5. Education for Individuals with Stroke, Family and Caregivers

Notes

Inclusion of family and informal caregivers in stroke education is valued and encouraged. Consent is required from the individual with stroke for involvement of family and caregivers in education sessions and training.

Education and training recommendations apply to all settings across the continuum. In settings such as ambulatory care and emergency departments, there is shorter interaction time and greater risk of learning needs being unmet. Strategies to address these issues should be in place such as written information resources and handout packages.

Refer to CSBPR Stroke Systems of Care module, Appendix Three: Stroke Education Framework for additional details.

Recommendations and/or Clinical Considerations

5.0 General Principles of Stroke Education

Education for individuals with stroke, their family and caregivers, is an integral part of stroke care that should be included as part of all healthcare encounters, and during transitions [Strong recommendation; High quality of evidence].
Individuals with stroke, their family and caregivers should be active participants in planning, delivery and evaluation of education related to stroke and recovery [Strong recommendation; Moderate quality of evidence].
All healthcare providers maintain responsibility for education for individuals with stroke and their family [Strong recommendation; Low quality of evidence].
Dedicated staff should be assigned in each setting to ensure education is being provided with a consistent approach [Strong recommendation; Moderate quality of evidence].
Stroke programs should have policies in place regarding stroke education and comply with the documentation practices that are outlined in the policy [Strong recommendation; Low quality of evidence]. ¹¹⁸

5.1 Assessment of Learning Needs

Individualized learning needs and goals should be assessed and documented by members of the healthcare team [Strong recommendation; Moderate quality of evidence].
1. Learning needs and goals should be updated regularly as individuals with stroke move through the stages and settings for care to tailor an individualized education plan [Strong recommendation; Moderate quality of evidence].
Areas of learning needs to be assessed may include:
1. Readiness for receiving education [Strong recommendation; Moderate quality of evidence].
2. Health literacy [Strong recommendation; Low quality of evidence].
3. Cultural considerations and language barriers [Strong recommendation; Low quality of evidence].
4. Preferred format for receiving education (in-person vs virtual; synchronous vs asynchronous; written and oral) [Strong recommendation; Low quality of evidence].
5. Cognitive, psychological, sensory and communication abilities [Strong recommendation; Moderate quality of evidence].
6. Specific content learning needs (as defined in Box 5) [Strong recommendation; Low quality of evidence].
7. Self-management skills level [Strong recommendation; Moderate quality of evidence]. Refer to Section 5.3 below for additional information.

5.2 Delivery of Education

An individualized education plan should be developed and implemented based on the assessment of learning needs and goals of individuals with stroke and their families, and their readiness to learn [Strong recommendation; Moderate quality of evidence].
It is recommended that individualized stroke education:
1. Be goal-oriented and facilitate shared decision-making regarding care and recovery [Strong recommendation; Moderate quality of evidence].
2. Cover all aspects of stroke care and recovery and align to individual educational needs [Strong recommendation; Moderate quality of evidence].
3. Facilitate shared decision-making and be aligned to individualized goals [Strong recommendation; Low quality of evidence].
4. Be interdisciplinary, evidence-based, and consistent in content, and across providers and settings [Strong recommendation; Moderate quality of evidence].
5. Be interactive and encourage active participation of individuals with stroke and their family [Strong recommendation; Moderate quality of evidence].
6. Combine skill building (e.g., problem solving, stress management, goal setting) with psycho-educational strategies instead of psycho-educational strategies alone [Strong recommendation; High quality of evidence].
7. Be available in accessible formats, based on individual circumstances [Strong recommendation; Moderate quality of evidence].
8. Include repetition and reinforcement of information that has not been retained (e.g., medication information and management) [Strong recommendation; Moderate quality of evidence].
9. Be provided both formally and informally in individual and group settings as appropriate [Strong recommendation; Moderate quality of evidence].
10. Consider optimal method of education delivery including virtual options [Strong recommendation; Moderate quality of evidence].
Education provided should be documented in the health record and accessible by members of the healthcare team [Strong recommendation; Low quality of evidence].
Retention of information should be regularly assessed and levels of understanding documented [Strong recommendation; Moderate quality of evidence].
Education and training should be offered to family and caregivers to participate in and to provide safe stroke care using an interdisciplinary approach based on the individual’s learning needs [Strong recommendation; Moderate quality of evidence].

5.3 Supporting Self-Management following Stroke through Skills Training

Refer to Definitions and Descriptions within the Introduction and Overview for the definition of self-management.

