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“A model for community stroke recovery programs”

“BC Stroke Strategy Rehabilitation & Reintegration”

Principal Investigator, Dr. Tal Jarus, and her research team from the Department of Occupational Science and Occupational Therapy at the University of British Columbia, and the Stroke Recovery Association of British Columbia are teaming up to investigate the effects of participation in a stroke recovery program on community reintegration and life satisfaction for stroke survivors and caregivers.

 Stroke is the leading cause of long-term neurological disability among older adults. In Canada 300,000 persons live with the effects of stroke, which is the number one neurological cause of disability in Canada (Heart and Stroke Foundation of Canada, 2010). More than 90% of these individuals are left with deficits, which significantly and negatively impact both quality of life and individuals’ ability to cope with daily activities of living. Rehabilitation is a vitally important part of recovering from stroke and has been defined by the World Health Organization as a progressive, dynamic, goal-oriented process, which enables an individual with impairments to reach his/her optimal mental, physical, cognitive and social functional level. While there is ample research examining effectiveness of inpatient acute-care stroke rehabilitation, the evidence for the effectiveness of community-based programs and services designed to meet the long-term needs of individuals with stroke is in its infancy, by comparison. The transition from specialized medically-based stroke services to the community where the survivor lives, works, and socializes marks the true beginning of life after stroke.  Stroke Recovery Programs (SRP) exists within the province (many led by the Stroke Recovery Association of BC [SRABC]), in order to facilitate long-term stroke survivor recovery and re-integration post-acute care. SRPs are located in a community setting rather than a hospital or health clinic and provide formal and informal social and recreational activities, peer support and educational in-services. Anecdotal evidence suggests community-based recovery programs are beneficial to stroke survivors yet, surprisingly enough, examining the effectiveness of community based programs that provide long-term support service has not been addressed in the literature. Therefore, the purpose of this project is to evaluate the effectiveness of the North Shore Stroke Recovery Center (NSSRC) as an innovative model of long-term support and how it impacts community reintegration and life satisfaction for stroke survivors and caregivers.

Stroke survivors and their caregivers living within the North Shore Community are being invited to take part in this innovative research study.  Stroke survivors will be asked to complete questionnaires and perform physical and cognitive assessments related to their health and wellbeing. Participation will be needed at three points of time, at the beginning of the study (now), 6 months and 9 months. The research assistant is able to meet you at your house or at another chosen location on the North Shore to complete the questionnaires and assessments. As an appreciation of your participation, an honorarium will be provided at each time point.

Stroke survivors are eligible to participate in this study if they meet the following criteria (1) are living in the North Shore community and have had a stroke (2) are able to follow three commands in a row in English (3) are able to provide informed consent (4) do NOT have limited performance in life activities due to factors other than stroke (e.g. orthopedic problems).

If you are interested in participating or would like more information, please contact: Alanna Ferguson, Research Assistant.

Email: stroke.study@ubc.ca  Phone: 604-822-7412

UPDATE:

This project is now underway in partnership with UBC. The purpose of this project is to evaluate the North Shore Stroke Recovery Center (NSSRC) program. We will be trying to discover how well it works as a source of long-term support and how it helps people get back into community life. We will also be asking questions to learn how it improves quality of life for stroke survivors and caregivers. We will use what we find out to help us to improve the program and other programs all over BC. Wendy Johnstone is an important member of the research team and Christine Alexander is coordinating things at the North Shore Stroke Recovery Centre. Ali and Tarra/Natalie have been providing important financial management and admin support to this project. It is funded by the Ministry of Health and supervised by Heart and Stroke Foundation/BC Stroke Strategy.

Purpose of the project:

• To evaluate a model for the delivery of a pre and post-hospital discharge stroke recovery program. Our evaluation question is: What impact do pre and post-hospital Stroke Recovery Programs have on the various stages of community re-integration for stroke survivors and caregivers?
• The project will take place at the North Shore Stroke Recovery Centre (NSSRC) which is based in North Vancouver, BC, and delivers services to the entire North Shore area.

Final Report due: September 1st 2012

For more information regarding participation please see their poster:

NSSRC Poster

Read Full Report:  Bridging the Gap Final Report April 2011

UPDATE:

START Program

STroke Assessment, Rehabilitation, and Transitions

A stroke program focused on facilitating independence and community reintegration for people who have have recently had a stroke and are living in the Abbotsford and Mission area. This is a partnership project between Fraser Health Authority, SRABC provincial office and SRABC Abbotsford Branch and the Abbotsford Parks, Recreation & Culture Commission. It represents a great opportunity to demonstrate how stroke recovery programs make a difference in the lives of stroke survivors.

START Brochure

Executive Summary

The transition from specialized medically-based stroke services to the community where the survivor lives, works, and socializes marks the true beginning of life after stroke.  Community re-integration represents the longest period of stroke survivorship when viewed from the perspective of the whole continuum of stroke. The transition process for stroke survivors and caregivers back into BC’s communities is informal with no established and proven pathways.

Fraser Health Authority’s Integrated Health Network Community Wellness Initiative provided the Stroke Recovery Association of BC (SRABC) with a grant to establish a system for connecting with stroke survivors within Fraser Health Authority while in hospital, in order to help link them to stroke recovery resources in their community post-discharge.

