Family Caregivers

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

Privacy and consent issues for caregivers and providers in Ontario

Lori Hale, Executive Lead, Research and Policy

When The Change Foundation embarked on our engagement with family caregivers and health and community care providers in 2015, our goal was to better understand the caregiver experience — particularly in their interactions with providers.

We heard from both caregivers and providers that privacy and consent requirements were a real challenge, and that privacy and consent legislation was often used as a reason for not sharing patient information with the family caregiver:

  • Family caregivers told us that providers often claimed that they couldn’t share health information for privacy reasons.
  • Providers told us they were uncertain about privacy and consent requirements, and what they could and couldn’t share with caregivers.

It was clear that caregivers and providers would benefit from a resource that would address myths and realities of privacy and consent. Our document supports a better understanding of the consent and privacy requirements set out in the Personal Health Information Protection Act, 2004 and the Health Care Consent Act, 1996.

We know that providers want to work effectively with family caregivers, and with a clearer understanding of the consent and privacy rules, providers and caregivers can work together to optimize care and support for patients.

I worked closely on the resulting report with a leader in this field, Mary Jane Dykeman of Dykeman and O’Brien Health Law, who provided the legal expertise and the initial drafts on which the subsequent report — Making Privacy and Consent Rules Work for Family Caregivers — is based. I also had the opportunity to work with nine family caregivers who reviewed and provided important insights on early versions of this resource.

Before finalizing and releasing the report, we tested the resource with groups of family caregivers and providers. This included offering webinars for our Changing CARE partners, where we invited interested family caregivers and health care providers to join. Hosting these webinars in different parts of the province and in different treatment settings created a rich conversation and a chance to talk about shared solutions and strategies.

Some themes echoed across the webinars—among them, the frustration of caregivers who have helpful information to share about the patient. By contrast, some health care providers have what was referred to as privacy paralysis – some basic knowledge of privacy rules, but uncertainty about how much information they could collect from caregivers, or how much information they could give them.

These challenges, as Mary Jane pointed out in the webinars, are affected, in part, because the privacy landscape has shifted over the years. The added significant sanctions and disciplinary action for privacy breaches, which have been well covered by the media, as well as increased oversight by health regulatory colleges, has clearly increased the caution by providers in sharing health information.

The Change Foundation’s resource aims to create common rules and sensible discussion. It is our hope that a more nuanced conversation around privacy and consent will lead to caregivers being able to both share and receive valuable information to support the patient.

Similarly, it is our hope that health care providers feel more confident in how and what they share, with the consent of the patient (or the patient’s substitute decision-maker). The resource also creates a primer on health care consent since some family caregivers ultimately become the patient’s substitute decision-maker, giving them even greater authority to give and receive information about the patient.

Our report includes some case examples to help illustrate how the legislation plays out in various scenarios, as well as links to additional resources. We hope that family caregivers and providers alike will find the resource insightful and practical.

Making Privacy and Consent Rules Work for Family Caregivers

In 2015-16, we engaged with family caregivers, and health and community care providers across Ontario through our Caring Experience initiative, to understand the breadth and depth of caregiving in Ontario from both perspectives.

Family caregivers told us:

  • They want more formal recognition of, and respect for, their caregiving role, and in some cases, they want to be part of a circle of care.
  • They are concerned that they can’t access the information they need to support the person they are caring for.
  • That providers often told them that they couldn’t share health information for privacy reasons.

We also engaged with health care providers to understand what got in the way of their efforts to work effectively with family caregivers. These providers told us:

  • They were uncertain about privacy requirements.
  • They were unclear whether they had the legal right to speak with caregivers to collect personal health information.
  • They weren’t sure whether or when they are allowed to share personal health information with family caregivers.

It was clear that both caregivers and providers could benefit from a resource that would set the record straight about how Ontario’s privacy and consent rules apply to them. In this report, The Change Foundation set out to address these concerns by:

  • Explaining the legal framework that applies to caregivers and providers under Ontario’s health privacy legislation—the Personal Health Information Protection Act, 2004 (PHIPA);
  • Explaining the consent requirements outlined in the Health Care Consent Act, 1996 (HCCA);
  • Summarizing what caregivers need to know about the legal frameworks in order to get the information they are entitled to in order to serve and support patients, as well as providers’ legal responsibilities about consent and disclosure; and
  • Describing how some common scenarios play out under Ontario’s privacy and consent legislation.

