By Christa Haanstra, Executive Lead, Strategic Communications, The Change Foundation
A family caregiver identification card.
It’s a simple concept that can have a big impact on caregivers. And yet, it’s not something that existed in Ontario until very recently, when we brought the idea back with us from the UK.
When The Change Foundation began our journey of listening to, and learning from, caregivers, we visited the UK – a country that is years ahead of us when it comes to supporting family caregivers.
While there, we saw a number of Caregiver Identification programs in different communities, all implemented in slightly different ways. They are run by local carer organizations that exist across the UK, and often involved a discount offering for caregivers in their local communities.
At the time, Ontario’s growing caregiver movement was at a different place than it is now, and well behind that of the UK, and our focus at The Change Foundation was on how to improve the experience of caregivers in their interactions with health care organizations and providers. We saw the potential value and impact of a Caregiver Identification card, but we wanted to evolve the concept to be a tool to facilitate the participation of family caregivers in the health care setting.
It didn’t take long for our four Changing CARE partnerships – all situated in health care organizations and partnerships – to agree that a Caregiver Identification program was worth considering, and was quickly prioritized in our work with caregivers.
Our first step was to put together a working group that included caregivers, staff from The Change Foundation and representatives from each of our four Changing CARE teams to explore the idea. Our group quickly identified the fact that a Caregiver ID program could be linked to family presence policies, which many Ontario hospitals had either already in place, or were in the process of considering.
Once we co-designed and developed the basic components – including a visual icon and tools to help with implementation – two of our Changing CARE teams were ready to further develop the program using a co-design approach that would work in their setting.
We’ve now seen it implemented in three different settings in three very different ways. The Change Foundation believes this is one of the program’s biggest strengths – it’s adaptable to many environments.
For caregivers, being offered an ID can have an enormous impact. It’s a simple act, but it opens so many doors:
- It is validation of their role, and can often be the first time they’ve received such recognition.
- It can be used to ease participation in conversations with health care professionals and at health care appointments, and gives them the extra confidence to ask questions or provide supplementary information.
- In some settings, it doubles as a security pass to access hospital floors or to get in and out of the building after hours.
For providers, the Identification Card helps them know which family members are involved in the care of their patients. It also gives them a reason to check in with the caregivers, and build a relationship in a proactive way.
We know there are some fundamental shifts that need to happen in the system to create awareness, understanding and ultimately to effectively support and integrate caregivers into the health care team.
Those shifts take some time to design and implement, and yet we have seen the impact of smaller actions, like Caregiver Identification, that can make a big difference in recognizing and validating caregivers, and support other awareness and education efforts. The number of family caregivers is growing to the extent that it is one of the most important roles in our society. We can even quantify it. Our research shows that caregivers provide between 11 and 30 hours of care a week, and some provide so much care they can’t even count the hours. We estimate that these family caregivers contribute the equivalent of between $26 and $74 billion to our society every year.
As the number of caregivers grows, and the expectations increase as more people choose to stay at home, or receive more care in the community, we all need to think about how better to support family caregivers in their crucial role.
We look forward to a day when Caregiver Identification programs aren’t needed, because caregivers are fully integrated into healthcare teams. Until then, we hope our Identification tools are used by more and more health care organizations to facilitate the role of caregivers, and to create a critical mass of the I am a Caregiver visual that supports better understanding of the role of family caregivers in health care and in our society as a whole.