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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.
Lori Hale, Executive Lead, Research and Policy and Stephanie Hylmar, Research Associate
3.3 million people in Ontario identify as family caregivers (The Change Foundation, 2016). These individuals provide critical and ongoing support or care to a family member, friend or neighbour. As an essential part of our health and community care systems, family caregivers often have extensive knowledge about health care from their experiences navigating the system alongside the patient.
As a result, family caregivers can provide unique insight on how to meaningfully improve Ontario’s health care system.
The Change Foundation has heard directly from family caregivers and frontline health providers through in-depth engagement activities as part of our strategic plan and The Caring Experience project. We asked both groups about their interactions with each other across health care settings—What got in the way? What went well? What could make it better?
Through this process, we were able to identify four overlapping emerging themes that serve as a starting point for increased stakeholder discussion, consideration and action:
At the outset, family caregivers don’t recognise themselves as a “family caregiver.” They are just family stepping up to look after a loved one. As they begin their task, they begin to realise there is a role and it’s an important one.
Many family caregivers said they were often looking for basic kindness, respect and acknowledgement from the health providers looking after their family member. Family caregivers want to be seen as a valuable member of the care team able to offer vital information for care planning.
For their part, providers did recognize the important role family caregivers play in the care of their patients, yet they often felt ill-equipped to provide adequate support and were unaware of what supports might be available in the community.
Identifying the main family caregiver for a patient can sometimes be challenging. In times of illness many family and friends rally to the patient’s side, but identifying who will be the primary support is not always easy. Once identified there is seldom much opportunity to sit down and assess what the caregiver will need to fulfil their new role. Providers pointed to this challenge repeatedly in our engagement with them. For family caregivers, this lack of identification and assessment meant they constantly had to stake a claim for information and other needs.
Communication between family caregivers and providers across health care settings was a major and overlapping theme. Serious challenges were identified by family caregivers in terms of lack of information and difficulty in navigating a large and multi-faceted health system. Providers remarked that system and funding barriers also hampered communication, not only with family caregivers, but with fellow providers. In every engagement session, communication ran through discussions and various reflections as a common thread and was identified by participants as an area for immediate action.
Lastly, both family caregivers and providers recognize the need for better supports such as skills training, coping mechanisms, and respite. Simply needing “a break” was top of mind for many family caregivers, as was a request to have contact with consistent home care staff. Providers also recognized that transitions between care settings could be unorganized causing problems and frustration, signalling another area for increased support and communication.
At The Change Foundation, we’ll continue to engage with all health care stakeholders to evolve our system. Over the summer we are developing new funding opportunities and partnerships for organizations interested in working differently with family members to improve the patient and caregiver experience. We are excited to see where patients, families, and providers can work together to make change happen.
Herklots, H. (April 27 2016). Caregivers: Lessons from the UK, Opportunities for Ontario (presentation). Toronto, ON Canada.
Torjman, S. (2015). Policies in Support of Caregivers. Renewing Canada’s Social Architecture.
The Change Foundation. 2016. A Profile of Family Caregivers in Ontario.
Over the past six months we have listened intently to the voices of Ontario’s family caregivers. This past winter, we crisscrossed the province for The Caring Experience project, stopping in eight cities to meet with family caregivers at different workshops.
I was fortunate enough to attend the first workshop in London, Ont. It was striking to hear family caregivers speak with such candor and emotion – some for the first time. For many, I think the experience was cathartic. I even saw participants staying back to continue discussion, exchanging emails and phone numbers. And, while there were some stories highlighting very positive experiences, for many it is a largely unsupported role.
This first phase of The Caring Experience has drawn to a close, and we’ve now begun to hear from those who work in Ontario’s health care system – Ontario’s health care providers.
Through a series of engagement sessions with frontline health care providers, we’re casting a wide net to ensure we hear many perspectives—from residents training in rural medicine to personal support workers and nurses. As we won’t be able to meet with everyone, we’ve also created a survey that providers can complete online.
This new phase is extremely important to us as we seek a balanced understanding of the spectrum of family caregiver interactions in the system. We hope to see what common ground exists between those who use the system, and those who work in it. Taking this more holistic approach will serve us well when we move into the next chapter of our strategic plan: the action phase.
You may also notice that this edition of Top of Mind includes the release of our latest publication, Charting a New PATH—a three-part report that describes what we learned through our Partners Advancing Transitions in Healthcare (PATH) project.
PATH was a tremendous learning and growing opportunity and we’re confident it has helped to lead an increase in the number of forums and opportunities for patients, family caregivers and providers to come together.
However, while we’re encouraged by the strides being made for meaningful patient engagement in Ontario, it’s extremely vital that these initiatives are more than a “tick box” exercise. There are a series of important and sometimes difficult decisions that need to be made to ensure that the expertise of patients and family caregivers are given equal weight to all those sitting at the table. Taking time to really listen to the concerns of these individuals is one step, but finding the right ways for action, recognition, and potentially compensation often take more time and thought. That’s why we share so much of what we’ve learned through numerous publications, such as Rules of Engagement and At Work, In Play.
Lastly, I’m excited to mention our upcoming Hot Talks on Health event with Helena Herklots, Dr. Joshua Tepper, and family caregiver Katherine Arnup, PhD. It’ll be a dynamic discussion where we’ll hear three unique points of view, and gain insight on what has been done in the United Kingdom for family caregivers, and what potential pathways exist for Ontario health policy. I sincerely hope you can join us.
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.
The Change Foundation (TCF) made a bold decision to make a significant investment in one system change initiative in a healthcare transitions environment.
This instructive, 23-page case study reviews the early process of getting to, and moving on The Change Foundation’s ground-breaking Northumberland PATH project. The two-year, $3-million PATH project is the Foundation’s largest and most ambitious to date. Through Project PATH, the Foundation has committed to engaging and supporting a community coalition of cross-sector providers and patients and caregivers to co-design how care is delivered, addressing healthcare transition problems that they identify for improvement.
Marc Langlois, a social innovator and evaluation consultant offers keen, objective reflections on the think tank’s unique balancing act of being a funder embedded inside a change project; thus offering valuable insight to other foundations, organizations contemplating similar “disruptive” work. That is, (as a funder), striking the right balance of being hands off and letting the local project team lead to find unique solutions, while also overseeing and intervening for best results. The case study is based on six key informant interviews and document reviews. The key informants were selected from the Foundation’s staff, the PATH convening organization, a citizen advocate involved in the project, and a Fairness Advisor contracted to oversee the PATH community selection process. Based on themes discussed during the interviews, specific PATH project-related documents were reviewed to verify and clarify information. In addition, evidence and perspectives from peer reviewed journals were reviewed to place the article in the context of the philanthropy sector and change management field.
Using an “Open Systems Theory” filter, Langlois explores the Foundation’s experience with creating space to learn, plan and act within its own organization and within its support of the PATH project. Langlois articulates themes that defined The Change Foundation’s principle-based leadership during the early stages of the PATH project. Langlois notes that as in most comprehensive collaborations, PATH’s potential was in its collective power that brought together diverse community stakeholders around shared ideals and principles to be a true change catalyst.
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