community AND Long-Term STROKE CARE
Community and Long-term sTROKE care
The stroke survivor’s journey continues long after they have been discharged from the hospital. It is in the community that much of the stroke survivor’s physical, psychological, and cognitive improvement occurs. Providers in the community must have knowledge of stroke impairments and be aware of community resources to maximize recovery and facilitate community reintegration. The following page will highlight some resources that may be useful to providers working with persons with stroke in the community and long term care sectors.
Community reintegration “involves return to participation in desired and meaningful activities of daily living, community interests and life roles following a stroke event. The term encompasses the return to active community living and contributing to one’s social groups and family life” (Cameron & O’Connell, 2016, p. 8). Community management and reintegration can occur as a result of interaction with many settings which includes outpatient rehabilitation, primary care, specialist care, home care, community based programs, long term care and palliative care (Cameron & O’Connell, 2016). The Central East Stroke Network hosted a webinar by Dr. Mary Eagan titled “What is community reintegration and how we can better promote it” which is also very useful in understanding the concept of community reintegration https://cesnstroke.ca/professional/cesn-webcasts/
Cameron, J. I., & O’Connell, C. M. Canadian Stroke Best Practice Recommendations: Managing Transitions of Care Update 2016.
Many regions around the province have undertaken work on community reintegration. Here are some examples:
-Recognizing that transitioning from hospital to home can often be an overwhelming and emotional time for patients and their families the Toronto Stroke Networks developed the Community Re-Engagement Cue to Action Trigger Tool (CR CATT). This tool, designed for stroke survivors and their families, acts as a guide to help stroke survivors ask the right questions to ensure that all of their post-stroke needs are addressed.
-The Stroke Network of Southwestern Ontario conducted focus groups with providers, patients and family members to identify components that facilitate community reintegration. The findings of this engagement is available in a report titled Pathways for People with Stroke to Live Fully in the Community.
-The Stroke Network of Southeastern Ontario produced a report titled Building Capacity to Enhance Community Reintegration of People with Stroke which utilized regional and local forums to identify emerging directions and principles related to community reintegration. In 2015, The Stroke Network of Southeastern Ontario also conducted community wide consultations to hear stroke survivor, caregiver and health care provider voices to chart a course toward improved community reintegration. This report identifies priority areas for change as well as the resulting recommendations for charting that course.
-Outside of Ontario, the Stroke Recovery Association of British Columbia Developed the 7 Steps to Stroke Recovery which outlines steps that can be taken to overcome challenges as a result of a stroke.
An important update has been released for the Heart & Stroke Canadian Stroke Best Practice Recommendations (CSBPR) for Rehabilitation, Recovery and Community Participation. This module includes two parts:
- Part One: Rehabilitation and Recovery following Stroke
- Part Two: Transitions and Community Participation following Stroke Components of both of these modules are important to community reintegration. The full reports can be found here.
Another pivotal report on community reintegration post stroke was released by the Stroke Association UK. The Stroke Association UK Lived Experience Report (2019) was based on survey of over 10 000 persons with stroke and caregivers. The survey focused on areas where persons with stroke received support and areas in which they did not. Many aspects which impact community reintegration such as cognition, mental health, independence, relationships/social life, caregiver burden and ability to work are discussed in this report.
The West GTA Stroke Network has also undertaken important work in the area of community reintegration post stroke. In May 2019, the West GTA Steering Committee approved the formation of the Community Reintegration Expert Committee to explore the topic of community reintegration by identifying key community programs that are required to support persons with stroke after they completed their rehabilitation. The WGTASN Community Reintegration Expert Committee was made up of community providers currently offering community programs to persons with stroke in the West GTA Stroke Network.
As a part of the work of the Community Reintegration Expert Committee, a survey was developed for persons with stroke and providers to identify key community reintegration programs post stroke. In total, 216 surveys were collected between the two surveys. The Community Reintegration Expert Committee also reviewed key literature on community reintegration. Using the survey results and the literature the group made 12 recommendations. The recommendations were prioritized by the group. Feedback was also received from 6 persons with stroke/caregivers on the prioritized recommendations. The recommendations made by the group are meant to provide the groundwork necessary to advance community reintegration in the West GTA Stroke Network region. To see the recommendations please see the Community Reintegration Committee Executive Summary.
