Family Caregivers

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.

Family caregiver spotlight: Family Caregiver Community of Interest

Catherine Monk-Saigal, Program and Communications Associate

In each issue of Top of Mind, we profile the journey and stories of Ontario’s family caregivers –profiling organizations, groups and individuals taking action to improve the experience of family caregivers across the province, specifically in the health and community care system.

Spearheaded by two dynamic and proactive caregiver advocates, Cynthia Clark and Christine Holland, The Family Caregiver Community of Interest (COI) for Mental Health and Addictions is a provincial forum for knowledge exchange and collaboration between Ontario Family Caregiver Advisory Network (OFCAN), CAMH, and several partner member organizations, including The Change Foundation.

The COI was established in late 2016 “OFCAN viewed the creation of a family caregiver COI as a great opportunity to build collaborative partnerships with other family caregiver focused agencies and groups in the mental health and addictions sector in Ontario”, explains Clark who also co-chairs OFCAN with Holland.

The Community of Interest is primarily focused on issues related to the family caregivers of individuals with mental health and addiction related illnesses and issues. For Holland, success for the group would mean, “seeing more and more organizations (i.e. hospital, community, research) practice meaningful family engagement.” This ambitious vision, along with a goal to share knowledge, models, and practices, became the driving forces behind the COI’s three part webinar series that began in February 2017.

With a focus on sharing promising and established practices in family caregiver engagement, the webinars have also featured organizations and groups that have widely adopted such practices. Underlining each presentation is an emphasis on the importance of including family caregivers as an essential part of any care team or circle of care. In the coming months, a knowledge product will be created and distributed widely, to spread the knowledge even further.  “We hope that sharing evidence of successful partnerships between family groups and service providers will inform best practices and support a platform for change,” explains Clark.

The goals for the next (and final) year of the COI’s two year project term, will be dependent on the continued interest and commitment of the member organizations. Although there is no longer any funding associated with the COI, the in-kind support of a knowledge broker from CAMH, as well as the EENet platform has enabled the group to host webinars and widely distribute research, learnings, and best practices.

Although there is an option to re-apply to extend and build on the work that the COI has already accomplished, the group plans to re-evaluate the primary focus and goal. The Co-Chairs hope that groups, organizations, and agencies in Ontario, working in the family caregiver realm will refer to the encouraging collection of models and materials accumulated. They’ve developed a wealth of knowledge in creating innovative practices which exemplify the very best practices and innovative principles for family caregiver engagement in mental health and addictions services.

Click here to learn more about the COI

 

Creating new linkages between the caregiver, the community and health care is essential

Genevieve Obarski, Executive Lead, Program Implementation 

In January, February and March, The Change Foundation team had the privilege of traveling across Ontario to launch the Foundation’s four Changing CARE partnerships. Each launch event was an excellent showcase for each partnership, bringing together the family caregivers, patients, providers, and other community stakeholders that will be part of this initiative. At every stop we’re asked “Why here? Why this project?”


In some ways this is an easy question. All four partnerships had common key characteristics:

  • The organization’s Executive leaders championed the idea and placed it in their organizations strategic plan.
  • Family caregiver experience was a current major organizational priority.
  • There was a strong focus on provider engagement, education and behaviour change related to caregiver experience.
  • The organization was prepared for co-design work with caregivers as demonstrated by existing patient/family engagement activities.
  • Proposal scope, target population, and provider engagement strategy supported the potential for spread and culture change in the organization and the community.
  • Each lead organization had partnerships that would improve the caregiver experience inside and outside their facility’s walls.

It’s this last point that has become increasingly important to the Changing CARE initiative. Caregiving is not a role that only exists within the confines of a hospital or doctor’s office. Providing support and care, of any kind, requires caregivers to piece together services and resources from organizations that exist across the continuum of care and deep into the community. To connect with caregivers on a meaningful level, it is imperative that we understand and link together the networks they are likely to use.

Each Changing CARE partnership has already reached out to a broader community network in one way or another.

