Text Size:    +   -

Patient, Family and Caregiver Education

2016 UPDATE
July, 2016

The Canadian Stroke Best Practice Recommendations for Stroke Rehabilitation, 5th Edition (2015) is published in the International Journal of Stroke (IJS) and available freely online. To access the specific recommendations for Managing Transitions of Care Following Stroke, and all other sections of the Stroke Rehabilitation recommendations, please click on this URL which will take you to the recommendations online in the IJS: http://wso.sagepub.com/content/early/2016/07/21/1747493016660102.full.pdf+html

For the French version of these recommendations, open the appendix at this link: http://wso.sagepub.com/content/suppl/2016/07/21/1747493016660102.DC1/CSBPR_Transitions_of_Stroke_2016_IJS_French_Suppl.pdf

All other supporting information, including performance measures, implementation resources, evidence summaries and references, remain available through www.strokebestpractices.ca, and not through the IJS.  Please click on the appropriate sections on our website below for this additional content.

Box 2: Self-Management for Patients, Family and Caregivers

Patient education topics*: 

  • Exercise
  • Symptom management techniques
  • Risk factor management (including drug adherence)
  • Secondary stroke prevention
  • Nutrition
  • Fatigue and sleep management
  • Medication management
  • Coping with physical changes
  • Coping with emotions such as fear, anger and depression
  • Coping with  cognitive and memory changes
  • Coping with perceptual deficits
  • Training in communication
  • Health-related problem-solving and decision making
  • Relationships and sexuality
  • Community reintegration including leisure and driving

Family and caregiver education topics:

  • Training in personal care techniques (e.g., feeding techniques)
  • Communication strategies
  • Physical handling techniques (e.g., transfers from bed to chair, positioning of a hemiplegic limb)
  • Food preparation and modifications for patients with dysphagia
  • Education on the self-management model to encourage patient independence when possible
  • How to access community services and resources
  • Problem-solving techniques
  • Respite care options
  • Ongoing health system navigation
  • End-of-life and palliative care options  

* topics may be applicable to families and caregivers as well as patients

Rationale

Education is an ongoing and vital part of the recovery process for stroke for survivors, family members and caregivers. Research demonstrates that patients generally retain less than 25% of information and education provided in hospital.  Education about stroke facilitates better understanding and supports coping and self-management, and must be repeated and reinforced with consistency across transitions of care. Skills training for caregivers may increase participation and safety, clarify expectations, improve quality of life, and reduce depression and perceived burden. The information provided at each phase of acute care, rehabilitation, community reintegration, long-term recovery and end-of-life 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 cognitive and communication challenges faced by some stroke survivors, including receptive and expressive language, processing speed, hearing, or visual impairment.

System Implications

Transitions of care support and actions are applicable across the continuum of care, including in primary care, the emergency department, acute care, rehabilitation settings, complex care/transitional bed settings, long-term care and community settings.  Processes and mechanisms should be in place in all these settings to address patient, family and caregiver educational needs, 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 patient, family and caregiver education materials with consistent information.
  • Community resources, such as stroke recovery support groups, to provide ongoing support and education following hospital discharge.
  • Coordinated processes 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.
  • Coordinated processes for ongoing communication between departments/organizations/agencies of learning needs and education that has been provided.
  • Access for care providers to training to facilitate communication with stroke survivors with aphasia.
  • Access to educational resources that are culturally, ethnically, and linguistically appropriate.
  • Access to self-management support services through telemedicine technologies, especially in rural areas and where there are local resource gaps.
Performance Measures
  • 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).
  • Total number of encounters focused on education for each patient, and the time spent on patient/family education during a healthcare encounter for stroke.
  • Change in patient and family knowledge of stroke-related content before and after a teaching session.
  • Percentage of patients discharged with a copy of their discharge plan and patient educational materials.
  • Change in self-management behaviour at 6 weeks, 3 months and 6 months following stroke, using validated measurement tools.

