Diverse and complex needs of carers
It is not easy caring for someone with a life-limiting illness that cannot be cured. Knowing that someone you care about is going to die can be overwhelming and impact all aspects of your life. Often it is someone’s first experience of dying so they need information and support.
Carers need help with a number of different areas:
Firstly, information about what type and how much support the person they are caring for will need at the end of life and how caring will change as they approach death. Being prepared for the caring role is one of the biggest needs that carers report.
The second area is understanding the health system - including who is in the health care team, what do they do, and who they should call. Carers may need to know how to advocate for the person they are caring for and be part of important communications and decisions that may affect them as the carer.
Thirdly, all carers need to be supported to prioritise their own wellbeing and actively develop a self-care plan. We want carers to be able to cope with the demands of caring which means also getting to their own medical appointments, using their supports, and continuing to do activities that help them be emotionally and physically healthy.
Tailored information resources critical
All carers should have access to information to help them with their role, but not all carers are able to access information in the same way or in the same language.
People have different values, religions, and cultural practices, so the information people require may vary, particularly in relation to the way people view death and the caring role.
" Being prepared for the caring role is one of the biggest needs that carers report. "
It is important that we provide the right information, in the right format, and at the right time. The CarerHelp Diversity project will focus on ensuring that we provide important information to people in a format and language that they can engage with it.
A collaborative project
We have a number of organisations on our National Reference Group (NRG) that represent a range of diverse populations, including cultural groups, people who identify as LGBTIQ+, and those with vision impairment.
Through our NRG member organisations, we will be able to approach and consult with community leaders and community members from a whole range of diverse populations to discuss their views on the type of end-of-life information they think is important.
This process will occur over the next six months and will include interviews and written feedback. We welcome all feedback from anyone who works with or identifies as:
- being from a culturally and linguistically diverse community
- Aboriginal or Torres Strait Islander
- LGBTIQ+
- living with a disability
- being part of a minority group or other non-mainstream group.
" Not all carers are able to access information in the same way or in the same language. "
Once done, carers from a range of diverse backgrounds will be able to access tailored and appropriate information on caring for someone at the end of life in a range of formats.
We are hoping that CarerHelp will be improved so that there is a simple entry point and directory to assist diverse people find the information that is most suited to their culture, language, abilities, and identity.
Be a part of CarerHelp Diversity
If you would like to be involved in reviewing new resources or being involved in an interview please contact us directly by email (carerhelp@flinders.edu.au) or complete the feedback section on the website.