caregivers

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.

 

Miles apart, but more similar than we think

Christa Haanstra, Executive Lead, Strategic Communications

In May 2018, I attended the International Conference on Integrated Care in Utrecht, the Netherlands. While I was there, I met with Dutch organizations and professionals who work with family caregivers.

I quickly learned that the approach and infrastructure to support family caregivers in the Netherlands has many parallels to the system in the UK. Like the UK, there is legislation outlining caregivers’ rights. In addition, the caregiver support movement, in both countries, started as a grassroots movement and is supported by many health-related charities. When legislation was introduced, in both jurisdictions, it gave the efforts a notable boost in working towards having supports and services widely-available throughout their country.

The parallels extend even further – the Netherlands also has a national caregiver organization called Mezzo, and the responsibility for creating caregiver programs and supports resides with local townships and municipalities. 

When The Change Foundation started our journey with family caregivers, we drew clear parameters for our work: to improve the identification, recognition and integration of family caregivers within healthcare settings. However, The Foundation knows all too well that caregiver needs extend far beyond the healthcare system.

Our focus is complementary to the work of other organizations such as the Canadian Association of Retired People (CARP) and The Vanier Institute. We monitor and collaborate with these organizations as they advocate for changes to support caregivers in other aspects of their lives, including the financial implications, and the ability to balance their career and work obligations alongside caregiving responsibilities. Slowly but surely, we are seeing positive changes such as the recent legislative changes to employee leave eligibility and tax credits for caregivers.

Although I didn’t find an equivalent of The Change Foundation in the Netherlands, I found the next best thing – The Expertise Centre on Informal Caregiving. The Centre is led by two organizations: Movisie and Vilans.

I met with a representative from each organization, who were also the co-authors of a 2015 Caregiver Action report commissioned by the Netherlands government. The report title In voor Mantelzorg: samen sterker in zorg en ondersteuning – translates to ‘strengthening the collaboration between care organizations and informal caregivers, resulting in a joint contribution to quality care and client support.’

Co-design and common sense underpinned the approach to this report and its recommendations. It was developed through a collaboration of 80 health and social care agencies, who collectively engaged with more than 6,000 caregivers.

The Netherlands faces similar challenges to Ontario in getting healthcare organizations on board to collaborate with and support caregivers. Challenges in points of transition, use of system language instead of plain language, and systems and reward structures that don’t place value on family caregiver interactions by providers. With so many similarities, there’s a lot that we can learn from their progress.

Through their engagement process, they came to a common agreement on the issues and identified eight areas for change and improvement across the full spectrum of health, social and municipal services. The eight priority areas are:

  • Better collaboration
  • Common understanding of collaboration
  • Improving involvement for informal caregivers
  • Better information for clients and informal caregivers
  • Identifying caregiver burnout earlier
  • Removing prohibitive rules and regulations
  • Equipping informal caregivers
  • Use of digital communication and technology

From the beginning, they were clear that they would not use a ‘one size fits all’ methodology. Using decentralized decision-making meant that each organization could choose what area(s) their efforts would focus on and customize supports to meet the specific needs of caregivers within their setting. With a collective understanding of the needs and priorities, each organization took a different approach to programs and implementation and yet they still achieved broad-scale positive change.

For me, this refreshing thinking was inspiring. And the collective impact was clear.

In my opinion, the most impressive initiative were the partnerships with post-secondary institutions. The goal of these partnerships is to inform the curriculum and equip future healthcare providers to integrate family caregivers into their practices, right from the outset of their career. For those of us working to influence large-scale system change, it is clear that professional education and curriculum play a critical role in changing practice and culture within multiple healthcare disciplines. The ability to collaborate and inform changes to the curriculum is much more elusive. I will be watching with interest as the impact of this foundational component of the Netherlands action plan to improve caregiver experiences becomes evident.

