caregivers

Recipes for Change

Genevieve Obarski, (Recently retired) Executive Lead, Program ImplementationG obarski bio pic

I’ve enjoyed cooking since I was a teenager — almost as long as my 40-year career in health care, from which I retired at the end of June. The latter portion of this career was spent helping create and drive positive change in the healthcare system through quality improvement, first in the United States, and then in Ontario. 

Just as there are many ways to roast a chicken, whip together a savoury pesto, or bake a chocolate cake, there are many ways to go about creating meaningful change at a system, organizational, provider, patient and family caregiver level. I have had the privilege of seeing just such positive change during my work with The Change Foundation, by working alongside organizations and communities in the PATH project and Changing CARE partnerships. Engaging in this work over the past 10 years crystallized key ingredients for successful and meaningful change.

As I reminisce on my career — the challenges, triumphs and people that helped promote positive change, and prompted by the whimsical retirement gift given to me by my Foundation colleagues pictured on the right – I wanted to share what I consider Recipes for Change: Gen’s Way!

Image Recipes for change

  • Prepare: Head chefs or senior leaders, set a few key priorities. What does the organization need to improve experiences for patients and their families? A chocolate cake, a pasta dish, or something else. Be sure to clarify why that dish or those priorities are important for the organization.
    • Everyone in the organization should be hungry for the dish. Are the providers, staff, families and patients ready for the dish and, if not, what needs to be in place to prepare them? This includes things like training, awareness, empathy and time to build relationships.
    • Gather the key ingredients – space, people, training and time that you will need to create the meal.
  • Combine: Involve the sous chefs, the dishwashers, the prep cooks. A head chef can’t create meals in isolation; it takes a whole team, communicating with each other, working together in trusted relationships with a shared vision.
  •  Add: Assume and embrace the notion that the people eating the food are the experts of what tastes good to them. They should be invited in to help you create the dish. After all, a dish is only as good as the people eating it say it is. Why create it in the first place it if it doesn’t taste good to the people you want to serve the dish to? This is the premise of co-design. 
  • Pre-Heat: It is the head chef’s role to fix any broken equipment that would prevent or delay completion of the dish. This may involve removing regulations, processes or people that are barriers to creating the dish.
  • Season to taste: Encourage local flavour additions and flexibility. Allow for trial and error to find out what tastes good, adjust cooking times, try alternate ingredients and spices to create a dish that reflects local tastes and sensibilities.
  • Simmer & taste: Don’t wait until you think you have achieved perfection to serve the meal. It doesn’t have to be perfect to taste good and to be nutritious.
  • Serve: Those who manage policy processes and funding in the healthcare system must give organizations, and their communities, permission, financial support, flexibility and the autonomy to create the dishes that are tasty and nutritious for their organization, and those they serve. When communities are empowered to make changes, patients, family caregivers and providers thrive.

I am so honored to have shared this last course of my healthcare career with colleagues and friends at The Change Foundation, and with the patients, caregivers and providers who nourished and sustained the PATH and Changing CARE projects.   

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.

Click to download full report

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.

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

Ontario’s first Young Carers Forum

In November 2017, The Change Foundation hosted Ontario’s first Young Carers Forum – bringing together 20 young carers and over 60 professionals, policy makers and researchers to talk about priority actions needed to support young carers in the important role they play in health care, in society and at home.

Throughout the day young carers were asked to share their experiences, journeys, and stories, so that we can all work together to drive meaningful change. For many of the young carers, 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.

Through the discussions, the following five priority areas for action were identified and voted on by all participants:

  • Increase awareness and understanding of young carers.
  • Work on better ways to identify young carers and link to the education system
  • Build an alliance of young carers organizations
  • Work with the Ontario government to ensure that young carers are included from the outset of the new caregiver organization
  • Influence an inter-ministerial and inter-governmental collaboration to support young carers

Working in partnership with caregivers and health care providers, our goal at The Foundation is to fundamentally change the way the health care system interacts with caregivers, and shine light on the vital but often unrecognized role of family caregivers, including young carers.

