Pathways and Roadblocks in Navigating Online Cancer Communities: Qualitative Study Among Young Adult Cancer Survivors - Original Paper

Sep 23, 2026

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Online cancer communities offer young adult (YA) cancer survivors access to both information and emotional support that may be limited in traditional care. Despite the connection opportunities these platforms provide, the specific pathways YA survivors use to find communities and the obstacles they face have received little study. This qualitative study used semistructured interviews with 12 YA survivors to examine access pathways and barriers to participation and sustained engagement.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages15

Reading Time38 min

AccessFree to download

Abstract

Background

Objectives

Methods

Results

Conclusions

Introduction

Online cancer communities and support context

JMIR CANCER Chen et al Original Paper Pathways and Roadblocks in Navigating Online Cancer Communities: Qualitative Study Among Young Adult Cancer Survivors | Qi Chen1 , MSW, PhD; Erin Donovan2 , PhD; Leyi Zhou3 , MSW; Lailea Noel4 , MSW, PhD; Barbara Jones5 , MSW, PhD | | --- | | 1Silberman School of Social Work, Hunter College, City University of New York, New York, NY, United States
2Department of Communication Studies, Moody College of Communication, The University of Texas at Austin, Austin, TX, United States 3School of Social Welfare, University of California, Berkeley, Berkeley, CA, United States
4Steve Hicks School of Social Work, The University of Texas at Austin, Austin, TX, United States 5School of Social Work, Boston University, Boston, MA, United States
Corresponding Author:
Qi Chen, MSW, PhD
Silberman School of Social Work
Hunter College, City University of New York 2180 3rd Ave, Room 453
New York, NY 10035 United States
Phone: 1 (212) 396-7586
Email: [qi.chen@hunter.cuny.edu](qi.chen@hunter.cuny.edu)
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. Objectives: 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 semistructured interviews with 12 YA cancer survivors aged 18 to 39 years who had experience using online resources after their diagnosis. Participants were recruited through purposive and snowball sampling from YA cancer-focused nonprofit organizations and through social media. Interviews were conducted via Zoom and analyzed using thematic analysis. The analytic process followed Braun and Clarke’s 6-phase framework and was supported by MAXQDA software. Codes and themes were generated inductively and refined iteratively. Results: Participants ranged in age from 24 to 39 years (mean 32, SD 5.08 years), with an average of 3 (SD 2.98) years since diagnosis. Most identified as female (n=9, 75%) and non-Hispanic White (n=7, 58%) . Over half held a graduate degree (n=7, 58%), half were employed full time (n=6, 50%), and most resided in suburban areas (n=8, 67%) . Cancer diagnoses included leukemia (n=3, 25%), lymphoma (n=4, 33%), and other solid tumors such as testicular, colon, and uterine cancers . At the time of the interview, 3 (25%) participants were in active treatment and 9 (75%) had completed treatment. 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 preexisting online interest-based groups. Despite the promise of digital tools, participants encountered five roadblocks: (1) platform fragmentation and digital literacy complicated initial discovery; (2) lack of representation made it difficult for some to find communities where they felt seen; (3) emotional overload and engagement fatigue, along with shifting group hierarchies and boundaries, further hindered sustained participation; and (5) lastly, concerns about cyberbullying discouraged open engagement, prompting some to withdraw or limit their presence in online communities. Conclusions: YA cancer survivors navigated a fragmented and emotionally complex digital landscape in search of social support. Their ability to access and engage with online communities was shaped not only by individual agency and digital literacy but also by structural and relational factors. This study

FAQs

What was the study's main purpose?

To examine how young adult cancer survivors locate and access online cancer communities and to identify barriers that hinder participation or sustained engagement.

How were participants recruited and data collected?

Twelve young adult cancer survivors aged 18 to 39 were recruited through purposive and snowball sampling via YA cancer-focused nonprofits and social media. Semistructured interviews were conducted via Zoom and analyzed using thematic analysis.

What pathways and roadblocks did participants describe?

Participants described five pathways to discovery, including direct searching, community hubs, referrals, algorithm-recommended content, and interest-based group connections. They also reported five roadblocks such as platform fragmentation, lack of representation, emotional overload and engagement fatigue, and concerns about cyberbullying.

Sep 23, 2026

Upload by Himbo