  • The Embrace partnership will see the Cornwall Community Hospital and the Cornwall and District Family Support Group reach caregivers of individuals with mental health problems.
  • In Toronto, Sinai Health System and WoodGreen Community Services will work closely together to create a hub for caregivers looking for support and leverage WoodGreen’s extensive community networks to ensure caregivers are identified.
  • St. Joseph’s Health Care London will lead a team of community partners that include Alzheimer Society London and Middlesex, the Canadian Frailty Network, and the South West Local Health Integration Network, among others.
  • Lastly, the Connecting the Dots partnership is being led by the local hospital network and family health teams to directly connect and engage with caregivers across Huron and Perth counties.

However, this kind of local, grassroots work is not always an easy task. The silos that can exist between health care and community care services can be a barrier to collaboration. But identifying common bonds and groups of stakeholders can be one solution. For the four Changing CARE partnerships, linking already existing networks of services was a key realization of a stronger together mentality on a local level.   

This work is merely beginning. The next step for our Changing CARE partnerships will be to leverage these combined networks to reach local family caregivers and invite them to collaborate and co-design supports/resources that work for them.

The potential for these projects, however, is exponential.

Finding new solutions to address caregiver issues, we need a diverse group of people and organizations with a holistic, community-based vision. Through Changing CARE, we’ll encourage and foster these new linkages for the benefit of all Ontarians.

Click here to view our Changing CARE videos

Moving beyond caregiver recognition

In April, the spotlight was shining on family caregivers more than ever before. April 4 was Family Caregiver Day and a number of appreciation events were held to recognize the vital role families play in caring for a family member, friend or neighbour. In fact, for the first time ever, this day was recognized at the national, provincial and municipal level. Later in the month, the Ontario government announced new supports for family caregivers through increased funding for respite services, more education and training programs for family caregivers, a new Ontario tax credit, as well as the creation of a new organization to coordinate supports and resources for caregivers.

These initiatives are definitely welcome. They represent a step forward in recognizing this vital role, giving caregivers a bit more time away from their caregiver responsibilities, and providing needed and necessary information and training. 

But, is it enough? We don’t think so. Our direct engagement with family caregivers, and health care providers and staff tell us a more fundamental shift in thinking is required. Caregivers spend a lot of their caregiving time interacting with the health care system on behalf of their family member. Whether it’s chasing down information, coordinating appointments, or trying to convey vital information about the patient or the patient’s wishes, it can be time-consuming, frustrating and stressful. More access to respite or offering of education to caregivers, while important, does not change the fact that the system itself does not, by and large, value or acknowledge the caregiver role. Policies and practices in health care organizations often actually preclude caregiver involvement in patient care planning. To add insult to injury, busy staff often make assumptions about a family’s capacity to provide support without having a discussion with the caregiver to assess their willingness, ability and availability. And the evidence shows, when caregivers are not valued and supported, they burn out, become isolated, or they themselves become ill.

We are setting out to see if things can be done differently–we believe they can. Our Changing CARE work intends to do just that–change care and the caring experience for the caregiver. Since late January, we’ve announced four Changing CARE projects:

Connecting the Dots…Smoothing Transitions for Family Caregivers (Huron and Perth counties)

Partner Organizations: Huron Perth Healthcare Alliance; One Care Home and Community Support Services; North Perth Family Health Team; STAR Family Health Team; South West Community Care Access Centre; Southwest Local Health Integration Network

 Embrace (Cornwall)

Partner Organizations: The Cornwall & District Family Support Group; Cornwall Hospital, Community Addiction and Mental Health Services

 Improving CARE Together (London)

Partner Organization: St. Joseph’s Health Care London 

Cultivating Change: The Caregiver Friendly Hospital and Community (Toronto)

Partner Organizations: Sinai Health System and WoodGreen Community Services

Through these projects, we are working directly with eleven partner organizations, but the reach is much broader when we look at all the collaborative work planned as part of each project. You can read more about the projects, and what they hope to achieve in the coming years, in Genevieve Obarski’s article Creating New Linkages

April was also a busy month at The Change Foundation, as we welcomed Jodeme Goldhar, Executive Lead, Strategy and Innovation to our small but mighty team. In this role Jodeme will focus on expanding the Foundation’s international and national profile, as well as linking strategy to the execution of the Foundation’s projects. Stay tuned for her reflections on her trip abroad meeting with international colleagues, in our next issue of Top of Mind. 

