Moving beyond caregiver recognition

In April, the spotlight was shining on family caregivers more than ever before. April 4 was Family Caregiver Day and a number of appreciation events were held to recognize the vital role families play in caring for a family member, friend or neighbour. In fact, for the first time ever, this day was recognized at the national, provincial and municipal level. Later in the month, the Ontario government announced new supports for family caregivers through increased funding for respite services, more education and training programs for family caregivers, a new Ontario tax credit, as well as the creation of a new organization to coordinate supports and resources for caregivers.

These initiatives are definitely welcome. They represent a step forward in recognizing this vital role, giving caregivers a bit more time away from their caregiver responsibilities, and providing needed and necessary information and training. 

But, is it enough? We don’t think so. Our direct engagement with family caregivers, and health care providers and staff tell us a more fundamental shift in thinking is required. Caregivers spend a lot of their caregiving time interacting with the health care system on behalf of their family member. Whether it’s chasing down information, coordinating appointments, or trying to convey vital information about the patient or the patient’s wishes, it can be time-consuming, frustrating and stressful. More access to respite or offering of education to caregivers, while important, does not change the fact that the system itself does not, by and large, value or acknowledge the caregiver role. Policies and practices in health care organizations often actually preclude caregiver involvement in patient care planning. To add insult to injury, busy staff often make assumptions about a family’s capacity to provide support without having a discussion with the caregiver to assess their willingness, ability and availability. And the evidence shows, when caregivers are not valued and supported, they burn out, become isolated, or they themselves become ill.

We are setting out to see if things can be done differently–we believe they can. Our Changing CARE work intends to do just that–change care and the caring experience for the caregiver. Since late January, we’ve announced four Changing CARE projects:

Connecting the Dots…Smoothing Transitions for Family Caregivers (Huron and Perth counties)

Partner Organizations: Huron Perth Healthcare Alliance; One Care Home and Community Support Services; North Perth Family Health Team; STAR Family Health Team; South West Community Care Access Centre; Southwest Local Health Integration Network

 Embrace (Cornwall)

Partner Organizations: The Cornwall & District Family Support Group; Cornwall Hospital, Community Addiction and Mental Health Services

 Improving CARE Together (London)

Partner Organization: St. Joseph’s Health Care London 

Cultivating Change: The Caregiver Friendly Hospital and Community (Toronto)

Partner Organizations: Sinai Health System and WoodGreen Community Services

Through these projects, we are working directly with eleven partner organizations, but the reach is much broader when we look at all the collaborative work planned as part of each project. You can read more about the projects, and what they hope to achieve in the coming years, in Genevieve Obarski’s article Creating New Linkages

April was also a busy month at The Change Foundation, as we welcomed Jodeme Goldhar, Executive Lead, Strategy and Innovation to our small but mighty team. In this role Jodeme will focus on expanding the Foundation’s international and national profile, as well as linking strategy to the execution of the Foundation’s projects. Stay tuned for her reflections on her trip abroad meeting with international colleagues, in our next issue of Top of Mind. 

As always, I’m excited to continue to share the Foundation’s activities with you and I sincerely hope you’ll continue to engage with us on this important shift in the health care system. A shift to recognizing family caregivers, and supporting them in the important role they play as key partners in our health care system.

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WHAT’S BEING SAID

How do we define ‘family caregiver’? By “family caregivers” we mean family, friends and neighbours who provide the vast majority of care, support and enrichment to those who have health related needs. Learn more about us and our work: bit.ly/2H7ZGgw pic.twitter.com/p3yLT8z7c9