Finding Information, Fostering Connection, Taking Control: Towards Self-Advocacy Technologies for AYA Cancer Survivors

Paper Title

Finding Information, Fostering Connection, Taking Control: Towards Self-Advocacy Technologies for AYA Cancer Survivors

Publication Info

• Topic area: Human-Computer Interaction (HCI) for adolescent and young adult (AYA) cancer survivorship.
• Keywords: AYA cancer survivors, self-advocacy, digital ecosystems, peer support, asset-based design, survivorship technology, reflexive-interventionist, community stewardship, health information seeking, socio-technical systems.

Background and Problem

• Problem / challenge: Existing health technologies for AYA cancer survivors focus predominantly on self-management and deficit-based approaches, neglecting the transition to self-advocacy and the dynamic negotiation of evolving needs and capabilities.
• Significance: Supporting self-advocacy is critical for improving long-term survivorship outcomes, addressing systemic healthcare gaps, and empowering survivors to navigate fragmented care systems and psychosocial challenges.
• Motivation and related work: Prior HCI research has explored self-management tools and online health communities but has not adequately addressed how survivors transition from passive information seekers to active advocates. This paper seeks to fill this gap by examining survivors’ evolving digital practices and proposing design implications for socio-technical systems.

Solution

• Proposed approach: A reflexive-interventionist framework to analyze and support the transition from self-management to self-advocacy in AYA cancer survivors through adaptive, asset-based technological systems.
• Novelty:
  1. A critical examination of deficit- and asset-based paradigms in survivorship technologies, emphasizing the dynamic negotiation between persistent needs and developing capabilities.
  2. Empirical insights into survivors’ evolving practices across three phases: family-mediated interactions, autonomous ecosystem curation, and community stewardship.
  3. Design implications for adaptive, cross-platform systems that support survivors’ developmental trajectories and collective capacity-building.
• Procedure and key techniques:
  • Conducted semi-structured interviews with 14 AYA cancer survivors (ages 18–30) diagnosed during childhood or adolescence.
  • Thematic analysis of survivors’ narratives to identify transitions in technology use, self-perception, and community roles.
  • Development of a staged design framework with specific guidelines for each phase of survivorship.

Results

• Concrete findings:
  • Survivors transition through three phases: (1) passive, family-mediated technology use during treatment, (2) active information seeking and ecosystem curation post-treatment, and (3) divergent paths of maintenance, stewardship, or advocacy in long-term survivorship.
  • Survivors strategically navigate platform tradeoffs (e.g., safety vs. reach) and develop critical digital literacies to vet information and manage boundaries.
  • Advocacy emerges as a reciprocal act, with survivors reframing personal experiences as community assets and engaging in stewardship practices like mentoring, resource sharing, and norm enforcement.
• Advantage over baselines:
  • Moves beyond static, deficit-focused tools to propose adaptive systems that evolve with users’ needs and expertise.
  • Emphasizes collective capacity-building and community-driven development, addressing gaps in existing HCI frameworks.
• Experiments / evaluation:
  • Interviews with 14 participants captured longitudinal survivorship experiences, including retrospective and real-time reflections on digital practices.
  • Thematic analysis identified key transitions, challenges, and design opportunities across survivorship phases.
• Limitations and future work:
  • Limited demographic diversity and reliance on retrospective accounts may introduce bias.
  • Future research should include larger, more diverse samples, longitudinal ethnographic studies, and participatory design methods to validate and extend findings.

Summary

This paper examines how AYA cancer survivors transition from passive patients to active self-advocates by curating digital support ecosystems and engaging in community stewardship. Through interviews with 14 survivors, it identifies three survivorship phases and proposes a staged design framework to support their evolving needs. Key contributions include adaptive pathways for graduated exposure to information, tools for ecosystem curation, and mechanisms for fostering advocacy and systemic change. The findings highlight the importance of designing technologies that balance safety, autonomy, and collective capacity-building, offering actionable insights for HCI researchers and practitioners.