 

Report and Related Resources

 

Report: Making Privacy and Consent Rules Work for Family Caregivers (pdf)

Privacy and Consent for Caregivers: What Healthcare Providers Need to Know (pdf)

Privacy and Consent for Caregivers: What Family Caregivers Need to Know (pdf)

Making Privacy and Consent Rules Work for Family Caregivers – webinar slides (pdf)

Questions & Answers on Patient Privacy and Consent in The Addiction and Mental Health System in Ontario (pdf)

Shortly after their project focused webinar in late Fall 2017, our Embrace Changing CARE team acknowledged the need for an additional knowledge product tailored specifically to the questions that would help both caregivers and health care providers working within Ontario’s mental health and addictions system.

Webinar: Making Privacy and Consent Rules Work for Family Caregivers Webinar – March 8th, 2018


 *all questions received during the webinar have been answered either in the webinar recording or the slide deck available for download above*

For more information, please contact:

Communications at info@changefoundation.com

Should Money Come into It? A Tool for Deciding Whether to Pay Patient- Engagement Participants

In March 2015, The Change Foundation released Should Money Come Into It? A Tool for Deciding Whether to Pay Patient-Engagement Participants.

should money come into it, compensation cover
Click to download report

In Fall 2017, in response to increased uptake and interest in the topic, the Foundation decided to “relaunch” this report, by releasing a newly redesigned Decision Tool and our 7 Things to Think About when Considering Compensation infographic. As patient engagement activities become more common and compensation is a question, these tools can help answer the question: Should patient and family-caregiver participants be paid?

You are free to adopt the tool as is, adapt it for your needs, or use it as a springboard to discussion. In the associated brief, straightforward paper, you will also find pros, cons and expert opinions on the philosophical and practical issues involved. A note about process: We developed the decision tool with input from our own key patient engagement group, the PANORAMA panel.

The Decision Tool Image
Click to download
Considerations Image
Click to download

Changing CARE for caregivers

Genevieve Obarski, Executive Lead, Program Implementation

Back in 2015, when we first waded into the unknown waters of the caregiver experience, we weren’t sure what we were getting into. But what we did know was that The Change Foundation, as an independent and unbiased organization, was uniquely placed to explore this issue with both caregivers themselves and the providers who intersect with them in Ontario’s health and community care system. So, while the path forward wasn’t exactly clear, we were confident it was the right time and opportunity for us to lead this necessary provincial conversation.

From our first tentative focus groups, through the hundreds of discussions with caregivers and providers in 2016, to the current engagement now being held with caregivers and providers in our Changing CARE teams, I am convinced we chose the right themes and path to advance this work in Ontario.

We kept all the conversations disease and caregiving situation “agnostic,” and we asked people to tell us what would make a better partnership between families and providers in serving those who are cared for in health and community services. We heard the same things back then as we hear now:

  • Caregivers want to be recognized for the important role they play, included in discussions and decisions about their family member and treated as a partner in their care.
  • Caregivers want respectful timely, accessible and inclusive communication.
  • Caregivers want to be asked how they are doing and what the system and its providers can do to facilitate their “work” of being a caregiver.
  • Caregivers want to have easy access to the knowledge, supports and training that are necessary for them to be the best caregivers they can be.

The Change Foundation is promoting the revolutionary idea that it is the job of the health care system to create the conditions and the culture for partnering with family caregivers. This is the experiment we are conducting with the Changing CARE projects we are supporting.

We believe we have found four partnerships that have the three key components to successful improvement: the will, the ideas and the execution of changes.  

The Foundation has the privilege of providing resources to these four groups to support engagement, co-design, and implementation, which we and the Changing CARE teams believe will lead to significant positive changes in the provider-family caregiver partnership and interactions. 

