Research opportunity: Survey about the well-being of people affected by breast cancer
Hi all, I wanted to let you know about a research project you may be interested in participating in. Researchers at the South Australian Health and Medical Research Institute (SAHMRI) are conducting a project aimed at finding the best ways to collect information about people’s health and well-being after receiving a diagnosis of breast cancer, and beyond diagnosis and treatment. This information would provide vital information to doctors, health professionals and clinicians about issues and gaps in breast cancer care after a breast cancer diagnosis. The researchers are inviting you to participate a survey to help them understand how information about people’s health and wellbeing after a breast cancer diagnosis can be connected in a regular, non-intrusive and meaningful way. Who can participate? You can participate in this study if you: Have been diagnosed with breast cancer Have been diagnosed within the last five years. What does the study involve? If you are interested in the study, you will be asked to participate in an online survey. If you participate, you will be asked questions about your diagnosis and treatment, and your physical and emotional well-being. The survey will take about 30 minutes to complete. At the end, you will be asked whether you would like to receive a summary of results and whether you would like to participate in follow up research. There is no obligation to take part in any follow up information. Your responses to the online survey will be anonymous. How do I take part? You can take the online survey here: https://qualtrics.flinders.edu.au/jfe/form/SV_bf8MQTS7Q57eX7D. If you have any questions or would like to find out more information please contact Dr Kerry Ettridge, Senior Behavioural Scientist, by email: Kerry.ettridge@sahmri.com or by phone: (08) 8128 4094. Thanks very much for taking the time to consider this opportunity.
BCNA's breast reconstruction project - Share your views
BCNA's breast reconstruction project - Share your views BCNA wants to make a difference to breast reconstruction in Australia. We have developed a survey to better understand members’ experiences of breast reconstruction, including issues around access, waiting times, the financial impact of reconstruction and the recent impact of the COVID-19 pandemic and restrictions on elective surgery which occurred in 2020. You do not have to have undergone a breast reconstruction to take the survey. But you do need to have considered having a mastectomy (either as part of your breast cancer treatment, or as a way to reduce your risk of developing breast cancer). You can take the survey here: https://www.surveymonkey.com/r/BCNARecon. The survey should take about 15-20 minutes. Your survey answers will be kept confidential. Only de-identified findings will be reported. We may include comments you make in a report, however, we will not identify you by name. If you have any questions, comments or concerns about this survey, please contact the BCNA Policy Team on policy@bcna.org.au. Thank you in advance for your help. Warm regards, BCNA's Policy TeamRegional and Rural Information forums - We want your feedback!
The below post was recently added to the private group Living in Regional, Rural and Remote areas . If you are not a member of this group and live rural, regional or remote, please consider joining. (Refer to the Monash Modified Model (MMM) that classifies locations according to geographical remoteness via the link https://www.health.gov.au/resources/publications/modified-monash-model-fact-sheet Hi Members, BCNA will be delivering information forums to regional, rural and remote communities, more details on the locations and dates will be shared soon. Traditionally these have been delivered as full day events from 9.30-3.00. We acknowledge the current cost of living crisis, work and personal commitments might make it challenging for people to attend a whole day event. So we are hoping to get a better understanding on preferred timings from our members. If you could please take the time to complete this short survey to help with the planning of the upcoming forums. https://forms.office.com/Pages/ResponsePage.aspx?id=dgJVk0E5rkyacWRewHkFZW92LAal_5RAn6S9wZSqa_hURU9VU1NLNjlTWTlORFJMTTNHTlVFQlE5Qi4uHave your say on the Online Network
Later this year, we need to move the Online Network to a new platform as part of a wider project to improve our online resources. To help us make the best decisions around functionality, processes, look and feel, and more, we invite you to complete a short, anonymous survey. All questions are optional and you can use any device: Online Network user survey. The survey closes at the end of Monday 27 May. Next month we will let you know the results of the survey and give you information about the change. If you have any questions please contact the Project Manager Tamsin Stanford tstanford@bcna.org.auOnline Network Survey - Results
Thank you for taking part in our digital research As some of you may know, we need to move the Online Network to a new platform, as part of a wider project to improve our online resources. We ran a survey and conducted interviews with members of the network to gather information such as: What works well and what needs to be improved What features and functions are most important. Thank you to everyone who was able to take part and provide feedback on their experiences with the current platform. Your feedback is helping us make decisions around features and functionality (Survey results attached). The project team is busy working with our technical partners. This is always a lengthy process, so you won’t see any changes for a couple of months. However, the project team will very soon start communicating with our network before the upcoming changes. If you have any questions or future feedback, please let us know via this post or through our Helpline team.Friday Update - 11th November 2022
