Most people living with a terminal illness or are at the end of their life need the assistance of an unpaid carer such as a family member, friend, or neighbour to provide physical, emotional and practical supports – but a new and improved online resource is helping ease the strain.
The team at Flinders University’s Research Centre in Palliative Care, Death and Dying (RePaDD) was part of a collaboration between other Australian universities and Carers Australia to further develop the CarerHelp website. The website was established in 2019 and is an open-access online resource designed to be used by carers and families caring for a person who has palliative care needs.
The research included a series of interviews and focus groups with carers and found this demographic needed helpful information on:
Paired with the interviews, researchers used a testing survey and usability assessment of the CarerHelp website to assess and improve its functionality which also highlighted a lack of awareness about existing resources.
Beth Doggett is a specialist cancer navigator with Rare Cancers Australia and uses the CarerHelp website with her patients and families.
“I find on a daily basis we are assisting patients and carers to navigate through the complex area of end-of-life care [and] I found I was referring patients out to other services, instead of being able to direct them to one source,” she explained.
“I find being able to access CarerHelp with both the patient and carer, to be wonderfully calming and empowering. I can be speaking with a patient and carer while having the CarerHelp website open – it assists me with talking about this subject in a concise and well-summarised way. Then the website is passed along to the family for them to go through at their own pace.”
Director of RePaDD and Flinders University’s Professor, Jennifer Tieman, stressed that many carers can have unmet information needs and these can change across the caring period, so easily accessing support materials is vital.
During the next three years, CarerHelp is planning to add resources to target the needs of end-of-life unpaid carers in regional and remote settings in the form of interactive online information and support sessions delivered by a health professional. The aim is to meet the needs of carers outside metropolitan cities who have more difficulty accessing specialist palliative care and grief services.