Ontario health

Spotlight on Ontario’s Caregivers Report

Our Spotlight on Ontario’s Caregivers report is the first of its kind in our province. It was inspired by the annual State of Caring report developed by Carers UK, and it builds on our 2016 report, A Profile of Family Caregivers in Ontario.

Through this report, and the survey it is based on, we set out to better understand the experience, profile and needs of family caregivers in Ontario.

The Change Foundation has been working in this area since 2015 with a specific focus on their interactions and experiences with the healthcare system.

Our objectives for this study were to understand:

  • who caregivers are caring for;
  • what tasks caregivers are responsible for;
  • where caregivers are turning for information and support;
  • how caregiving impacts the lives of both the caregiver and the care receiver;
  • how caregivers feel about their role as part of the healthcare team;
  • what additional supports or information could help caregivers in their role.

Our findings from this survey echo what we’ve heard through our other work, including our Changing CARE projects, other research and policy work, and collaborations with other stakeholders. Specifically:

  • Many caregivers don’t self-identify as caregivers, often seeing their caring role as a spouse, child, parent or in-law, but once the role is explained they ultimately do understand the role they play in their family member’s health care.
  • Most caregivers feel they do not have a choice in taking on the role.
  • Caregivers provide a wide range of care and support activities, including emotional support, help with household chores or tasks, and administering medicine.
  • Most caregivers feel that their family member would not receive the same quality of care and would be in worse physical or mental condition if they were not caregiving for them.
  • Caregivers generally appreciate the time they are spending with the person they are caring for, believe they are improving the life of their family member and feel rewarded for what they do by their family members.

We believe that Ontario-specific data is imperative to better understanding the specific situation in our province, so that we can ensure that supports and services truly address the needs of caregivers.

In addition to the survey, which provides us with the caregiver experience in quantitative form, we’ve also set up an online panel of caregivers who we turn to on an ongoing basis to help us bring the qualitative side of the caregiver experience to life. This group also helped to provide us with feedback on issues and themes that we highlight in this report. Although our survey and report will be done annually, the website will be updated regularly, so please check back often for caregiver stories and different takes on the survey data. We’ve even created a section on the site where you can manipulate the data yourself.

 

Learning along the way: Sharing lessons from Changing CARE

Lori Hale, Executive Lead Research and Policy

People often ask us how to truly co-design and engage with caregivers and healthcare providers.

In Lessons from Changing CARE: The Discovery Phase of Experience-Based Co-Design, we do our best to answer that question by presenting 40 practical tips based on what our four Changing CARE teams have learned in their journeys so far.

We learned from our experience with the PATH project that collective learnings should be shared throughout a project’s lifespan, rather than at the end. Now that we’ve just passed the one-year mark of Changing CARE, it’s an ideal time to share what we’ve learned so far. Here are some of the findings from the report:

  • A collaborative and co-designed approach to evaluation and measurement at the outset of the project levels the playing field for all team members and stakeholders.
  • You can’t measure impact if you don’t know what your strategic priorities are, so it’s important to establish priorities and goals early on.
  • Sharing project milestones, successes and failures is key to learning, adapting and co-designing.
  • It’s important to reflect on the lessons learned early on and adapt along the way.
  • Nothing compares to lived experience.

After collectively hearing from over 450 caregivers and over 600 providers during the discovery phase of experience-based co-design, each of our Changing CARE teams has evaluated themes to identify priorities for co-designing improvements and innovations to ultimately improve the interactions between family caregivers and healthcare providers.

This report covers a wide range of these themes, and includes:

  • Tips on executive sponsorship.
  • Lessons on engagement planning with family caregivers.
  • Communication and feedback ideas.
  • Insights on provider engagement.

Is it our hope that others will use and adapt these tips to support their family caregiver and healthcare provider engagement efforts.  

As we continue work with Changing CARE and each project focuses on co-designing innovations and solutions with family caregivers and providers, we intend to share more lessons and tips along the way. 

Up Next: learnings from co-design.