Initiative 8: Aphasia Awareness
Last year, the West GTA Stroke Network Regional Community Reintegration Committee created a survey for persons with stroke, caregivers, and providers to identify key components of community programs. One common theme that was mentioned in the feedback from our region, is the need for improved cross continuum aphasia awareness. The community reintegration committee felt that one way to raise awareness about aphasia was to create a marketing campaign/infographic about aphasia and resources that are available. Thank you to the Halton-Peel Community Aphasia and Holly Sloan SLP at Trillium Health Partners for their assistance with this campaign.
Initiative 5: Resource Inventory
Initiative 3: Depression Post Stroke
Initiative 7: Peer Support
Stemming from the work of the West GTA Stroke Network Community Reintegration Expert Committee (2019), a working group was formed to compile the available evidence to progress peer support in the West GTA Stroke Network and examine the logistics of implementing peer support programs in the northern geography of our region (Orangeville and Georgetown). The working group was composed of the March of Dimes Canada and the West GTA Stroke Network. The working group met monthly for 60 minutes for approximately 6 months. The information compiled during the meetings was summarized via short report which will be considered in future implementation.
The working group reviewed recent literature on peer support, other provincial work done in this area, compiled a current state of peer support in the region and reflected on the impact of the pandemic and use of virtual supports. Based on the review of the literature and discussions, the group compiled recommendations and created action plan to advance peer support in the West GTA Stroke Network region. To view the full report please click here.
One in five stroke survivors are admitted to complex continuing care or long term care settings. Most persons with stroke admitted to these settings don’t return back to the community after their stroke. The characteristics of persons with stroke residing in long term and complex continuing care settings has been highlighted in a report by CorHealth Ontario.
The Canadian Stroke Best Practice Recommendations on Transitions of Care highlight assessment, care planning, rehabilitation, restorative care, and education for persons with stroke and their families in the long term care settings.
The West GTA Stroke Network holds one full day workshop for long term and complex continuing care staff annually focused on best practices in these settings. Numerous other resources have also been compiled by our team to help support ongoing learning and development.
This page is a collection of resources that may be useful to staff taking care of persons with stroke in the long term and complex care setting.
One great resource for providers working in the long term care setting are the Stroke Care Plans. In June 2011, a collaborative project was developed between LTC Home representatives and Ontario Stroke Regional Community and LTC Coordinators (CLTCs) to integrate stroke best practices into long-term care facilities. The objective of this project was to link stroke best practice information with Resident Assessment Instrument –Minimum Dataset (RAI-MDS) data elements and Resident Assessment Protocols (RAPs) through the integration of best practice Stroke Care Plans into existing LTC care plan libraries. Twelve Stroke Care Plans were developed based on the Tips and Tools for Everyday Living© (Heart and Stroke Foundation of Ontario, 2010) best practice resource and incorporating RAI MDS Outcome Scales. As a result, the Stroke Care Plans translated evidence-based, best practice stroke care into comprehensive and practical care plans for front line providers. The updated Best Practice Stroke Care Plans for Long Term Care Homes are available on the CorHealth Ontario website . These care plans have been updated to reflect the new Heart and Stroke Foundation’s Taking Action for Optimal Community and Long-Term Stroke Care (2015) - a resource for healthcare providers caring for stroke survivors.
The Community & LTC Coordinator of the West GTA Stroke Network can help support your organization with the implementation of the Stroke Care Plans as well as other quality initiatives designed to provide LTC residents with care that reflects best practices.
Stroke Network of Southeastern Ontario: Blood Pressure Toolkit for PSW
This toolkit is designed to assist Personal Support Workers (PSW) and other health care team members to acquire the practical knowledge and skills to support blood pressure management and to build the capacity to work collaboratively with the health care team and resident/client to optimize blood pressure management. This program is meant to be individualized depending on the needs of the learner and in accordance with the employer/client’s guidelines. The Learning Plan is divided into two modules each of which can be used independently of the other (Module #1: The Basics of Blood Pressure & Supporting the Patient and Module #2: How to Take Blood Pressure). The toolkit may be used by educators or as self-learning modules.
- Learning Plan
- Module 1 "The Basics of Blood Pressure and Supporting the Patient" provides a theoretical overview of blood pressure including hyper- and hypotension, risks for hypertension, impacts of hypertension and role of the care provider.
