NEW Optimizing Activity and Community Participation following Stroke

Stroke is on the rise in Canada with over 108,000 strokes occur in Canada every year. ² Stroke is a leading cause of adult disability, with 947,895 people 20 years of age and older estimated to be living with the effects of stroke in Canada.³ In Canada, one-third of individuals with stroke, usually with transient ischemic attack (TIA) and milder strokes, are discharged back to the community directly from the emergency department.⁴ Of those individuals admitted to acute inpatient care, 39% will be discharged to their homes without support services, and an additional 19% will be discharged to their home setting with some support service referrals, 15% will be transferred to an inpatient rehabilitation service, 8% will be transferred to long-term care or complex continuing care.⁵ For those who had access to inpatient rehabilitation, the median length of stay was 29 days, 74% were discharged home, with a median Functional Independence Measure [FIM] efficiency of 0.84 FIM points gained per day.⁵

Ultimately, most individuals who experience a stroke will return to the community, to live independently or with some degree of support. The complexity and needs of individuals living in the community following stroke and their families has been increasing with shorter lengths of hospital stay and longer waits for community services. Several interdisciplinary team members and services are often required by individuals recovering from stroke. These individuals and their families have reported that coordination and integration of services are often major challenges as they try to navigate community healthcare services. They report at times feeling as though they have fallen through the cracks and not being able to meet their rehabilitation goals as a result (Community Consultation and Review Panel 2024). In addition, social determinant factors such as socio-economic status, education, and geographic location can also pose additional barriers to accessing care.

The CSBPR 7^th edition of the Rehabilitation, Recovery and Community Participation following Stroke module has been reorganized to generally align to the International Classification of Functioning, Disability and Health (ICF) Framework. Due to the large size of this module, the 7^th edition of the Rehabilitation, Recovery and Community Participation following Stroke module has been divided into three parts:

• Part One: Stroke Rehabilitation Planning for Optimal Care Delivery
• Part Two: Delivery of Stroke Rehabilitation to Optimize Functional Recovery
• Part Three: Optimizing Activity and Community Participation following Stroke

This module, Part Three: Optimizing Activity and Community Participation following Stroke, reflects the growing and changing body of research evidence available that focuses on person-centred care, optimizing an individual with stroke’s return to their community, longer-term stroke recovery, and engaging in active and meaningful participation. This module emphasizes the importance of regular healthcare follow-up, optimizing secondary prevention strategies, the assessment, diagnosis and management of mood disorders such as anxiety and depression, assessment and management of cognitive status, sleep health and post-stroke fatigue. Further, this module addresses more personal issues that are important and meaningful to individuals recovering from stroke, including return to driving, vocational roles, relationships and sexuality, life roles, leisure, and social participation.  Advance care planning and palliative care are also considered.

This module emphasizes the need for coordinated and seamless systems of care that extend beyond the first few months following stroke, building on progress achieved during the initial recovery stages to enable seamless community reintegration. A main goal of these recommendations is to enable individuals with stroke to achieve as much independence as possible and successfully resume life roles and leisure activities. Successful longer-term planning across all transitions requires integrated and coordinated people-centred efforts by all members of care teams involved with individuals who have had a stroke, their families and caregivers, and the broader community. Active engagement of the individual and family at all stages of planning and goal setting is essential.

There is an urgent need to address the gap in supporting social and community participation. Health systems must ensure equitable access to services and resources that facilitate not just physical recovery, but also the resumption of social roles, leisure pursuits, and community engagement that are critical for optimal long-term wholistic health outcomes and adaptation after stroke. The topics addressed in this module are often overlooked in the recovery process and may cause significant challenges for individuals with stroke and their families as they progress from short-term recovery to optimizing longer term health, adaptation and participation. The physical, emotional, psychological, social and environmental needs of individuals with stroke are considered throughout this set of CSBP recommendations. Considerations for equity in accessing and receiving needed services and facilitating linkages to resources must be addressed at all stages of recovery.

The detailed methodology and explanations for each of these steps in the development and dissemination of the CSBPR is available in the Canadian Stroke Best Practice Recommendations Overview and Methodology manual available on the Canadian stroke best practices website at https://www.strokebestpractices.ca/recommendations/overview-methods-and-knowledge-exchange.