A Wish Come True: The Caregiver Wishlist

Pierre Lachaine, Senior Communications Associate

We often hear that large-scale change is needed in our healthcare system, but it’s rare to come across small changes that can have a large impact.

Picture of CA_WishlistWhen I first started working with Carole Ann Alloway, and I first read her caregiver wishlist – the document on which our videos are based – I knew her ideas could help to change the caregiver experience in Ontario for the better.  

Her solutions were tangible, like giving the caregiver a tailored folder of information before the patient’s surgery to help them get the patient there in the first place, or engaging the caregiver in discharge planning at the hospital. Her solutions were also simple, as the best solutions usually are.

I knew we had something special, and I knew it lended itself to an engaging multi-media approach.

PL Wishlist
Pierre Lachaine, Senior Communications Associate

So we set out together to create the Caregiver Wishlist video.

But we didn’t just want to reflect one caregiver’s experience – In true Change Foundation way, we wanted to co-create something with not just the voice of one caregiver embedded in it. We wanted it to reflect the experiences of as many caregivers as possible. 

So Carole Ann and I set out to put together a workshop with about a dozen caregivers from across the spectrum of caregiving. Caregivers from across the province, of all ages and who care for people with all sorts of illnesses. In the end, interest was so high that we had 16 caregivers join us. 

We used the workshop to road test Carole Ann’s ideas, and to generate some new ideas as well. The discussion was wide-ranging. Caregivers shared their stories – their joys and their frustrations, their ideas to help pave an easier path for future caregivers, and to help give healthcare professionals an idea of what caregivers are going through, and what would help make their caregiving journeys a little bit easier.

After all, caregivers are invaluable to Ontario’s healthcare system, and without them, the system would crumble.

We filmed the videos, and hired a graphic artist to capture the conversation in a visual way.  

Working with Carole Ann was a joy. And seeing Carole Ann’s voice crescendo into a chorus of caregiver voices – each reinforcing the next, while also bringing something unique – was one of the most validating experiences of my career so far.

Co-creation truly is an amazing thing. 

 

In fact, we had such a great experience working together, we decided to create another video – Co-design in Action – a documentary style making-of video, to hopefully inspire other organizations to follow our lead and involve caregiver voices in a meaningful way when they create products about and for caregivers.

So, caregivers, healthcare professionals and healthcare organizations: Watch the videos, and listen to what the caregivers are saying. I hope you’ll see how easy and rewarding co-creation can be, and that you’ll hear something that moves you.

 

Pic of wishlist

Lessons from CHANGING CARE

In 2017, after a long and detailed search, The Change Foundation identified four Changing CARE partnerships from across Ontario to receive funding and support over the next three years to improve the caregiver and provider experience for their communities.

Changing CARE is the “action phase” of The Change Foundation’s Out of the Shadows and Into the Circle 2015-2020 strategic plan—following on our 2015-2016 year of listening and learning from family caregivers and healthcare providers across Ontario.

Now that we’re more than a year into Changing CARE, it’s the ideal time for us to stop and reflect on the collective path we’ve taken so far, and release our learnings on the engagement phase of co-design.

Lessons from Changing CARE: The Discovery Phase of Experience-Based Co-Design focuses on our four teams’ first year of listening and learning from, and co-designing with the family caregivers and healthcare providers in their communities.

As the first in a series of reports focused on learnings and lessons from Changing CARE, this paper describes what the Changing CARE projects have learned during the discovery phase of their experienced-based co-design.

The report features 40 practical tips that are organized in five sections:

  • project planning
  • engagement planning
  • recruitment for engagement
  • engagement
  • post engagement

We hope these tips and lessons along the way help you use and adapt what we’ve learned to help you co-design solutions in your own setting.

We want to see improved caregiver and provider experience all across Ontario, and beyond—This report is the first step on that journey.

Available Downloads

 

 

The Caregiver Wishlist

There are an estimated 3.3 million family caregivers in Ontario – nearly a third of the population – and we know that these numbers are only increasing.

As more and more Ontarians become caregivers every day, we wanted to create something to help them on their caregiver journey, and to help the healthcare providers who work with them.

