George Washington School of Medicine and Health Sciences, Washington, District of Columbia.
Akron Children's Hospital, Rebecca D. Considine Research Institute, Akron, Ohio.
Pediatr Blood Cancer. 2020 Oct;67(10):e28599. doi: 10.1002/pbc.28599. Epub 2020 Jul 19.
Cancer diagnoses pose challenges to adolescents' and young adults' (AYA) physical, mental, and emotional health, and developmental tasks. In order for AYAs, caregivers, clinicians, and other collaborators to optimize health outcomes (coproduction of health), understanding what living well means for AYAs who have experienced cancer is necessary. The objective was to develop an empirical definition of "living well" for AYAs who have experienced cancer to broadly understand AYA values and priorities. This definition may ultimately guide future conversations between caregivers and AYAs, eliciting thorough, personal definitions of living well from individual AYAs. Such conversations may enhance AYA participation in coproducing their health.
Qualitative analysis using a phenomenological approach of N = 30 structured Respecting Choices interviews conducted with AYAs (14-21 years; mean 84.2 [SD 69] months postcancer diagnosis with 21% on active treatment) from four tertiary pediatric hospitals in the context of a primary study of a pediatric advance care planning intervention trial.
AYAs who have experienced cancer conceptualized "living well" as maintaining physical, mental, and emotional health, as well as engaging in purposeful, age-appropriate activities with people important to them. Living well had three components: living mindfully, living an identity as a healthy AYA, and spending time with friends and family.
Conversations with AYAs who have experienced cancer elicited rich, complex concepts of "living well." Provider initiation of discussions about living well may facilitate personalized goals of care conversations. This study may serve as the basis to design and prototype future clinical interventions to enhance AYA engagement.
癌症诊断给青少年和年轻成年人（AYA）的身心健康和发展任务带来了挑战。为了使 AYA、照顾者、临床医生和其他合作者能够优化健康结果（共同促进健康），了解经历过癌症的 AYA 生活得好意味着什么是必要的。目的是为经历过癌症的 AYA 制定“生活得好”的经验定义，以广泛了解 AYA 的价值观和优先事项。这个定义最终可能会指导照顾者和 AYA 之间的未来对话，从每个 AYA 那里引出关于生活得好的全面而个人的定义。这样的对话可以增强 AYA 参与共同促进他们健康的程度。
采用现象学方法的定性分析，对来自四家三级儿科医院的 30 名 AYA（14-21 岁；癌症诊断后平均 84.2 [69] 个月，21%处于积极治疗中）进行了 30 次“尊重选择”的结构化访谈，这是一项儿科预立医疗照护计划干预试验的主要研究。
经历过癌症的 AYA 将“生活得好”概念化为保持身心健康，以及从事有意义的、适合年龄的活动，与对他们重要的人在一起。生活得好有三个组成部分：有意识地生活、作为一个健康的 AYA 生活、以及与朋友和家人共度时光。
与经历过癌症的 AYA 进行的对话引出了“生活得好”的丰富、复杂的概念。提供者主动发起关于生活得好的讨论，可能会促进个性化的护理目标对话。这项研究可以为设计和原型未来的临床干预措施提供基础，以增强 AYA 的参与度。
