Author Affiliations: Lucile Packard Children's Hospital Stanford, Palo Alto, California (Drs Pyke-Grimm and Halpern-Felsher); School of Nursing, Department of Family Health Care Nursing, University of California, San Francisco (Drs Franck and Rehm); Department of Pediatrics, Division of Adolescent Medicine, Stanford University, California (Dr Halpern-Felsher); and University of California, San Francisco, Benioff Children's Hospital (Dr Goldsby).
Cancer Nurs. 2020 Nov/Dec;43(6):436-445. doi: 10.1097/NCC.0000000000000820.
Adolescents and young adults (AYAs) experience treatment nonadherence rates as high as 60%, which can increase the risk of cancer relapse. Involvement of AYAs in treatment decisions might support adherence to medical treatment.
The aim of this study was to explore the involvement of AYAs, aged 15 to 20 years, in cancer treatment decision making (TDM).
Using interpretive focused ethnography, we conducted interviews with 16 AYAs (total of 31 interviews) receiving cancer treatment within 1 year of diagnosis. Participants reflected on a major recent TDM experience (eg, clinical trial, surgery) and other treatment decisions.
Participants distinguished important major cancer treatment decisions from minor supportive care decisions. We identified 3 common dimensions related to AYAs' involvement in cancer TDM: (1) becoming experienced with cancer, (2) import of the decision, and (3) decision-making roles. The preferences of AYAs for participation in TDM varied over time and by type of decision. We have proposed a 3-dimensional model to illustrate how these dimensions might interact to portray TDM during the first year of cancer treatment for AYAs.
As AYAs accumulate experience in making decisions, their TDM preferences might evolve at different rates depending on whether the decisions are perceived to be minor or major. Parents played a particularly important supportive role in TDM for AYA participants.
Clinicians should consider the AYAs' preferences and the role they want to assume in making different decisions in order to support and encourage involvement in their TDM and care.
青少年和年轻人（AYAs）的治疗不依从率高达 60%，这会增加癌症复发的风险。让 AYAs 参与治疗决策可能有助于他们遵守医疗治疗。
本研究旨在探讨 15 至 20 岁 AYAs 在癌症治疗决策（TDM）中的参与情况。
采用解释性聚焦民族志方法，我们对 16 名在诊断后 1 年内接受癌症治疗的 AYA（共 31 次访谈）进行了访谈。参与者反思了最近一次重要的 TDM 经历（例如临床试验、手术）和其他治疗决策。
参与者将重要的主要癌症治疗决策与次要的支持性护理决策区分开来。我们确定了与 AYA 参与癌症 TDM 相关的 3 个共同维度：（1）对癌症的熟悉程度，（2）决策的重要性，和（3）决策角色。AYAs 对 TDM 的参与偏好随时间和决策类型而变化。我们提出了一个 3 维模型，以说明这些维度如何相互作用，描绘 AYA 癌症治疗的第一年的 TDM。
随着 AYAs 在决策方面积累经验，他们的 TDM 偏好可能会根据决策是否被认为是次要或主要而以不同的速度演变。父母在 AYA 参与者的 TDM 中扮演着特别重要的支持角色。
临床医生应考虑 AYAs 的偏好以及他们在做出不同决策时想要承担的角色，以支持和鼓励他们参与 TDM 和护理。