So, we worked closely with family caregiver Carole Ann Alloway to create The Caregiver Wishlist, a set of videos based on some of Carole Ann’s ideas, and brought to life in a workshop with 16 family caregivers from across Ontario, with diverse caregiving experiences.

We know that no two caregiving experiences are the same, but the wish for better communications, caregiver identification, assistance with system navigation, respect and empathy from healthcare providers, discharge training and more transcend disease, diagnosis and journey.

Becoming a caregiver can be an overwhelming and confusing experience, but knowledge is power. The Caregiver Wishlist discusses some of the things you can expect, and some of the things you can do to make your experience a little less stressful.

Pic of wishlist
       Their journeys, their voices, their wishlist – What’s on your Caregiver Wishlist?

 

The Caregiver Wishlist illustrates the advantages of engaging patients and family caregivers in the healthcare team, as well as small things that healthcare providers can do to improve the caregiver’s, and ultimately the patient’s, experience.

We hope these videos spark transformation and a co-designed approach to patient care, including family caregivers in each step of the patient journey.

 

The Caregiver Wishlist 

 

 

Co-Design in Action

 

 

Revisiting privacy and consent, and making changes along the way

Lori Hale, Executive Lead, Research and Policy

We first took on the issue of Ontario’s privacy and consent rules for caregivers in our 2017 report–Making Privacy and Consent Rules Work For Family Caregivers–after hearing repeatedly that privacy and consent is a barrier faced by many of Ontario’s family caregivers, and is too often used as a crutch for the lack of engagement with family caregivers.

After the launch of the report, The Change Foundation did what we always do, we found ways to package the information in a variety of ways, each targeted at various audiences. We hosted four webinars, we created two audience-specific knowledge products (one targeted at caregivers and one targeted at providers), and we created a variety of social media-specific infographics.

We’ve been pleased to see the response. Since our report launched, it’s been clear that we’ve hit a nerve and are filling an information gap for Ontario’s family caregivers and the providers who interact with them.

During this time, the Embrace Changing CARE team identified the need for a more specific product tailored to the questions that would help both caregivers and healthcare providers working within Ontario’s mental health and addictions system. The reality is that the mental health and addiction care system is different from other parts of the system, and operates under different legislation. In addition, the nature of these illnesses creates different challenges and barriers for family members.

Since then, we’ve been working closely with the Embrace team to create Questions & Answers On Patient Privacy and Consent in The Addiction and Mental Health System in Ontario, a Q&A-style document to respond to many of the specific questions that both the Embrace and The Change Foundation’s teams have heard. The resource provides suggestions and guidance for both family caregivers and health care providers. We greatly appreciate the leadership of the Embrace team in identifying and filling this gap for mental health and addiction caregivers.

The document answers questions related to age for patient consent, the timeframe, expiration and withdrawal of consent, as well as questions related to patient capacity to consent, a healthcare provider’s obligation to disclose and document, and the appointment of a substitute decision-maker.

The goal, not unlike the overarching goal of Changing CARE, is to help family caregivers and health providers understand Ontario’s patient privacy and consent legislation and promote closer collaboration for the benefit of patients, and to support caregivers in their role.

What we learned:

  1. There is an overwhelming need throughout Ontario for widespread education around health care privacy and consent rules—and there is an interest.
  2. These tools highlight and emphasize the importance of including and embracing family caregivers in every step of a patient’s care journey.
  3. The creation of this new resource underscores the Foundation’s belief in being nimble and adapting our thinking and resources to improve the caregiver experience across the Ontario healthcare system.

As we continue moving forward in Changing CARE, we are committed to listening and learning from family caregivers and providers, as well as our project teams—identifying gaps along the way and working together to connect them for an overall improved caregiver, provider and patient experience.

Changing CARE: Success built on a strong foundation

Harpreet Bassi, Senior Program Associate

It’s hard to believe that it’s been a year since the four Changing CARE teams launched their innovative, caregiver-focused projects. 