Conflicts of interest

All potential participants in the recommendation development and review process were required to complete confidentiality agreements and declare all actual and potential conflicts of interest prior to participation. Declared conflicts of interest were reviewed by the co-chairs of the CSBPR Advisory Committee and Heart & Stroke staff to assess the potential impact. Those with significant conflicts with respect to the module topic were not selected for writing group or reviewer roles.

Participants who have conflicts for a particular topic area were identified at the beginning of discussions for that topic and were recused from voting. If a co-chair is in conflict, they were recused from their responsibilities for that discussion and another non-conflicted participant assumes the role for that discussion and vote. Heart & Stroke senior staff members participated in all writing group discussions and intervene if they perceived an untoward bias by a writing group member. 

Conflict of interest declarations for the Rehabilitation, Recovery and Community Participation following Stroke, Part Three: Optimizing Activity and Community Participation following Stroke module writing group members can be found in Appendix One.

1. Reorganization of the Rehabilitation Module: The Stroke Rehabilitation, Recovery and Community Participation module has been divided into three parts, and the topics have been generally restructured to align with the International Classification of Functioning (ICF) framework for improved clarity and flow.
2. Conversion to GRADE ratings: In moving to GRADE ratings, some consensus-based recommendations from the 6th Edition have now been moved to Clinical Considerations 
3. Increased Evidence: The evidence supporting multiple recommendations throughout this module have been upgraded to a High Level of Evidence coupled with a Strong Recommendation. 
4. Relationships, Intimacy, and Sexuality: Expanded considerations regarding relationships, intimacy, and sexuality in the content of rehabilitation and longer-term recovery have been included.
5. Expanded Inclusion of Healthcare Professionals: A broader scope of healthcare professionals have been engaged who have expertise to support the ongoing management of medical co-morbidities and other medical needs as part of inpatient and community rehabilitation programs.
6. Utilization of validated tools: Further emphasis on the use of validated assessment tools across rehabilitation care, including recreation, leisure and social assessments.

Heart & Stroke gratefully acknowledges the Rehabilitation, Recovery and Community Participation following Stroke: Part Three: Optimizing Activity and Community Participation following Stroke writing group leaders and members, all of whom have volunteered their time and expertise to develop these new recommendations; M. Patrice Lindsay RN, PhD for her expertise and efforts as senior writer and editor of these recommendations, module and manuscript; and the senior advisors Dr. Anita Mountain, Dr. Debbie Timpson and Dr. Colleen O’Connell. Members of the Canadian Stroke Consortium, Can Stroke Recovery Trials Platform, Canadian Neurological Sciences Federation and the Evidence-based Review of Stroke Rehabilitation team were involved in the development of these recommendations. These recommendations underwent external review, in whole or specific parts respective of expertise, by Paula Barker, Joyce Chen, Jill Congram, Kenneth Curtis, Luciana de Olivera Nerves, Celina Ducroux, Hillel M Finestone, Margaret Grant, Mary Halpine, Anne Harris, Sylvie Houde, Zainab Al lawati, Dorothy Kessler, Jaylyn Leighton, Swati Mehta, Stuart Miller, Jennifer Milliken, Asha Shelton, Shamala Thilarajah, Ankur Wadhwa, Ismalia De Sousa, Marika Demers, Sarah J. Donkers, Kate Hayward, Alyson Kwok, Alexander Lo, Lauren Mai, Susan Marzolini, Erin McHattie, Catherine Sackley, Lisa Sheehy, Hardeep Singh, and Ricardo Viana.  We thank the Canadian Stroke Best Practices Advisory Committee members: Anita Mountain (Co-Chair), Dylan Blacquiere (Co-Chair), Eric E. Smith (Past Chair), Gord Gubitz, Dar Dowlatshahi, Margie Burns, Emma Ferguson, Thalia S. Field, Farrell Leibovitch, Christine Papoushek, Michael D Hill, Pascale Lavoie, Erin McHattie, Colleen O’Connell, Debbie Timpson, Theodore Wein, Manraj Heran, Katie Lin, Richard H Swartz, Adam Kirton, Ruth Whelan, Trish Helm-Neima, Kathleen McKeen, Shannon Bayluk, Janice Daitchman, and Katie White. System implications were reviewed by Mary-Lou Halabi, Leslie James, and Geoffrey Law. The performance measures were reviewed and updated by members of the Heart & Stroke health systems quality council including Patrice Lindsay, Debbie Timpson, Sacha Arsenault, Shannon MacDonald, Raed Joundi, Alison McDonald, Colleen O’Connell and Amy Yu. We acknowledge and thank members of the CSBPR Vascular Cognitive Impairment 7^th edition, 2024 writing group for their contributions. We acknowledge and thank Norine Foley and the evidence analysis team at workHORSE; Laurie Charest of Heart & Stroke for her coordination of the CSBPR teams and processes; and Francine Forget Marin and the Heart & Stroke internal teams who contributed to the development and publication of these recommendations (Translation, Communications, Knowledge Translation, Engagement, Health Policy, and Digital Solutions).

