About This Project
Finding My Way-Advanced was one of the first self-guided web-based programs designed to improve wellbeing for people with metastatic breast cancer. It was designed in collaboration with people with lived experience of metastatic breast cancer to be a 6-week, 6-module program that addresses commonly experienced concerns, such as (i) Navigating Diagnosis including communicating with the healthcare team and decision-making; (ii) The Unique Challenges of advanced cancer, including managing uncertainty, fear of progression, and planning ahead; (iii) managing Physical Symptoms, particularly pain, fatigue, and sleep difficulties, among other side effects; (iv) Emotional Distress, including depression, anxiety, stress, and anger; (v) How You See Yourself, which covers intimacy, identity, and role changes; and (vi) Your Family and Friends, which covers some of the social support concerns people experience and concerns they may have for their loved ones. Module content is provided in a multimedia format, with video and written personal accounts from women living with MBC, educational videos from health care professionals, self-management activities, audio relaxation-mindfulness downloadable files, print psychoeducation with audio-conversion options, and illustrations/imagery throughout.
This current project aims to test whether adding human support and/or guidance to the Finding My Way-Advanced program improves how much people use, and benefit from, the program. That is, we aim to find out whether guidance improves engagement with the program and outcomes, such as quality of life and distress, and if this differs by whether people received guidance via email, phone-call, or video-call.
What Does Participation in This Research Involve?
You will only be asked to participate in this research once you have read all of this information and had the opportunity to decide whether you would like to participate.
If you decide you want to take part, you will be asked to complete a Consent Form. By signing this form, you are telling us that you: (1) understand what you have read; (2) consent to take part in the study; (3) consent to the use of your personal and health information.
If you decide to participate in this research project, you will need to click the check boxes and click the 'I consent' button below before beginning. As part of this process, you will be asked to indicate that you are aged over 18 years, have been diagnosed with metastatic breast cancer, have internet access (home/work/other) and an active email address, and have not been informed by a medical professional that your life expectancy is less than 6 months (women who do not meet these criteria are not eligible to participate in this study).
If you click 'I consent':
- You will be redirected to a secure online survey asking about you (e.g. age, date of diagnosis with metastatic breast cancer), and your wellbeing (psychological, emotional and physical wellbeing).
- Once you complete the survey, you will be randomised (as in the toss of a coin), to use the six-module Finding My Way - Advanced online program with the addition of guidance either via email, phone-call, or video-call.
- You will have access to six online modules designed to provide information and support. You will receive reminders to use these modules once per week, for six weeks. You can log in to use the modules as much you find helpful for this six-week period, and you will still be able to log in after the six weeks is over. The program will track how much or how little you use the program, and this tracking will include Google Analytics to show which pages of the program you use and for how long you use them.
- You will be offered a minimum of two guidance sessions (via email, phone-call or video-call) timed at the start and mid-point of the six-week period. Which guidance format you receive will be determined randomly (by chance), like a toss of the coin.
- Six weeks after completing the first survey, you will be emailed a link to complete a follow-up online survey. If you don't complete this survey at first, you will be sent an email or SMS reminder one and two weeks later. If after these reminders you still have difficulty completing the survey, we will follow up with a telephone call to see if you would like to complete your survey over the telephone or via a posted survey.
- You will be emailed an additional link to complete a follow-up surveys, 3 months later. Like the first follow-up survey, if you don't have the chance to complete this at first, you will be emailed a reminder one and two weeks later. If after these reminders you still have difficulty completing the survey, we will follow up with a telephone call to see if you would like to complete your survey over the telephone or via a posted survey.
- You may be contacted by telephone after the program has finished to see whether you are willing to give feedback on your level of satisfaction with the addition of human support and/or guidance to the program. You can choose to participate in the interview via telephone, Microsoft Teams (a video conferencing platform), or in-person at the Flinders Centre for Innovation in Cancer. If you are willing to participate in this interview, you will be sent a topic guide and will be contacted again at an agreed time to participate in the interview, which will be audio recorded. If you prefer not to participate in this interview, you do not have to. You will be able to tell us this when we contact you.
There are no costs associated with participating in this research project, and you will not receive any payment for participating.
This research project has been designed to make sure the researchers interpret the results in a fair and appropriate way and avoids researchers or participants jumping to conclusions.
The questionnaire will take approximately 20-minutes. You are welcome to save and return to the questionnaire at a later time. If you choose to do this, you will be provided an individualised code which you will need in order to return back into the questionnaire so please write it down. If in the event you do lose your code, please reach out to us at findingmyway@flinders.edu.au and we can provide you with the code.
Other Relevant Information About This Research Project
This study is a multi-site pilot study aiming to test feasibility of the addition of human support and/or guidance to the Finding My Way - Advanced program in improving engagement, quality of life and distress for people living with metastatic breast cancer from all over Australia. It follows several other studies conducted to develop the program, develop the human support and/or guidance, and test usability and feasibility of the program. In this current study, approximately 60 women who have been diagnosed with metastatic breast cancer will take part. All 60 will receive access to the Finding My Way - Advanced online program; 20 will receive human support and/or guidance via email, 20 via phone-call, and 20 via video-call. The coordinating principal investigator (Amy Rigg) will be conducting the guidance sessions for telephone-call and video-call groups, while two student investigators (Emma Zaina and Nicola Freeman) will conduct email guidance. Participating women will have heard about the study either from clinicians or research staff at their treatment centre, or because they have seen a promotion about the study (e.g., online promotion by Cancer Council SA).