One year, 15 cross-cutting working group sessions, 17 bi-weekly project managers meetings, and numerous steering committee meetings, to be more precise. Most impressively, across the four teams, more than 650 caregivers have participated, informed and partnered on the change they’d like to see.

Over the course of that year, the teams have gone through their planning phases, completed local discovery and engagement, and moved to design and implementation, all within the context of co-design. 

When we selected the four teams, we were focused on finding partnerships and teams that truly understood the critical role caregivers play in the health care system, and embraced the need for change. What was so interesting—but also caused some hesitation—was that these four projects were so diverse in scope, design and implementation. It wasn’t clear how they’d be able to collaborate and build on each other’s work and learnings.

It didn’t take long to see the magic of how they’d all work together. I think that’s one of the key learnings from our project so far—that when people come together with a common purpose, no matter how diverse the teams are, there’s always something to learn from each other.

There’s no place that this is more evident than at the bi-weekly project managers’ meetings that bring these teams together to share ideas, problem solve, learn from each other and celebrate successes. These meetings have become integral to Changing CARE.

Yes, that’s right. This is a blog post to celebrate meetings.

At their best, these meetings are an open dialogue on how to leverage each other’s experiences and work, and to inform and improve the other projects. This is not to say that these meetings aren’t on occasion simply a laundry list of what the teams are working on. But that’s okay because it’s important for the other project managers to know they are not alone in the day-to-day operations of this type of innovative project. 

There are three things that contribute to the overall effectiveness of the bi-weekly project managers meetings

  1. Shared values: Every phase of these projects is co-designed with caregivers as equal decision-makers alongside providers and administrators. Each of the teams, and their respective organizations and partners, recognize the value caregivers bring to the health system. This is a shared commitment not just to the process of co-design, but to the principles that underpin it. These project teams listen and learn together, are flexible, adapt and embrace ambiguity.
  2. Joint accountability: The project managers chair the meetings and everyone informs the agenda. The project managers make a concerted effort to participate and come prepared to share the work from their projects. The Change Foundation acts as an equal partner by hosting the meeting, contributing to the agenda items and information which would be useful to all the teams, and taking notes.
  3. Operational Efficiency: There is a standing meeting date and time for the entire three-year duration of the project. The project managers know when it is and where to go, there are no surprises. The agenda is posted, The Change Foundation acts as host, and discussion notes are posted following each meeting. We use video-conferencing so we can see our colleagues from across the province.

My two metrics for measuring the success of these meetings are: 

  • No matter how busy, the project managers’ show up for the calls and;
  • No matter how often I ask about cancelling the meetings, the answer is always a resounding no.

Over the past year, I’ve had the privilege to be The Change Foundation participant on these bi-weekly project managers’ calls, and am impressed and inspired by the commitment of these individuals to improve the caregiver experience. 

Thank you Jacobi (Improving CARE Together), Joanne (EMBRACE), Michelle (Connecting the Dots), Jennifer, Susan and Erika (Cultivating Change). 

The Change Foundation’s role in Ontario’s caregiver organization

Cathy Fooks, President & CEO

Today – on Family Caregiver Day – Premier Kathleen Wynne announced the Ontario Ministry of Health and Long-Term Care’s intention to provide $6.5 million in funding for the creation of a caregiver organization in our province.

This was a key recommendation in the report Expanding Caregiver Support in Ontario, authored by Janet Beed, which was released publicly in March 2018. Janet has been acting as an external advisor to the Ministry of Health and Long-Term Care to examine gaps in supports for caregivers in Ontario over the past year, and will serve as the organization’s inaugural Chair.

According to today’s announcement, the Ontario Caregiver Organization will be a “resource for caregivers that will make it easier for them to access a range of services and information.” The not-for-profit corporation will receive financial support, but be arms-length, from the government.

A website has been set up for the organization, where you can learn more, and follow their progress over the months to come.

The Change Foundation’s role in the new caregiver organization

The Change Foundation has played an important advisory role in shaping this organization and we will continue to support it as it opens in 2018.

