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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.
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.
Over the last few years, governments around the world have started taking action to improve legislative and policy supports for caregivers. As part of our research and discovery work, The Change Foundation took a closer look at some of the recent changes in legislation and policy worldwide. Although we found promising policy developments in many jurisdictions, there were three recent changes gaining momentum in the U.S., Canada, and Scotland which were the most relevant for our work, which are summarized below.
The United States: Caregiver Advise, Record, Enable (CARE) Act
In 2014, Oklahoma enacted the Caregiver Advise, Record, Enable (C.A.R.E.) Act, an interesting approach to recognizing the caregiver as part of the care team. The Act requires hospitals and rehabilitation facilities to allow patients to designate a caregiver when the patient is admitted, and hospitals must inform the designated caregiver when a patient is being discharged. As part of the discharge process, hospitals must also consult with the caregiver to describe the patient’s aftercare requirements. Within the past two years, 21 more states have signed the C.A.R.E. Act into law, six states have passed the bill, and four states have introduced the bill into the legislature, signaling strong support for its measures nationwide.
Canada: Enhancing Support for Working Caregivers
In early 2016, the Canadian Federal Government announced a significant expansion of compassionate care benefits from six weeks to 26 weeks. Compassionate care benefits are Employment Insurance (EI) benefits paid to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill. The policy change signaled an intention to alleviate the financial burden of taking time off work to provide care or support to family and friends.
Shortly after the announcement, Nova Scotia became the first Canadian province to more than double compassionate care leave from eight weeks to 28 weeks. Compassionate care leave is unpaid leave to provide care or support to a gravely ill family member. Several provinces have followed Nova Scotia’s lead, with Manitoba and New Brunswick already implementing 28 week leave, and Saskatchewan expected to extend their policy by early 2017.
Scotland: Supporting Caregivers’ Health and Well-being
As part of the Scottish Government’s vision of healthier and fairer Scotland, Scotland’s Carer’s Act came into force in 2016. Following the momentum of England’s noteworthy Care Act 2014, the Act will formally give caregivers rights in law for the first time in Scotland. The Act includes provisions for local authorities to involve caregivers in the planning of service delivery, create specific support plans for both adult and young carers, and create an information and advice service for local carers to access. As part of the legislation, carers have expanded rights and control over their health care and that of the person they care for.
Though only three examples among many, these policy development help to illustrate the larger momentum shift towards better supporting family caregivers.
The Change Foundation plans build and drive this moment in Ontario through our Changing CARE initiative which will invest in innovative projects designed to improve the experience of caregivers in Ontario. As we do so, we will continue to track developments in in other jurisdictions as they develop new policies, programs, legislation, and supports that recognize and support caregivers.
Cayla Baarda is Research Associate in the City of Toronto’s Urban Fellows Program and holds a Masters in Public Policy from the School of Public Policy and Governance at the University of Toronto. She was hired as a Research Assistant at the Foundation during the summer of 2016.
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.
Health care is often grounded in human interactions, chiefly between the health provider and the patient and in some cases the family caregiver.
Under its strategic plan, The Change Foundation (TCF) has already worked hard to acutely listen to the experiences of family caregivers in the health care system through the first phase of The Caring Experience. Now, TCF is getting ready to share insight from the other side of caregiving coin: Ontario’s frontline health care providers.
Led by Senior Program Associate Frances Roesch, TCF met with nearly 200 frontline health providers—including doctors, nurses, physical therapists and personal support workers—from each of Ontario’s 14 Local Health Integration Networks.
“It’s been such a pleasure to connect with these individuals,” says Frances. “Each provider brings such a unique perspective and all recognize the role and the importance of family caregivers.”
To get to the core of the experiences providers have when they interact with caregivers, Frances has been leading tailored two-hour sessions designed to encourage providers reflect and share the most salient issues. The majority of each session is used for discussion, however each provider is also asked to do a letter writing exercise that asks them to jump 10 years into the future to envision a health care system that fully supports patients and family caregivers.
“Providers and family caregivers agree on a number of fronts,” says Frances, “both groups want to see a health care system that is more supportive and treats everyone more equitably.”
Significant themes have already emerged from this activity over the short term. For example, challenges and opportunities to work with family caregivers vary greatly by health care setting, and many providers have noticed the lack of formal processes for caregiver assessments.
The full results will be released by TCF this Fall, which will incorporate results from a provider survey running parallel with the engagement sessions. For those providers interested in completing the survey, click here.
“There are still a lot of quite compelling findings to share, however it’s still a bit premature to give away too much as more analysis is needed,” says Frances.