As always, I’m excited to continue to share the Foundation’s activities with you and I sincerely hope you’ll continue to engage with us on this important shift in the health care system. A shift to recognizing family caregivers, and supporting them in the important role they play as key partners in our health care system.

“You are not alone” – Advice From One Caregiver to Others

Photo of caregiver James Joyce with his son Brendan
From left to right, Terry Sweitzer, Brendan Joyce, James Joyce.

Rebecca Goss, Communications Assistant

Thirteen years ago, when James’s son was in his second year of university, he was diagnosed with bipolar disorder. This thrust James and his wife, Terry Sweitzer, into the roles of family caregivers, joining 3.3 million others in Ontario.

The role of family caregiver – that is, caring for a friend, family member or neighbour – can be stressful. Nearly half of Ontario caregivers report having somewhat high to high levels of stress, with nearly 10 per cent reporting high stress. This stress stems from balancing caregiving with employment or other responsibilities, the declining health of their loved one, managing their own mental health and emotions and more. Others may also be taking care of children at home, while balancing caregiving needs for others in their family.

Over one third of caregivers report that they are tired, anxious, or both. As these feelings build up over time, caregivers can become physically or mentally exhausted to the point of distress, anger, anxiety or depression—known as caregiver burnout.

Since becoming a caregiver, James has become an advocate for caregiver support with the Cornwall & District Family Support Group. Once per month, he runs a support group to bring caregivers together, discuss their experiences, learn from each other and find help if they need it. It’s his way of helping others in the hopes of preventing or delaying burn out.

“The thing I always tell people is if you can’t take care of yourself, you can’t take care of a loved one,” James says.

Self-care can include things like taking a long, leisurely bath or walk, enjoying a hobby, or maintaining friendships, James says, since these often get lost when someone starts caregiving.

Education is also the key to mitigating stress and avoiding burnout, adds James. He helps run a free 12-week course annually with the Cornwall & District Family Support Group to educate family caregivers on mental health. It’s education sessions like this, and a culture that recognizes family caregivers, that led The Change Foundation to support Embrace, a Changing CARE partnership in Cornwall.  

“The more you know about what you’re dealing with, the better you’ll be able to cope,” James says. He adds that it’s best to go to an association that works with the illness you’re trying to cope with, since the internet may not always have accurate information. Many disease-specific charitable organizations have free resources online for caregivers to view and learn from.

If nothing else, James wants to remind caregivers that “despite how you feel, you are not alone. There are groups across the province. There are people willing to talk, listen and help you.”

For those looking for caregiver support groups or education opportunities, there are a number of websites to help get a search started including The Caregiver Exchange and the Foundation’s own efforts to support family caregivers through research and our Caregiver Resource Hub.  

 

 

Announcing four partnerships ready to start Changing CARE

Today The Change Foundation is excited to announce four community partnerships poised to make positive impacts on the experience and interaction family caregivers have with Ontario’s health care system.

Through Changing CARE, partnerships in London, Huron and Perth counties, Cornwall and Toronto will develop local supports, programs, and/or resources that address four thematic needs identified by caregivers and health providers: communication, assessment, recognition, and education.

“These four partnerships truly understand the needs of caregivers in Ontario today,” said Change Foundation President and CEO Cathy Fooks, “Each showed an astounding commitment and willingness to co-design new strategies, practices and initiatives with caregivers for the benefit of Ontarians.”

Each partnership was developed with caregivers in key design and decision-making roles, which will continue throughout the partnership. The partnerships are also intently community driven and engage a variety of organizations across health care settings and community services.

The partnerships moving ahead under Changing CARE bring important focus to different facets of the caregiver experience from a multitude of perspectives including different care settings, demographics, and geographic locations.

