caregiver

Out of the Shadows and Into the Circle: From Listening and Learning to Action

In April 2015, The Change Foundation launched our 2015-2020 strategic plan. In that document, we knew that the experience of family caregivers is inextricably linked to the experience of the people they are caring for. However, we knew we needed to know more in order to fully understand the breadth and depth of the family caregiver experience in Ontario.

Out of the Shadows and Into the Circle: From Listening and Learning to Action details The Change Foundation’s listening and learning process throughout 2015-16. It provides an overview of what we heard from Ontario’s family caregivers and health providers through various research and engagement activities. The report also outlines the direction and next steps that will be taken as we enter the “incubate and innovate” phase of our strategic plan.

Specifically, the report gives a deeper outline of the four thematic challenges outlined by family caregivers:

Recognition of the family caregiver role and responsibilities

Recognition of the caregiving role needs to be acknowledged by both caregivers themselves and by the patient’s health care team. Our contention is that caregivers need to be a member of the health care team – valued and respected for their role in the patient’s journey.

Communication between caregivers and system providers

There is often a lack of information and communication with caregivers about what to expect regarding the patient’s condition—from the anticipated care trajectory to the expectations inherent in a caregiving role.

Family caregiver identification and assessment of caregiver needs

Currently, there is little assessment of the abilities family caregivers have and what resources they might need once their caregiving role begins. To compound that, ongoing check-ins with caregivers to assess their needs or physical/emotional state rarely happens.

Support, training and education for caregivers

Caregivers want and need support, education, and skills training to help them in their role. Simply needing “a break” was top of mind, yet many caregivers and providers struggle to find programs and resources to make this happen.

 

These four themes from the report serve as the basis for Changing CARE, The Change Foundation’s funding initiative for Ontario health care delivery/service organizations.

Download the report in its entirety below.

Report and Related Resources

For more information, please contact:

Communications at info@changefoundation.com

 

 

Ontario’s health providers bring insight to the other side of caregiving

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.

New Report from The Change Foundation Takes a Closer Look at Family Caregivers in Ontario

Profile-Family-Caregivers-coverToday 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 report’s key findings include:

  • An estimated 3.3 million Ontarians, 29% of the provincial population, are family caregivers.
  • 53% (1.8 million) of caregivers are women and 47% (1.5 million) are men.
  • Nearly three in 10 caregivers perform medical treatments such as tube feedings, wound care and injections.
  • 5 million Ontario caregivers are balancing caregiving duties with paid employment and of these caregivers:
    • 30% (741,000 people) were late for work or had to leave early;
    • 29% (735,000 people) missed an average of six days of work because of caregiving duties; and
    • 1% (33,000 caregivers) left their employment voluntarily or involuntarily.
  • One million caregivers said they felt they had no choice in taking on their caregiving responsibilities.

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.

For more information about our engagement with family caregivers, or to download, A Profile Family Caregivers in Ontario, please visit www.changefoundation.ca.

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:

Communications at info@changefoundation.com

A Profile of Family Caregivers in Ontario

Over the last decade, health care in Ontario has increasingly become more community- and home-based. However, even though options exist for individuals to manage their own care at home, a family member or friend is also likely acting as caregiver throughout the health care journey.

A Profile of Family Caregivers in Ontario, an in-depth review of Ontario-specific data from Statistics Canada’s 2012 General Social Survey (GSS), is a first step in better understanding the province’s family caregivers. The data help to paint a more complete picture of family caregivers in a number of key demographic categories, including gender, health, and socio-economic status. More importantly, the data also shed light on some of the reasons why family caregivers provide care, the types of activities associated with the caregiving role, and the impacts these activities have on the lives of family caregivers.

Among the report’s key findings from the GSS data include:

  • An estimated 3.3 million Ontarians, 29% of the provincial population, are family caregivers.
  • 53% (1.8 million) of caregivers are women and 47% (1.5 million) are men.
  • Nearly three in 10 caregivers perform medical treatments such as tube feedings, wound care and injections.
  • 2.5 million Ontario caregivers are balancing caregiving duties with paid employment and of these caregivers:
    • 30% (741,000 people) were late for work or had to leave early;
    • 29% (735,000 people) missed an average of six days of work because of caregiving duties; and
    • 1% (33,000 caregivers) left their employment voluntarily or involuntarily.
  • One million caregivers said they felt they had no choice in taking on their caregiving responsibilities.

The Change Foundation hopes that by showcasing the variety of caregiving experiences as represented in the GSS data, this report on family caregivers in Ontario can serve as an important starting point for Ontario policy and decision makers for further investigation and action in supporting caregivers in their role. This data, along with the research and engagement work completed in the first year of our strategic plan, will inform the next phase of our strategic plan work.

