Out of the Shadows and Into the Circle: Partnering with Family Caregivers to Shift Ontario’s Health Care System
“Our health care system is dependent on unpaid caregivers. And the reality is that these caregivers are often not recognized or respected for the role they play. At best, there is an inconsistent approach to family caregivers. In many cases, they are not even considered as key members of the care team.”
The Change Foundation Out of the Shadows and Into the Circle
The Change Foundation’s new strategic plan, Out of the Shadows and Into the Circle, builds on past work focused on improving experiences for patients and family caregivers as they move across Ontario’s healthcare system. Although many ideas and trends were evident during our previous work, there was one consistent theme: the vital, yet often unrecognized, role of informal or family caregivers in the system. We are committing to shining a light on this area. Based on what we know already, we believe that valuing and recognizing family caregivers as integral members of the health care team should be an urgent focus for our health system.
Our strategic goal: to improve the experience of family caregivers as they help their family members transition through and interact with Ontario’s health and community care systems.
Research tells us that most Ontarians have been or will be a family caregiver at some point. Twenty-nine percent of the provincial population – or 3.3 million people – provide some form of support, assistance, care or enrichment to a family member or friend. Both women (53%) and men (47%) in Ontario take on caregiving roles.
We believe, that by recognizing, facilitating and supporting the role of the family caregivers, we can improve patient experience, coordinate care more effectively and create an environment in which the highest quality health care can be delivered. This plan was developed with input, insight, and ideas from over 100 people, including our Strategic Plan Renewal Working Group, our Sounding Board and TCF’s citizen’s panel, PANORAMA.
Our agenda will evolve and flesh out in the first year, The Change Foundation will focus on listening and learning to better understand the family caregiver experience as part of the patient experience and to identify promising models or initiatives for effective and collaborative engagement between family caregivers and providers. This exploratory work will help us scope out and identify our specific projects and policy work that will be the focus in the remaining years of the strategic plan.
15 % of the population is elderly
29 % of Ontarians provide some form of caregiving support
48 % of family caregivers are looking after parents or in-laws
30 % of caregivers are part of the “sandwich generation” of Ontarians provide some form of caregiving support
Key work:
DEVELOP A FRAMEWORK FOR UNDERSTANDING A FOCUS ON FAMILY CAREGIVERS AS PART OF THE PATIENT EXPERIENCE.
We will use the framework to illustrate how the focus of the Foundation fits within the big picture and the important work of other organizations. This will help us identify where our focused contribution will have the biggest impact.
LEARN MORE ABOUT FAMILY CAREGIVERS IN ONTARIO.
We will ask: who they are, what they need, who is helping them and how they are helped, what are common challenges for all family caregivers, what are unique challenges for sub-groups of family caregivers.
ENGAGE WITH FAMILY CAREGIVERS, PATIENTS AND PROVIDERS.
We want to learn more about the challenges that family caregivers encounter when they interact with providers and the health and community care systems and in particular, we want to learn more about the issues facing diverse and multicultural families. We will also engage with providers to understand their frustrations with the status quo.
DEVELOP AN ENGAGEMENT PLAN FOR MOVING FORWARD.
We will develop an engagement plan to best listen and learn family caregivers, patients, providers and system representatives as we further define and implement our strategic plan.
LEARN ABOUT INNOVATIVE PROVIDER AND FAMILY CAREGIVER PARTNERSHIPS AND INITIATIVES.
We will undertake a systematic review of the literature and informally published reports and documents to learn more about innovative initiatives within Ontario and in other jurisdictions where providers and organizations are collaborating with family caregivers and patients for mutual benefits. We will use this reconnaissance to shape and identify our priority initiatives.
LEARN ABOUT EFFORTS TO INTEGRATE HEALTH AND COMMUNITY CARE.
We will also monitor efforts in other jurisdictions to join-up and better integrate health and community care given how this integration can help to improve the experience of family caregivers and patients.
Social & Health Practice Ottawa 