As Ontario’s health care think tank, it is imperative that TCF explores all sides of the caregiving issue to ensure we have full understanding, and to facilitate a balanced approach in taking our next step – working with system partners and caregivers to fundamentally change how the health system interacts with and supports caregivers.
Today The Change Foundation (TCF) released A Profile of Family Caregivers in Ontario, an in-depth review of Ontario-specific data from Statistics Canada’s 2012 General Social Survey (GSS) on caregivers and caregiving. The report is the first of its kind for Ontario using the GSS and helps to paint a more complete picture of the province’s family caregivers in a number of key demographic categories.
“This report is an extremely comprehensive analysis of key data on Ontario caregivers” said President and CEO Cathy Fooks. “We’re excited to share this foundational resource for Ontario health care stakeholders, and we’re confident it can be an instrumental tool for policy and program development that supports caregivers.”
A Profile of Family Caregivers in Ontario covers a wide range of quantitative data on caregivers including gender, health, and socio-economic status. The report also sheds important light on some of the reasons family caregivers provide care and what impacts these activities have on their lives.
The publication of this report, and the research and engagement work completed by TCF in the first year of its strategic plan, serve as a call to action moving forward. The next phase of TCF’s work will be working with organizations that are interested in engaging, collaborating, and working differently with family members in support of a patient’s care. Further details on these opportunities will be made available in Fall 2016.
The Change Foundation also gratefully acknowledges the dedicated and substantial work of Research Associate Stephanie Hylmar in the analysis, writing, and editing of this report.
To find out more about the GSS, please contact Statistics Canada, or visit their website: http://www23.statcan.gc.ca/imdb/p2SV.pl?Function=getSurvey&SDDS=4502.
For more information, please contact:
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Genevieve Obarski, Executive Lead Program Implementation & Catherine Monk-Saigal, Program Associate
As many of you know, The Change Foundation (TCF) and the Ontario Caregiver Coalition (OCC) spent much of January and February of this year travelling across the province to hear directly from family caregivers for The Caring Experience project. From Thunder Bay to London to Ottawa, we heard unique perspectives at eight different caregiver workshops.
However, as different as these stories were, all were connected to similar themes. Though we’ll be releasing a comprehensive report on our research and engagement work with family caregivers and health providers in the coming months, we wanted to take this opportunity to look back on some of our own personal reflections.
All eight caregiver workshops we held were emotional experiences. As some told their stories, they shed tears – others became frustrated, even angry. Regardless, it was clear to the TCF and OCC staff representing the project team at these workshops that caregiving takes a deep and varied emotional toll.
This might not come as a surprise. Family caregivers are often involved in providing very personal support. From preparing meals and helping with household chores, to assisting with medical tasks or advocating for someone in hospital, caregiving responsibilities can be stressful and some skills may require practice.
It should be noted, however, that caregiving can elicit tremendous personal strengths, and as seen in our feature with Katherine Arnup, it can intensify relationships between siblings, spouses, and friends. It was truly evident during these workshops that family caregivers are deeply dedicated to those they are supporting.
One of the things we heard over and over from family caregivers was the need for empathy and understanding, even dating back to our kick-off telephone town hall. Caregiving can be a unique experience, meaning that it can be hard for those who haven’t taken on such responsibility to fully understand the challenges faced by family caregivers.
However, what many family caregivers said they wanted was simple: more recognition, more empathy, more understanding. It became extremely clear to the project team that more time is needed to listen to family caregivers and provide whatever support we can, regardless of where we fit in the health and community care systems. For health providers, for example, this could mean simply asking how someone’s day is going, speaking directly into their eyes, or recognizing a family caregiver’s voice when making important care decisions. For friends and family of caregivers, this could be offering help, or even a cup of coffee and some time to talk things out. These gestures of goodwill can go a long way for family caregivers who may feel like they are falling through the cracks.
Lastly, we have to express the dedication and resilience that each family caregiver showed at the workshops. All were taking time out of their day to tell their story, time otherwise spent caring for someone. We recognize how hard this must have been for some, but listening to them and hearing about all they have done to advocate and care for their family and friends in face of many challenges was eye-opening.
As we look towards the new phase of The Caring Experience, now focused on hearing from frontline health providers, we’re excited to see what common ground will be discovered between caregivers and providers, and how this will inform our future work.
However, The Caring Experience project’s first phase will be remembered as an exceptionally powerful experience and a once-in-a-lifetime chance to connect with groups of extraordinary people. Family caregivers are the glue that holds Ontario’s health system together. Therefore, it’s imperative they have a permanent and recognized seat at the table.
As we continue our work, we will ensure that the voices of Ontario’s family caregivers remain strong and fully represented.
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