How we applied an equity lens to our caregiver engagement

By Yinka Macaulay, Senior Associate, Strategy and Innovation, The Change Foundation


Plus one please…

When we hear this phrase, we often think of bringing people that we know to weddings or dinner parties.

But how often in our lives can we say that we hear unfamiliar voices at the table? And how often do we look up from our seats to notice if there are voices that are missing?

This is not only true in our personal lives, but also in healthcare. Relatively recently, patients/clients and caregivers were often excluded from the table. We’ve come a long way in a short time on that front (though we still have a long way to go!). But do we still take the time to look up from our seats every once in awhile to ask what voices are missing?

In 2018, as part of our work with family caregivers, The Change Foundation set out to build our capacity to apply an equity lens to our engagement – that is, to ask exactly that question.

We challenged ourselves as an organization to look up and pay attention to not only who is at the table, but also who is missing, and consider how we can ensure they have the opportunity to be heard.

Underpinning our approach were the following guiding principles, which served to ground our work, and help us plan how it could evolve over time:

  • Guiding Principle 1: We value and aim to seek out the voices that reflect the diversity of Ontario’s caregivers

Though there are similarities across caregivers, we also know variation exists within their individual and collective lived experiences. As a result, we will be thoughtful in the ways in which we think, plan and engage. This will inform the evolution of our engagement work over time.

  • Guiding Principle 2: Nothing about us… without us

We will work in partnership—exploring our existing relationships and potential new relationships to listen and learn from the voices of caregivers.

Reflecting on our journey so far, here are our learnings, observations and reflections on applying an equity lens to our engagement:

  • Learning 1: Choose the best timeframe for meaningful input

In short: trust the process. Although you may want to jump straight into convening an engagement, we found it helpful to frame the process in three steps: think, plan, engage. Working through these three steps in a meaningful way can take time. But taking this time to think about the specific populations that you are engaging with, as well as the gaps that exist, can help organizations take a more targeted and intentional approach to creating opportunities for diverse voices to be invited to the table, while also building relationships and trust.

  • Learning 2: Consider a range of engagement formats

This includes an openness to exploring both traditional and non-traditional methods. Taking the time to think through your organization’s preferred methods of engagement will help to identify potential blind spots where segments of the target population are not being reached.

And remember: one size does not fit all. As your organization seeks to engage and connect with diverse voices, it may be beneficial to expand on the preferred or most commonly used method of extending an invitation for participation. Both open and targeted approaches enable greater inclusivity of the diversity within the population to reached.

For example, as part of our strategy to invite caregivers to join our online panel, we cast an open and wide net with our digital tools such as Twitter, Linkedin and our e-newsletter. But in addition, we used data to understand our caregiver panel composition and used more targeted approaches to connect into underrepresented communities.

  • Lesson 3: Consider partnering

Use relationships to be able to make more meaningful connections with the people you seek to engage with. In instances where connections may not exist, don’t be afraid to explore new relationships and partnerships.

  • Lesson 4: Give participants the tools they need to succeed

Tools and resources may need to be adapted to be relevant and resonate with specific communities. For example, when reaching out to some specific communities to join the Foundation’s online caregiver panel, we had more success when we created a targeted printable recruitment poster that could be posted on bulletin boards.

In addition, in consideration of the diverse communities Sinai Health’s Bridgepoint site serves, Changing CARE’s Cultivating Change project used the Ministry of Health’s Health Equity Impact Assessment (HEIA) to help facilitate equity-based quality improvements to improve the caregiver experience.

In the Neonatal Intensive Unit (NICU) and in the Stroke Units, co-designed materials focused on building caregiver capacity and supporting caregiver wellness have been translated into more than 5 languages to support health literacy by removing language barriers that may exist. To determine which languages to translate materials to, the project team completes an assessment of the unit where the change idea is to be implemented. In doing so, the project team ensures that translated materials are useful to the diverse population that particular unit serves.

Overall, the message is clear: sometimes, it takes a little bit more work to gather more diverse voices around the table. But we’ve found that work to be worthwhile, and, for us, has created more valuable and representative engagement with caregivers.

We are going beyond more than a plus one.