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

被引：2

作者：

Ankrah E.A. ^{[1
]}

Marathe M. ^{[2
]}

Bhattacharya A. ^{[3
]}

Ritt-Olson A. ^{[1
]}

Milam J.E. ^{[1
]}

Torno L. ^{[4
]}

Hayes G.R. ^{[1
]}

机构：

[1] University of California, Irvine, 120 Theory Ste 100, Irvine, CA

[2] Michigan State University, 220 Trowbridge Rd, East Lansing, MI

[3] University of Washington, Seattle, WA

[4] Children's Hospital of Orange County, 1201 W La Veta Ave, Orange, CA

来源：

Proceedings of the ACM on Human-Computer Interaction | 2023年 / 7卷 / CSCW2期

基金：

美国国家科学基金会; 美国国家卫生研究院;

关键词：

care coordination; care transfer; childhood cancer survivors; children with chronic conditions; patient handoff; researcher wellbeing; survivorship; transitions;

D O I：

10.1145/3610201

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

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. © 2023 Owner/Author.

引用

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