Individuals with stroke, their families and caregivers should be provided with resources and information which will enable self-management and the ability to navigate through the health care and social system [Strong recommendation; Moderate quality of evidence].
Self-efficacy and quality of life should be supported by providing opportunities to learn and master self-management skills [Strong recommendation; Moderate quality of evidence]. Refer to Box 5 and the CSBPR Enabling self-management following stroke Checklist for additional information regarding self-management topics for individuals who had a stroke, their family and caregivers.
With consent from the individual with stroke, family members and caregivers may be invited and encouraged to attend care and therapy sessions to support self-management for individuals with stroke [Strong recommendation; Low quality of evidence].
All care settings should have up-to-date inventories of community resources available to support self-management and offer guidance and assistance in obtaining needed services [Strong recommendation; Low quality of evidence].

Rationale +-

Education is an ongoing and vital part of the recovery process for individuals with stroke, family members and caregivers. Following stroke, individuals with stroke generally retain less than 25% of the information that is provided during their inpatient stay; ¹¹⁹ therefore, it needs to be reinforced consistently across care transitions. Active education interventions help to equip both individuals with stroke and caregivers with the tools to manage the rehabilitation process. The information provided at each phase of acute care, rehabilitation, community participation, long-term recovery and end-of-life should be relevant to the individuals with stroke and the family’s changing needs. Education interventions should be interactive and adapted to the cognitive and communication challenges, as required. Skills training for caregivers, is also an important component, which helps to empower individuals with stroke and their families to take an active role in the recovery process, improving quality of life and contributing to better long-term outcomes.

Individuals with stroke highly value and appreciate accessible, timely and person-centred education and information following stroke for themselves and for their caregivers. They highlight the importance of tailoring education to each person’s stage of recovery and unique needs. Peer support is seen as a particularly meaningful source of learning, offering encouragement, shared understanding, and practical insights that help individuals feel less alone and more hopeful.

While more formal education may take place in acute care and through rehabilitation, individuals with stroke emphasize the ongoing need for credible and relevant information after transitioning back to the community. Finding support in the community, however, can be challenging. While some individuals access private providers or community programs, others face barriers such as financial constraints, limited awareness of available resources, or difficulties with virtual formats. Individuals with lived experience encourage healthcare providers to take an active role in working collaboratively with the individual with stroke, their caregivers, and families to understand their education needs and facilitate appropriate connections as part of transition planning. This approach helps ensure that individuals remain supported even after they are no longer connected to their stroke team.

System Implications +-

Actions that support the transition of care and are applicable across the continuum of care, including in 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 educational needs of the individual with stroke, their family and caregivers, including:

Coordinated efforts among stakeholders such as the Heart and Stroke Foundation, Canadian Partnership for Stroke Recovery, public health agencies, ministries of health, non-government organizations (NGOs), hospitals and clinics, and individual care providers across the continuum of stroke care to produce education materials with consistent information.
Coordinated processes for ensuring access to and awareness of educational materials, programs, activities and other media related to stroke by healthcare professionals, individuals with stroke and caregivers, including advertising the availability of educational material, effective dissemination mechanisms and follow-up.
Community resources, such as stroke recovery support groups, to provide ongoing support and education following hospital discharge.
Coordinated processes for ongoing communication between teams of learning needs and education that has been provided.
Coordinated process for providing training for team members in educational techniques and best practices for stroke care and recovery.
Access to training for care providers to gain knowledge and learn skills in self-management, to support the individual with stroke’s unique care needs, and adapt to communication, sensory and perceptual challenges as appropriate.
Access to educational resources that are culturally safe, relevant and appropriate, and where possible available in the individual’s preferred language.
Processes in place to monitor available education and resources to support individuals with stroke, families and caregivers so that appropriate resources can be recommended.
Access to self-management support services through virtual healthcare technologies, especially in rural areas and where there are local resource gaps.
The development and implementation of an equitable and universal pharmacare program, implemented in partnership with the provinces, designed to improve access to cost-effective medicines for all individuals in Canada regardless of geography, age, or ability to pay. This program should include a robust common formulary for which the public payer is the first payer.

Performance Measures +-

System indicators

Availability of standardized and consistent stroke education materials and resources at each stroke centre.
Proportion of stroke centres with stroke education integrated into their electronic health record.
Resources and services available that are adapted for communication and other impairments (such as aphasia, vision loss).

