Patient and Family Education

Education is an ongoing and vital part of the recovery process for stroke, which must reach the survivor, family members and caregivers. Education about stroke facilitates better understanding and supports coping and self-management. Skills training for caregivers reduces depression and perceived burden and improves quality of life. The information provided at each phase of acute care, rehabilitation, community reintegration and long-term recovery should be relevant to the patient’s and the family’s changing needs. Simple distribution of pamphlets is not sufficient; the delivery should be interactive and adapted to the communication challenges the stroke survivor faces, including language, cognitive, hearing, or visual impairment.

• Coordinated efforts among stakeholders such as Heart and Stroke Foundations (national and provincial), Canadian Stroke Network, public health agencies, ministries of health, and care providers across the continuum of stroke care to produce patient, family and caregiver education materials with consistent information and messages.
• Resources, such as stroke recovery support groups, available in the community to provide ongoing support and education following hospital discharge.
• Coordinated process for ensuring access to and awareness of educational materials, programs, activities and other media related to stroke by healthcare professionals, patients and caregivers, including advertising the availability of educational material, effective dissemination mechanisms and follow-up.
• Access to training for care providers in programs that facilitate communication with stroke survivors with aphasia.
• English and French educational resources that are culturally, ethnically, and linguistically appropriate, and that address the needs of patients with aphasia.

1. Proportion of stroke patients with documentation of education provided to patient, family and/or caregivers at each stage throughout the stroke management and recovery process (core).
2. Total time spent on patient/family education during a healthcare encounter for stroke.

Measurement Notes

• Quantity and method of patient education are very important elements of this recommendation. Measurement of patient and family education should be expanded when feasible to capture these aspects.
• Data sources include all documents, charts, and records related to patient care across the healthcare system (primary care, acute care, follow-up clinics, inpatient and outpatient rehabilitation programs, community programs and services) and may be obtained through primary chart audit or review, and various logging and audit practices of individual groups.
• Documentation quality by healthcare professionals involved in the patient’s care may affect ability to monitor this indicator reliably.

• Canadian Stroke Strategy Patient and Family Guide to Stroke Best Practices
• Accreditation Canada Stroke Distinction Program – Evaluation Criteria for the delivery of patient and family education
• HSF-Health Info: Stroke - http://www.heartandstroke.on.ca/ c.pvI3IeNWJwE/b.3581685/k.CE49/Stroke.htm

Patient and family education are important aspects of post-stroke care and the responsibility of all healthcare team members. ²¹⁶A conceptual review to highlight the changing needs for education and support across the continuum of stroke care for family caregivers of stroke survivors was conducted by Cameron and Gignac.⁴⁹² The focus of care, the individuals primarily responsible for providing that care, and patients’ self-care abilities change across care environments. Often family members who provide support also experience changes in their caregiving role. To date, however, interventions for family caregivers have not explicitly considered their changing support needs. Cameron and Gignac developed the “Timing It Right” framework, highlighting family caregivers’ changing experiences and corresponding support needs, and identified five phases of caregiver support: (1) event and diagnosis, (2) stabilization, (3) preparation, (4) implementation and (5) adaptation. The first two phases occur during acute care, the third occurs during acute care and/or inpatient rehabilitation, and the final 2 phases occur in the community. Recognition of family caregivers’ changing support needs across the continuum of stroke care will assist healthcare professionals to provide more timely and appropriate support.

Clinical practice guidelines across the stroke continuum provide strong consensus regarding the need to provide patients and family members with stroke education during hospitalization, and to provide information or other resources for social support and services. Nine randomized controlled trials of a heterogeneous group of education and support strategies for stroke patients and caregivers have provided modest evidence of some measurable benefit for patient and caregiver outcomes; negative studies tended to have small sample sizes and may have been able to detect only very large effects.

A Cochrane systematic review was conducted to assess the effectiveness of information provision strategies in improving outcomes for stroke patients and/or their identified caregivers.⁵⁰² The review identified seventeen trials and eleven contributed data to the meta-analyses. There were significant effects in favour of the intervention on patient knowledge (standardized mean difference (SMD) 0.29, 95% confidence interval (CI) 0.12 to 0.46), caregiver knowledge (SMD 0.74 95% CI 0.06 to 1.43), patient depression scores (weighted mean difference (WMD) -0.52, 95% CI -0.93 to -0.10), and one aspect of patient satisfaction (odds ratio (OR) 2.07, 95% CI 1.33 to 3.23). Post-hoc subgroup analyses showed that strategies, which actively involved patient and caregivers, had a significantly greater effect on patient anxiety (P<0.05) and depression (P0.05) than passive strategies. The authors concluded that there is some evidence to support the routine provision of information to stroke patients and their families. Although the best way to provide information is still not clear, the results of this review suggest that strategies which actively involve patients and caregivers should be used in routine practice.⁵⁰²

Desrosiers and colleagues conducted a randomized controlled trial (n = 62 individuals with stroke) to evaluate the effect of a leisure education program on participation in and satisfaction with leisure activities and well-being, depressive symptoms and quality of life after stroke.⁵⁰³ Experimental participants (n = 33) received the leisure education program at home once a week for 8 to 12 weeks, while control participants (n = 29) were visited at home at a similar frequency. There were statistically significant differences between the groups for satisfaction with leisure and participation in active leisure, as well as for the improvement of depressive symptoms. The results indicate the effectiveness of the leisure education program for improving participation in leisure activities, improving satisfaction with leisure and reducing depression in people with stroke.

