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
contributionto 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 normalized
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.
Original language | English |
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Journal | Journal of Cancer Survivorship |
Early online date | 3 May 2017 |
DOIs | |
Publication status | E-pub ahead of print - 3 May 2017 |
Keywords
- Cancer
- Online support
- Supportive care
- Social media
- Qualitative research Grounded theory