Changing CARE will consist of the following partnerships:

Connecting the Dots…Smoothing Transitions for Family Caregivers>

Partner Organizations: Huron Perth Healthcare Alliance; One Care Home and Community Support Services; North Perth Family Health Team; STAR Family Health Team; South West Community Care Access Centre; Southwest Local Health Integration Network

Location: Huron County and Perth counties, Ont.

This partnership is focused on addressing the needs of family caregivers through defining and recognizing their role, and co-designing systems of care provision and communication that meet caregiver needs. Read our overview about family caregivers or  click here for more details about our report.

Embrace

Partner Organizations: The Cornwall & District Family Support Group; Cornwall Hospital, Community Addiction and Mental Health Services

Location: Cornwall, Ont.

Through several new work streams, this partnership will develop practices with family caregivers to better support, recognize, and embrace their vital role in the recovery of their family and/or friend with addiction and mental health issues. Click here for more.

Improving CARE Together

Partner Organization: St. Joseph’s Health Care London

Location: London, Ont.

St. Joseph’s Health Care London will build on past learning and successes to further strengthen family caregiver partnerships in all its programs and services. This partnership will feature a number of activities and mechanisms designed to make impacts across the organization, including, communication resource toolkits, formal caregiver assessments and new education and support initiatives. Click here for more.

Cultivating Change: The Caregiver Friendly Hospital and Community Hub

Partner Organizations: Sinai Health System and WoodGreen Community Services

Location: Toronto, Ont.

Sinai Health System and WoodGreen Community Services are proudly partnering with family caregivers to fundamentally redesign the caregiver experience using the concept of the Caregiver Friendly Hospital and Community Hub. Click here for more.

 

Changing CARE partnerships will each receive a maximum of $750,000 per year for the next three years from The Change Foundation.

Starting in late January, four regional launch events will take place to celebrate and showcase each Changing CARE project.

For more information, please visit www.changefoundation.ca/changing-care.

 


For media inquiries, please contact:

Communications at info@changefoundation.com

 

For program information, please contact:

Harpreet Bassi, Executive Lead, Program Implementation at hbassi@changefoundation.com.

 

Enhancing Care, Enhancing Life: Looking closer at Long-Term Care Councils

Enhancing Care, Enhancing Life - Long-Term Care Councils
Click here to download Enhancing Care, Enhancing Life.

Stephanie Hylmar 

In Ontario, more than 620 long-term care homes provide round-the-clock nursing, medical, social and personal care for more than 78,000 residents at any one time. In recent years, long-term care homes have been increasing their efforts to work collaboratively with system partners, staff, residents and families to enhance the quality of care and quality of life for their communities.

One of the patient engagement models used to do this is Residents Councils and Family Councils. However, due to being mandated under the Long-Term Care Homes Act (2007), these Long-Term Care Councils have caused some to question their authenticity and contribution.

Spurred on by our work on patient and family advisory councils in hospital settings, the Foundation felt it was time to learn more about these councils and their impact on long-term care home life.

After surveying over 2,500 long-term care residents, family members, council staff assistants and administrators, the Foundation found that these councils are perceived positively by their communities and are seen as having real impacts as reported in Enhancing  Care, Enhancing Life.

Specifically, four key findings emerged from the surveys:

  • Enhancing the quality of life, enhancing the quality of care, and information sharing we identified as the three main roles councils played;
  • Residents and family members participating on councils have a much clearer understanding of what the councils accomplish and believe that they fulfil their roles;
  • Despite councils being mandated by the provincial government, council staff assistants and administrators see the value, importance and impact of having a council; and
  • Improvements in relationships are mainly seen between residents and staff.

These four key findings are an overview of some of the important big picture matters that councils address and deal with. These findings are also significant because no other independent or arms-length organization has reviewed the state of these councils in such detail.

