1. What is Connecting the Dots for Caregivers?
Connecting the Dots for Caregivers is one of The
Change Foundation’s four Changing CARE projects across Ontario and is a
partnership between six health care organizations in Huron Perth. Together,
with caregivers, we are looking at ways to improve the caregiver experience by
co-designing solutions, programs and resources that will ensure caregivers feel
valued, respected, engaged and supported in their important role. The project
is funded by The Change Foundation.
2. What do you mean by caregiver?
A caregiver is
a family member, friend, or neighbour who provides personal, social,
psychological and physical support, assistance and care for a family member or
friend in need.
3. Who are the health care partners involved
in Connecting the Dots for Caregivers?
There are six partnering organizations: Huron Perth Healthcare
Alliance (HPHA), The North Perth Family Health Team (NPFHT), STAR Family Health
Team (STAR FHT), One Care Home and Community Support Services (One Care), the
South West Local Health Integration Network (SWLHIN), and Alzheimer Society of
Why is this work important?
There are an
estimated 3.3 million caregivers in Ontario – nearly a third of the population
– and we know these numbers are only increasing. Patients want
to live in their home for as long as possible, but they often can’t do that
without the support of a caregiver.
Since the project began, Caregivers have told us they are honoured to
care for their loved one or friend, but many are struggling to cope. Many feel
isolated, anxious and often depressed. They spend too much time trying to find
the information they need and they have a hard time asking for help. This
project aims to improve their experience.
What does success look like?
Health care providers will be supported to:
- Communicate with
caregivers as an essential part of the care team
- Assess the needs of
caregivers to ensure they are understood and met throughout the care journey
- Recognize the value and
contribution caregivers make in the care of their loved one
- Educate family
caregivers about the available resources and supports to ease their caring; educate
myself, as a care provider, to engage with and learn from caregivers
Caregivers will experience:
- Reduced stress and
- Reduced sense of
- Decreased risk of
family caregiver “burnout”
- Elevated sense of worth
- Increased confidence
- Retained sense of self
- Improved self-care
(sleep, nutrition, exercise, socialization)
- Improved state of
physical, emotional and mental health
What is The Change Foundation?
The Change Foundation is an independent health
care think-tank that works to inform positive change in Ontario’s health care
system. Its current strategic plan is focused on
improving the caregiver experience in Ontario, specifically by focusing on
caregiver interactions with the health care system.
The Change Foundation’s four Changing CARE
projects are focused on local supports, programs and resources that address
four thematic needs: Communications, Assessment, Recognition, and Education
(CARE). These needs were identified by both family caregivers and health
providers as part of The Change Foundation’s Caring Experience project.
7. What do you mean by ‘co-designing solutions’?
Experience-based co-design is an approach that enables staff and
caregivers to co-design services and/or improvements, together in partnership.
It involves gathering experiences from patients and staff through in-depth
interviewing, observations and group discussions, identifying key ‘touch
points’ (emotionally significant points) and assigning positive or negative
feelings. Staff and caregivers are then brought together to explore the
findings and to work in small groups to identify and implement activities that
will improve the service or the care pathway.
*based on definition provided by Point of Care Foundation
8. What is the timeline for this work?
Connecting the Dots for Caregivers is a three-year project
(2016-2019). The work focuses on three key themes that came out of the
engagement phase: Awareness and Recognition, Communication and Information and
Education, Training and Supports. For more information about these themes and
the work done to date, visit www.hpha.ca.
9. What is the Time to Talk
Time to Talk toolkit was created with the help of our first co-design team, as
well as with the help of partner organizations. The team focused on creating
solutions to address the first theme of awareness and recognition. The toolkit
aims to raise awareness of the challenges of being a caregiver, while also
providing important information to caregivers and healthcare providers. It
includes posters, a pamphlet with information about being a caregiver, signs of
burnout and some initial resources available in Huron Perth. It also includes a
learning module and tip sheet for healthcare providers. These tips are easy things
healthcare providers can do to support caregivers.
10. How can this toolkit support
my patients and will it add extra work to my day?
make it possible for patients to live in their home, which is where they want
to be. By supporting the caregiver, you are supporting your patient. You are
also helping caregivers to not become patients themselves which helps to
alleviate pressure on the health care system.
toolkit provides seven easy things you can do to make a difference to the
caregiver experience. These tips, designed by caregivers, support focused
conversations. Healthcare providers who have used the toolkit have shared that incorporating
these tips into their practice hasn’t added more work to their day. Instead
they believe it’s made their practice more meaningful.
11. I think this is a great
initiative but health care resources are limited. What’s being done to address
the shortage of PSW workers in our community?
the past few months the majority of Local Heath Integration Networks (LHIN)
have been experiencing a critical shortage of Personal Support Workers (PSW).Provincial
committees are being established to address this and local strategies are being
implemented within each LHIN to try and address the immediate challenges. These capacity challenges are
not limited to one service provider or one community but are across our region,
and across Ontario.
South West Local Health Integration Network (SWLHIN) is actively working with
local providers and provincial colleagues to develop short and long term strategies
to meet these capacity challenges. There are also urgent processes underway to
address quality care issues to ensure patients and their families are receiving
the best care possible. As always, the SWLHIN carefully prioritizes referrals
for new or additional services.
it make more sense to use the money being invested in Connecting the Dots to
fund more services that support caregivers i.e. respite?
Connecting the Dots for Caregivers is funded by The Change Foundation, an independent
health policy think tank created through an endowment from the Ontario Hospital
Association. The Change Foundation's current strategic plan is focused on
improving the caregiver experience in Ontario, specifically by focusing on
caregiver interactions with the current health care system.
As part of this work, The Change Foundation is funding four Changing CARE
projects across Ontario. Connecting the Dots for Caregivers is one of these
projects. All four Changing CARE partnerships are focused on creating solutions
that enhance local supports, programs and resources that address four thematic
needs: Communications, Assessment, Recognition, and Education (CARE). These
needs were identified by both family caregivers and health providers as part of
The Change Foundation’s Caring Experience project, a series of engagement with
caregivers and providers from across Ontario.
The Changing CARE projects enable caregivers and healthcare providers to come
together to co-design solutions and tools that will support caregivers in their
journey and ensure they feel valued and respected in their important role.
13. What’s next for the project?
different stages throughout the project, we are developing and piloting tools
that will help to improve the caregiver experience. We will continue to share
updates through our newsletter. Click here to see the most recent edition of our newsletter and earlier updates.
14. How can I access the Time to Talk
Click here for more information about the Time to Talk Toolkit. You can watch our e-Learning video, review the pamphlet and request the Time to Talk
Toolkit for use in your organization.
15. How Can I Learn More about
the Connecting the Dots for Caregivers?
To learn more about our project, read our newsletters or follow us on social media.