and recovery skills to support safety and self-management [Strong recommendation; Low quality of evidence]. 
  6. Rehabilitation teams should offer updated, validated and reliable information and resources to individuals with stroke, their family and caregivers, facilitating easier self-management and navigation of community-based health and social systems following discharge [Strong recommendation; Moderate quality of evidence].

Refer to Stroke Systems of Care module for additional information on Education for Individuals with Stroke, Families and Caregivers.

Rationale +-

Education is an ongoing and vital part of the rehabilitation and recovery process for individuals with stroke, family members and caregivers. Individuals with stroke generally retain less than 25% of the information that is provided during their inpatient stay, partly due to the impacts of stroke, exhaustion and at times denial. Therefore, information needs to be reinforced often and consistently across care transitions. Active education interventions that are inclusive help to equip both individuals with stroke, family and caregivers with the tools to manage the rehabilitation and recovery process. Providing relevant and appropriate information for each phase of the stroke recovery process, recognizing the individual’s changing needs, contributes to increased quality of care and may lead to improved outcomes. Education interventions that are interactive and adapted to the cognitive and communication challenges, are generally more effective for learning retention. Skills training for family and caregivers is also an important component, which helps to empower individuals and their families to take an active role in the recovery process, improving quality of life, including supporting mental health, and contributing to better long-term outcomes. 

Individuals with stroke highly value and appreciate education and information following stroke. There is benefit in receiving a package containing all information in one place that can be reviewed when needed, and they encourage that this should be routinely provided to all individuals following stroke. Examples of information that panel members specifically noted as useful includes a summary of health information, information on stroke and the impairments that can occur, contact numbers, available resources, risk factors, medication side effects, multimorbidity, and information to address financial challenges and funding opportunities as appropriate. At discharge, information (both written and orally) on expected next steps, information on community rehabilitation, and information on community supports and resources is highly valued by individuals with lived experience. 

The way information is provided is also important to consider, and individuals with stroke appreciate when healthcare providers are sensitive and honest during communications, information is tailored to their needs and goals and supports their understanding and expectations of all aspects of the rehabilitation and recovery journey. Importantly, information should be accessible for those with communication, cognitive, sensory or perceptual challenges, and provided in the preferred language of the individual with stroke, their family and caregivers when able.

Performance Measures +-

System indicators:

  1. Availability of educational materials, resources and programs for individuals and their family following stroke.

Process indicators:

  1. Proportion of individuals with stroke with documentation of education provided at each stage throughout the stroke management and recovery process.
  2. Total number of encounters focused on education for each individual with stroke, and the time spent on education during a healthcare encounter for stroke.
  3. Proportion of individuals with stroke discharged with a copy of their discharge plan and educational materials.

Patient-oriented indicators:   

  1. Proportion of individuals with stroke who report being involved in education and training related to their ongoing management and recovery from stroke.
  2. Change in self-management behaviour at 6 weeks, 3 months and 6 months following stroke, using validated measurement tools.
  3. Change in individuals with stroke and family knowledge of stroke-related content before and after teaching session.
  4. Changes in quality of life measured at regular intervals 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).
  5. Proportion of individuals with stroke who reported feeling adequately prepared for self-care and self-efficacy.
Implementation Resources and Knowledge Transfer Tools +-

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

Resources for Individuals with Stroke, Families and Caregivers

Summary of the Evidence +-

Evidence Table and Reference List

Self-Management Programs

Self-management programs empower individuals with stroke and their families by teaching problem-solving, goal-setting, and decision-making skills for active recovery. These programs can also provide education about stroke and its effects. A Cochrane review,97 included the results from 14 RCTs of individuals recovering from stroke who were living in the community. Trials compared interventions composed of ≥1 component of self management or targeted more than a single domain of change, or both, with a control intervention (either an inactive control such as waiting list or usual care or an active control such as education only). Interventions were provided by allied health professionals either on a one-to-one basis or as a group, and all were delivered face-to-face except one. Self-management programs were associated with a significant improvement in quality-of-life (standardized mean difference [SMD]=0.20, 95% CI 0.00 to 0.41; low quality of evidence) and self-efficacy (SMD=0.33, 95% CI 0.04 to 0.61; low quality of evidence). Self management programs were not associated with significant improvements in activity limitations or impairment. Two trials of nurse-led stroke self-management programs were associated with significant improvements in Stroke Self-Efficacy Questionnaire scores.98, 99 Lennon et al. 100 conducted a systematic review of studies (including randomized and non-randomized controlled trials) that assessed “self-management” interventions for individuals recovering from stroke. Interventions included in the review were quite variable, ranging from group programs to one-on-one interventions consisting of workbooks, DVDs or exercise sessions. Several interventions were based on the Stanford Chronic Disease Self-Management programme, which consisted of workshops, a companion book and a relaxation CD. Although pooling of results was not possible, in some of the largest RCTs included in the review, significant improvement in physical domains, quality of life, and dependency were reported in the active intervention groups.