Long-Term Care CouncilsHowever, resident’s councils and family councils may only be an initial step in the long-term care sector’s patient- and family-centred journey.  In Insights into Quality Improvement: Long-Term Care, Health Quality Ontario (HQO) suggests that truly listening to residents and families means “moving beyond the existing resident and family councils to more co-leadership and participation in quality improvement activities” (pg. 29, HQO, 2016). Furthermore, a key component of continuous quality improvement is incorporating the “voice of the customer”—i.e. residents and families (HQO, 2016). Knowing the degree to which councils are able to provide this voice, and where successes and pitfalls lie, can inform others on how to optimize their councils and experiences for residents and family members.

The findings from Enhancing Care, Enhancing Life and HQO’s recent report set the tone for the next phase of our Long-Term Care Resident Councils and Family Councils project.

Through a series of five case studies with long-term care homes from across Ontario, the Foundation will address a number of key questions that emerged from the surveys such as: why are councils fundraising, how are councils fundraising, what does quality look like, and how do councils contribute to quality improvement.  Selected from an open call to the sector, homes being featured in the case studies are currently participating on a voluntary basis through one-on-one interviewing and focus groups.

Although this work won’t be completed until Spring 2017, be sure to learn more about Residents’ Councils and Family Councils in Ontario by downloading Enhancing Care Enhancing Life today: https://changefoundation.ca/enhancing-care-long-term-care-report/.

“Stay With Me”—John’s Campaign revolutionizing hospital care in the UK

Catherine Monk-Saigal

Courtesy of John's Campaign
Courtesy of John’s Campaign

Imagine a health care world where the term “visiting hours” doesn’t exist and caregivers or family members of people with dementia are invited to stay with their loved one in hospital.

Open visiting hours may still be a work in progress in Ontario, but thanks to a small but very powerful grassroots movement, it’s a reality in over 400 hospitals in the United Kingdom.

The reason? John’s Campaign.

John’s Campaign was born out of Nicci Gerrard’s experience watching her father John’s rapid decline during an extended hospital stay. At 86, John, who had been living with dementia for over a decade, was brought into hospital to be treated for debilitating leg ulcers. During his stay, an outbreak of norovirus within the hospital kept Nicci and the rest of John’s family from visiting. As time went on, John’s cognitive and physical condition began to decline rapidly and he had little contact with any family or friends. Five weeks later, although fully recovered from his leg ulcers, John left the hospital immobile frail and unable to perform even the simplest tasks he had been able to partake in just five weeks earlier.

For Nicci, seeing this change in her father was heartbreaking. However, what was more shocking was just how common this experience was for people living with dementia and their families. Recognizing this as an important issue, Nicci took action.

Fortunately, she didn’t have to look far for a model that works. In the pediatric system, parents are encouraged to stay with their children in hospital to help them feel safe and comfortable in a strange environment. But Nicci wondered: why not take a similar approach for dementia patients who may become confused, scared, or agitated when left alone in hospital?

Like that, John’s Campaign was born.

The premise of the campaign is simple: open visiting hours for people providing care for someone with dementia. Their tagline “Stay With Me” calls for families and caregivers of people with dementia to have the same rights as the parents of sick children, and be allowed to remain in hospital for as many hours as needed. It may sound simple, but for caregivers it makes a world of difference.

“Carers should be allowed to stay with those suffering from dementia. It should not be a duty but an inalienable right, a matter of moral decency and simple human kindness,”

– Nicci Gerrard

While the campaign is primarily centred around an influential presence on Twitter (@JohnCampaign), in just over two years, 407 hospitals have joined a growing coalition that supports a more carer-friendly healthcare environment. Though the Campaign’s main focus is to get hospitals to sign on for open visiting hours, this has also led to a much broader system-wide commitment to recognizing and meeting the needs of carers.

The campaign has achieved such unprecedented success and momentum that in early October 2016 it hosted its first conference. With over 150 health care providers in attendance, and countless caregivers and family supporters, the conference allowed families to share their experiences and unite their voices on the major issues the campaign addresses. It also provided a much needed forum to discuss what’s next for this simple yet transformative cause.

John’s Campaign first came to the attention of The Change Foundation during a recent trip to the UK to meet with caregiver-focused organizations. During the trip, Foundation staff, including President and CEO Cathy Fooks, was struck by the campaign’s power to create system-level change through a grassroots movement.

