New online tool to support people with metastatic breast cancer
A new online support tool aiming to guide people through the psychological impact of their advanced/metastatic breast cancer diagnosis has now entered the testing phase, with those living with the disease invited to take part and trial the free program.
Developed by researchers at Flinders University with support from Breast Cancer Network Australia and Cancer Council SA, Finding My Way–Advanced is designed to support people through stage 4, also known as advanced metastatic breast cancer, which is a treatable but currently incurable form of the disease.
Program developer and clinical psychologist Associate Professor Lisa Beatty from Flinders University's College of Education, Psychology and Social Work says that while metastatic breast cancer can't be cured, improvements in medicine can help keep the cancer under control and have thankfully led to many people living longer, in some cases more than 10 years.
"This gives rise to a unique situation where someone can live for a reasonably long time following their diagnosis but alongside this, they also have to live with the uncertainty that the cancer may progress at any point," says Associate Professor Beatty.
"Our program is designed to help them through this journey, from navigating the health care system and their treatment, through to providing coping strategies for the physical, emotional and social changes that an individual may experience.
"Our ultimate goal is to help people come to terms with living with advanced or metastatic breast cancer as a chronic condition, but more important to be able to live well with it."
Initially developed more than 10 years ago, a different version of the program, Finding My Way, was designed to support those with a diagnosis of all forms of early-stage cancer, with that program now freely available in Australia, and also adapted by health services in England, Europe and the U.S.
"While that initial program has had a positive impact, we realized the materials weren't suited for those with an advanced stage diagnosis and we were missing the opportunity to support an important part of the cancer community," says Associate Professor Beatty.
"People with metastatic cancer are often overlooked when it comes to support services, so we wanted to create something that was targeted to their unique circumstances.
"We're starting with advanced breast cancer for this trial, but our hopes are to also tailor the program to other advanced cancers in the future."
Associate Professor Beatty and her team are now undertaking a large study to test the effectiveness of Finding my Way–Advanced, in hopes it too can be made freely available.
Currently the support service is only available to those enrolled in the study, but recruitment is still underway, with the researchers inviting those interested in using the program to get in touch (further details below) or enroll directly via the website: www.findingmywayadvanced.org.au.
Delivered online, with people able to access it in the privacy of their own home and at their own pace, the program contains cognitive behavioral therapy, alongside relaxation and mindfulness techniques and writing exercises.
There are six modules available:
- Navigating health care
- The unique challenges: (particularly living with fear of progression and uncertainty)
- Physical symptoms
- Emotional distress
- How you see yourself
- Your family and friends: How to build a support network and also support your loved ones and children
"Finding my Way–Advanced provides a wealth of information to the individual following their diagnosis but beyond that it includes evidence-based strategies to help them through this difficult time in their life," says Associate Professor Beatty.
"Initial feedback from users has included finding the program helpful and relatable, easy to use, and of high quality. The online aspect has been particularly valued as it is convenient, accessible at any time, and enables women to self-pace their progress; 'If I didn't want to finish that module, I didn't have to so I could go out and then come back in later.'"
"As medicine continues to advance and more people live with these incurable cancers for longer, this population will only continue to grow, and we need to ensure they are well supported with evidence-backed services that are easily accessible."
BCNA Director of Policy, Advocacy and Support Services Vicki Durston said this online program is a much-needed tool for those who have been diagnosed with metastatic breast cancer, and provides support on diagnosis, treatment and living well.
"I'd really like to acknowledge the two BCNA Consumer Representatives, who are living with metastatic breast cancer, who were advisers on the design of the resource," Durston said.
"BCNA has been proud to be part of this long-standing research partnership with Flinders University on a project that will have a significant impact for people living with metastatic breast cancer."
Cancer Council SA's General Manager, Support and Research Dr. Peter Diamond says, "Cancer Council SA is proud to have supported development of Finding My Way and now Finding My Way–Advanced. This tailored and unique program is so important to support people to live well, understand treatments and cope with the challenges of an advanced metastatic breast cancer diagnosis."
For more information or to join the trial go to www.findingmywayadvanced.org.au. Criteria includes that participants must be aged over 18, have a diagnosis of stage 4 or metastatic breast cancer, the ability to access a computer and a reasonable understanding of English.
Provided by Flinders University