2. People still need support long-term following their diagnosis. Nearly one-third of people reported that they still need support more than three years after their most recent diagnosis, highlighting BCNA’s role in helping people to live well with and beyond breast cancer. Similar to BCNA’s 2017 survey results, the most common topics that people reported were most important related to managing physical side effects and emotional support, including fear of recurrence or progression. We also heard that many people need more help communicating with healthcare professionals, family and friends, and work colleagues as well as managing financial impacts of treatment. People living with metastatic disease told us they are seeking more information about living well, managing pain and fatigue, and accessing new treatments. 3. People need more inclusive and tailored information and support. We heard that people value BCNA resources that are tailored to their individual and/or community needs such as using inclusive language and accessible formats. Examples of groups who are seeking more specific support include younger women (under 40 years), people living with disability such as chronic pain and neurodiversity, and people who self-identify as LGBTIQ+ or First Nations. Members and healthcare professionals both reported that information and support should be available online and in-person or hard copy to suit different communication preferences.
4. Members and healthcare professionals have high trust but low awareness about what BCNA does. Members and healthcare professionals consider BCNA resources to be high quality because they are based on evidence and are reliable. Most healthcare professionals and members believe it is most helpful to engage with BCNA resources at the point of diagnosis, but people also reflected that engaging with BCNA is beneficial across their cancer experience, including before diagnosis (such as for people with genetic risk factors) through to living with metastatic disease. Healthcare professionals play a critical role connecting people with BCNA for the first time, most commonly through a breast care nurse (see Figure 1 on the following page). The resources most used by members and healthcare professionals are My Care Kits, the My Journey App, the BCNA website and fact sheets. However, many were not aware of the full list of resources and services available from BCNA, such as video/online resources, BRECONDA (decision aide for breast reconstruction), and the BCNA Symptom Tracker. There was also low awareness by people living with metastatic disease about the availability of the ‘Hopes and Hurdles’ resources. Many healthcare professionals were not aware of BCNA’s broader role offering education and research opportunities, and only two- thirds were aware of the national Optimal Care Pathway clinical guidelines for breast cancer.
“…whenever you have a concern or need information BCNA always has a resource that you need. It gives you access to a community of others experiencing what you're experiencing; and up to date information on treatments and resources to use to navigate the many decisions you're faced with” (Respondent 112)
“I have found it hard to reach out to support groups. I think having a diversity of voices, case studies…. would be helpful” (Respondent 723)
BCNA’s Experience project | Participant Summary
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