Building a Nationwide Support Group to Fight Breast Cancer
According to the International Agency for Research on Cancer, breast cancer, specifically, is the most commonly diagnosed cancer in women, with one in four new cancer cases diagnosed in women worldwide.
In the spirit of the month of breast cancer awareness, I’d like to talk about the important mission of the Breast Cancer Network Australia.
The Breast Cancer Network Australia (BCNA) is an organization that provides support, information and treatment to Australians affected by breast cancer with the aim of ensuring that their voices are heard. The BCNA was founded in 1998 by Lyn Swinburne, a breast cancer survivor who was diagnosed in 1993 and underwent surgery, radiotherapy, chemotherapy and hormone therapy. Lyn created the BCNA with the broad goal of making the breast cancer journey better for everyone diagnosed in Australia.
Before we talk about the BCNA’s online community, let’s take a closer look at the organization as a whole and all of the great work that they do.
BCNA’s Mission, Vision and Values
The BCNA’s mission is to ensure that, “Australians affected by breast cancer receive the very best support, information, treatment and care appropriate to their individual needs. We support, inform, represent and connect Australians affected by breast cancer.” The mission supports the BCNA’s vision of a better journey for all Australians affected by breast cancer; they not only provide support to those diagnosed, but also to the family and friends of those who have breast cancer.
Members of the BCNA share five core values that express what the organization stands for and how they operate. These core values are:
Energy: BCNA’s board, staff and volunteers are united by a passion to advocate for and empower Australians affected by breast cancer. We approach challenges with determination and resourcefulness by harnessing the collective power of our organisation, our members, our supporters and the wider Australian community.
Openness: BCNA respects and responds to the diverse journeys and perspectives of all our members, staff, partners and stakeholders. As a result, we are dedicated to being a transparent and accountable organisation, demonstrating integrity in all our dealings. We are committed to being open to change and innovation as we seek to best serve our members.
Caring: BCNA is respectful and responsive to individual differences and the needs and concerns of our members, staff, volunteers and partners. Caring, trusting relationships are fundamental to how we work.
Connection: BCNA was established by our founder Lyn Swinburne to ensure that no Australian has to face a breast cancer diagnosis alone. We recognise the importance of connecting people and organisations and encouraging collaborative relationships to deliver powerful outcomes for individuals and communities.
Resilience: BCNA is committed to empowering Australians affected by breast cancer to respond with resilience to a diagnosis of breast cancer. We are also committed to promoting the resilience of our organisation and of our board, staff, volunteers and partners.
The BCNA Online Network
Launched in 2010, BCNA’s online network is an active community that provides 24/7 support to those affected by breast cancer in Australia, including peer-to peer support and information regarding the illness. The BCNA 2017 Annual Review (the most recent annual review available on their website) provides a description of the purpose of the community as follows:
When you’re facing breast cancer, talking to someone who’s been there can really help. Available 24 hours a day, seven days a week, BCNA’s online network provides a safe and inclusive space for all Australians affected by breast cancer to find information and support and share their stories and experiences.
Moderated by BCNA’s Helpline team, the online network is a rich and diverse community that includes private groups for young women and people living with metastatic breast cancer, as well as groups that discuss breast reconstruction and sexual wellbeing.
The BCNA Online Network is quite extensive and includes every category imaginable — indeed, the community features nearly 9,000 categories. To give you an idea of how extensive and specific these categories are, some of the more popular ones include:
Now what? The highs and lows of survivorship
Online Community Info
Metastatic breast cancer
Health and wellbeing
Day to day
Supporting someone with breast cancer
Community news and events
The BCNA online network doesn’t need to incorporate gamification elements to keep their community engaged; the nature of their community is fuel enough to keep people connected. Nevertheless, gamification is still used in the community, and used in one of the best ways that I’ve ever seen.
While the community has the classic features, such as badges being awarded for likes and comments, the community also uses gamification as a way to celebrate life achievements. For example, the community awards a “First Anniversary Birthday Cake” badge as a way to celebrate the one year anniversary of a clean bill of health. It’s a token meant to commemorate all that has happened to that member in one year and everything they have endured. To the members of the community who have been through so much, It’s so much more than just a badge. One member in particular noted:
I must admit, [when I went through my first anniversary mammo/surgery] it brought back all sorts of feelings BUT it did make me proud when I saw that “First Anniversary birthday cake” on my badges page! Made me realise what I had gone through in the past year and it did bring a tear to my eye! May we all get many more “Anniversary Cakes” on out badges page!!
To me, gamification has never been more powerful than this.
In addition to using gamification in a way that supports the BCNA’s core values, the community also makes use of the “groups” feature. As we know, all types of people are vulnerable to being diagnosed with breast cancer, and sometimes the best way to get peer-to-peer support is through a group of people who want to discuss a similar topic. For example, the BCNA provides specific groups for Aboriginal and Torres Strait Islander Peoples, Christians, and Men living with breast cancer. These groups within the broader BCNA online network provide a space for more marginalized members to have a safe space to discuss these issues. Members have to request access to groups and must be approved to join.
BCNA Community Impacts
The impact that the online community has had on helping the BCNA achieve its mission, vision and values cannot be understated. One member sums it up perfectly as: This online sisterhood is magnificent. What a kind, caring community. Thank you everyone!
One of the best parts about the community is that it is available 24/7 to anyone who is looking for support. As one member puts it:
The 24/7 support of the people [in this community] has been a great help once I found the courage to participate. The acceptance, understanding and sharing from many have gotten me through some darker moments. [Not even close family or friends] gets it better than someone whose is/ has been there. [Family and friends] may think you will just resume your life as before but don’t realise that the experience changed you — the people on here do.
Here, the impacts of the community are seen on a daily basis. Every post in the community is something personal and emotional for the member, and it provides them with a safe space and an understanding group of people to share their stories, thoughts, successes and fears with.