We began with a theory that offering “reachback”[1] activities, including a modified hospital stroke recovery program and a peer visitation program could strengthen community linkages for stroke survivors between hospital and home. After reviewing relevant documents and literature on community reintegration as well as findings from this project (Section 6), it became very clear that a more systemic approach is required to bridge the gap from hospital to home.

Although this project was very exploratory in nature, a key theme emerging from the findings was the acknowledgement that community reintegration and comprehensive discharge planning are equally important as acute and rehabilitation stroke care.

British Columbia is home to talented and skilled medical and rehabilitation experts who save people who have had a stroke every day.  However, what point is there in saving lives if when upon returning home stroke survivors and their families have a poor quality of life or limited independence because they weren’t supported physically, mentally and emotionally in their recovery?

Using qualitative information from 14 in-depth interviews with key informants in the FHA health and community sectors, the project explored the current Stroke Care Pathway at Surrey Memorial Hospital. It also examined the determinants of an effective community linkage and discharge planning process during a stroke survivor and caregiver’s transition from hospital to home.

Findings from the project support that a care pathway for stroke survivors and their families from hospital to home is very complex and highly individualized.  Although many respondents felt the current care pathway was working well, several barriers were highlighted including:

-        Challenges in completing assessments in a timely manner.

-        Limited Human Resources.

-        Information through transfers can get lost.

-        Disconnect between hospital discharge and community-based services.

-        Difficulty in accessing the right type of help at the right time.

-        Need for formalized patient and family stroke education.

-        An expressed desire from health providers to connect stroke survivors to the community while still in hospital.

Health and service providers need to recognize that there is no “discharge” from stroke recovery.  A proposed Community Reintegration Care Pathway is provided as a very tentative approach to define the process from hospital to home (see Appendix B. Community Reintegration Pathway Model). Key aspects to a successful transition include a community-based approach to hospital discharge involving follow up with stroke survivors once back home, on-going support to assist with system navigation and access to support and services in the community.

Future recommendations include:

-        Increasing the capacity and resources of SRABC’s Stroke Recovery Branches.

-        Improving liaison between community organizations serving stroke survivors.

-        Creating a focus on the Community Integration aspect of the BC Stroke Action Plan.

-        Closing the gap between discharging patients and ensuring that their needs are met in the community.

-        Adequate provision of translation and interpretation services and cultural sensitivity resources.

-        Implementing the second phase of this study – a Community Stroke Linkage Program, using the Care Pathway.

Log In

One of the first stroke recovery programs (1967) was started in Tunbridge Wells, England by a stroke survivor and his wife at the suggestion of the local speech therapist.  With the proliferation of stroke recovery programs throughout the U.K., the Chest, Heart and Stroke Association was prompted to hold a one-day conference in London in March 1976 entitled “Stroke Clubs – a modern concept in rehabilitation”.

The first Stroke Club in North America, organized under the direction of the American Heart Association, started in Galveston, Texas in 1968 with a membership of seven people.

British Columbia

In 1969 Mr. Bill Goodwin encouraged a stroke recovery branch to be formed out of the Adult Day Care Centre at St. Andrews United Church, North Vancouver. The first formal group emanated from stroke survivors attending the Margaret Fulton Day Centre in North Vancouver in 1974.

In 1975 and 1976 stroke clubs were opened in Nelson, Vancouver and Richmond.  In 1976 these clubs became known as the Lower Mainland Stroke Association.  Representatives of the Association met with a group of health care professionals to form an Advisory Committee to foster improvement of services to stroke people. With funding from the Vancouver Foundation a study was commissioned.

The study recommended that a co-ordinator be employed to develop stroke programs throughout BC Funding for a two-year pilot project was subsequently obtained from the BC Heart Foundation.  The grant allowed for the establishment of a provincial office to create the existing stroke clubs and to organize additional clubs.

Phyllis Delaney was hired as the Provincial Co-ordinator and office space was secured in Vancouver.

In 1979 The Lower Mainland Stroke Association became incorporated as the Stroke Association of BC.  In 1993 the Association’s name was changed to the Stroke Recovery Association of British Columbia. Today there are 37 branches in British Columbia.

                          Easter B.L.A.S.T. 2012

                                         Stroke Survivors 

                    “Building Life After Stroke Together”

    Easter camp for stroke survivors, caregivers and friends!

                            Good Friday to Easter Monday

                                         April 6th – 9th, 2012

                 $225.oo includes coach from lowermainland,

                           meals, bedding, and all activities.

                    Register online and get more information

                                    www.TurtleTalk.ca

Annual Naramata Retreat

On June 1-3 2012 we will be holding our usual three-day retreat at Naramata, BC for stroke survivors, caregivers, volunteers, branch committee/board members and coordinators attend from all parts of BC. This year there will be no ‘Directors Meeting’ because we now have the new downsized Board of Directors instead. The whole focus will be on social, recreational and therapeutic activity. We are currently putting together a planning committee to organise the event. If you want to be part of the committee or to volunteer to help at the retreat please contact Tim Readman at the Provincial Office by phone at 604-688-3603 or by email at execdir@strokerecoverybc.ca