As The Change Foundation partners with Ontario health care delivery/service organizations to actively integrate, recognize and support caregivers in the important role they play within the health care system, this movement serves as an important reminder of the powerful influence grassroots action can have in shaping and changing formal health care structures.

Changing CARE—Our time for action

CFooks 2We listened. We heard. Now it’s time for action.

That’s been our mantra for just over a month now with the launch of our new funding initiative, Changing CARE. We’ve done the legwork, and we’re ready to take action in Ontario’s health and community care sectors.

This past week was our deadline for Expression of Interest submissions for those organizations interested in being part of Changing CARE. We had over 400 people tune in to one of four webinars and have now received over 70 Expression of Interest (EOI) submissions as a result—now it’s on to the review process.  We heard from all parts of the system – family health teams, hospitals, LHINs and CCACs, and home and community care service agencies.

Similar to the PATH project before it, Changing CARE will bring family caregivers and providers together to spearhead innovative solutions that aim to improve family caregiver experiences in Ontario’s health and community care sector.

It’s on this note that our Top of Mind commentary piece makes a concerted call for better coordination of the various efforts being pioneered across Ontario aimed at family caregivers. At the Foundation, we’ve put a lot of work into better understanding the caregiver experience from the perspectives of caregivers themselves but also from front line staff and health care professionals.

Innovation, however, also needs to exist in policy and legislation, both in health care and in other environments. So, what action is being taken to support family caregivers on a policy front more broadly? To answer this question, we had Cayla Baarda, a Research Associate in the City of Toronto’s Urban Fellows Program and the Foundation’s summer Research Assistant, highlight three key legislative developments aimed at family caregivers.

Lastly, we also had the immense pleasure of providing eight young carers from the Niagara Region the opportunity to share their own caregiving stories in video format through a digital storytelling workshop. In the end, six decided to share their videos more widely and one of these young carers, 17-year-old Olivia Wyatt, is the focus of our latest caregiver feature written by Program Associate Catherine Monk-Saigal.

Stories like Olivia’s need to continue to be at the centre of any change in Ontario, especially as the health care system enters a period of flux. It’s also important to keep ourselves open to the new opportunities that might arise during this period and be willing to take actions that can lead to positive change.

As we launch Changing CARE, our plan is to do just that.

Partnering with family caregivers essential to Changing CARE

ChangingCare-themes
Changing CARE is aimed at addressing caregiver communication, assessment, recognition, and education.

Cathy Fooks, President and CEO

In August, we announced details on our new funding initiative, Changing CARE. Since then, we’ve seen an overwhelming response from every corner of the Ontario health care environment. This is evidenced by the nearly 400 participants in our Changing CARE webinars throughout August and September, and the 70 Expressions of Interest submissions we received last week. Furthermore, this response underscores the fact that family caregivers are being increasingly seen as essential health care stakeholders who have a role and need support.

What we found interesting through our engagement work, however, was the common feeling of helplessness from both caregivers and health care providers. Caregivers often said they didn’t know where to go for information and support and health care providers often said they didn’t know where to send them. Changing CARE aims to change this dynamic as well as others.

As a start, we’ve published a number of key reports that are meant to be resources for the field. This includes A Profile of Family Caregivers in Ontario, our Caregiver Resource Hub, and our Stories Shared, Voices Heard reports which outline findings from both our caregiver and health provider consultations gathered during The Caring Experience Project. These resources on our website provide a concrete starting point for anyone looking to improve the family caregiver experience.

It’s well known that caregiver burden is a real issue facing Ontario and that distress levels are rising. This needs to change.

Through our work leading up to Changing CARE, we discovered four broad themes that caregivers experience – challenges related to communication, recognition, assessment, and education.

We’ll be funding up to three projects in support of innovative ideas to improve the caregiver experience. Future system transformation is clearly predicated on families providing support in all aspects of patient care – if we don’t start building system capacity to partner with them now, no one will be well served. Not patients. Not families. Not providers.

Be Engaged.

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