Education for Individuals with Stroke, Family and Caregivers

The benefit of family and caregiver involvement was assessed in a 2021Cochrane review,101 which included the results of 33 RCTs. Neither passive (leaflet or pamphlet), nor active (lecture) interventions were associated with significant improvements in caregiver’s knowledge of stroke and stroke services, compared with usual care, although only 3 to 4 trials assessing this outcome were included. Conversely, active interventions were associated with the patient’s stroke knowledge (SMD=0.41, 95% CI 0.17-0.65, GRADE: low quality), but not with anxiety or depression. Several randomized trials have evaluated the effects of information and support packages for individuals and their caregivers following stroke. Those trials that simply provided participants with written information as the intervention tended to be less effective compared with programs that included additional components. Eames et al.102 randomized 138 individuals and their carers to receive an individually tailored education and support package with verbal reinforcement for 3 months, or to a usual care group, which received unstructured, informal education. Individuals in the intervention group reported significantly greater self-efficacy (access to stroke information domain, p<0.04), feeling of being informed (p<0.01), and satisfaction with medical (p<0.001), practical (p<0.01), service/benefit (p<0.05), and secondary prevention (p<0.001) information received.

Caregiver Education

In the Organising Support for Carers of Stroke Survivors (OSCARSS), cluster RCT, Patchwood et al.103 randomized 414 carers within 35 clusters to an intervention group or usual care group. The intervention, the Carer Support Needs Assessment Tool for Stroke was a staff-facilitated, carer led approach to help identify, prioritise and address the specific support needs of carers, requiring at least one face-to-face support contact dedicated to carers, typically provided in the home, with reviews as required. There was no significant adjusted mean difference in 3-month caregiver strain, the primary outcome, assessed using the Family Appraisal of Caregiving Questionnaire (−0.04, 95% CI −0.20 to 0.13), or in any of the secondary outcomes (subscales of the primary outcome, anxiety, depression or satisfaction with stroke services). Additionally, the intervention was not cost-effective. Studies assessing the impact of caregiver education and skills training have also reported the benefits of active or “hands-on” interventions. A randomized controlled trial by Kalra et al.104 allocated patient/caregiver dyads to receive structured caregiver training (hands-on training in basic nursing techniques that emphasized skills essential for daily management of ADL) or conventional instruction (information and advice). The length of the intervention was dependent on patient need, ranging from three to five sessions in the inpatient rehabilitation setting. Individuals with stroke experienced reductions in anxiety and depression at 12 months (p<0.001) and increased quality of life at 3 and 12 months (p<0.05). No differences between mortality, institutionalization or functional ability were reported between intervention and control groups. Using a similar intervention, Forster et al. 105 randomized 928 patients, expected to return home following acute stroke, to participate in the London Stroke Carers Training course (LSCTC) (same protocol as Kalra et al.104), or to usual care. At 6 months there was no significant difference in the mean patient Nottingham EADL scores between groups (27.4 vs. 27.6, p=0.866) or Caregiver Burden Scores (45.5 vs. 45.0, p=0.660). While the intervention did not appear to be effective, the authors speculated that the timing, in the immediate period after stroke, might not be ideal.

Sex & Gender Considerations

Sex and gender differences can significantly influence the educational approach and the effectiveness of rehabilitation programs. For example, women tend to have strokes later in life and may face unique challenges such as higher frequency of disability and post-stroke depression. As a result, educational content should be tailored to address these gender-specific concerns, incorporating information on hormonal influences, caregiving responsibilities, and emotional well-being. Additionally, gender norms and expectations may affect how individuals access care and engage with rehabilitation activities, with women often assuming a greater amount of the caregiving duties, and men potentially being less likely to seek help for emotional or psychological issues. Tailoring education to these differences can improve the patient's understanding of their condition, empower them to actively participate in their recovery, and promote better long-term outcomes.

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