The Caregiver Toolkit: March of Dimes

1. The Caregiver Toolkit: March of Dimes Gail Mores Director of National & Provincial Programs

2. Background Context March of Dimes provides a wide range of services to people with physical disabilities through our three pillars of service – Independent Living, Employment Services and National/Provincial Programs. Our vision is to create a society inclusive of people with physical disabilities. Our mission is to maximize the independence, personal empowerment and community participation of people with physical disabilities.

3. Background Context Programs & Services Peer support (stroke recovery, post-polio) Aphasia – York Durham Aphasia Centre Conductive Education DesignAbility® Recreation & Integration Services Information and advocacy

4. Background Context FICSS (Family Informal Caregiver Stroke Education and Support) – May 2012 Developing Interventions to support caregivers of Stroke Survivors – March 2012 YDAC (York-Durham Aphasia Centre) – April 2012

5. FICSS Research Team Primary Investigator:Gail Mores, Director of National and Provincial Projects, March of Dimes Canada Co-Investigator:Rhonda Whiteman, HHS Stroke Best Practice Coordinator Co-investigator: Dr. Jenny Ploeg, Associate Professor, School of Nursing, Faculty of Health Sciences, McMaster University Coordinator: Patricia Knobl March of Dimes Canada, Facilitator: Miriam Cahn, VON Hamilton Ann Lindley, VON Hamilton

6. FICSS Background “Stroke occurs suddenly without any warning leaving stroke caregivers unprepared to assume the role of caregiver.” Research has shown that ... • Caregiver stress is the leading cause of institutionalization of stroke survivors. • After a stroke, caregiver information and emotional training needs are extensive yet frequently unmet. • Interventions that help caregivers develop coping skills, problem solving skills, and support seeking skills are most beneficial to decrease negative effects of care giving. (Ontario Stroke System, FICSS pilot study research grant proposal April 2010)

7. FICSS Project The Hamilton Burlington Stroke Network identified need for education specific to stroke caregivers and hosted a series of focus groups to validate the need/identify key content areas 4 Week Education and Support Program with other Stroke Caregivers Each session is 2hr small group guided discussion and problem solving session on the topic area facilitated by experienced facilitator Opportunity to learn and share with 8 – 10 other stroke caregivers Onsite Respite available if required for stroke survivor

8. The Caregiver Toolkit & FICSS • The CGPL will be used as both a process and outcome evaluation tool to analyze program. • Focus on how caregivers of stroke survivors were meaningfully included, and the outcomes of this inclusion, in the following domains: • The design and development of the program • The content of the program • The delivery of the program, • In self-perceived outcomes for the program participants, and • Future iterations of the program

9. The Caregiver Toolkit & FICSS • Facilitate a better understanding of secondary outcome indicators 1) decreased caregiver stress, strain and burden; 2) improve their problem solving ability through increased knowledge of strategies and community services; 3) increase role satisfaction as well as in their relationship with the care recipient, and 4) increase perceived quality of life of the caregivers.

10. The Caregiver Toolkit & FICSS Using the CGPL for evaluation will: 1) Strengthen the evaluation process of the FICSS pilot program through addressing caregivers’ experiences as framed by CGPL categories 2) Identify innovations, strengths, and gaps of the FICSS pilot program through use of thematic analysis organized by CGPL categories

11. Developing Interventions to Support Caregivers of Stroke Survivors Using CGPL in developing funding proposal Identified a need for an early intervention to support caregivers of stoke survivors in the acute or rehabilitation phase, up to 3 months post-discharge Multiple types of interventions may be required Develop and/or pilot test a variety of interventions (3-5) designed to respond to needs of caregivers of stroke survivors in the initial phase of the survivors’ recovery Explore SRPG interventions Use evaluation of FICSS in proposal writing

12. YDAC York-Durham Aphasia Centre Offers day programs New social worker hired Interested in establishing Caregiver groups using MODC’s Peer Support model Cultural opportunities/challenges Employing the CGPL to help frame the programming for the Caregiver Peer Support groups

13. The Caregiver Toolkit and MODC Programming Power point presentation with FICSS Steering Committee that includes representatives from Hamilton Health Sciences, VON Canada – Hamilton, Ontario Stroke Network, McMaster University and MODC Presentation to MODC Programs Management Team Draft evaluation template using CGPL created and shared Planning meeting with YDAC management team in April will use the CGPL to frame the discussions.

14. Knowledge Translation & Uptake: Ontario Context Working to bring together community groups and agencies but also support groups that exist throughout the community, usually volunteer, survivor-based groups Joint work with hospital colleagues Connection with VON Connections with NHCC

15. Knowledge dissemination & Next Steps Will guide future development of strategic planning and programs Publication of results Results will inform future funding initiatives for ‘train the trainer’ Will be used throughout peer support network; staff training for peer support Seeking provincial and national partnership opportunities Information from Symposium will inform these projects

16. Benefits “Using the CGPL increases your awareness of gaps and it forces you to ask more questions and the result is new knowledge and ideas coming from that process”.

17. Benefits “People like it first and foremost because it makes sense and its practical”. Methodical Facilitates structured planning process Hyperlinks for background information Relevant to caregivers in general, not just caregivers of older adults Forces you not to make assumptions Simple to use, intuitive

18. Challenges Length Perhaps create a guide on which categories it is OK to skip in certain circumstances, and which ones shouldn’t be?

19. Tips & Recommendations Have it on screen and connected to the Internet Explore whole tool Fill out CGPL as fully as possible Application works best with a small group of participants at a time

20. Discussion Questions? Gail Mores Director of National & Provincial Programs, Ontario GMores@marchofdimes.ca