Teen cancer: a problem shared

Peer support is an important factor in helping teenagers and young adults cope with cancer. Friendships can often suffer due to periods of hospitalisation and feeling unwell which prevent the young person from attending school, work and social activities.

Online communities can aid peer interaction while overcoming the physical limitations that adverse effects of treatment can impose. Removing the physical distance that prevents access to face-to-face communication is an important factor in supporting young people.

‘Young people showed a need to interact with other users with similar experiences’

Online facilitators can encourage peer interaction, instigate conversation and keep discussions on track in online communities. In collaboration with a group of young people with cancer, aged 16-30, an online community called realshare was created to serve the young people with cancer in the South West.

Need to share

A pilot study funded by the Teenage Cancer Trust on the use of the online platform realshare was designed to form an online community specifically for teenagers and young adults with cancer in the South West. It builds on a preliminary study on the development of an online platform for teenagers and youg adults, led by the teenager and young adult team at University Hospitals Bristol Foundation Trust and lead nurse Deirdre Brunton.

For a five months, a group of young people with cancer posted messages in the realshare forum. Intervention focus groups were conducted before and after and responses were studied using thematic analysis. It made the following findings:

• Young people showed a need to interact with other users with similar experiences. They initially used the forum to discuss outside events, ways to improve realshare and clinical information. As their awareness of others increased they started to share personal stories and feelings by discussing the emotional impact of cancer. Users also 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 need for realshare and distinguished it from other online communities.

Findings have informed the use of future online interventions and support delivered by health professionals working with teenagers and young adults with cancer.

Unique environment

The findings from this study suggest that realshare can provide this group with a unique environment where they can interact with other young people with cancer, express the emotional impact of cancer, request and offer information and social support and openly express their patient voices.

This research has provided a valuable first hand insight into designing, operating and researching social networks for user-centric communities. It has successfully highlighted a number of important issues that should be considered by both practitioners and academics that address this area in the future.

Two crucial concerns will now be discussed. First, the difficulty of launching a new social network site into a domain where it would have to compete for users’ time with sites such as Facebook.

Of course user-centric sites such as realshare are not in direct competition with the likes of Facebook given their niche user base and specific site objectives, but the standards set by these well-established sites are highly salient and ingrained within the expectations of users. Subsequently designers for future support-centric sites are challenged with creating user interfaces that will be benchmarked against existing sites, while still maintaining individuality.

Early boost

Second, the study has highlighted the need to foster interactions among users of sites within their infant stages. Hence without peer-to-peer interaction little support would not be offered would be offered and the site would be unsuccessful. It is difficult to naturally create adequate levels of flowing interactions among a small cohort of users in a newly developed site. Consequently, this research proposes the need for facilitation at an early stage and to instigate and maintain peer interaction.

In addition, future online interventions might want to consider the inclusion of a forum facilitator for providing social support and online support groups should include activities outside of the forum to allow young people to meet other members face to face.

Finally, it is vital for health professionals who work with teenagers and young people with cancer to be aware of the needs of these young people who appear to express a need to discuss the emotional impact of cancer and to receive more information and emotional support in addition to the support that they are currently receiving.

Deirdre Brunton is the teenagers and young adults lead nurse at University Hospitals Bristol Foundation Trust