Supporting young adults with cancer

There are around 367,000 new cancer diagnoses in the UK each year and around 10% of these occur in adults aged 25-49. At Shine Cancer Support, the charity that I founded, we provide information, peer support and expert advice to these young adults, many of whom find themselves stuck in a no man’s land between general cancer support for older people, and support aimed at children and teenagers.

In 2013, I was lucky enough to be awarded a Churchill Fellowship to visit organisations across the USA and Canada that were delivering cancer support programmes to young adults. In 2014, we used the information I’d gathered to deliver our first in-person Great Escape programme – a three-and-a-half-day retreat for young adults in Bournemouth. I never imagined that, seven years later, I’d be sitting down at a blank screen trying to figure out how to turn a successful in-person event into an online programme.

At the start of the pandemic, approximately 70% of our community were advised by their medical teams to “shield” – to take extreme care and leave the house only when absolutely necessary. This meant that almost all of the support offered to cancer patients was suddenly unavailable. The toll this was taking was huge: 71% of our community reported feeling more anxious than before the pandemic, while 55% reported feeling extremely emotionally isolated.

Bringing together Shine staff, trustees and community members, we set about planning how we could create an online Escape programme and bring together young adults who would otherwise miss out on the vital support they needed. We quickly realised that the programme would need to take place over a number of weeks rather than days – Zoom fatigue is real.

With the support of the Churchill Fellowship's Covid-19 Action Fund, in November we piloted our first “Shine Circles” programme with 14 young adults with cancer, separated into two groups. One of the groups was made up of young adults living with incurable cancer, the first time we’d run a specific programme for this group.

The groups met weekly over six weeks and covered a range of topics, from living with uncertainty to how to tell their stories. Each session was a mixture of information and time for discussion in smaller groups. Four weeks after the end of the programme, we ran a catch-up session so that group members could see each other again. Some of them have continued their Zoom get-togethers without us.

We ran two further groups in March and April of this year, and plan to run more after the summer. The evaluations for the programmes have demonstrated the value of this work: participants gave the programme an average rating of 4.9 out of 5, but more importantly their sense of connection and support has increased. Prior to the programme 63% of participants reported feeling isolated from others “often”; this reduced to zero after the programme. Similarly, only 8% of participants reported feeling “very connected” to the young adult cancer community before the programme; this increased to 67% afterwards.

Throughout the delivery of the programme, we’ve kept tweaking both the content and our approach. We know now that it’s really important to keep formal content to a minimum and increase time for discussion. We’ve also learned that while you can have really meaningful conversations online, it’s important to have additional support available, which is why we’ve made counsellors available to all of our participants. To mix up the delivery of our content, we use PowerPoint slides as well as videos and audio clips, break-out rooms and interactive whiteboards. Finally, we’ve also experimented with online mindfulness and therapy animals – though we’ve come to the conclusion that therapy animals are best enjoyed in person.

Although many people in the UK are getting back to normal, life for cancer patients is likely to include social distancing for months to come. As such, we’re planning to continue this programme into 2022, though we’re also going to run it for different groups of people such as young parents and partners. At the moment, it’s impossible to say what the future will hold, but we’re hugely grateful to the Churchill Fellowship for helping us to adapt our support to meet the needs of these young adults.