Friday update 11th November 2022 Hello members, October was full of activity and events for Breast Cancer Awareness Month. Thankyou to everyone who hosted an event or got involved in any way to raise awareness. I will do a bit of a re-cap on the theme ‘Understanding My Care’ that BCNA highlighted throughout the month. Thunder and rain echoes through my home town today, so while it is warming up it doesn’t quite feel like we are heading into summer soon! Enjoy the update. Community highlights October Online Network activity In October the Online Network had 16,652 visits to the community; 116 new discussions and 597 new comments Popular forum discussions Members new and old may have missed some of the forum discussions that have been most active in September: 1. Creative Corner! 2. Lumpectomy done - margins question 3. Radiation started 4 of 25 4. Integrated doctor/oncologist in Victoria 5. DCIS Posts by ‘Category’ Name’- October 2022 Community News Understanding my care During October, Breast Cancer Network Australia (BCNA) promoted awareness of optimal breast cancer care through a campaign called Understanding My Care. Please take a moment to complete our survey about the campaign. It should only take about 5 minutes. Your opinion is important to us and helps us keep improving how we communicate important messages about breast cancer. Survey link: https://www.surveymonkey.com/r/7C5K6CC You can also check out the posts that I shared on this topic during the month of October: My Care - Understanding Best Timeframes for Treatment My Care - Understanding Supportive Care My Care - Understanding Multidisciplinary Care My Care - Understanding Informed Financial Consent My Care - Understanding Access to Clinical Trials BCNA News 13 Oct 2022 – Making metastatic breast cancer count Breast Cancer Network Australia (BCNA) announced that there are over 10,000 people living with metastatic breast cancer in Australia. This figure is only an estimate because Australia’s cancer registries are currently only mandated to report the number of people diagnosed with cancer (incidence) and how many people die from cancer (mortality). This means we currently don’t count people who are living with metastatic breast cancer. Read the full news item HERE and Download issues paper: Making metastatic breast cancer count BCNA News 1 Nov 2022 – Medicare rebate for breast MRI The eligibility for a subsidised MRI for people who don’t have symptoms but have a high risk of developing breast cancer has expanded. This eligibility has changed from under 50 to under 60 years, meaning more people could now be eligible. Your GP will determine if you are at high risk and meet the Medicare criteria for an MRI. We are aware not everyone qualifies for this subsidy, and that’s why BCNA continues to advocate for greater access to subsided treatment and care. If breast cancer is found early, there are more treatment options and a better chance for survival. BCNA encourages you to talk to your GP about your breast cancer risk. For more information and to check your eligibility visit: https://bit.ly/MedicareMRI BCNA visits Rockhampton! BCNA hosted an Information Forum in Rockhampton for people living with breast cancer and their supporters. The Information Forum covered a range of topics including the latest in breast cancer treatment, managing your emotional wellbeing after a breast cancer diagnosis, and how you can live well during treatment and beyond. You can read more about the local Rockhampton community groups and the speak biographies HERE The Beacon – December (Preview) The December edition of The Beacon is currently in-progress; I have the inside word on several topic/stories that will be included: * Ask the expert: Genetics and the link to breast cancer Expert: Associate Professor Yoland Antill, Medical Oncologist and Cancer Genetics Specialist. This story covers how your family members might know they are at risk, what genes are associated with breast cancer, how to get a genetic test including the cost, what it involves, and what a positive result means. * Transitioning back into work after breast cancer treatment Expert: Jo Lewis, Occupational Therapist working as a Clinical Program Consultant with CancerAid and Associate Lecturer at the University of Sydney. This story explores the advice from Jo about how you can take charge of returning to work, including talking about your experience, planning your return, how your employer can help you and what to do if you return to work and you don’t cope. * Planning for the future: Advance care planning Expert: Sonia Fulton, Deputy Chief Medical Officer at the Peter MacCallum Cancer Centre. Sonia is a firm advocate for everyone preparing an advance care plan so they maintain control over the medical treatment they receive if they lose capacity. She says, ‘Having an advance care plan means that even if you’re very unwell and can't verbalise your wishes, you will still be heard,’ Sonia says. ‘It's not like a will, which is a plan for what happens after you die. An advanced care plan is about what happens to you while you are still alive. It ensures doctors can make treatment decisions in line with your preferences.’ *Breast cancer inspired me to make changes to my lifestyle Member: Kath was diagnosed with locally advanced triple negative breast cancer in 2019 after feeling a lump in the shower. She often used alcohol to cope with life’s challenges, however realised that healing was more important after her diagnosis. She remained alcohol free and made changes to other lifestyle choices she had control over, including her exercise, diet and stress levels. She says that by taking control, she’s living a life aligned with her purpose and values. *Being a breast care nurse in a regional Australia Donna Wellington – Breast Care Nurse. Based in Rockhampton Central Queensland, Donna is the only full-time breast care nurse employed by Central Queensland Hospital and Health Service, which covers an area of 114,000 square kilometres, including Longreach, a 10-hour drive west. The story explores some of the key roles of her job and also the key benefits of breast care nurses Webcasts/Podcasts Food and Movement When Living with Metastatic Breast Cancer - Wednesday 23 November 7:00 – 8:30pm AEDT In a recent Issues Paper, Making Metastatic Breast Cancer Count, BCNA used modelling to estimate that there are currently over 10,000 Australians living with metastatic breast cancer. Although those who are diagnosed with metastatic breast cancer don’t require a specific diet, a healthy, nutritionally balanced diet and regular exercise can help maintain a sense of physical and mental wellbeing and can improve your quality of life. Register now via the following