WHAT WE HEARD: CHARTING A COURSE FOR SUCCESSFUL

COMMUNITY REINTEGRATION AFTER STROKE

Authors: Gwen Brown 1, 2, Deborah Bowes 3, Dan Brouillard 3, Victoria Cameron 4, Patti Dixon-Medora 5, Rachael Henry 6, Dorthy Ann Horton-Ritchie 3, Shelley Huffman 1, 2, Greg Killough 7, Lee Marchildon 8, Cally Martin 1,2 . Shannon McCallum 6, Bonnie Molinski 9, Phyllis Montgomery 4, Kathleen Pratt 10, Jennifer Rider 11, Beth Steinmiller 12, Patty Tye 13, Florence Whiten 3 1. Stroke Network of Southeastern Ontario 2. Kingston General Hospital, Kingston, ON 3. Stroke Survivor, Southeastern Ontario 4. Laurentian University, Sudbury, ON 5. South East Community Care Access Centre, Kingston, ON 6. SEO Acquired Brain Injury System Navigation, Providence Care, Kingston, ON 7. Heart & Stroke Foundation, Ottawa, ON 8. Community Care for South Hastings, Belleville, ON 9. Quinte Health Care, Belleville, ON 10. VON Greater Kingston Site, Kingston, ON 11. Stroke Survivor & Caregiver, Southeast Ontario 12. Quinte & District Rehabilitation, Belleville, ON 13. Community & Primary Care, Lanark, Leeds & Grenville, Brockville, ON

Background Engaging Participants Results Recommendations

• The majority of individuals living with the effects Q Sort Exercise 107 individuals participated in the consultation The SNSEO’s recommendations emerging from this of stroke reside in a community setting, where the process: consultation focus on: • enhancing services greater duration of their recovery journey occurs. • mix of ages, genders, time since stroke event and • building linkages and connections urban/rural residence • supporting service providers with tools and • The Stroke Network of Southeastern Ontario • 43 stroke survivors, 24 caregivers, 40 health care resources providers (SNSEO) initiated a broad consultation process in • providing education and raising awareness.

April 2015 to identify priority areas for change that The findings and recommendations emerging from

would support stroke survivors and caregivers “Involvement in decision-making is important. this report will help drive regional priorities and through the challenges of reintegrating into the I’ve gone through a life-changing event, and I influence local change. The SNSEO will integrate community following want to continue to be a driving force in where my the report’s recommendations into the SNSEO a stroke. life is going.” Stroke Survivor Regional Stroke Workplan. Oversight will be

provided by a Regional Stroke Steering Committee and a Community Reintegration Leadership Team • This consultation built (a regional community advisory committee that on the outcomes of a Supporting Discussion Five themes emerged: includes clients and caregivers). previous community • Person-Centred Skilled Stroke Care & Rehabilitation consultation held in Questions • Individual Well-Being & Meaningful Engagement These recommendations have important implications for all individuals and organizations 2007. 1. What made your most important areas • Community Co-Navigation so important? working toward the shared goal of ensuring that 2. Are/were these areas met when you • Supported Mobility in the Community stroke survivors and caregivers receive the right returned to the community? • Access to Supports & Services care, at the right time, in the right place, to stay well 3. Are there any areas that are important in their own homes for as long as possible. Methodology to you that were not captured in this exercise? “We need consistent, skilled providers with 4. What experience and high levels of expertise, including Conclusions things/activities/people/organizations medical, psychological, and social support. It Participants have most helped you reintegrate into doesn’t help the recovery to have different the community? • Stroke survivors providers: providers need to be committed to the • The consultation identified client-centred, evidence- 5. What is the single most important thing • Caregivers (e.g. family members) person and follow-up, with one person to based themes and recommendations that will inform you would like to see change to help • Health care providers coordinate services.” ~ Caregiver the work of organizations to collaboratively improve persons who have experienced a stroke community reintegration following a stroke. Surveys, Interviews, Focus Groups, Q Sort successfully reintegrate into the

• Electronic Surveys (Health Care Providers) community? • The report’s findings and recommendations are • Individual interviews, focus groups (Survivors and supported by evidentiary best practices discussed in Families) seminal documents & discussion papers of the • Q Sort Exercise and Supporting Discussion: Ontario Ministry of Health and Long Term Care • Participants received 30 statement cards and (MOHLTC) and the Heart and Stroke Foundation ranking template (HSF): • They ranked each statement from less  Canadian Stroke Best Practice Recommendations important to more important “One central person to go to is (HSF 2016) answering “What supports community needed, someone to coordinate reintegration?”  Quality-Based Procedures: Clinical Handbook for things and know what’s Stroke (MOHLTC 2015) • Structured questions were used to inform available. You find out by subsequent discussions and to provide a more  Patients First: A Proposal to Strengthen Patient- Centred Health Care in Ontario (MOHLTC 2015) in-depth understanding of participants’ yourself, but it takes a little experiences with reintegration. while. It’s frustrating.” ~  Ontario’s Action Plan for Seniors (MOHLTC Stroke Survivor 2013) Data Analysis- Themes  The Older Adult Strategy (MOHLTC 2015) • Q Sort results analyzed by Laurentian University  South East LHIN Integrated Health Services Plan • Supporting Discussions reviewed for themes by 2016-2019 SNSEO • Results collated by Stroke Network of SEO Consultation Report Access the Full Report • Validation of themes via advisory committee, It’s important to be able to do what you love, to literature review and alignment with seminal find something that you love in this life. It documents on community reintegration gives you a sense of accomplishment, a reason • Report prepared on themes and recommendations for existence. ~ Stroke Survivor The Stroke Network of Southeastern Ontario  Projects at https://www.strokenetworkseo.ca/projects