research-article

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Plan For Tomorrow: The Experience of Adolescent and Young Adult Childhood Cancer Survivors as they Transition to Adult Care

Authors:

Elizabeth A. Ankrah,

Arpita Bhattacharya,

Anamara Ritt-Olson,

Lilibeth Torno,

Gillian R. HayesAuthors Info & Claims

Proceedings of the ACM on Human-Computer Interaction, Volume 7, Issue CSCW2

Article No.: 352, Pages 1 - 27

https://doi.org/10.1145/3610201

Published: 04 October 2023 Publication History

Abstract

Access to and understanding one's medical history is crucial to maintaining long-term care. As adolescents and young adults childhood cancer survivors age, they must transition and transfer their health care from their pediatric to an adult care institution. In this study, we provide empirical evidence reporting on the after-cancer treatment experiences of childhood cancer survivors through their transition. We report findings from 24 semi-structured interviews with adolescent and young adult cancer survivors participating in a childhood cancer survivorship program that prepares them for adult care. Our findings reveal three parts of their after-cancer treatment experience: the assumption of responsibility for their complex care needs and medical information and the overall transfer and maintenance of the continuity of their care to an adult clinician. Our findings suggest that survivors may play an essential yet unrecognized role in the patient hand-off. Thus, we introduce patient-mediate handoffs and suggest design opportunities.

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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 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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Plan For Tomorrow: The Experience of Adolescent and Young Adult Childhood Cancer Survivors as they Transition to Adult Care

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cover image Proceedings of the ACM on Human-Computer Interaction

Proceedings of the ACM on Human-Computer Interaction Volume 7, Issue CSCW2

CSCW

October 2023

4055 pages

EISSN:2573-0142

DOI:10.1145/3626953

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Jeff Nichols
Apple Inc., United States

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Published: 04 October 2023

Published in PACMHCI Volume 7, Issue CSCW2

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UC Irvine?s Chao Family Comprehensive Cancer Center - UCI Anti-Cancer Challenge
the Jacobs Foundation CERES Network
National Science Foundation Graduate Research Fellowship
National Cancer Institute of the National Institutes of Health

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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 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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