link: https://bcna.live/foodmovementwebcast Did you miss ‘Men and Breast Cancer – Treatment, Managing Side Effects and Finding Support’? In 2022, it is predicted that 212 men will be diagnosed with breast cancer. This diagnosis can be particularly confronting for men and may bring many different challenges, including difficulty finding tailored information, feelings of isolation and being unsure who you can speak to. It is important for you to know there is a range of support available to you. You can watch the recorded session via the YouTube LINK The session explored hormone-blocking treatments for breast cancer and how to manage side effects, provide information about lymphoedema and the treatment and care available and learn about what resources and support are available to you. Survey If you have time, please visit the recent discussion created by our Policy & Advocacy Project Manager (Siobhan) Participate in a research survey to assess the quality of Online Network . BCNA is committed to making improvements to the online network on a regular basis and values user input. Take care and if you have feedback or any concerns while online, please contact one of the moderators - @Jenny_BCNA @Carissa_BCNA @Pat_BCNA @Mez_BCNA If you need to speak with someone regarding your concern, please call 1800 500 258 alternatively, you can email contact@bcna.org.au Take care, The mod team – Mez, Carissa, Jenny, & Pat “Gratitude is a quality similar to electricity: it must be produced and discharged and used up in order to exist at all.” – William FaulknerFertility and breast cancer survey
We’d like to invite young women living outside metropolitan areas to participate in an online survey. The survey will help us learn more about the information young women with breast cancer are getting – or not getting – about their fertility options. The results of this survey will help BCNA develop new fertility resources. The criteria for completing the survey are: · Diagnosed in last five years · Diagnosed with early breast cancer (NOT DCIS, LCIS or metastatic breast cancer) · Currently 45 years or under · Living in a non-metro area All survey results will be anonymous. BCNA will not know whether or not you have completed the survey. The choice to participate or not won’t change your relationship with BCNA. Some anonymous quotes from survey responses may be used by BCNA in resources and publications. The survey will take approximately 15 minutes to complete. We appreciate your time in answering these questions. Link to complete the survey: https://www.surveymonkey.com/r/BCNAfertilitysurvey. If you would like to share your fertility experience and don’t meet the criteria for this survey, please email policy@bcna.org.au. The survey will close on Monday 9 July at 5.00 pm (AEST)
Victoria is doing an Inquiry into women & pain - feel free to participate!
If you live in Victoria you may like to take part in this survey if you have/do experience pain of any sort - whether from your BC or anything else. .... The survey is open until 31st July 2024 ... The government wants to know what your experiences are with pain and accessing care for your pain condition. Understanding your experiences and concerns will help to inform the Inquiry into Women’s Pain and make recommendations to improve care that meets the needs of Victorian girls and women over 12 years of age. We want to hear about: the experiences of Victorian girls and women with pain. This includes all pain and is not limited to pelvic pain. the experiences Victorian girls and women have in accessing Victorian health services to manage their pain, including strengths, challenges, and opportunities for improvement. the experience of healthcare workers who work with women and girls with pain. You can fill out the survey on this page. The survey will close at 5:00pm, Wednesday 31 July 2024. If you would like to write a longer contribution to the Inquiry into Women’s Pain, please see the submissions page: Inquiry into Women's Pain submissions (health.vic.gov.au) For more information about the program of work the Department of Health is leading to change the way women's health issues are treated, please see: Women's Health and Wellbeing Program To do the actual survey - click on this link below: https://engage.vic.gov.au/project/inquiry-into-womens-pain-survey/participate
Introduction - Erana from BCNA
Hi everyone! My name is Erana, and I am the Consumer Engagement Coordinator at BCNA. I work with our wonderful Consumer Representatives and oversee our Review and Survey Group. In the coming months, you may notice a few posts from me highlighting external research and survey opportunities that you can participate in. These opportunities have been thoroughly reviewed and approved by BCNA to ensure it is of high quality, relevant to our Policy & Advocacy Strategy, organisational priorities and will lead to tangible benefits for those affected by breast cancer. While we typically share them through our Review and Survey Group communications, we thought it would be beneficial to also share them here for those who aren’t currently part of the Review and Survey Group. If you'd like to join the group, feel free to sign up here Review and Survey Group. If you have any questions, please don’t hesitate to send through a comment or message and we'll do our best to respond as quickly as possible. Thanks, Erana :)BCNA Member Survey
We are excited to be launching a national member survey for people impacted by breast cancer to better understand how you use BCNA’s services and resources. We have designed this survey in partnership with researchers from the University of Sydney and representatives from our membership groups including from our rural and regional, metastatic, LGBTIQ+ reference groups and SATT program graduates. So many things have changed since we last conducted a national survey in 2017 that informed the State of the Nation report. This survey will guide our priorities and work to ensure that we keep delivering the highest quality information and support to our members. Healthcare has also changed a lot over the last five years, especially since COVID-19. We are launching a separate survey for health professionals who deliver breast cancer care so that we can improve our engagement across the sector. Link: https://redcap.sydney.edu.au/surveys/?s=LHJDPKM8TJ3RRXLD