The In voor Mantelzorg report is available online (use Chrome translate browser to read an English version), including some of the factsheets and tools:

  • 3-minute burnout assessment tool
  • Tools and factsheets for each sector of health and social care
  • Approach to post-secondary curriculum influence
  • Workbook for Provider Training   
  • Path to Vitality

The Netherlands’ commitment to co-design and approach to identifying, recognizing and supporting family caregivers is inspiring. It offers hope for a better future for caregivers, and reinforces the importance of The Change Foundation’s multi-partner, co-design and iterative approach. It provides important insights and approaches that health and social care providers, administrators, policy makers, caregivers, patients and researchers can build on as we work towards improving supports and experiences for family caregivers in Ontario.

Integrating the caregiver voice: Reflections on the IFIC Conference

Jodeme Goldhar, Executive Lead, Strategy and Innovation

In May 2018, Carole Ann Alloway, a family caregiver, and I partnered to develop and present a keynote address at the International Foundation for Integrated Care (IFIC) annual conference in Utrecht, The Netherlands. A few months after our presentation – Transformation through integration: The Answer is With Patients and Their Families – I asked Carole Ann to reflect on her experience.   

Jodeme:

First of all, Carole Ann, it was an honour to have the opportunity to co-present with you in Utrecht. It truly was a collaborative experience. What was your reaction when you were first asked to co-present at the IFIC conference?

Carole Ann:

It was overwhelming at first because there were so many things I wanted to say. But to get the most value for the audience, I realized we had to choose a key focus. With The Change Foundation’s knowledge, background and guidance, we started brainstorming our message — that the caregiver voice must underpin integration — and the best way to get it across. 

Jodeme:

We know that health systems around the world see integration as a major opportunity for transformation. But perspectives on how to go about this transformation vary. Can you share how we approached this?

Carole Ann:

Well, from my point of view, and from The Change Foundation’s point of view, patients and caregivers need to be partners every step of the way as this transformation happens.

Our goal for this presentation was to be provocative and inspire people to truly understand that patients and caregivers are the experts on the physical, emotional and spiritual aspects of their lives. It’s important for healthcare professionals, researchers and policymakers to recognize their value, and to work in partnership with them.IFIC slide

We used this idea, together with The Change Foundation’s expertise on integration and system change around the world, to create a storyline. Within this storyline, we thought about how best to build and think about our presentation to address the topic from many different angles: the system, research, policy and everyday practice.

It was a pleasure working as a true collaborator on this presentation with you.  

Jodeme

On that note, we know the importance of working in partnership with caregivers. As a caregiver involved in this project with us, how did you feel about our partnership?

Carole Ann

I felt heard and valued sharing my lived experience. Together, we were able to help get my message across in a way the audience would understand. I didn’t want to just tell my story, I wanted people to leave with a sense of urgency to truly reflect on their own work habits, cultures and see how they could respond to what was possible by including their own patients and caregivers in the decision-making process and as a member of the team.

Jodeme

It was important to us, as we made this presentation, to give the audience a real sense of the caregiver experience. How did you approach this? 

Carole Ann

I didn’t just give a play-by-play of my caregiver experience. I also told the story of what could have been. I imagined my experience as if my husband’s care had been integrated and if the team was focused on what’s most important to me and my husband. I shared my reflections on the problems that could have been avoided, healthcare dollars saved, outcomes that could have been improved, as well as how the experience for my husband and I would have been so much better. I also believe if my journey had played out in this imaginary way, healthcare professionals would have had more job satisfaction.

It was important to me that the audience leave knowing that it isn’t hard to do. The answer is simple and everyone has a role to play in making a difference, and could start tomorrow. 

For more simple ideas that can make a big difference, watch the Caregivers Wishlist videos created by The Change Foundation in partnership with Carole Ann.

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.

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.

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

WHAT’S BEING SAID

All three hospitals in our first case studies report understood the power of stories to unite patients, families and professionals & remind them of the reasons they want to improve care. Learn more about the hospitals profiled in the case studies: bit.ly/2Stemsl pic.twitter.com/qXkJiPW1ep