Navigating cancer using online communities: a grounded theory of survivor and family experiences

Harkin, LJ ORCID: https://orcid.org/0000-0003-0511-5934, Beaver, K, Dey, P and Choong, K, 2017. Navigating cancer using online communities: a grounded theory of survivor and family experiences. Journal of Cancer Survivorship, 11 (6), pp. 658-669. ISSN 1932-2259

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Abstract

Purpose: People 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.

Methods: Twenty-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.

Results: A 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.

Conclusions: This 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 survivors: Cancer 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.

Item Type:	Journal article
Publication Title:	Journal of Cancer Survivorship
Creators:	Harkin, L.J., Beaver, K., Dey, P. and Choong, K.
Date:	December 2017
Volume:	11
Number:	6
ISSN:	1932-2259
Identifiers:	Number Type 10.1007/s11764-017-0616-1 DOI 616 Publisher Item Identifier
Rights:	This article is distributed under the terms of the Creative Commons Attribution 4.0 International License
Divisions:	Schools > School of Social Sciences
Record created by:	Jonathan Gallacher
Date Added:	08 Jan 2018 15:12
Last Modified:	31 Jan 2020 16:13
URI:	https://irep.ntu.ac.uk/id/eprint/32343

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