Inadequacies in the provision of written education materials to stroke patients and their caregivers have also been reported by Hoffman and colleagues.⁵⁰⁴ In their recent study, 20 stroke team health professionals were asked about their use of and perspectives on written education materials. Seventy percent of participants provided materials to 25 percent or fewer of stroke patients, and 90 percent believed that patients and caregivers are only occasionally or rarely provided with sufficient written information. Health professionals were uncertain which team members provided written information and identified the need to improve the quality of materials used. It is suggested that stroke teams implement a system that facilitates the routine provision of high-quality written materials to patients and caregivers, communication among team members, and documentation and verbal reinforcement of the information provided.

Koenig and coworkers prospectively studied ischemic stroke patients (n = 130) undergoing inpatient rehabilitation and their caregivers (n = 85) to measure stroke knowledge and prestroke personal health behaviours, using the Stroke Education Assessment.⁵⁰⁵ Fifty-two percent of patients could not name any stroke risk factors or stroke warning signs, and 35 percent were unable to identify appropriate actions to take in a stroke emergency. Older patients were less knowledgeable than younger patients, while caregivers were more knowledgeable than patients. Regarding prestroke personal health behaviours, 28 percent of patients reported medication nonadherence, 26 percent had not seen their primary care physician in the preceding year, and fewer than 40 percent of patients with diabetes mellitus or hypertension reported dietary adherence. From these findings, it appears that stroke patients in this sample and their caregivers had large gaps in stroke knowledge and suboptimal personal health behaviours, thereby putting the patients at high risk for recurrent stroke. There is a need to develop stroke education programs for rehabilitating patients that are effective in closing these gaps in knowledge.

The training of caregivers in preparation for caregiving during hospitalization and in the first few months at home was identified in a recent study by King and Semik,⁵⁰⁶ as discussed in the Evidence-Based Review of Stroke Rehabilitation (EBRSR), 12th edition.²⁸ The researchers sampled 93 caregivers over a period of two years following stroke. Caregivers reported that preparation for caregiving was an unmet need upon discharge. Similarly, Grant conducted a randomized controlled study involving 30 primary family caregivers. Caregivers were randomly assigned to receive either a home visit or telephone contact from a registered nurse to develop social problem-solving skills to manage caregiving issues or they were assigned to a control group that received a brief sham telephone call.⁵⁰⁷ Intervention participants received an initial three-hour training session before discharge from rehabilitation. Once at home, caregivers assigned to the intervention group also received home visits and telephone contact of up to 45 minutes and then subsequent diminishing contact over the next three months. At two and five weeks, the telephone contact group demonstrated significantly reduced levels of depression (p < 0.01 and p = 0.05, respectively). While both intervention groups demonstrated less depression at 13 weeks, differences between intervention and control groups were nonsignificant. Level of caregiver education was significantly associated with the presence of positive problem-solving skills (p < 0.05). Significant differences in caregiver preparedness were demonstrated between the telephone group and the other groups at both two and five weeks but not at 13 weeks. Lower levels of caregiver preparedness were demonstrated to be significantly associated with positive perceptions of preparedness at the two-week and five-week assessments (p < 0.05).

A study by Kalra and collaborators involved 300 caregivers of stroke patients who were randomized to either intervention or control groups.⁴⁹⁴ Participants in the control group received conventional care, which included information on stroke and on prevention and management option, and included goal-setting for rehabilitation and discharge planning. They were encouraged to attend nursing and therapy activities to learn about patient abilities and to receive informal instruction on patient transfers, mobility, activities of daily living and advice on community services, benefits and allowances. The intervention group received caregiver training that included conventional care and instruction by appropriate professionals on common stroke-related problems such as skin care integrity and management, continence, nutrition, positioning, gait facilitation and advice on benefits and local services. The intervention group also received “hands on” training in lifting, handling, facilitation of mobility, transfers, continence, assistance with personal care and communication, all designed to the needs of the patient. Results of the study demonstrated that care costs for patients whose caregivers had received training were lower than the control group (p = 0.001). Training was associated with less caregiver burden (p = 0.0001), anxiety (p = 0.0001) and depression (p = 0.0001), as well as improved quality of life (p = 0.001). Training was also associated with lower levels of patient anxiety (p < 0.0001) and depression (p < 0.0001). Patients of trained caregivers reported higher quality of life (p = 0.009). A subsequent study reported that patients involved in the training had shorter lengths of stay and received less physiotherapy and occupational therapy.⁵⁰⁸ The Evidence-Based Review of Stroke Rehabilitation concluded that “there is strong (Level 1a) evidence that skills training is associated with a reduction in depression. There is moderate (Level 1b) evidence that training in basic nursing skills improves outcomes of depression, anxiety and quality of life for both caregiver and the stroke patient.”²⁸

Hare and colleagues conducted research to identify the long-term support needs of patients with prevalent stroke and their carers identified from practice stroke registers.⁵⁰¹ Patients and their carers were invited to attend focus groups at the university, a nursing home or in the community. Twenty-seven patients and six carers participated in the study. Three major themes emerged from the focus group discussions about the long-term needs of stroke patients and their carers: emotional and psychological problems; lack of information available for patients and their families; and the importance of primary care as the first point of contact for information or problems, even if these were nonmedical. The researchers concluded that better methods of providing information for long-term survivors of stroke and of addressing their emotional and psychologic needs are required. Primary care could be a key setting for helping to provide more inclusive services for both patient and carer.