Process indicators

Proportion of individual with stroke with documentation of education provided at each stage throughout the stroke management and recovery process.
Total number of encounters focused on education for each individual with stroke, and the time spent on education during a healthcare encounter for stroke.
Percentage of individual with stroke discharged with a copy of their discharge plan and educational materials.
Change in self-management behaviour at 6 weeks, 3 months and 6 months following stroke, using validated measurement tools.

Person-oriented outcome and experience indicators

Change in individual with stroke and family knowledge of stroke-related content before and after teaching session.
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).
Percentage of individual 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 5

The educational needs of individuals recovering from stroke and their informal caregivers changes across the continuum of care. In preparation for discharge from acute care, education focuses on understanding the stroke event, early warning signs, and vascular and medical risk factors, with an emphasis on promoting adherence to treatments and secondary prevention measures. Secondary prevention will also be the focus of education at visits to TIA or outpatient prevention clinics. During inpatient rehabilitation, the focus shifts to teaching individuals and their families about functional recovery, mobility strategies, use of adaptive equipment, and managing common complications such as spasticity or dysphagia. In long-term care or community reintegration, educational priorities include stroke self-management, medication adherence, lifestyle modification, emotional adjustment, and return to work or social roles. Tailoring education to the individual's stage of recovery and functional capacity ensures that information is relevant, understandable, and actionable.

A scoping review ¹²⁰ included the results from 36 articles of individuals who had suffered a stroke or TIA within the previous 5 years, and focused on the information needs of both patients and their informal caregivers across care settings. Fourteen domains of information needs were identified. Among the most frequently cited were a need for information about treatment, the etiology of stroke, personalized information, community/social support availability, prognosis, the effects of stroke, and the care role for patients living at home. The need for information on specific topics changed across the recovery process. The primary information source was healthcare professionals, followed by written information, family and friends, and the internet, with information provided directly by healthcare professionals being preferred.

Self-Management Programs

Self-management programs empower individuals with strokes 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, authored by Fryer et al. ¹²¹ included the results from 14 RCTs of patients 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 (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. ^{122, 123} Lennon et al. ¹²⁴ conducted a systematic review of studies (including randomized and non-randomized controlled trials) that assessed “self-management” interventions for patients 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.

Patient & Caregiver Education

The benefit of family and caregiver involvement was assessed in a Cochrane review, authored by Crocker et al. ¹²⁵ 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 patients 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. ¹²⁶ randomized 138 patients 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. Patients 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. ¹²⁷ 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. ¹²⁸ 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. Patients experienced significant reductions in anxiety and depression at 12 months and increased quality of life at 3 and 12 months. No differences in mortality, institutionalization or functional ability were reported between intervention and control groups. Using a similar intervention, Forster et al. ¹²⁹ 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. 2004), 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.

Patient Education

Education received in the acute stage of stroke can help to enhance understanding of the condition, promote adherence to secondary prevention strategies, and reduce the risk of recurrent events. Benoit et al. ¹³⁰ randomized 199 patients with an acute TIA or minor stroke admission to receive a 2-hour interactive group session conducted by a vascular neurologist or a nurse trained in stroke and therapeutic education, focused on stroke education, within the stroke unit before hospital discharge or to usual care. The 3-month improvement in stroke knowledge scores (range of possible scores 0-29) was significantly greater in the intervention group (mean baseline-adjusted between-group difference=1.6 points, 95% CI 1.4 to 1.9) and the proportion of patients who were unable to name any risk factor was significantly lower after intervention at 3 months (13.2% vs. 3.4%) but not at 12-months (2.4% vs. 3.6%). In a study nested within the STANDFIRM trial (Shared Team Approach between Nurses and Doctors For Improved Risk Factor Management, a cluster-randomized controlled trial designed to evaluate whether an individualized, interdisciplinary secondary prevention program led by nurses, in collaboration with stroke specialists and general practitioners, improved cardiovascular risk factor control), 268 patients with minor stroke or TIA were randomized to an intervention group or usual care group. ¹³¹ Overall, 34% of participants were unable to name a single risk factor. However, participants in the intervention group named significantly more risk factors (incidence risk ratio=1.26, 95% CI 1.00 to 1.58) at 24 months.

Sex & Gender Considerations

Health educational approaches need to account for sex and gender differences, as men and women may differ in their health beliefs, learning preferences, communication styles, and responsiveness to specific educational strategies. Tailoring content and delivery to address these differences can help improve patient engagement and understanding; however, little research has been conducted in this area.