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Creating content that supports women after breast cancer

by , Digital Content Strategist, Breast Cancer Care

Claudia is presenting at agile content conf, 29-30 Jan. in London, where you can learn to find breakthrough content solutions that work for stakeholders, users and you.

If you’re creating content to support your users, you’d like to think that you have a pretty good idea of what will help. You understand your audience, and probably have expertise and research to back up your suggestions.

But sometimes your users can take you by surprise. When creating BECCA, the Breast Cancer Care App for people who have finished active treatment, we soon discovered that above all else, people wanted to hear personal stories. Clinical information was useful, but it was the power of narrative that offered real emotional support.

There’s a mass of support and positivity that can be gained from harnessing narrative. Stories express something different to each individual, allowing you to address a person rather than a crowd. We set out to provide support, and ended up learning a lot more than we anticipated.

The need for support

When someone is diagnosed with breast cancer, they’re put through a gruelling, whirlwind cycle of treatment. Physically, the cancer cells are attacked from every angle, through surgery, chemotherapy and radiotherapy, and in doing so the healthy body surrounding it is damaged.

This side of treatment is what people tend to associate with breast cancer – the physical, somatic side. Once active treatment ends, surely that’s cause for celebration? In fact, it’s at this point that many struggle emotionally.

Misconceptions of illness

We tend to think of illness as physical. If you break your arm, the doctor puts it in a cast. It’s bodily and located, somatic, and treatment aims to heal the physical impairment. What is far less considered is the impact illness has on the lived body and human experience.

According to research by Breast Cancer Care, a third of women struggle with depression following treatment, and many experience anxiety. Throughout treatment they’re supported by a team of doctors and nurses, family and friends, but afterwards are often expected to ‘ping back to normal’, as one woman said to me.

Normality itself takes on a whole new meaning. Faced with their own mortality people worry about recurrence, they may look and feel different, struggle with a loss of identity, and experience side effects like fatigue and hot flushes from hormone treatment. They cannot live life as they did before. They need to find a new ‘normal’.

To help at this point we must focus on the person, on their lived life, not solely on the body.

How can content offer support?

This year Breast Cancer Care launched a free app, BECCA, with content that helps women adapt to life after treatment. BECCA has tips in the style of flashcards, each leading to an external page with more information. Topics cover a broad range such as managing side effects, getting active, cooking healthy meals, as well as blogs written by women who have also had breast cancer.

But how could we determine what content would actually help? Each card is reviewed by a team of clinical professionals and breast care nurses from the charity, but how could we know if we were supporting the individual’s needs? To find out, we turned to the user.

1. Let the user lead

From its nascent days the app was built on feedback from the women it aimed to support. Kristina, Digital Innovation Manager and the brain behind BECCA, used workshops, feedback sessions and information from other services in the charity to pinpoint the initial needs we wanted to meet.

2. Test and analyse

Once we had a base to work from, and a beta web-app with more than 1,000 users gathered from organic social posts, we started to refine the content. This is something we continue to do, and working iteratively allows us to constantly improve the content.

An example of the BECCA flash cards

We use Mixpanel to evaluate what flashcards have been engaged with most and least. Initially, this was invaluable in testing different tones, and discovering the ‘voice’ of BECCA. If we wanted to focus on the user as a person, the app also had to treat them as a person.

This can be particularly hard when you’re writing for a large audience with varying personalities and preferences, so using data from that audience to determine decisions is a great guide.

3. Bring back the user

Empathy lies at the heart of what we do. But you also have to acknowledge the limits of your understanding if you haven’t experienced something yourself. I haven’t had a breast cancer diagnosis, but our 5,000+ users have.

So we turned to our users to create their own cards, asking them to submit ideas through Typeform. We also took to social media, where many of our users have organically come from, encouraging conversation and engagement each week with a #WellnessWednesday post. The posts are based on the most popular cards in the app, and spark a stream of comments and support that we can then draw back into BECCA.

The power of narrative

What we didn’t anticipate was how much value users would gain from the blog category in BECCA.

The most popular cards link to personal stories on Breast Cancer Care’s site and other breast cancer bloggers. When speaking to our users, women explain how reading others’ stories has helped them to realise that they’re not alone and to make sense of the turmoil and confusion that can arise after treatment.

Previously inexplicable emotions can be put into context, guided by the vocabulary of someone else’s story. We then work on blogs with our users to put into the app, bringing the process full-circle.

I read blogs on BECCA, the website and feeds on the Forum, and found things that resonated. I read these to my husband, and they helped us both realise that I wasn’t the only one feeling this way.
‘It made me want to share my story too, in the hope that it might help someone else and their family make sense of life after breast cancer.

– Sue, BECCA user

Bringing storytelling to the fore

There’s currently a lot of research around the power of narrative, and how it can be brought into healthcare. Philosopher Havi Carel advocates the importance of using a phenomenological approach, looking at the patient’s subjective experience, in order to assess someone’s illness, and therefore their care or recovery path. A vital method of achieving this is listening to the patient’s story.

Columbia university in the US has spearheaded a programme in narrative medicine. This new practice draws patients and healthcare professionals together to understand the needs of both the patients and caregivers from each perspective. It uses narrative to guide how care is both given and received.

Share your users’ experiences

We all know that sharing experiences is an amazing way to connect and feel supported, in any circumstance. But it can often be hard to reflect this through digital content.

Breast Cancer Care already runs face-to-face courses, called Moving Forward, that provide support after treatment. Feedback has shown that one of the most valuable aspects of the course is that people can hear and relate to the experiences of others, and share their own stories.

By bringing users and their stories to the centre of the app, BECCA can also offer this support.

Claudia is presenting at agile content conf, 29-30 Jan. in London, where you can learn to find breakthrough content solutions that work for stakeholders, users and you.

About the Author

Digital Content Strategist, Breast Cancer Care

Claudia is Digital Content Strategist at Breast Cancer Care. She curates the content for BECCA, their free app that helps women move forward after breast cancer treatment.

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