Tools and resources for caregivers

Please see the list below for additional resources developed by The Change Foundation.

 


Caregiver wishlistCaregiver wishlist

There are an estimated 3.3 million family caregivers in Ontario – nearly a third of the population – and we know that these numbers are only increasing.

As more and more Ontarians become caregivers every day, we wanted to create something to help them on their caregiver journey, and to help the healthcare providers who work with them.

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Lessons from CHANGING CARELessons from CHANGING CARE

In 2017, after a long and detailed search, The Change Foundation identified four Changing CARE partnerships from across Ontario to receive funding and support over the next three years to improve the caregiver and provider experience for their communities.

Changing CARE is the “action phase” of The Change Foundation’s Out of the Shadows and Into the Circle 2015-2020 strategic plan—following on our 2015-2016 year of listening and learning from family caregivers and healthcare providers across Ontario.

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Should Money Come into ItShould Money Come into It?

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

Changing CARE is the “action phase” of The Change Foundation’s Out of the Shadows and Into the Circle 2015-2020 strategic plan—following on our 2015-2016 year of listening and learning from family caregivers and healthcare providers across Ontario.

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7 Things to Think About when Considering Compensation7 Things to Think About when Considering Compensation

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

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?

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Decision ToolA 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.

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.

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2015-2020 Strategic Plan2015-2020 Strategic Plan

April 1, 2015 – The Change Foundation releases new 5-year strategic plan focused on unrecognized “glue” of our system: family caregivers.

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.

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Making Privacy and Consent Rules Work for Family CaregiversMaking 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.

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.

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Making Privacy and Consent Rules Work for Family CaregiversMaking 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.

Our goal in developing this resource is to help family caregivers and care providers better understand the consent and privacy requirements in the legislation, so that they can work together to optimize care and support for patients.

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

A Companion Piece to Making Privacy and Consent Rules Work For Family Caregivers

This companion piece to The Change Foundation’s privacy report focuses on interactions between health providers and the family caregivers of those with mental health and addiction challenges.

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A Profile of Family Caregivers in OntarioA 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.

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Caregiver Resource HubCaregiver Resource Hub

Welcome to The Change Foundation’s Caregiver Resource Hub!

As part of our caregiver engagement and research activities, we have developed a collection of legislation, policies, strategies, and organizations directed at family caregivers. These resources provide access for individuals and groups looking to help improve the experience of family caregivers.

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Rules of Engagement: Lessons from the PANORAMA ProjectRules of Engagement: Lessons from the PANORAMA Project

The PANORAMA Project was a ground-breaking patient engagement project, as well as an incredible learning opportunity for The Change Foundation.

Over the course of two years, 31 panelists from across Ontario met to share their lived experiences and insights as patients and family caregivers on a range of issues related to improving people’s healthcare experience.

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Shedding New Light: One Caregiver’s journeyShedding New Light: One Caregiver’s journey

In March 2015, The Change Foundation formally released Out of the Shadows and Into the Circle, its 2015-2020 strategic plan focused on improving the experiences of family caregivers in the Ontario health care system and their interactions with health providers.

The first year of the strategic plan outlined a comprehensive period of research into the existing literature, legislation, and policy documents that currently exist on the stages and experiences attributed to caregiving.

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Stories Shared, Voices Heard: Ontario’s Family CaregiversStories Shared, Voices Heard: Ontario’s Family Caregivers

When we launched our strategic plan Out of the Shadows and Into the Circle, bringing a new focus to the role of family caregivers in the health care system, we wanted to listen and learn from family caregivers as well as frontline health care providers.

An in-depth report that captures what caregivers shared during The Caring Experience about their experiences and interactions with Ontario’s health and community care sectors. Most importantly, the report features key quotes directly from caregivers on what they want, need, and expect from the health and community care sectors to make their role easier.

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Stories Shared, Voices Heard: Ontario’s Healthcare ProvidersStories Shared, Voices Heard: Ontario’s Healthcare Providers

When we launched our strategic plan Out of the Shadows and Into the Circle, bringing a new focus to the role of family caregivers in the health care system, we wanted to listen and learn from family caregivers as well as frontline health care providers.

An in-depth report that captures what providers shared during The Caring Experience about their experiences and interactions with family caregivers and what they see as the major issues affecting this relationship. Most importantly, the report features key quotes directly from health providers on what they see as specific challenges in the health and community care systems and their thoughts on what an ideal health care future looks like for caregivers and providers.

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Programs and Services Supporting Ontario’s Young CarersPrograms and Services Supporting Ontario’s Young Carers

In Summer 2017, the Change Foundation undertook the research for an inventory of organizations, programs and services across the Ontario that support young carers.

This inventory profiles the organizations that provide much needed support and respite for this often invisible population of caregivers. We hope this resource will help guide young carers, their families and healthcare providers towards finding supports.

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Ontario’s Young CarersOntario’s Young Carers

A young carer is a child, youth or young adult that provides physical, medical, emotional or other supports to a parent, grandparent or sibling.

Ontario has an estimated 3.3 million family caregivers — 17% are young carers between the ages of 15 and 24. There are many more left out of the statistics, as there is no data for young caregivers under the age of 15.

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WHAT’S BEING SAID

"Especially in the beginning, it wasn't a break for us because we would be right there helping" -Emily, Young Carer #youngcarers Hear from other #caregivers in our Wishlist videos: bit.ly/2tb3KDK pic.twitter.com/ykZJ5hTeY3