I became a carer for my mother when the irritating shoulder soreness that she thought was the result of overzealous pruning was diagnosed as Stage 4 cancer. I recall sitting with her in an oncologist’s office and after hearing it was Stage 4 asking how many stages are there? Four was his grim response. It was a grim time.

I set out to understand the care coordination function and the ever-increasing number of people involved in her care. It was emotionally difficult but I had the advantage of being familiar with the health system.

I can’t imagine how difficult this would be if your first language was not English and the health system you must engage with was so different from what you know and understand. Apart from the grief of knowing a loved one was approaching the end of life, the stress of understanding and navigating the system would be scary and daunting.

From a Culture Ethnicity and Health (CEH) perspective it’s important to talk with communities about how they understand death and dying and the caring roles of family members in that context. It’s important to understand this to then be able to talk about the help and support that is offered to carers in ways that make sense to communities. Through this process communities will understand and accept the help and support as a resource for them without feeling like they are not fulfilling their traditional role as a carer.

It is absolutely critical that information resources are tailored to the cultural understanding of the issue and are mindful of the literacy levels and communication preferences of the community. Some communities have a very strong oral tradition and so audio resources or conversations are preferred but for other communities’ written resources work well. It’s important to ask communities about their preferences so all the hard work that goes into producing resources gets the results intended.

Simple plain language messaging sounds easy, but as the experience of the pandemic has shown, it’s not. But with good engagement with communities and an open approach to format and dissemination, good relationships can develop and good resources that meet the need of the community can be produced. Caring enough to ask the question of communities, how can we best do this together is a great starting point.

I think this project is an exciting step in the direction of understanding and responding to the particular needs of diverse carers and I look forward to continued involvement in the project.