Secret Groups and Open Forums: Defining Online Support Communities from the Perspective of People Affected by Cancer

Harkin, Lydia, Beaver, Kinta orcid iconORCID: 0000-0002-6552-2323, Dey, Paola and Choong, Kartina Aisha orcid iconORCID: 0000-0001-9407-1771 (2020) Secret Groups and Open Forums: Defining Online Support Communities from the Perspective of People Affected by Cancer. Digital Health, 6 .

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Objective: A quarter of people diagnosed with cancer lack social support. Online cancer communities could allow people to connect and support one another. However, the current proliferation of online support communities constitute a range of online environments with differing communication capacities and limitations. It is unclear what is perceived as online cancer community support and how different features can help or hinder supportive group processes. This study aimed to explore how perceived support is influenced by the different features and formats of online support environments. Methods: In-depth qualitative interviews were conducted with 23 individuals affected by a range of cancer diagnoses, including both cancer survivors and family members. Data were analysed using deductive thematic analysis guided by a constructivist epistemological perspective. Findings: Online supportive communities were defined and differentiated by two themes. Firstly, ‘Open forums’ were identified with thematic properties which facilitated a uniquely informative environment including ‘Safety in Anonymity’, ‘Perceived Reliability’ and ‘Exposure and Detachment’. Secondly, ‘Secret groups’ were identified with thematic properties which enhanced an emotionally supportive environment including ‘Personalised Interactions’, an overt ‘Peer Hierarchy’, and ‘Crossing the Virtual Divide’. Conclusions: Properties of groups can engender different degrees of interpersonal relations and different supportive interactions. In particular, support community designers may want to adapt key features such as anonymity, trustworthiness of websites, and the personalised nature of conversations to influence the development of supportive environments. In personalised peer-led groups, it may be prudent to provide guidance on how to reassert a positive environment if arguments break out online.

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