Stanford Children's Health, Department of Nursing Research and Evidence-Based Practice, Palo Alto, CA, USA.
Division of Hematology/Oncology, Department of Pediatrics, Stanford University School of Medicine.
J Pediatr Hematol Oncol Nurs. 2022 Sep-Oct;39(5):290-303. doi: 10.1177/27527530211068718. Epub 2022 Jan 15.
Adolescents and young adults (AYAs) with cancer must negotiate the transition between childhood and adulthood while dealing with a life-threatening illness. AYA involvement in decision making varies depending on the type of decision and when decisions occur during treatment, and evidence suggests that AYAs want to be involved in decision making. To explore involvement of AYAs with cancer in day-to-day decisions affected by their cancer and treatment. This qualitative study used interpretive focused ethnography within the sociologic tradition, informed by symbolic interactionism. Semi-structured interviews and informal participant observation took place at two quaternary pediatric oncology programs. Thirty-one interviews were conducted with 16 AYAs ages 15 to 20 years. Major day to day decision-making categories identified included: (1) mental mindset, (2) self-care practices, (3) self-advocacy, and (4) negotiating relationships. Participants described how they came to grips with their illness early on and decided to fight their cancer. They described decisions they made to protect their health, how they advocated for themselves and decisions they made about relationships with family and friends. Through day-to-day decisions, participants managed the impact of cancer and its treatment on their daily lives. Research should focus on developing and implementing interventions to empower AYAs to participate in day-to-day decisions that will affect how they manage their cancer, its treatment and ultimately their outcomes. Healthcare providers can facilitate AYA's participation in day-to-day decision making through encouraging autonomy and self-efficacy by providing support and through effective communication.
青少年和年轻成年人（AYAs）患有癌症，在与危及生命的疾病作斗争的同时，必须在童年和成年之间进行过渡。AYA 参与决策的程度取决于决策的类型以及治疗期间决策发生的时间，并且有证据表明 AYAs 希望参与决策。为了探讨癌症 AYA 在日常生活中因癌症和治疗而受到影响的决策中的参与度。本定性研究使用了社会学传统中的解释性聚焦民族志，并受到符号互动主义的启发。半结构化访谈和非正式的参与者观察在两个四级儿科肿瘤学计划中进行。对 15 至 20 岁的 16 名 AYA 进行了 31 次访谈。确定的主要日常决策类别包括：（1）精神状态，（2）自我保健实践，（3）自我倡导，和（4）协商关系。参与者描述了他们如何及早应对疾病并决定与癌症作斗争。他们描述了为保护自己的健康所做的决定，他们如何为自己辩护以及与家人和朋友的关系所做的决定。通过日常决策，参与者管理了癌症及其治疗对日常生活的影响。研究应重点开发和实施干预措施，使 AYA 能够参与日常决策，从而影响他们对癌症的管理，其治疗以及最终结果。医疗保健提供者可以通过提供支持和有效的沟通，通过鼓励自主性和自我效能感来促进 AYA 参与日常决策。
