The program is based on a US model but has been adapted for use in Australia.
Australian researchers conducting a cancer trial of a different kind – one that focuses on emotional wellbeing rather than clinical intervention – are looking for 500 patient/carer pairs to join the program.
The FOCUSau program is an online initiative of the University of Melbourne and St Vincent’s Hospital and is aimed at people with advanced or recurrent cancer as well as their immediate family carer.
The trial aims to improve emotional wellbeing and quality of life whilst offering coping strategies, future planning advice and symptom management.
Trial lead, Professor Peter Hudson, director of the Centre for Palliative Care, St Vincent’s Hospital and the Collaborative Centre at the University of Melbourne, said there was a critical shortfall in the provision of holistic cancer care in Australia.
He said the program aimed to address this and was also unique as it encompassed the person with cancer and their carer together.
“Naturally, the health sector is heavily focused on clinical treatment interventions for the person living with cancer but there is so much more we can and should be doing to help cancer patients and their family carers cope with the incredible emotional toll that advanced cancer brings,” said Professor Hudson.
“Invariably, people with cancer are supported by a family member or close friend who takes on the role as the primary carer and confidant and these ‘dyads’ usually stumble their way through the emotional, physical and lifestyle impacts of cancer, which can be every bit as unpleasant and confronting as the physical effects of the disease.”
The FOCUSau study is an online program initially developed in the USA and adapted for use in Australia and is designed to complement usual clinical care.
It is delivered via the internet and is made up of four guided sessions. The person living with advanced cancer and their family carer work through the sessions together over three months.
FOCUSau incorporates evidence-based, tailored strategies that address five core components: Family Involvement, Outlook and Meaning, Coping Strategies, Uncertainty and Symptom Management.
Specifically, it encourages people with advanced cancer and their family carers to talk to each other about their needs and concerns; build coping strategies; deal with feelings of uncertainty; plan for the future; and manage common symptoms related to cancer.
“The research trial aims to recruit 500 ‘dyads’, consisting of the person living with cancer and their family carer, so that we can get their feedback to ensure the program is as effective as possible before we launch it at a national level,” said Professor Hudson.
“In its current form and based on similar studies in USA and Europe, the FOCUSau program offers a tremendous amount of value and support to people affected by advanced cancer, but we hope to ensure through our research trial that we have comprehensively evaluated it for the Australian setting.
“This program will make a real difference in the lives of people dealing with cancer and their family carers and by joining our study, participants can share their experiences and insights and ultimately help others facing similar challenges.”
The FOCUSau program is funded by the National Medical and Research Council with ethics approval from St Vincent’s Hospital, Melbourne.
To join in the trial, participants must be willing to take part in the study and have internet access via a computer, smartphone or tablet. Patient/carer pairs will complete the sessions together in their own time at home or another place of their choosing. Each session takes about one hour to complete.
Anyone with advanced cancer who is interested in participating in the trial can find out more here.