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, although this is challenging to accomplish.
  • For Indicator #3, here possible, standardized mechanisms for testing patient, family and caregiver knowledge pre- and post-education should be included in the education sessions.
  • 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 (generally weak) by healthcare professionals involved in the patient’s care may affect ability to monitor this indicator reliably.
Implementation Resources and Knowledge Transfer Tools

Health Care Provider Information

Patient Information

Summary of the Evidence

Evidence Table and Reference List

Education across the continuum of care is an important component of support for patients, families and informal caregivers, particularly with regard to secondary stroke prevention and chronic disease self-management. A 2012 Cochrane review (Forster et al. 2012) assessed interventions related to the provision of information, compared with usual care and included the results from 21 RCTs (2289 patients and 1290 carers). In 14 trials, the intervention was focused on either the patient or carer exclusively. In the remaining trials, the intervention was focused on both groups. Patients and caregivers receiving an intervention had improved knowledge of stroke services (SMD=0.29, 95% CI 0.12 to 0.46, p<0.001 and SMD=0.74, 95% CI 0.06 to 1.43, p<0.05, respectively) and patients expressed greater satisfaction with stroke information (OR=2.07, 95% CI 1.33 to 3.23, p<0.001) compared to patients in the control group. Patients receiving an intervention also experienced improvements in depression scores (MD=-0.52, 95% CI -0.93 to -0.10, P<0.05) with greater effects associated with interventions that were considered “active”. Interventions were considered active if there was patient or caregiver engagement during the sessions. Engagement could include the opportunity to ask questions, request additional information, be provided with hands-on training, or involve the use of an interactive workbook and/or some means of follow-up reinforcement. 

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. (2013) 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. Lowe et al. (2007) evaluated the use of a “CareFile”, an information package containing relevant support services and secondary prevention resources that was individualized for each patient. One hundred patients participated in the study, 50 randomized to the intervention group and 50 to the control group. At six months, 98% patients in the intervention group reported that the CareFile provided useful information and 53% said that they used it as reference material regarding their stroke. Patients in the intervention group demonstrated greater knowledge of stroke risk factors than patients in the control group at both 3 and 6 months after stroke (Mean difference=0.5, 95% CI 0.0 to 1.1; Mean Difference 0.8, 95% CI 0.3 to 1.4). Hoffman et al. (2007) randomized 138 patients to receive either computer-generated tailored written information or generic written information. At three months, there were no significant differences between groups in mean change scores for stroke knowledge, self-efficacy or depression.

Telephone- based interventions have also been examined as a method of providing support and education; Bakas et al. (2009) randomized 50 caregivers of stroke survivors with ongoing needs to a Telephone Assessment and Skill Building Kit (TASK) group or to a usual care group. Participants in the TASK group received a notebook containing skill building tips, a stress management workbook and a brochure on family caregiving, plus weekly phone calls from a nurse for a period of 8 weeks that involved discussion of patient identified priority areas. Participants in the control group received a brochure on family caregiving, as well as weekly calls from a nurse who did not provide any advice or information Caregivers in the intervention group were significantly more optimistic at 4, 8 and 12 week follow up, experienced significantly lower levels of task difficulty at 4 weeks and had significantly improved threat appraisal skills at 8 weeks and 12 weeks, although there were no significant changes in depressive symptoms, life changes or general health perception.

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. (2004) 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, consisting of between three to five sessions in the inpatient rehabilitation setting. Patients 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. (2013) 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.

The implementation of education and skills training programs ultimately aim to increase the self-efficacy of patients and informal caregivers for their own self-management. Lennon et al. (2013) 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 program, which consists of workshops, a companion book and a relaxation CD. However, due to the variability in outcomes assessed, pooling of results was not possible. Some of the largest randomized controlled trials included in the review demonstrated improvement in physical domains, quality of life, and dependency. A Cochrane review (Forster et al. 2007) included the results from 18 studies examining self-management programs for participants with multiple chronic conditions (e.g. arthritis, chronic pain, stroke, hypertension, heart failure etc.). There were small but statistically significant improvements in pain, disability, fatigue and depression and anxiety associated with the intervention group. There were also small but statistically significant increases in levels of exercise and in the frequency of practice of cognitive strategies for symptom management associated with the intervention.

The “Moving on After Stroke” (MOST) program is another example of a self-management focused program, consisting of 16 group sessions with an hour of education and an hour of exercise. Education sessions included topics such as secondary prevention, medications, sleep, nutrition, and self-management. Huijbregts et al. (2008) compared this program to the Living with Stroke (LWS) program that offered 6 group education sessions consisting of 90 minutes of education on topics such as the causes of stroke, physical effects, and therapies. There were no statistically significant differences in outcomes between the groups; however, patients in the MOST group had increases in FIM scores (F=3.97, P<0.05), improvements in the reintegration into normal living index (F=3.43, P<0.05) and improvements in the activity-specific balance scale (F=8.94, P<0.005).