Sep 01, 2023

Online resource revamp to better support unpaid carers

Shutterstock_637042672
In 2020, Australia’s 2.65 million carers provided nearly 2.2 billion hours or $77.9 billion worth of unpaid care. [Source: Shutterstock]

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: 

  • Services
  • Symptom management
  • Relationships
  • Preparation for death
  • Managing the emotional and psychological burden that often accompanies caring
  • Support during bereavement  

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.

Staff-Photos-Beth_2022-New(1)
Ms Doggett discovered CarerHelp in 2022 and realised the service could complement her work. [Source: Rare Cancers Australia]

“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.

Leave a Reply

Your email address will not be published. Required fields are marked *

Advertisement
Advertisement
Advertisement

Tracey Spicer cared for her grandfather in his final years – now she has a new carer’s role

The respected TV journalist cared for her beloved grandfather in his final years, whilst working full-time and raising two children. Now she has a new carer’s role and Spicer says she wishes she knew earlier about accessible support services that enable people to remain independent as they grow older. She shares her story. Read More

“They’re always here”: Experiencing ghosts in aged care facilities

If you have ever experienced continuous call bells coming from the room of a deceased resident, or the spirit of an old nurse floating down the hallway - you are NOT alone. Read More

Labor will bring in overseas staff to fulfil aged care election promises if elected

Anthony Albanese has admitted that the Labor party would look to bring in more foreign workers in order to fulfill his promise of having a registered nurse in every aged care home at all times within one year of being elected. Read More
Advertisement