Abstract
PurposePeople affected by cancer often have unmet emotional and social support needs. Online cancer communities are a convenient channel for connecting cancer survivors, allowing them to support one another. However, it is unclear whether online community use makes a meaningful contribution to cancer survivorship, as little previous research has examined the experience of using contemporary cancer communities. We aimed to explore the experiences of visitors to online cancer communities.MethodsTwenty-three in-depth interviews were conducted with online cancer community visitors, including cancer survivors (n = 18), family members (n = 2), and individuals who were both a survivor and family member (n = 3). Interviews were analysed using a grounded theory approach.ResultsA theory developed explaining how individuals ‘navigated’ the experience of cancer using online cancer communities. Online advice and information led participants on a ‘journey to become informed’. Online friendships normalised survivorship and cast participants on a ‘journey to recreate identity’. Participants navigated a ‘journey through different worlds’ as they discovered relevant and hidden communities.ConclusionsThis theory highlights virtual paths people affected by cancer can take to self-manage their experience of the disease. Online community experiences can be improved by promoting online evaluation skills and signposting visitors to bereavement support.Implications for cancer survivorsCancer survivors can benefit through both lurking and posting in online communities. However, individuals risk becoming distressed when they befriend individuals who may soon die. Additionally, people affected by rarer cancers can struggle to find shared experiences online and may need to look elsewhere for support.
Highlights
By 2030, there will be approximately 23.6 million new cases of cancer reported worldwide each year [1]
This study aimed to explore the experiences of visitors to online cancer communities and to generate a grounded theory of online cancer community use amongst people affected by cancer
Before a policy can advocate the use of particular online communities, there must be reliable evidence to show that the communities will benefit people affected by cancer [74]
Summary
By 2030, there will be approximately 23.6 million new cases of cancer reported worldwide each year [1]. Cancer survivorship can have significant negative psycho-social consequences. Survivors and their families can both struggle to adjust to their fear of the cancer survivor dying, uncertainty of the outcome of treatment, and perceived lack of control over the future [2,3,4]. Clinical cancer care guidelines in the UK and USA have recommended that individuals be offered social and emotional support to alleviate feelings of distress [7, 8]. As a major worldwide chronic disease, providing psycho-social support for the growing cancer survivor population is a significant economic burden [9, 10]. There has been a call for more affordable and efficient ways of offering support to people and families affected by cancer [10]
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