Exploring Visitors Experiences of Online Cancer Communities

Abstract

Background
There will be approximately four million people living with cancer in the United Kingdom (UK) by 2030. The National Health Service faces a major challenge meeting the support needs of this growing population, who commonly report feeling isolated and lacking social support. Approximately 45 million adults in the UK use the internet, and online communities might be a culturally relevant way to connect people affected by cancer, allowing them to support one another. However, internet communication is fraught with challenges such as misleading or untrustworthy information. We have a limited understanding of how people experience these communities and whether they can provide meaningful support for people affected by cancer.
Aims
To explore and understand the experiences and interactions of people affected by cancer who visit online cancer communities.
Methods
This was a qualitative study involving 23 people who had visited online cancer communities. Participants were affected by a range of cancers and were a combination of cancer survivors and families members. Semi-structured interviews elicited participants’ experiences, preferences and perceived consequences of using online communities. Data analysis was guided by principles of Constructivist Grounded Theory.
Findings
Participants used communities to ‘navigate’ the challenges they faced with cancer. This navigation produced three categories of experience in online communities. Firstly, advice from fellow community members set participants on a ‘journey to become informed’. Secondly, participants were cast into a ‘journey to recreate identity’ as they connected and formed friendships online. Thirdly, participants discovered a ‘journey through different online worlds’ to the most relevant and often hidden social communities.
Conclusions
This was the first qualitative in-depth study exploring how contemporary online cancer communities are used by people affected by cancer. Online communities offered multifaceted opportunities to support the cancer experience, and they may promote self-management in cancer care. These findings can inform and improve the delivery of existing online communities.