We exist to innovate and shape emerging areas in health care. Since 2015, we’ve been doing just that by focusing squarely on the caregiver experience in Ontario, as we laid out in our strategic plan, Out of the Shadows and Into the Circle.

We are honoured to offer our advice and expertise, as it is rooted in the knowledge and insight we’ve gained these last few years listening to, learning from and collaborating with family caregivers. That’s the foundation for our understanding of what changes will make the biggest difference to caregivers.

We look forward to seeing the impact this new organization will have on the lives and experiences of caregivers in Ontario.

 

KWynne Announcement

Leadership is key, and other lessons learned from the UK’s Helen Bevan

Cathy Fooks, President & CEO

The way to get stronger is to let go of power, according to what Helen Bevan of England’s National Health System told a group of leaders in Ontario health care at The Change Foundation recently.

That seemingly paradoxical notion made sense to those of us gathered there once we grasped Bevan’s argument that only by shifting to different kinds of power, finding it in the hands of different people and using it in different ways will health systems be sustainable and provide the care patients deserve.

Bevan, the Chief Transformation Officer for the National Health Service (NHS) was the third speaker in a series on integrating care organized by The Change Foundation with partners from the University of Toronto — the Institute of Health Policy Management and Evaluation, the Health System Performance Research Network, and the Dalla Lana School of Public Health. The goal is to create a learning lab of ideas that will help leaders in Ontario integrate care, and we’re sharing insights from these important conversations more broadly through blog posts, to be followed by more in-depth articles in Healthcare Quarterly.

Bevan, who gave her presentation by video link, had three lessons about introducing large-scale change for the three dozen people watching her from The Change Foundation’s board room. The first was on the importance of the language and narratives we use when proposing change; the second, on shifting power and the new approach to leadership that requires; the third was on the choice between structure and agency as the means of bringing about change.

Bevan did not shy away from using the example of a big mistake the NHS made in the use of language for their current redesign. Their choice of the phrase “accountable care organization,” originally used in Obamacare, to describe new local partnerships of health and social services triggered an immediate backlash. Critics warned of “American-style” healthcare and privatization. Some of their work was put on hold as a result and the new name will be integrated care organizations.

Bevan said the incident was a compelling reminder of something she had long known — that to win support for large-scale change, you need to connect with people’s values and emotions, in this case through language and labels that are meaningful for people.

“You know if we had kind of stood back and thought about it, we should never have used the labelling ACO or accountable care, because it’s got connotations around U.S. health care privatization,” Bevan said, adding “You will smile at this, but the new labelling — rather than being an accountable care organization — will be an integrated care organization.”

I was more inclined to sigh than smile, because the incident was such a prime example of what happens when we don’t involve the public in what we’re doing. That’s a failure we’re often guilty of in health care, whether it’s in how we treat one individual or family, or responding to broader public needs.

The second lesson Bevan offered the meeting was that integrated care requires a different approach to leadership. She began by talking about old power, the norm in hierarchical organizations, including health care. She defined it as positional authority, based on commands and focused on meeting goals and standards. New power, by contrast, is based on collaborative relationships and the sharing of goals and ideas.

2 kinds of power

Old power clearly leaves little room for public input, or even the involvement of staff and providers. Moreover, since early efforts to reform the NHS actually put health organizations in competition with each other, moving to new power will require big shifts in leadership thinking, but they are essential.

“There can’t be winners and losers,” Bevan said. “The system has got to win.” Integration will only succeed, she added, if it’s built on relationships based on trust, which make it possible for people at all levels to work together to bring about change.

Bevan’s third lesson was that system-wide change is accomplished not only by structural means such as rewriting rules, setting new standards, or imposing top-down plans for restructuring, but also through agency (empowering people and groups to make positive changes).

Public sector reform over the past 20 years has focused on structural mechanisms, but giving people (or groups) agency to make changes is increasingly popular around the world. It’s faster, for one thing. Also, it brings many more minds to bear on an issue — ideally, the minds of people who work on or near the frontlines and know what the real issues are and what solutions make the most sense.