The observation that these themes remain universal in the engagement we have had, and are continuing to have, with caregivers and providers, is proof to me that we chose the right course. I am convinced that by supporting, highlighting, and teaching others about the work that caregivers and providers are doing together in teams in the Changing CARE projects, that we can make a difference in the experience that Ontario’s caregivers and providers have in partnering to support those receiving health care services.  

The State of Caring: UK & Ontario caregivers struggling with similar issues

Lori Hale, Executive Lead, Research & Policy

In July, Carers UK released their annual State of Caring report, which is based on the results of surveys with over 6,600 carers in the UK, and is meant to serve as a snapshot of life for carers in 2017. As I read through the report, I couldn’t help but notice the similarities between the carer experience in the UK, and the family caregiver experience in Ontario.

But before I get into it, I want to take a second to explain the terminology: the people we refer to here in Ontario as family caregivers, or sometimes just caregivers, are referred to as carers in the UK. But really, both terms are referring to the same people. And just to add an added layer of complexity, when family caregivers in Ontario are under 25 years old, we refer to them as young carers, not as young caregivers.

At The Change Foundation, we’ve done some research of our own into the caregiver experience in Ontario. As we presented in our 2016 report, A Profile of Family Caregivers in Ontario, we analyzed responses from 2,200 caregivers who participated in a 2012 Statistics Canada survey.

We also heard from 300 caregivers as part of our Caring Experience project, which we reported on in our Stories Shared, Voices Heard: Ontario’s Family Caregivers report.

While our surveys and Carers UK’s survey can’t be compared as apples to apples, due to many differences in terms of design, population surveyed and time period studied, there are nevertheless many common themes that emerged.

For example, the State of Caring report highlights the following themes:

  • Carers don’t feel valued or recognized. Three quarters (73%) of carers felt that their contribution was not understood or valued by the Government, and a majority felt that the public does not value their contribution.
  • Carers consistently aren’t being properly assessed and supports aren’t being put in place. Of the 68% of carers who said they had received a carer’s assessment, over half said their ability and willingness to provide care was not properly considered in the assessment and in the support they received; and only a third felt that the support needed to look after their own mental and physical health alongside caring was thoroughly considered and reflected in the assessment process. The Care Act in England defines new rights around assessments for carers, but as the State of Caring report points out “responses from carers show that this does not necessarily mean carers are getting the support the assessment identified them needing.”
  • Carers lack access to practical support and respite. A quarter of carers said they receive no practical support to help them with caring; for those who are caring 50 hours or more a week, 20% receive no practical support to help them. A quarter of carers said they hadn’t had a day off from caring for more than five years, and four out of ten said they hadn’t had a day off for more than a year. Without proper support, including respite, “carers are pushed to the breaking point and have to give up work, stop caring, or even go into hospital themselves.”

We heard very similar things from caregivers in Ontario. In fact, our Changing CARE project, which emerged from our Caring Experience work, is built around very similar themes: 

  • Communication: better communication and information exchange between health care providers, and between caregivers and health care providers.
  • Assessment: more identification and assessment of family caregivers to determine their needs, abilities and expectations.
  • Recognition: formal recognition of the role caregivers play in our system by the patient’s care teams and by caregivers themselves.
  • Education and supports: more opportunities for caregiver support and education to develop key care skills and knowledge.

Our commitment to family caregivers goes beyond the boundaries of Changing CARE—We are also committed to further engaging with family caregivers in Ontario to truly understand their experience as they interact with health and community care providers. We applaud Carers UK for their commitment to getting to the root of the carer experience in their jurisdiction. We plan to keep doing the same in ours.

Changing CARE update: Summer 2017

Christa Haanstra, Executive Lead, Strategic Communications 

Following the launch of the Changing CARE projects in early 2017, followed by a two-day intensive training on co-design by the UK’s Point of Care Foundation in late March, the teams have been working away, in partnership with caregivers, to build the foundation for change.

All four projects have convened a Steering Committee and have established a structure for governing the project and operationalizing the project work. The Change Foundation is actively participating on each of the Steering Committees, to bring our knowledge, insights and expertise, gained through our caregiver and provider engagement work, and our previous patient engagement work through PATH and PANORAMA.

