Plan For Tomorrow: The Experience of Adolescent and Young Adult Childhood Cancer Survivors as they Transition to Adult Care-Reference-Cited by-同舟云学术

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

Published:2023-09-28 Issue:CSCW2 Volume:7 Page:1-27
ISSN:2573-0142
Container-title:Proceedings of the ACM on Human-Computer Interaction
language:en
Short-container-title:Proc. ACM Hum.-Comput. Interact.

Author:

Ankrah Elizabeth A.¹^ORCID,Marathe Megh²^ORCID,Bhattacharya Arpita³^ORCID,Ritt-Olson Anamara⁴^ORCID,Milam Joel E.⁴^ORCID,Torno Lilibeth⁵^ORCID,Hayes Gillian R.¹^ORCID

Affiliation:

1. University of California, Irvine, Irvine, CA, USA

2. Michigan State University, East Lansing, MI, USA

3. University of Washington, Seattle, WA, USA

4. University of California Irvine, Irvine, CA, USA

5. Children's Hospital of Orange County, Orange, CA, USA

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.

Funder

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

Publisher

Association for Computing Machinery (ACM)

Subject

Computer Networks and Communications,Human-Computer Interaction,Social Sciences (miscellaneous)

Link

https://dl.acm.org/doi/pdf/10.1145/3610201

Reference66 articles.

1. [n. d.]. Childhood Cancer Fact Library -- CAC2. https://cac2.org/interest-groups/awareness/childhood-cancer-fact-library/ [n. d.]. Childhood Cancer Fact Library -- CAC2. https://cac2.org/interest-groups/awareness/childhood-cancer-fact-library/

2. [n. d.]. Health insurance plan & network types: HMOs PPOs and more. https://www.healthcare.gov/choose-a-plan/plan-types/ [n. d.]. Health insurance plan & network types: HMOs PPOs and more. https://www.healthcare.gov/choose-a-plan/plan-types/

3. 2015. Organ Transplants and Cancer Risk. https://www.nih.gov/news-events/nih-research-matters/organ-transplants-cancer-risk 2015. Organ Transplants and Cancer Risk. https://www.nih.gov/news-events/nih-research-matters/organ-transplants-cancer-risk

4. 104th United States Congress. 1996 . Health Insurance Portability and Accountability Act. 104th United States Congress. 1996. Health Insurance Portability and Accountability Act.

5. Challenges to inter-departmental coordination of patient transfers: A workflow perspective