Report and Related Resources

About the General Social Survey:

The data in this report, unless stated otherwise, comes from Cycle 26 of the General Social Survey (GSS), a Statistics Canada program made up of a series of independent, annual, cross-sectional surveys, each covering a specific topic in-depth. The GSS survey was conducted in February 2012 covering the topics of caregiving and care receiving for a long-term health condition, disability or problem related to aging. The survey was conducted over the phone, with a care receiver and a caregiver.

To find out more about the GSS, or to learn how to access the full data set, 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:

Lori Hale, Executive Lead, Research and Policy, at 416-205-1315 or lhale@changefoundation.com

Communications at info@changefoundation.com

Looking Back and Looking Forward: The Caring Experience

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.

 

Reflection 1: Caregiving takes a deep and varied emotional toll.

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.

 

Reflection 2: Caregivers need empathy and true understanding from health providers and from their personal social circle.

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.

 

Reflection 3: Caregivers are an extremely dedicated and resilient group of people.

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.

 

Final thoughts

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.

2015-2020 Strategic Plan

The Change Foundation releases new 5-year strategic plan focused on unrecognized “glue” of our system: family caregivers.

“Our health care system is dependent on unpaid caregivers. And the reality is that these caregivers are often not recognized or respected for the role they play. At best, there is an inconsistent approach to family caregivers. In many cases, they are not even considered as key members of the care team.” (The Change Foundation, Strategic Plan)

The Change Foundation today announces the focus of our next five-year leg of strategic work – Out of the Shadows, Into the Circle. We plan to build on our past two strategic plans focused on improving experiences for patients and family caregivers as they move across Ontario’s healthcare system. Although many ideas and trends were evident, there was one consistent theme – the vital, yet often unrecognized, role of informal or family caregivers in the system. We are committing to shining a light on this area. Based on what we know already, we believe that valuing and recognizing family caregivers as integral members of the health care team should be an urgent focus for our health system.

Our strategic goal: to improve the experience of family caregivers as they help their family members transition through and interact with Ontario’s health and community care systems.

Research tells us that most Ontarians have been or will be a family caregiver at some point. Twenty-nine percent of the provincial population – or 3.3 million people – provide some form of support, assistance, care or enrichment to a family member or friend. Both women (53%) and men (47%) in Ontario take on caregiving roles.

We believe, that by recognizing, facilitating and supporting the role of the family caregivers, we can improve patient experience, coordinate care more effectively and create an environment in which the highest quality health care can be delivered. This plan was developed with input, insight, and ideas from over 100 people, including our Strategic Plan Renewal Working Group, our Sounding Board and TCF’s citizen’s panel, PANORAMA.

Our agenda will evolve and flesh out in the first year, The Change Foundation will focus on listening and learning to better understand the family caregiver experience as part of the patient experience and to identify promising models or initiatives for effective and collaborative engagement between family caregivers and providers. This exploratory work will help us scope out and identify our specific projects and policy work that will be the focus in the remaining years of the strategic plan.

Key Work Ahead

Develop a framework for understanding a focus on family caregivers as part of the patient experience.

We will use the framework to illustrate how the focus of the Foundation fits within the big picture and the important work of other organizations. This will help us identify where our focused contribution will have the biggest impact.

Learn more about family caregivers in Ontario.

We will ask: who they are, what they need, who is helping them and how they are helped, what are common challenges for all family caregivers, what are unique challenges for sub-groups of family caregivers.

Engage with family caregivers, patients and providers.

We want to learn more about the challenges that family caregivers encounter when they interact with providers and the health and community care systems and in particular, we want to learn more about the issues facing diverse and multicultural families. We will also engage with providers to understand their frustrations with the status quo.

Develop an engagement plan for moving forward.

We will develop an engagement plan to best listen and learn family caregivers, patients, providers and system representatives as we further define and implement our strategic plan.

Learn about innovative provider and family caregiver partnerships and initiatives.

We will undertake a systematic review of the literature and informally published reports and documents to learn more about innovative initiatives within Ontario and in other jurisdictions where providers and organizations are collaborating with family caregivers and patients for mutual benefits. We will use this reconnaissance to shape and identify our priority initiatives.

Learn about efforts to integrate health and community care.

We will also monitor efforts in other jurisdictions to join-up and better integrate health and community care given how this integration can help to improve the experience of family caregivers and patients.

Stay tuned for more announcements on how we plan to move from “thinking” to “doing” over the life of this plan. The Foundation looks forward to working closely with all parts of the system as we move forward on tackling this important next frontier – we are all in this together.

 

WHAT’S BEING SAID

Created in partnership with our #ChaningCARE teams, register to complete this 3-part eLearning module to learn through tips and examples how as healthcare providers you can help improve the experience of family caregivers. bit.ly/2U1Mlcs pic.twitter.com/lKzWKDPM4A