From full-day planning retreats, to contributing to discovery work, to participation on committees, to being on hiring committees, to hiring caregivers in paid project roles, the caregiver voice is being given a stage through our Changing CARE partnerships across Ontario.

The Change Foundation and our Changing CARE projects are guided by our Compensation framework, outlined in our 2015 report Should Money Come Into It?, in helping to decide whether to pay patient and caregiver engagement participants.

A natural consequence of working in an emerging area is collaboration. We’re already seeing the collaboration happening between the four teams, despite their geographic spread, and their unique clinical priorities. From sharing resources, to creating opportunities to learn from each other, to building on each other’s’ ideas, the partnerships are growing strong.

A great example of this is the creation of three Coordinating Groups looking at three common issues across the Changing CARE projects—a formal caregiver ID and recognition program; a caregiver assessment process; and, a common evaluation and outcome measurement strategy. Each of these groups is chaired by an Executive Lead from The Change Foundation, and has caregiver participants, along with representation from each of the Changing CARE partnerships. They’ve each had their initial meetings, and will be working through the summer and into the fall. The goal is to lead a shared development approach that can be implemented at each of the four project sites, with the intent to share the model so that it can be spread across the province in the longer term. Stay tuned for their progress!

Even at this early stage, we can clearly say that the Changing CARE partnerships are poised to be leaders in caregiver recognition, support and integration in the Ontario health care system. Together, they will change the way health care organizations, providers, and caregivers work together.

Changing CARE update

Three provincial caregiver organizations and another on the way

Pierre Lachaine, Senior Communications Associate

As Ontario’s own caregiver organization comes closer to becoming reality (more on that below), and as recognition of the plight of the caregiver builds momentum in our province, it’s more important than ever for us to learn from those who have blazed the trails we are riding on.

Sharing what we know, and what we’ve learned through personal, hard-fought experience, is the best way for us to collectively make change for caregivers, and improve their experiences. When we stop thinking in terms of us vs. them, my jurisdictions vs. your jurisdiction and my project vs. your project, and start thinking in terms of collaboration and building on each others’ successes and failures, then that’s when a groundswell of change can really start to make an impact.   

A national perspective on caregiving 

On June 16, 2017, our CEO Cathy Fooks facilitated a session at Health Shared Services Ontario’s Achieving Excellence Together Conference called Strengthening Community Care Systems: A National Perspective on Caregiving.

We heard from Canada’s three trailblazing provincial caregiver organizations—Family Caregivers of BC, Caregivers Alberta, and Caregivers Nova Scotia—as well as from Janet Beed, the advisor to Ontario’s  Ministry of Health and Long-Term Care on caregiver issues.

Caregiver organizations can play a vital role in not only the lives of caregivers, but also in the healthcare system as a whole. Angus Campbell, Executive Director of Caregivers Nova Scotia, gave us an alarming statistic: “If care givers were to go on strike tomorrow, it would cost the Canadian healthcare system $66 billion per year.” These caregivers are at their breaking point, and need the support that caregiver organizations can give them—“30 per cent of caregivers are in distress,” Barbara MacLean, Executive Director of Family Caregivers of BC said.

The executive directors of each organization told the crowd about their organizations, and the supports they provide to caregivers in their provinces:

Caregivers Nova Scotia

Caregivers Nova Scotia is dedicated to supporting unpaid caregivers with free programs, one-on-one and peer support, information and educational workshops. Resources include Caregiver Tele-Connect, educational workshops, and The Caregiver’s Handbook, which is filled with tools, tips and resources to support caregivers.

Family Caregivers of BC

Their goal is to improve the quality of life for family caregivers through information, support and education. They provide leadership to strengthen the voice of family caregivers and the significance of their role. Family Caregivers of BC’s work falls under three pillars: education (e.g., webinars, workshops, presentations and resource development), caregiver support (e.g., one on one support and caregiver coaching, information, referral and navigation, support groups, online resource centre) and collaboration & engagement (e.g., health system improvement, participation in research, condition-specific organizations)

Caregivers Alberta

Caregivers Alberta provides resources and programs for caregivers, including COMPASS, a program that includes modules such as putting yourself first, managing stress and navigating the system. They also provide resources for providers, such as the Navigator workshop one-day training for health professionals, service providers and community agency staff to help them better support caregivers.

