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

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:

1. 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.

2. 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.

3. 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.

4. 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.

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