Co-Designing A Caregiver Friendly Hospital And Community Cultivating Change: Co-Designing A Caregiver Friendly Hospital And Community December 14th, 2018 Stroke Formal Support Group

Proposed Agenda Welcome & Introductions Who is The Change Foundation? What is the Cultivating Change Project? Discussing Meeting Format Group Topics Next Steps 1 2 3 4 5 6 2

WELCOME & INTRODUCTIONS 3

Who is The Change Foundation? CHANGING CARE Partnering with health care organizations and family caregivers to improve experiences and strengthen Ontario's health and community care systems. The Change Foundation is an independent health care think-tank that works to inform positive change in Ontario’s health care system. The organization is focused on improving the experience for family caregivers in Ontario’s health and community care system. The Change Foundation is funding the Cultivating Change project as part of the Changing CARE initiative. © The Change Foundation 4

The 4 thematic needs of caregivers Better communication and information exchange between caregivers and health care providers. More identification and assessment of family caregivers to determine their needs, abilities, and expectations. Beginning formal recognition of the role family caregivers play in our system by the patient’s care teams and by caregivers themselves. More opportunities for caregiver support and education to develop key care skills, from counselling to medical task training. Communication: Assessment: Recognition: Education: The Change Foundation and our project aim to address four thematic needs of caregivers: Communication—How can we improve communication and information exchange between caregivers and health care providers. Assessment—How can we improve identification and assessment of family caregivers and determine needs, abilities, and expectations. Recognition—Beginning formal recognition of the role family caregivers play in our system by the patient’s care teams and by caregivers themselves. Education—More opportunities for caregiver support and education to develop key care skills, from counselling to medical task training. E: Rounds Project hits Communication, Recognition and Education. 5

What is the Cultivating Change project? One of only four proposals chosen across the province. The Cultivating Change project was selected in Spring 2017 to be part of The Change Foundation’s Changing CARE initiative. Sinai Health System received this grant in partnership with WoodGreen Community Services. The AIM: Healthcare providers and caregivers will work together to improve the caregiver experience in the healthcare system. 6

Cultivating Change Project Streams Community Stroke Palliative Care NICU Spread/Share & Transitions (2019-20) 7

Stroke August - November 2017: Discovery Phase In-depth interviews conducted Themes analyzed How might Bridgepoint in-patient stroke unit become a more caregiver-friendly program? December 11, 2017: Journey mapping and idea development event. March 1, 2018: Stroke Prioritizing Event March 6, 2018: Stroke Advisory Group selected top change idea projects 8

Project teams formed, currently co-designing Stroke Implement: 4 Change Idea Projects Caregiver ID/Circle of Care Caregiver Support Knowing What to Expect Caregiver Training We are here! Project teams formed, currently co-designing Evaluate April 2018: Breakfast Event, Inpatient Stroke Unit provider surveys completed May 2018: Breakfast Event, Outpatient Stroke Team provider surveys completed June 2018: Completed caregiver survey Evaluate impact and refine projects Sustain 9

Caregiver ID/Circle of Care All Stroke Projects Project Name Objectives Caregiver ID/Circle of Care Circle of Care: Improve how caregivers identify who are the health care providers in the patients’ circle of care. Caregiver ID: Improve how providers identify who is in the patients’ support system. Communication: Improve communications between caregivers and healthcare providers. Knowing What To Expect Provide clear and realistic expectations of what caregivers and patients can expect during their rehab journey. Caregiver Training Proactively prepare caregivers to effectively support patients with their health care needs. Caregiver Support Improve supports available to caregivers by creating (1) a support group for caregivers and (2) caregiver peer-peer support opportunities. 10

What is the scope of our project? Project Name Objective Caregiver Support Improve supports available to caregivers by creating a support group for caregivers and caregiver peer-peer support opportunities. 1. Formal Support 2. Informal Support 11

Delivery Model 90 min total 10-15 min  Check-in 20 min  Teaching moment “Evidence” “Clinical” 10 min  Discussion on topic  Questions  Activities 45 min  Problem Solving Techniques (PST) Cycles Addressing a problem related to the group’s theme. - Addressing reality - Exploring all options - Building a plan - Putting it into practice 12

Looking for your feedback Open (“Drop-in”) VS. Closed (Registered Cycle) Group? Number of people in group? Age and Stage of life (Group for 40-something year olds VS. 70-something year olds VS. All age groups welcome) “Where you are at” – inpatient or after returning to home? Time and day of week for group? Location of group in hospital Types of learning materials (i.e. written VS. digital…ability to bring home materials or immediately access them via the internet) 13

Group Topics Order of group topics? 1. Self-Care 2. Navigating the System 3. Changing Relationships 4. Future Planning / A New Normal Number of sessions (ex. 6 sessions, 5th “wild card” session) Can you repeat the same session? 14

Self-Care “Fun” stuff “Not fun” stuff Self-care for the mind (ex. Reading a book) Self-care for the soul (ex. Prayer, meditation, volunteering) Self-care for the body (ex. Exercise, food) “You should take a break”  Burnout, projection from others Self-care on the go / on the unit (ex. Building a portable practice) 15

Self-Care What can self-care look like?  Creating intentionality Self-care across culture Illusions of self-care Communicating needs and boundaries  How to ask for help Gratitude, appreciation for my caregiving Defence of emotions +/- 16

Navigating the System Ministry of Health and Long-Term Care (MOHLTC) – high system overview Sinai Health System  Bridgepoint How did I get here? Bridgepoint’s quirks Local Health Integration Network (LHIN) / Community Care Access Centre (CCAC) “The Plan” – who to talk to and how to talk to them Rights Communication with large / multi-disciplinary teams 17

Navigating the System Data collection Privacy Being “difficult” or getting what you need On the unit At a distance Navigating in English, varying religions/cultures 18

Changing Relationships Sex, intimacy, romance Loss, grief, isolation, loneliness Divorce and separation Working Friends (before stroke / after stroke) Driving New roles, lost roles, obligations Gratitude (or lack thereof) Communication and personality changes (“They aren’t the same person.”) 19

Changing Relationships (Other) Family (dynamics) Spiritual relationships (ex. “Why me?”, “G-d never gives you more than you can handle…”) Anger, resentment Lability (more easily triggered into emotional states) Defences for emotions +/- Trust (new supports, younger/family) Guilt Who is the “boss”? 20

Future Planning / A New Normal Transition planning Goals of rehab (recovery and compensation) A new (caregiver) relationship Resilience, sustaining “you” for the long-term Accepting risk What am I changing in my life? (Not the stroke patient’s life) 21

Future Planning / A New Normal Death, mortality, catastrophic change What if this happens again? Building a new “normal” Uncertainty Changing plans, lost dreams/goals Kids 22

NEXT STEPS 23

THANK YOU! 24