Community Consultation and Review Panel

Heart & Stroke is especially grateful to the members of the Stroke Rehabilitation Planning for Optimal Care Delivery and the Delivery of Stroke Rehabilitation to Optimize Functional Recovery Community Consultation and Review Panels who worked in tandem with the scientific writing group for this module and shared their personal experiences and insights on living with stroke and optimizing recovery and health outcomes. CCRP members include Allan Beaver, Suzanne Belanger, Suzanne Cady, Sheila Farrell, Katie Fung, Margie Hesom, Elizabeth Pease, Wes Reinhardt, Lori Beaver, Glen Brouwer, Maureen Brouwer, Janice Daitchman, Lilli Law, Ed Mitchell, Jennifer EJ Monaghan, Urainab Peerbhoy, Alda Tee (writing group liaison), and Kara Patterson (writing group liaison).

Jennifer K Yao (First Author, Co-Chair), Nancy M. Salbach (Second Author, Co-Chair), M Patrice Lindsay (Corresponding Author, Senior Editor), Michelle LA Nelson, Jing Shi, Colleen O’Connell, Ruth Barclay, Diana Bastasi, Mark I Boulos, Joy Boyce, Geneviève Claveau, Heather L Flowers, Norine Foley, Urvashy Gopaul, Esther S Kim, Alto Lo, Alison M McDonald, Amanda McIntyre, Colleen O’Connor,  Kara K Patterson, Tricia Shoniker, Theodore Wein, Janice Wright, Brenda Yeates, Jeanne Yiu, Chelsy Martin, Rebecca Lund (Co-Corresponding Author), Sarvenaz Mehrabi, Dylan Blacquiere, Debbie Timpson, Richard H Swartz, Eric E Smith, Gail A Eskes, Aravind Ganesh, R Stewart Longman, Treena Blake, Sabrina Celarie,  Lee-Anne Greer, Jasmine Masse, Ronak Patel, Gayla Tennen, Manav Vyas, Benjamin Ritsma, Ada Tang, Louis-Pierre Auger, Jenna Beaumont, Rebecca Bowes, Imane Samah Chibane, Sarah J Courtice, Rhina Delgado, Melanie Dunlop, Kimia Ghavami, Teresa Guolla, Deborah Kean, Sandra MacFayden, Phyllis Paterson,  Elyse Shumway, Alda Tee, Clinton Y H Tsang, Stacey Turnbull, Katie White; Anita Mountain (Senior Author); on behalf of the Canadian Stroke Best Practice Recommendations Advisory Committee, in collaboration with the Canadian Stroke Consortium, CanStroke Recovery Trials Platform and the Canadian Neurological Sciences Federation. Canadian Stroke Best Practice Recommendations: Rehabilitation, Recovery and Community Participation following Stroke Part Three: Optimizing Activity and Community Participation following Stroke, 7th Edition, 2025; Toronto, Ontario, Canada: Heart and Stroke Foundation.

• Optimizing Activity and Community Participation following Stroke guideline publication 
• Writing Group Members and External Reviewers (Appendices One & Two)
• Optimizing Activity and Community Participation following Stroke Definitions and Descriptions

1. Mood and Depression

• Evidence Table and Reference List 1

2. Sleep Health and Post-Stroke Fatigue

• Box 2: Examples of Specific Energy Conservation Strategies
• Evidence Table and Reference List 2a
• Evidence Table and Reference List 2b

3. Cognitive Rehabilitation for Individuals with Stroke

• Evidence Table and Reference List 3

4. Health Management, and Return to Driving and Vocational Roles

• Evidence Table and Reference List 4a
• Evidence Table and Reference List 4b

5. Participation in Social and Leisure Activities Following Stroke

• Evidence Table and Reference List 5a
• Evidence Table and Reference List 5b

Appendix One: Rehabilitation, Recovery and Community Participation following Stroke Writing Group 2025

Appendix Two: Optimizing Activity and Community Participation following Stroke External Reviewers 2025

Appendix Three: References