When Worlds Collide: Boundary Management of Adolescent and Young Adult Childhood Cancer Survivors and Caregivers

Title of the Paper

When Worlds Collide: Boundary Management of Adolescent and Young Adult Childhood Cancer Survivors and Caregivers

Paper Information

• Subject Area: Social experiences and technological support for adolescent and young adult childhood cancer survivors
• Keywords: Survivor management, boundary management, information disclosure, adolescent transition, childhood cancer survivors

Research Background and Problem

• Identified Problems or Challenges: Childhood cancer survivors face multiple challenges as they transition into adolescence and adulthood, including health management, economic, and psychosocial issues. These challenges impact their quality of life and require them to balance identity development with daily life demands.
• Significance: The difficulties of this transitional phase and the lack of systemic support make survivors prone to being overlooked. Their lived experiences urgently need understanding and support.
• Research Motivation and Related Work: Current HCI (Human-Computer Interaction) research on cancer survivors predominantly focuses on adult breast cancer or other adult cancer patients. There is limited research on the experiences of childhood cancer survivors in social contexts. Additionally, the design of information and communication technologies (ICT) often fails to consider the unique needs of these survivors.

Solution

• Research Method: The authors conducted interviews with 24 adolescent and young adult cancer survivors (aged 15-35) and 6 caregivers to deeply analyze how cancer survivors manage their interpersonal and social boundaries outside of medical contexts.
• Innovative Aspects: This study explores the impact of boundaries on survivors' well-being from a boundary management perspective, examining social, relational, and personal levels. It also provides exploratory recommendations for designing socio-technical support for these survivors and their communities.
• Implementation Steps and Key Techniques:
  1. Data Collection: Semi-structured video interviews were conducted, covering topics such as survivors' medical history, social support, and identity development.
  2. Analysis Method: Thematic coding was used to analyze interview data, focusing on themes and phenomena related to "boundaries."
  3. Three-Level Boundary Classification:
     • Social Boundaries: Legal, ethical, and institutional barriers (e.g., educational system rights, confidentiality of health-related information).
     • Relational Boundaries: Boundaries in communication and information disclosure between survivors and their family, friends, and social networks.
     • Personal Boundaries: Mechanisms related to identity recognition and alignment with personal values.

Research Findings

• Specific Findings:

  1. Social Boundaries: Legal and institutional frameworks (e.g., privacy protection laws) limit access to and management of information, sometimes increasing the burden on caregivers and survivors. Survivors need to develop self-advocacy skills.
  2. Relational Boundaries: Survivors manage information disclosure in various social contexts to maintain privacy. Particularly when interacting with family, friends, and social media, the disclosure and management of boundaries affect their psychological burden and perceived support.
  3. Personal Boundaries: Survivors' identity recognition is complex and diverse due to their childhood experiences. Some choose to openly embrace their "survivor" identity, while others prefer to conceal it.

• Advantages Over Existing Solutions: The study proposes socio-technical design recommendations, such as tools to support transparency in survivors' online information disclosure and technologies to enhance communication across systems.

• Experimental or Evaluation Results: Qualitative analysis indicates that survivors' boundary management strategies significantly impact their mental health and social support networks. Survivor-centered support technologies need to better align with their needs.

• Limitations and Future Directions:

  • Sample Limitations: The study only included survivors from a single U.S. hospital, which may limit the generalizability of the data.
  • Suggestions for Future Research: Future studies should explore disconnected survivors, expand sample diversity (e.g., different racial and cultural backgrounds), and involve other stakeholders in the design process (e.g., social workers, school administrators).