- Case Studies (Module 1) – Three case studies have been developed to support learning. Each case study has a participant and a facilitator version. The case study questions are designed to demonstrate achievement of the evaluation criteria.
Oral Health Videos for Long Term Care
Members of the Seniors Health Research Transfer Network Oral Health Community of Practice produced 13 education webinar-based videos on various oral health topics for long-term care.
Stroke Network of Southeastern Ontario: The Brain, The Body, and You Workshop Series
This 4-session interprofessional, continuing education workshop series is designed for regulated and unregulated frontline care providers caring for stroke survivors and other complex client populations in the community, long-term care and other care settings. This continuing education program can be easily individualized by selecting the particular module(s) needed to meet the identified learning needs. It may be offered within existing academic settings or in other educational settings such as the workplace. The 4 modules are each 4 hours in length. The module topics include:
Stroke Care - Prevention to Life after A Stroke
Nutrition, Swallowing, Feeding and Hydration
Communication and Behaviour
- Communication Presentation & Speaker Notes
- Communication Materials
- Behaviour Presentation
You may use this education program within any existing educational settings or the workplace.
Southeastern Ontario Stroke Network: Tips & Tools for Everyday Living A Guide for Stroke Caregivers (Video Series)
Six education videos have been developed by stroke care champions in Southeastern Ontario. These videos are designed to complement popular sections of the Tips and Tools for Everyday Living: A Guide for Stroke Caregivers (2010) and education programs currently underway across Ontario and Canada. Five of these videos are designed for front line staff and one has been developed for family and community education.
Recognize & React to the Signs & Symptoms of Stroke for Health Care Providers
Meal Assistance & Hydration
Cognitive, Perceptual & Behavioural Problems
Central East Stroke Network: Stroke Care Posters for LTC
A series of posters focusing on stroke care best practices. These posters were developed for LTC by the Stroke Network of Southeastern Ontario.
- Blood Pressure
- Cognitive Perception
- Post Stroke Depression
- Meaningful Activity
- Stroke Prevention
Aphasia Institute Introduction to Supported Conversation (SCA™) eModule
This is a short self-paced online module. It is a prerequisite for Aphasia Institute workshops and is hosted on the Aphasia Institute Community Hub, an online platform that enables healthcare professionals to register for professional training and to join webinars.
Hot Topics in the Community
Community Stroke Rehabilitation refers to rehabilitation services received after discharge from the inpatient hospital setting. This part of the stroke continuum includes services received in the outpatient department and in home. Community Stroke Rehabilitation does not include community reintegration services (i.e. supported conversation groups, exercise and falls prevention programs etc). The Canadian Stroke Best Practice Recommendations outline several recommendations on the core elements of community stroke rehabilitation services.
Rehabilitative Care Alliance also has a non-stroke specific definition of Community Based Levels of Rehabilitative Care which is broken down into "progression" and "maintenance streams". Community Stroke Rehabilitation services after a stroke would fall into the "progression" category of this definition. Community reintegration programs conducted by allied health professionals would align with the "maintenance stream" (i.e. supportive communication programs). The Rehabilitative Care Alliance also has a useful listing of all of the rehabilitative care services in Ontario which can be found here.
Several important initiatives were also undertaken by the regional stroke networks. In 2015, work on identifying the available community stroke rehabilitation models in Ontario was undertaken. Specifically, the purpose of this work was to amalgamate the knowledge and lessons learned from the development, implementation, and successes of existing and emerging programs in an attempt to inform and guide the development of future models. The Community Stroke Rehabilitation Models in Ontario was released by the Ontario Stroke Network on July 4, 2016.
Stroke rehabilitation in the community and outpatient setting was also identified as a provincial priority by the eleven regional stroke networks in Fall 2016. To address this priority, a working group from the stroke networks was formed and the resulting components of this work include:
1. A resource tool outlining methodology to do an estimate demands analysis for stroke outpatient/community rehabilitative services based on a region's own geography.
2. Summary of common emerging facilitators and change ideas that outpatient (OP) programs have implemented to meet stroke best practices.
3. A decision making algorithm to assist clinical teams to determine what factors to consider when referring patients to existing programs.
These deliverables are now available on the CorHealth Ontario website.
Physical exercise post stroke can help to lower a person’s risk of subsequent stroke. Participating in exercise classes within the community allows the stroke survivor to build a social network, reducing social isolation and improving community reintegration. Canadian Stroke Best Practice Recommendations on Transitions of Care (2019) highlight that people with stroke should be encouraged to participate in evidence-based community exercise programs.