Ontario’s caregiver organization

Hearing from these organizations was particularly timely for us to hear in Ontario, since Janet Beed told the crowd that she had just recently submitted her recommendations to Health Minister Dr. Eric Hoskins about a new caregiver organization in our province, which she confirmed is in the pipeline. She reminded the crowd that Patients First: A Roadmap to Strengthen Home and Community Care (May 2015) included 10 steps to improve and expand home and community care. One of those steps is to expand caregiver supports.

Although the detail about her recommendations to Dr. Hoskins remain confidential, Ms. Beed did talk about the characteristics that she believes the caregiver organization should have:

  • Evolve over time
  • “By caregivers but not on the back of caregivers?”
  • Focus on general supports
  • Partner with others: reduce silos, minimize duplication, maximize support and expand what exists
  • Recognize unique needs
  • Be cost effective

For those in the room, the sense of momentum, and the sense that the caregiver experience is on the cusp of improving dramatically in Ontario, was palpable. And when it happens, it won’t be in a silo. It will be thanks to those who shared their learnings. 

Young Carers – The Invisible Population

TCF response to Kielburger article in the Huffington Post

Christa Haanstra, Executive Lead, Young Carers

To see Craig and Marc Kielburger shine a large spotlight on young carers, in their recent Huffington Post article, “Forced to Grow Up Too Fast, Canada’s Young Carers Face Trauma,” is extremely encouraging. This invisible population which makes up 28% of 15 to 24 year olds in Canada, has gone unnoticed for far too long. It becomes even more urgent when you consider there are many more youth left out of these statistics, as there is no data on caregivers under 15 years old. The sad reality is that caregiving responsibilities can start in children as young as five.

The Change Foundation is working in partnership with caregivers and health care providers 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. This includes young carers.

It’s much easier to explain young carers when we talk about it in the context of siblings living in, and helping out, in a household where one of their brothers or sisters has an illness – usually a chronic illness, disability or a serious health condition. But the truth is there are many young carers who play a notable role in supporting a parent or grandparent with a health issue. Those stories are harder to tell.

The Change Foundation has seen the impact of caregiving on young carers firsthand. Last year, we spent a week with eight young carers between 10 and 18 years old, who used photos, video and storytelling to bring a voice to their own personal stories. Six of them have bravely agreed to share their stories publicly.

There’s no question that there are two sides to the young carer coin. As poignantly stated in the article, “Panic attacks. Depression. Exhaustion. Social isolation. Poor academic performance and absenteeism. Behavioural issues,” happen as a result of their caregiver responsibilities. The other side was very apparent when I worked at Holland Bloorview, Canada’s leading pediatric rehabilitation hospital. I always knew there was something about the siblings of the children that we served. That something was usually a level of empathy beyond what most adults have, a degree of maturity well beyond their years, and a very high-achieving attitude.

As the article highlights, we know from the UK experience that young carers benefit greatly from both peer and professional support, as well as socializing with other young carers.

In the UK, under the Carers Act 2014, all caregivers, including young carers, are entitled to an assessment, followed by supports. Moreover, the onus is on health and social providers to identify young carers. Once a young carer is identified, they are assessed, and often the first step is to ‘right size’ their responsibility, by advocating for added services for the ‘cared for’ and for supports for the young carer.

Clearly, this doesn’t happen in Ontario. Not only is there a lack of awareness or understanding of young carers, there is an abject lack of supports and resources. Where can they turn for support? As a professional, where would you refer them? There are three small trailblazing organizations that offer some supports–Powerhouse Project (Niagara and Haldimand/Norfolk regions), Young Carers Program (offered by Hospice Toronto) and Young Carers Project (Kitchener Waterloo)–as well as a handful of researchers budding in academic centres. This is a start, but doesn’t even reach the tip of the iceberg.

