JMIR Publications

ABSTRACT

Background:

Online cancer communities provide young adult (YA) cancer survivors with access to informational and emotional support that may not be available in traditional care settings. While these platforms offer vital connection opportunities, the unique pathways YA survivors take to find online communities—and the challenges they encounter—remain underexplored.

Objective:

This study aimed to (1) examine how YA cancer survivors locate and access online cancer communities, and (2) identify barriers that impede their participation or sustained engagement.

Methods:

The first author conducted semi-structured interviews with 12 YA cancer survivors aged 18–39 who had experience using online resources after their diagnosis. Participants were recruited through purposive and snowball sampling from YA cancer-focused nonprofit organizations. Interviews were conducted via Zoom and analyzed using thematic analysis. The analytic process followed Braun and Clarke’s six-phase framework and was supported by MAXQDA software. Codes and themes were generated inductively and refined iteratively.

Results:

Participants described five primary pathways to discovering online cancer communities: (1) direct searching using hashtags or keywords, (2) community hubs on public accounts, (3) referrals from health providers or social networks, (4) algorithm-recommended content, and (5) connections formed within pre-existing online interest-based groups. Despite the promise of digital tools, participants encountered five roadblocks. Platform fragmentation and digital literacy complicated initial discovery. Lack of representation made it difficult for some to find communities where they felt seen. Emotional overload and engagement fatigue, along with shifting group hierarchies and boundaries, further hindered sustained participation. Lastly, concerns about cyberbullying discouraged open engagement, prompting some to withdraw or limit their presence in online communities.

Conclusions:

YA cancer survivors navigate a fragmented and emotionally complex digital landscape in search of social support. Their ability to access and engage with online communities is shaped not only by individual agency, but also by structural and relational factors. This study underscores the need for more discoverable, inclusive and sustainable digital support environments. Oncology professionals and peer survivors can play a vital role in facilitating safe, informed access to online cancer communities. Multilevel psychoeducation and training with healthcare providers, YA cancer survivors and online community founders and facilitators are warranted to bridge gaps and enhance equity in digital survivorship care.