The Here & Now patient and carer survey revealed that 45% of women with ABC feel that information is hard to find and over half agree that the available materials do not meet their needs. The Here & Now campaign has therefore developed a number of resources to support ABC patients – details of which can be found below.
The Here & Now campaign’s research to date has exposed that patients with ABC often feel isolated from society1, highlighting a unique set of challenges these patients face.
Further to these findings the Here & Now campaign distributed and collected results from an online multiple choice surveys conducted in x3 European countries: Cyprus, Poland and Greece. Respondents had no experience of talking to women with breast cancer and answered questions based on one of two profiles: a woman with early breast cancer and a woman with advanced breast cancer (ABC). The questions covered both initial conversations regarding diagnosis and ongoing discussions throughout the women’s breast cancer journey and looked at a number of topics including: reactions to diagnosis, offering supporting, and topics of conversation and potential phrases people may use.
The findings from the research conducted were revealed at the meeting, and identified that people often do not know what to say to patients with ABC. Currently, for fear of saying ‘the wrong thing’2, many people withdraw from relationships with ABC patients and leave them feeling more isolated and unsupported.
Click here to access the results from the New Language of ABC survey.
As a result, the ‘New language of ABC’ meeting was designed to provide an opportunity to identify where communication with loved ones can break down and, importantly, how we can address and better support these communication needs or gaps. The meeting focused on developing a set of recommendations to inform the development of communications guidance tool for people impacted by ABC to support dialogue between all those connected to these women.
At the meeting, two workshop sessions were held, to identify the key scenarios in an ABC patient’s journey where communications can lapse and to identify suitable communication styles in order to confirm which styles may resonate well with ABC patients and those that may be less effective. The feedback from the workshop was incorporated in the development of the communications tool, which attendees also had the opportunity to feed into.
Click here to access the New Language of ABC communications guidance tool.
1 Here & Now Report. Available at: http://wearehereandnow.com/files/here-and-now-report.pdf [Last accessed September 2017] .
Cancer Council website. Available at: http://www.cancercouncil.com.au/96305/cancer-information/general-information-cancerinformation/advanced-cancer-general-information-cancer-information/end-of-life-advanced-cancer-general-information-cancerinformation/providing-emotional-support-for-someone-dying-with-cancer/ [Last accessed September 2017]
Previous research has found that around 40% of ABC patients suffer depression and emotional stress. Here & Now therefore developed a mindfulness resource to support women living with ABC both emotionally and psychologically. Specialists in Neuroscience have discovered that mindfulness trains the prefrontal lobe area of your brain, as well as enhancing other areas associated with learning, memory, intuition and self-insight. Conversely, mindfulness has been shown to lower brain activity linked to stress and anxiety.1
We enlisted the help of Greg Burdulis, a mindfulness coach who spent seven years practicing mindfulness intensively in Burma and who has been teaching mindfulness internationally since 2008.
The mindfulness resource consists of five modules that use mindfulness to develop the following skills: calm, self-compassion, gratitude, pain management and active imagination.
Each exercise along with its introduction lasts 15 to 20 minutes and can be downloaded onto a phone or tablet.
Music was developed and produced by Gabe Burdulis.
1 Davis and Hayes. What are the benefits of Mindfulness? American Psychological Association.
Available at: http://www.apa.org/monitor/2012/07-08/ce-corner.aspx Last accessed December 2016
Research by the Here & Now campaign revealed that there is a disconnect between patients and HCPs when discussing ABC. The Train the Trainer communications resource addresses this communication gap, enhancing patient understanding of ABC and available treatments. Train the Trainer has been developed in conjunction with a range of medical experts to ensure relevance and credibility.
The documents below provide a guide to prompt productive conversations between HCPs and women with ABC, information on clinical trials for patients, and a leaflet for HCPs on managing their emotions in professional life and other resources.
There are several types of breast cancer which can be defined based on the receptors present in the breast cancer tumour. It is important for women with breast cancer to know which type of breast cancer they have as this will influence their treatment pathway. The document below gives further detail on the four most common types of breast cancer so patients may feel better informed and able to discuss treatment options with their clinician.
Click here to access the Know Your Type patient resource
Previous global research revealed that women with ABC want more information and support. More than half of the women surveyed felt that the available information did not meet their needs and 45% said it was hard to find. The Here & Now campaign has therefore developed a number of tools, ranging from factsheets about ABC to guidance on coping emotionally with an ABC diagnosis. All the documents below are designed to help patient organisations to better support individuals with ABC.