“We know that diverse groups of people will consistently make better decisions than small groups of senior leaders or experts,” Bevan said. “If we start doing things in different ways, if we start opening up our decision-making processes and we have different kinds of conversations with people, I think we can almost talk ourselves and think ourselves into different ways of doing things.”

This was an idea more likely to draw a smile than a sigh from me — because it shows how patients and families, as well as providers, can be change agents, if systems welcome and encourage them. Bevan called it “building power to make a difference,” and it’s done, she told us, by activating people, by improving their ability to make choices and building capability. If we do that, she said, we can build leaders everywhere.

Raising awareness for young carers in Ontario

Catherine Monk-Saigal, Program and Communications Associate

When we hosted Ontario’s first ever young carers forum in late November, 2017, we shined a long overdue spotlight on Ontario’s young carers. We asked the young carers present—a group that is too often overlooked— to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of them, the forum was the first time they had ever interacted with other young carers, the first time they were asked about their experience, and the first time they felt like the experiences they were sharing could make a difference.

We asked them what action was needed around awareness, identification of young carers, advocacy, and cultural considerations. And what do we need to do to make change happen?

Throughout the day, the most pressing issue became clear: there is a profound and universal lack of understanding and awareness around the role of young carers.

And this lack of understanding is not system agnostic. Young carers experience it throughout the healthcare and education systems. Often, this lack of understanding and awareness translates into stigma and fear. 

What’s surprising about this? And how do we tackle it?

There are very few of us who will never wear the caregiver hat. However, for young carers, this hat is worn at a much earlier age than most.

There is an underlying fear among many young carers about the stigma and misunderstanding of their role. The young carers at the Forum said that often, friends and schoolmates have a hard time understanding that their caregiving role is not a choice–that they have a duty and a responsibility that many of their peers simply cannot understand or relate to. This is largely due to this lack of understanding.

To combat the issue of awareness, one suggestion from the Young Carers Forum was that we celebrate Young Carers Awareness Day on January 25, 2018, like they do in the UK. So that’s exactly what we are doing: a simple social media blitz that we hope will contribute to the growing awareness throughout the province.

We hope we won’t be alone in this. We want you to join the conversation we’re helping to spark online.  

Follow #YCAD on Twitter throughout the month and join the conversation on January 25th at 4 p.m., as we host a tweetchat on young carer awareness co-moderated by Fitsum Areguy, an Ontario Young Carer (see below for more information on the tweetchat).

As we work through our “next steps” as an organization, it is very clear just how valuable and meaningful the act of coming together with a common experience was for these incredible young people. We just need to listen to and read the comments from young carers to realize how important this is.

One young carer said: “This was life-changing. I’ve never talked about my experience before. It’s always about my sister.” Another stated: “I feel like I have made a big influence on the future of young carers and no longer feel alone in my situation.”

We’ve often tweeted and blogged about the lack of supports available to Ontario’s young carers. We are now moving forward with the first step to increase awareness and understanding in the hopes that this will lead to better and more widely accessible supports.

 YCAD tweetchat info

About the tweetchat:

We’re pleased to be hosting our first-ever tweetchat at 4 p.m. EST on Thursday, January 25, 2018—Young Carer Awareness Day.

Here are the questions we’ll be asking:

  1. What are the impacts of being a caregiver on a young person?
  2. How is a young carer’s role different than the role of an adult caregiver?
  3. How do we build awareness and understanding of young carers?
  4. Change is needed. Where do we start?

The tweetchat will be co-moderated by young carer Fitsum Areguy and Christa Haanstra, The Change Foundation’s Executive Lead, Young Carers.

Follow #YCAD, as well as @TheChangeFdn, @fitsumareguy and @C_Hanstra to participate. 

Click to download our Young Carers Awareness Day toolkit 

Click to view full Storify of YCAD tweetchat

WHAT’S BEING SAID

How do Ontario’s caregivers spend their #caregiving time? Find out in our latest report, Spotlight on Caregivers in Ontario – the first report of its kind in our province: bit.ly/2zRU6Jf #onhealth pic.twitter.com/OySgS1WRrV