At a provincial level, we’ve started to see more discussion and focus on the needs of family caregivers. As the momentum builds, let’s not forget about young carers.

At the 2017 international conference on Young Carers held in Sweden, the needs of young carers were highlighted on a global stage. For me, a slide from a presentation by Ingvar Nilsson, National Economist (Sweden) summed up the call to action well. “It might look expensive to support young carers…but it is almost always more expensive not to do it.” Known as the “silent population” we all have a role to play in giving young carers the attention and support they deserve.

 

 

Bringing the Canadian caregiver perspective to 54 Countries

The Change Foundation participates in the International Conference for Integrated Care

Jodeme Goldhar, Executive Lead of Strategy and Innovation & Lori Hale, Executive Lead of Research and Policy

Many jurisdictions across the world are facing similar challenges when it comes to partnering with patients and their caregivers to build integrated health care systems, which in turn support better patient and caregiver experiences. And each of these jurisdictions is tailoring its own solutions to its own unique system and population.

When international partnerships and information pipelines are created, such as they were at the International Conference for Integrated Care (ICIC) in Ireland in May, 2017, then what’s happening on one side of the world can be put into practice on the other. That’s how change is made.

ICIC was hosted by the International Foundation for Integrated Care and the Republic of Ireland’s Health Services Executive. Together, 1,200 delegates from 54 countries got together to discuss Building a platform for integrated care: Delivering change that matters to people.

Through our work first with the PATH project, and now Changing CARE, The Change Foundation has worked, and is working, with multiple sectors and organizations to improve integration in Ontario. We were honoured to present on what we’ve learned in our work so far, as we pursue our new strategic goal of improving the experience of family caregivers as they help a family member transition through and interact with Ontario’s health and community care systems.

Our past work, which focused on improving the experiences for patients and family caregivers as they move about Ontario’s health care system, led us to the vital yet often unrecognized role of informal or family caregivers in the system. As an independent health policy think-tank that works to inform positive change in Ontario’s health care system, we’ve been able to identify what some of the most pressing needs are, and we were happy to travel to Dublin with these ideas, and an open mind, in tow.

We presented together at the Making Patient and Carer Engagement Happen workshop, where we focused on the importance of co-design in developing integrated systems of care, the value and impact of patient and caregiver involvement, and the Changing CARE projects.

As a conference with a Patient Included Charter Status, by definition, patients and caregivers were actively involved in the design and planning of the conference, as well as participating as attendees and speakers.

For example, Liz Maddox, a caregiver, shared her experience, and described how she and her husband started a support group in their rural community. They had eight people attend their first meeting, and they now have nearly 80. She spoke about the importance of peer support, and commented that she was “empowered by what I hear today.” In particular, she was inspired by the work of The Change Foundation, and felt that our approach reflects what’s important to her. For us, this confirms that our work is focused on what’s important to caregivers.

Jodeme was also honoured to chair a workshop on Strengthening Family Caregivers on behalf of the Foundation, and play a role in advancing this agenda on the international stage. Being asked to facilitate this type of global discussion is a clear indication of the international recognition of the role and profile of the Foundation.

A highlight was the Care Alliance Ireland presentation on their partnership with the Health Services Executive, Family Carers Ireland and the InterRAI team to improve the carer assessment in the InterRAI assessment tool. Eight countries are involved and 50 caregivers from each country are providing input on the design of the draft questionnaire. The goal is to roll out the carer assessment of this tool internationally. 

We were proud to have the opportunity to serve as a model for others overseas. Just as importantly, we embraced the opportunity to learn from others and bring some ideas home with us, to keep The Change Foundation at the forefront of integration issues in Ontario. It’s by joining this type of community that we’re able to keep learning and growing, and keep improving the caregiver experience. We look forward to future collaborations with IFIC and its colleagues around the world.

Changing CARE is an initiative in which The Change Foundation partners with health care organizations and family caregivers to improve experiences and strengthen Ontario’s health and community care systems.

The International Foundation for Integrated Care is a not-for-profit educational membership-based network that crosses organizational and professional boundaries to bring people together to advance the science, knowledge and adoption of integrated care policy and practice.

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