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

Authors:

Elizabeth A. Ankrah,

Arpita Bhattacharya,

Lissamarie Donjuan,

Franceli L. Cibrian,

Lilibeth Torno,

Anamara Ritt Olson,

Gillian HayesAuthors Info & Claims

CHI '22: Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems

Article No.: 523, Pages 1 - 16

https://doi.org/10.1145/3491102.3517544

Published: 29 April 2022 Publication History

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Abstract

Adolescent and young adult childhood cancer survivors experience health complications, late or long-term biomedical complications, as well as economic and psychosocial challenges that can have a lifelong impact on their quality-of-life. As childhood cancer survivors transition into adulthood, they must learn to balance their identity development with demands of everyday life and the near- and long-term consequences of their cancer experience, all of which have implications for the ways they use existing technologies and the design of novel technologies. In this study, we interviewed 24 childhood cancer survivors and six caregivers about their cancer survivorship experiences. The results of our analysis indicate that the challenges of transitioning to adulthood as a cancer survivor necessitate the development and management of multiple societal, relational, and personal boundaries, processes that social computing technologies can help or hinder. This paper contributes to the empirical understanding of adolescent and young adult cancer survivors’ social experiences. We further contribute sociotechnical design provocations for researchers, designers, and community members to support survivors.

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Published In

cover image ACM Conferences

CHI '22: Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems

April 2022

10459 pages

ISBN:9781450391573

DOI:10.1145/3491102

Editors:
Simone Barbosa
PUC-Rio, Brazil
,
Cliff Lampe
University of Michigan, USA
,
Caroline Appert
Université Paris-Saclay, France
,
David A. Shamma
Toyota Research Institute, USA
,
Steven Drucker
Microsoft Research, USA
,
Julie Williamson
University of Glasgow, UK
,
Koji Yatani
University of Tokyo, Japan

Copyright © 2022 Owner/Author.

This work is licensed under a Creative Commons Attribution International 4.0 License.

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Association for Computing Machinery

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Published: 29 April 2022

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CHI '22: CHI Conference on Human Factors in Computing Systems

April 29 - May 5, 2022

LA, New Orleans, USA

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Su ZKamath STirakitsoontorn PChen Y(2024)Creating Safe Places: Understanding the Lived Experiences of Families Managing Cystic Fibrosis in Young ChildrenProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642334(1-18)Online publication date: 11-May-2024
https://dl.acm.org/doi/10.1145/3613904.3642334
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