Can you tell us about the scoping study you are conducting and the types of resources that are important for CarerHelp Diversity?
As we know the CarerHelp website came into being in 2019 after an extensive consultative process with carers and health professionals, a review of the current literature and a scoping process to see what was already available. Following on from this we were awarded another grant to look at diversity.
Based on the initial results from the scoping study, how can we inform and upskill family carers and support workers?
Websites that provide end-of-life information specifically to carers and support workers of adults within the chosen groups were included in our scoping study. The focus was on Australian websites but not limited to them. We wanted to identify existing high-quality web-based content and use these as either a link to or as content (with permission) to the website to save duplication.
We focused on the listed diverse populations:
- Culturally and Linguistically Diverse (CALD)
- Aboriginal and Torres Strait Islander (ATSI)
- LGBTIQ+
- People with poor literacy
- People from low socioeconomic backgrounds or are homeless
- People who are vision impaired or have other disabilities which may affect their ability to use online information (without modifications)
" As with the previous scoping study we found resources specific to end of life care are not prolific. "
We also sought information written for support workers, community workers, or community leaders to use in their roles working with family carers of someone with an advanced life limiting disease who are from diverse populations.
We have many resources already listed on the CarerHelp website, the importance here is that our diverse population are able to access them, to read them, to understand them and use them in a way suitable for their needs. As with the previous scoping study we found resources specific to end of life care are not prolific.
There are definitely some great websites, podcasts, information pages, and videos that will be added to our CarerHelp website following this scoping exercise, however many are not available in other languages or specific to the ATSI or LGBTIQ+ communities, resources written in simple English, or for carers who are vision impaired.
The types of resources important to CarerHelp Diversity will be those that can be accessed by the groups already mentioned. We need to be able to link off to their home organisations for generic information and then provide, on our website, information specific to end of life caring.
This may come in many forms, such as a printable page, a video from community leaders, translated pages, captions on carer and professional videos, some of which are already available.
We are yet to consult with carers and community leaders to understand how best to present the material. However, our aim is for family carers and support workers from diverse backgrounds to be able to access tailored and appropriate information on caring for someone at the end of life.
" Our aim is for family carers and support workers from diverse backgrounds to be able to access tailored and appropriate information on caring for someone at the end of life. "
The CarerHelp website is now available for family carers to use and we encourage anyone who has used the website to participate in the online evaluation to help us continue improvements.
Please feel free to contact us directly at carerhelp@flinders.edu.au if you are a carer belonging with any of the diverse groups mentioned above and would like to help us in developing the new resources.
We would like to acknowledge the Commonwealth Department of Health for funding this project and thank our partners, Flinders University, University of Technology Sydney, and Carers Australia.