Most people living with a terminal illness and approaching death need the assistance of a non-professional carer such as a family member, friend, or neighbour to provide physical, emotional and practical caring supports - so a project led by Flinders University's Research Centre in Palliative Care, Death and Dying (RePaDD) has developed an effective online resource that can help ease the burdens facing these carers.
"A significant portion of these carers can feel overwhelmed, isolated and experience psychological, along with financial, distress. Carers can have unmet information needs and these can change across the caring period, so they need easy access to support materials," says Flinders University's Professor Jennifer Tieman, Director of RePaDD.
The Flinders team's research project undertook the development of the CarerHelp website (www.carerhelp.com.au) as part of a national collaboration led by St Vincent's Melbourne, University of Technology Sydney and Carers Australia. This open access online resource was designed for use by carers and families caring for a person who has palliative care needs.
Web metrics have demonstrated substantial use of these resources during the project test period. The CarerHelp website was released in October 2019 and attracted 5,701 users, 25,214 webpage views and 7,881 web sessions through the test period to 30 June 2020 (an average of 633 web users and 2802 web page views each month).
Sometimes, it can be difficult to know what goes into building a website, let alone one that deals with providing care and caring for someone in the last months and days of their life. A new research paper focuses on what lies behind CarerHelp website and the effectiveness of the develop and test program.
To best understand considerations for family carers supporting someone with a terminal illness, the researchers developed the CarerHelp online carer resource after conducting interviews and focus groups with carers to understand their needs and context of caring.
"Carers of people with advanced disease facing death have ongoing and changing information needs," says Professor Tieman. "Being able to identify their issues through consultation with carers has ensured trustworthy resources that are relevant to the carer group themselves."
The researchers identified carer needs for practical and psychological support, along with better education and strategies to improve communication. They then used a testing survey and usability assessment of the CarerHelp website to assess and optimise functionality before it was formally released for public use.
"Our study of currently available online resources suggested that while information available to carers is plentiful, much of that which is provided is general, disparately located, inadequately detailed and disease specific," says Professor Tieman.
The carers who were interviewed highlighted the need for helpful information on: services, symptom management, relationships, preparation for death, managing the emotional and psychological burden that often accompanies caring, and support during bereavement.
User testing and usability assessment of the prototype resource led to changes to improve the CarerHelp website - but also highlighted a lack of awareness about existing resources and the need for marketing and communication to address this problem by further promoting the CarerHelp website.
"CarerHelp's marketing strategy seeks not only to build brand awareness but also to utilise broker agencies including specialist palliative care services, care organisations and consumer groups who provide a bridge to carers who may not have had direct access or interest in online resources."
The research - "Who cares for the carers? CarerHelp: development and evaluation of an online resource to support the wellbeing of those caring for family members at the end of their life," by Jennifer Tieman, Peter Hudson, Kristina Thomas, Di Saward and Deborah Parker - has been published in BMC Palliative Care. https://doi.org/10.1186/s12904-023-01225-1
