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 Perth County.
4. 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 is launching tools to support them and educating healthcare providers on how to improve their experience.
5. 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 engaged throughout the care journey
- Recognize the value and contribution caregivers make to the care of their loved one
- Educate caregivers about the available resources and supports to ease their journey
Caregivers will experience:
- Reduced stress and anxiety
- Reduced sense of feeling overwhelmed/isolated
- Decreased risk of caregiver “burnout”
- Elevated sense of worth
- Increased confidence
- Retained sense of self and identity
- Improved self-care (sleep, nutrition, exercise, socialization)
- Improved state of physical, emotional and mental health
6. 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 has focused on three key themes that came out of the engagement phase: Awareness and Recognition, Communication and Information and Education, Training and Supports.
9. What is the Time to Talk Toolkit?
The 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 video and tip sheet for healthcare providers. Using the tips is an easy thing healthcare providers can do to support caregivers.
10. How can this toolkit support my patients/clients and will it add extra work to my day?
Caregivers 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.
The toolkit provides seven easy things you can do to make a difference to the caregiver experience. These tips, designed by caregivers and healthcare providers, 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 and 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?
Many Local Heath Integration Networks (LHINs) have experienced a shortage of Personal Support Workers (PSWs).Provincial committees are being established to address this and local strategies are being implemented within each LHIN to try and address this challenge. This capacity challenge is not limited to one service provider or one community but are across our region, and across Ontario.
The South West Local Health Integration Network is actively working with local providers and provincial colleagues to develop solutions to meet these challenges. There is also work underway to address quality care issues to ensure patients and their families are receiving the best care possible. As always, the South West LHIN carefully prioritizes referrals for new or additional services.
12. Would it make more sense to use the money being invested in Connecting the Dots to fund more services that support caregivers (e.g., 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 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?
At 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 Toolkit?
Click here for more information about the Time to Talk Toolkit. You can watch our 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.