Young Carers Forum

Videos:

Voices of Ontario’s Young Carers

Highlights from Ontario’s First Young Carers Forum

Abbigail’s Story

Ontario young carer Liam answers –
Why is raising awareness about young carers important?

Ontario young carers Amy & David answer –
What do you want other young carers to know?

Ontario young carer Stephane answers –
What advice do you have for other young carers?

Ontario young carer Alissa answers –
How do you cope with being a young carer?

Media Stories:

  • Metro Morning (Emily’s young carer story)
  • Metro Morning (The Foundation’s Christa Haanstra speak to CBC’s Metro Morning about Young Carers and The Foundation’s role)
  • CBC.ca/Up North (Alissa’s young carer Story)

Inventory:

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

This needs to spread like wildfire: A path forward for young carers in Ontario

Christa Haanstra, Executive Lead, Strategic Communications and Young Carers

“As a young caregiver, you often feel like you’re on your own.”

Those are Emily’s words, but they may as well have been spoken by any of the 20 other young carers we had in the room at our recent Young Carers Forum, the first time in Ontario that young carers, researchers and policy makers were brought together to start planning a way forward for young carers.

As the caregiver conversation gains momentum in Ontario, it’s important for us to not allow our province’s half a million young carers to be left behind. Too often, this sub-population of family caregivers – which has its own issues and needs related to schooling and age and just being a kid – is forgotten.

“No one should ever have to make the choice between their family and their future,” said another young carer at the forum. He’s right—we’re asking too much of young carers without giving them anything in return. 

The Forum was an opportunity to start changing that.

We wanted to hear directly from young carers, and we most certainly did. In fact, I think we all learned something valuable that day: Don’t underestimate young carers because of their age. These children and youth are wise beyond their years, and they will be the change they want to see in the world. We just need to listen.

And we did, and it was a privilege to hear these mature and articulate young carers tell their stories, and it was a privilege to hear their ideas for change. Theirs are stories that need to be told, and theirs are ideas that need to be implemented.

We can’t be cynical about this. We need to start with the knowledge that we weren’t wasting our time at the Forum. There are too many people listening—Ontario’s Premier Kathleen Wynne told us as much in a welcome video and Ontario’s Patient Ombudsman Christine Elliott attended the entire Forum, and even spent her lunch hour with the 20 young carers, hearing their stories in more detail. There are too many young carers who shared their experiences and who demand to be heard.

It’s time for change.

But what should that change look like? Here’s what we heard from the young carers at the forum:

  • We need to build awareness that young carers are everywhere. They should be recognized and valued. This is where we need to start.
  • We need more supports for young carers in the worlds of education, health care and social services, and they need to be available, reliable and consistent. In the words of young carer Emily, “don’t make me go find them.”
  • We need to create safe places for young carers, but we need to think about how to create these places and where. We need to realize we can’t just wave a magic wand and make something “safe.”
  • We need more programs for young carers. We heard from some of the programs that already exist in Ontario at the forum, and they’re mostly organizations with small budgets and large results.
  • Young carers need more resources. And by that, I mean money. Health care spending is directed at current priorities. We need to all work together to make young carers a provincial and national priority.
  • Collaboration is crucial here—young carer issues cross a variety of sectors: education, health care, social services, community care. We need an integrated approach. This will be a challenge because that’s not how government is used to functioning.

How do we get all this done? For me, that means listening to the words of 14-year old Abbigail, and her advice to young carers:

  • Don’t be afraid of telling people about your life
  • Talk to people you trust
  • Do things you normally enjoy to keep your self-esteem up
  • Stay true to yourself
  • Don’t let others bring you down

Let’s start there, and let’s keep moving this forward. We have a job to do to make young carers a priority now – and we need to grab some attention. So let’s go. This is just the beginning.

To quote a speaker at the forum: “This needs to spread like wildfire.”

WHAT’S BEING SAID

Crystallized over the last 10 year - check out @gfobar's key ingredients for successful and meaningful change in our new blog Recipes for Change: bit.ly/2LroBdH