The Youth Cancer Trust has been working on the Realshare project since 2012 in partnership with the NHS in the South West initially as a pilot. It has been running as a pilot in the South West region.
Realshare is being re-launched in 2020 having been re-developed in light of research undertaken with young cancer patients.
If you would like to speak to someone about joining the project or if you are interested in sponsoring Realshare, please email Georgina or telephone 01202 763591.
Please help us support this project by donating now!
Designing and evaluating the acceptability of Realshare – read the research article
Press Release – Launch September 2012
Launch of New Social Network for Teenagers and Young People with Cancer in the South West
University Hospitals Bristol NHS Foundation Trust, in partnership with the Youth Cancer Trust with support from the University of Bath has launched a new social network for young people with cancer, aged 16-25 who live in the South West.
Realshare is the first NHS independently run and monitored professional social network for young cancer patients in the UK. It has been created by professionals who work with young people with cancer in partnership with some of those young people themselves. The site includes: a social zone including status updates and forums, useful links, and a game zone for light relief.
Dr Adam Dangoor, consultant medical oncologist at the Bristol Haematology and Oncology Centre, said:
“The South West is a geographically large area and young people with cancer may receive treatment or live a long way from others in a similar situation. We hope that realshare will allow members to chat with others in an informal and safe environment to provide support to them during what might well be a difficult time.
“Members may be at different points in their treatment journey and have different diagnoses, but they are likely to have insights and ideas that can help each other. The site already has 61 members.”
Emily Thompson, 25, from Bristol, who was diagnosed with breast cancer in 2011, says:
“It’s a small community which means you are not inundated by lots of people’s views. You recognise the same names and it helps you feel more confident about contributing.
‘You can talk to people online and know that they are local to the South West. If I share some tips, like about using false eye lashes when you lose all your hair, I know that at some stage I could meet that person face to face which makes it easier to make that initial connection.”
In 2010, a research project was funded at the University of Bath – School of Management in collaboration with Deidre Brunton Teenage Cancer Trust funded TYA Lead Nurse UH Bristol to establish the social network in partnership with 15 young people with cancer. The project ended in June 2011 and identified that the design and development of the site was what the young people wanted and that there was a real need for an online social network specific to young people with cancer, facilitated and moderated by key staff involved in the care of young people with cancer.
Dr Niki Panteli, a Reader in information systems from the University of Bath who managed the project and evaluated the development of realshare, said:
“This is a unique site for young people with cancer in the South West because it’s been designed with their input. We know from our evaluation that they like it and it’s something they need. It’s different to other social networking sites because people know that other realshare users understand what they are going through and they feel they can be more open about their feelings and fears.”
The Youth Cancer Trust has been involved with realshare by providing the sponsorship of the branding, design and development since its origination.
Brenda Clark, Founder of the Youth Cancer Trust, says:
“The Youth Cancer Trust is excited to work on a project of this nature. People, especially young people, communicate more and more these days with one another online. Digital communication and social networking is something the Trust feels is critical to help reduce the sense of isolation often felt with a cancer diagnosis. YCT currently provides a physical space for young cancer patients to be with one another for peer support in Bournemouth so realshare supports this in an online sense.”
The launch of the site has been made possible thanks to funding from the University of Bath’s EPSRC (Engineering & Physical Sciences Research Council) Knowledge Transfer Account and sponsorship from the Youth Cancer Trust.
About UH Bristol
University Hospitals Bristol NHS Foundation Trust is a leading research centre, the region’s largest provider of medical and dental teaching and is one of the largest acute NHS Trusts in the country. It employs over 7,900 people, delivering over 100 different clinical services from a group of nine hospitals in the heart of the city.
About the University of Bath
The University of Bath is The Sunday Times ‘University of the Year’ 2011/2012. We are one of the UK’s leading universities, with an international reputation for quality research and teaching.
Our Mission is to deliver world class research and teaching, educating our graduates to become future leaders and innovators, and benefiting the wider population through our research, enterprise and influence. Our courses are innovative and interdisciplinary and we have an outstanding record of graduate employment.
We are a member of The 1994 Group representing 15 of the UK’s leading student-focused research-intensive universities. Established in 1994, the group promotes excellence in university research and teaching.
A research project, was undertaken with University Hospital Bristol and Bath University, with the voluntary help of a focus group of young people on the use of the online platform, realshare, a platform that was designed to form an online community specifically for teenagers and young adults with cancer in the South West region in England. It builds upon a preliminary study on the development of an online TYA multi professional virtual platform led by Deirdre Brunton and her team in 2009 and project published Daniels (2011).
The study was driven by an understanding that teenagers and young adults (TYA) with cancer often fall between paediatric and adult cancer care, but neither can fully address the needs of the TYA patient. Based on this, the study aimed to evaluate the use of realshare for TYA with cancer.
For a period of five months, a group of TYA with cancer posted messages in the realshare forum. Pre and post intervention focus groups were conducted. Responses were analysed using thematic analysis. The key findings are:
- Young people showed a need to interact with other users with similar experiences. They used the forum initially to discuss outside events, ways to improve realshare and clinical information, and then as their awareness of others increased they started to share personal stories and feelings by discussing the emotional impact of cancer and users provided and received emotional support from others.
- Their level of interaction increased with the intervention of a facilitator who provided encouragement for the use of the site. In particular, having a facilitator was found to be vital for the ongoing functioning of the community.
- Users expressed a real need for realshare and distinguished it to other online communities.
- Findings inform the use of future online interventions and support delivered by Health Professionals working with TYA’s with cancer.
In sum, the findings from this study suggest that realshare can provide TYA with cancer a unique environment where they can interact with other young people with cancer, express the emotional impact of cancer, request and offer informational and social support and openly express their patient voices. These indicate that there is a need for an online support group that is specific to TYA with cancer. The report provides recommendations on how to enhance the use of realshare and ensure its sustainability.
You can download the full report here.
Fundraising for the realshare project
Youth Cancer Trust is the sponsor of the realshare project and works in partnership with the NHS in the South West. YCT therefore needs to raise money to fund further development and maintenance of the social networking site so have placed a fundraising manager in the South West who will be working to sustain this invaluable digital project.
Realshare Fundraising Manager – Cathy Searl
If you would like to donate to this project or if you are able to help Cathy fundraise in your company or organisation then please get in touch…
Cathy Searl – Community Fundraising Manager
Tel 01844 353481
Mob 07866 773747