Stroke Recovery Association of BC AGM WELCOME! COORDINATOR’S SESSION O C T O B E R 2 7 , 2 0 1 2 9 : 0 0 - 1 2 : 0 0
A Big Thank You! Thank You… for all your hard work, commitment and involvement in helping improve the quality of life of Stroke Survivors and Caregivers in BC! for your contributions this past year in better understanding where we’re at and where we need to go to become a stronger support for stroke survivors and their caregivers in BC!
Agenda 9:00-9:30: Arrive & mingle; Icebreakers 9:30-10:20: Presentation re defining 'Stroke Recovery'; summary of Branch Profiling/Regional Coordinator Project & future direction; Q & A 10:20-10:30: Coffee/Snack Break 10:30-11:15: "Neuro-Rehabilitation in Stroke" by guest presenter: Amit Kumar (Neuro-Occupational Therapist), with Q&A 11:15-12:00: Coordinator Brainstorm Session on Practical Ways to Promote Stroke Recovery
It’s all in a name… STROKE RECOVERY ASSOCIATION OF BRITISH COLUMBIA
Defining our Name STROKE Sudden death of brain cells in a localized area due to inadequate blood flow/oxygen (due to blood clot or hemorrhage) RECOVERY The act or process of recovering Restoration to a former or better condition ASSOCIATION A group of people organized for a joint purpose BRITISH COLUMBIA Population: 4, 631, 362; 944,735 sq km; Multi-Cultural; ~6500 strokes/year
DEFINING ‘STROKE RECOVERY’ Stroke Recovery is the process by which people who have had a stroke recover to the best of their ability; improve their independence and quality of life and have respect, inclusion and support as they become reintegrated into their home community .
DEFINING ‘STROKE RECOVERY’ A process of improving a Stroke Survivor’s… 1. Independence: a lack of reliance on another for physical existence or emotional needs; freedom from control of another 2. Quality of Life: well-being (multi-faceted), environment, physical & mental health, education, recreation & leisure, social belonging; Reduction of disability and increase in function, participation & activity 3. Community Reintegration: the ability to share in community life- physically, culturally, socially; and be valued
REQUIREMENTS OF ‘STROKE RECOVERY’ Long-term community based support Education and supportive counseling to help survivors & caregivers cope with the burden of stroke and role changes Provide opportunities to participate in community
REQUIREMENTS OF ‘STROKE RECOVERY’ Support with: Physical recovery Aphasia and other speech, language and communication problems Needs such as memory, communication, socialization and productivity Volunteers: Education and support of involved volunteer leaders & community at large
SRABC’S VISION & MISSION VISION Every stroke survivor in BC has respect, inclusion, and support in their home community. MISSION STATEMENT Through its local Stroke Recovery Branches, SRABC is committed to assisting stroke survivors and their caregivers throughout the province to improve their overall quality of life.
THE PURPOSES OF SRABC 1.Through its local stroke recovery branches, to assist stroke survivors and their caregivers throughout the province to improve their overall quality of life and remain living independently . 2. To increase awareness within the community of the impact of stroke . 3. To raise awareness in the community of the services offered throughout the province to stroke survivors and their caregivers. 4. To act as a resource for hospitals and for people concerned with the effect of cerebro-vascular accidents on individuals and their families. 5. To plan and promote programs of education and of assistance to stroke survivors in British Columbia. 6. To disseminate information on stroke prevention . Reference: Constitution of Stroke Recovery Association of BC
ARE WE ACHIEVING OUR PURPOSES? HOW DO WE KNOW? 1. COLLECT RELEVANT INFORMATION 2. ACCESS RELATED RESEARCH 3. USE STANDARDS, GOAL SETTING & OUTCOME MEASURES
1. Information Collection via Branch Profiling What did we collect? Branch Membership, Demographics, Programming, Governance, Volunteers, Coordinator’s Role, Fundraising, Location, Contracted services, etc. Community stakeholder opinions re gaps Why collect information? To provide a baseline of what & how things are done now To know where support is needed To know what’s working well & what’s not To understand where there are gaps in our service model
What did we learn? SRABC serves only ~600 of the >6500 new stroke survivors/year in BC 14000 12000 10000 Stroke Survivors who do NOT use 8000 SRABC services 6000 Stroke Survivors served by SRABC 4000 2000 0 1 Year 3 Years
What did we learn? Declining & aging membership & attendance Stroke survivors: 750 in 2010 to 605 in 2012. Caregivers: 183 in 2010 to 161 in 2012.
What did we learn? Our membership average age seems to be increasing. There is a general lack of understanding of what the Stroke Recovery Association is and its relationship with its members and the Stroke Recovery Branches. There is no consistency in program delivery, in terms of intake criteria and process, length of programs, frequency, content or qualifications of person delivering the programs. There has been no standardized program model to follow for content and no written guidelines on how to deliver the program. Responsibility for Branch program delivery varies greatly Branch by Branch.
What did we learn? Branches rarely set annual goals, develop a budget or plan for programs. Most of this, where it exists, is done informally. Ultimately, program delivery at Branches is based upon the individual culture, history, programming of each Branch rather than a set of standardized delivery models for each component. Very few of our Branches have Governing Committees as described in our Bylaws. The predominant method of decision making is going along with what a majority say they want to do. Higher expectations of all involved stakeholders (re the services/programs we provide) , including funders
2. Accessing Stroke Related Research : BC Stroke Strategy Service Delivery Framework Guidelines on community reintegration Standard 14.0-17.0: Integrated & coordinated partnership between Health Regions & Community Service Providers to help support transition into community Standard 18.0: Community stroke service providers will maintain a data collection system that includes key indicators that measure effectiveness of their services Programs should promote life participation in social & community activities Examples of wellness focused rehab groups: SR Support groups, chronic disease self-management groups, MOST programs, exercise programs, stroke education programs
3. Using Standards, Goal Setting & Outcome Measures How do we know what best practice standards are in stroke recovery? Use up-to-date research & knowledge to guide SRABC programming via Professional Advisory Committee How can we use those standards in planning & programming? Support branch programming through goal setting, budgeting & implementation of standards How can we assess needs and measure outcomes? Through surveys & interviews with BC stroke survivors & their caregivers & various community partners
SRABC’s Professional Advisory Committee Mandate: provide expert counsel and strategic advice to the Board of Directors, in matters regarding content and delivery of Stroke Recovery programs and initiatives, and regarding international, national, provincial and regional health planning and policy issues that affect Stroke Recovery Association of BC’s strategic direction.
SRABC’s Professional Advisory Committee Members Casey Crawford – President, Stroke Recovery Association of BC; media & marketing specialist with Canada Wide Media Dr. Barbara Purves – Assistant Professor UBC School of Audiology and Speech Sciences Deborah Rusch - Manager, Patient Programs, Research & Health Promotion - BC & Yukon, Heart and Stroke Foundation of Canada Dr. Jennifer Yao - Medical Manager, Acquired Brain Injury Program and the Adolescent Young Adult Program at GF Strong Rehab Centre / Clinical Assistant Professor Division of Physical Medicine & Rehabilitation, Residency Program Director Sacha Arsenault – Regional Stroke Strategy Leader, VCH/PHC Tim Readman - Executive Director, Stroke Recovery Association of BC / OT Clinical Instructor, UBC Faculty of Medicine, Rehabilitation Sciences
Practical Implications for Branches Next Steps: SHORT TERM RECOMMENDATIONS Assist Branch personnel with branch goal-setting Provide support in reaching established goals Assist in setting an annual budget Increase quantity and quality of Branch volunteers for program delivery and branch administration/organization
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