Numerous resources are available to facilitate the implementation of quality community exercise programs for persons with stroke. One resource that is available is the Ontario Stroke Network Post Stroke Community Based Exercise Guidelines. This document considers many components of providing an exercise program for persons with stroke such as medical clearance, screening, class structure, supervision, exercise principles, program evaluation and much more.
Need help designing a program for stroke survivors? Numerous evidence based exercise programs have been designed for easy implementation. Some examples of already designed exercise programs include:
- The Together In Movement and Exercise (TIME™) program, developed by Toronto Rehab, is a community based exercise program for persons with balance and mobility issues. This program involves the joint cooperation of both the community organization and a licensed healthcare provider. A toolkit and license can be purchased online to assist you in starting up a TIME™ program in your community. The West GTA Stroke Network can help connect you with local healthcare providers who can assist with the training and running of the program.
- FAME is a community-based exercise program developed for people with stroke who have some standing and walking ability. This program has shown to improve mobility, cardiovascular fitness, arm and hand function post stroke. A physical therapist or occupational therapist instructed the patient in the program, but the patient did the program independently.
- The Nortwestern Ontario Stroke Network developed the Fitness Instructor Training Program: Community-Based Exercise for People Living with Stroke. This resource is an instructor training package in DVD format with the goal to provide a standardized, competency-based approach to training. Completion of the training program enables non-health care professionals to deliver an exercise program based on best practice to people living with stroke. This strategy is one way to utilize the expertise of physiotherapists, while more fully integrating community program into the continuum of stroke care.
- Graded Repetitive Arm Supplementary Program (GRASP) is a community-based group upper extremity program. This functional program of upper extremity strengthening, fine motor tasks and repetitive functional tasks has demonstrated improvements in arm and hand function (Chedoke Arm and Hand Activity Inventory, Action Research Arm Test), use of the hand (outside of therapy) and grip strength.
Strong evidence also exists to support the use of aerobic activity after stroke to improve walking speed and endurance, increasing exercise capacity, increasing muscle strength, reducing vascular risk, improving cognition, and emotional well-being. Health care providers should try to incorporate aerobic activity across the continuum of care. One resource available to providers to learn about incorporating aerobic activity is Aerobic Exercise After Stroke. An online module to support the implementation of the Aerobics Guidelines can be found here. A guide for persons with stroke about the benefits of aerobic activity titled How Aerobic Activity Can Help You After A Stroke is also available.
There are numerous other education resources and webinars which may be important to exercise providers working with persons with stroke.
The following webcasts are available on the topic of exercise post stroke through the Central East Stroke Network.
- Four Birds with One Stone: Reparative, neuroplastic, cardiorespiratory and metabolic benefits of aerobic exercise post-stroke. Presenter: Dr. Michelle Ploughman.
- What’s new in AEROBICS? Updates to the Aerobic Exercise Recommendations to Optimize Best Practices in Care After Stroke. Presenter: Dr. Ada Tang.
- What are fitness coordinators’ and instructors’ experiences working with healthcare partners in the Together in Movement and Exercise (TIME) program? Presenter: Dr. Nancy Salbach.
Some individuals attending an exercise class may have communication difficulties as a result of their stroke. The Aphasia Institute has numerous resources for providers to learn about supported conversations including the Supported Conversation eModule.
Motor, sensory, cognitive or visual impairments from stroke can limit a person’s ability to drive. Many persons with stroke have questions about return to driving after stroke. The resumption of driving is addressed in the Canadian Stroke Best Practice Recommendations Transitions and Community Participation Post Stroke Module (2019). These recommendations cover education, screening, assessment for fitness to drive, and rehabilitation for return to driving.
The West GTA Stroke Network Community Resource Booklet provides a list of service providers in the West GTA and surrounding areas that can help get clients back on the road. A full list of Driver Assessment Centers across Ontario can be found on the Ministry of Transportation Website.
Several additional resources are available on the topic of return to driving after stroke that are useful. These include:
Many Stroke Survivors have questions returning to work post-stroke. Returning to Work post stroke is addressed in the Canadian Stroke Best Practice Recommendations Transitions and Community Participation Post Stroke Module (2019).
Several additional resources are available on the topic of return to driving after stroke. These include: