癌症相关决策:青少年、青年、照顾者和肿瘤学提供者的视角。

Cancer-Related Decision-Making Among Adolescents, Young Adults, Caregivers, and Oncology Providers.

机构信息

Children's Hospital of Philadelphia, Philadelphia, PA, USA.

University of Pennsylvania, Philadelphia, PA, USA.

出版信息

Qual Health Res. 2021 Nov;31(13):2355-2363. doi: 10.1177/10497323211037654. Epub 2021 Aug 12.

Abstract

Decision-making among adolescents and young adults with cancer (AYA) is often complex, ongoing, and multifaceted, involving caregiver and oncology provider perspectives. Engagement in decision-making against the backdrop of normative developmental processes of acquiring autonomy and gaining independence contributes to the complexity of decision-making. Semi-structured qualitative interviews from 11 AYA and caregiver dyads and eight oncology providers examined decision-making processes with specific attention to the role of shared decision-making, cognitive and emotional processes, and coping with the decision-making experience. Five decision-making patterns were identified, with and most commonly described. Utilizing hypothesis coding, AYA and caregivers explained how cognitive (i.e., pros/cons) and emotional (i.e., shock and fear of missing out) processes influenced cancer-related decisions. Coping strategies provided clarity and respite when engaged in decision-making. Our findings illuminate important implications for how to best support decision-making among AYA and caregivers, including the role oncology providers can play during decision-making.

摘要

青少年和青年癌症患者(AYA)的决策往往是复杂的、持续的和多方面的,涉及照顾者和肿瘤学提供者的观点。在获得自主性和独立性的正常发展过程的背景下参与决策,增加了决策的复杂性。对 11 对 AYA 和照顾者以及 8 名肿瘤学提供者的半结构化定性访谈,专门研究了决策过程,特别关注共同决策、认知和情绪过程以及应对决策体验的作用。确定了五种决策模式,其中 和 最常被描述。利用假设编码,AYA 和照顾者解释了认知(即利弊)和情绪(即震惊和害怕错过)过程如何影响癌症相关决策。应对策略在决策时提供了清晰的认识和喘息的机会。我们的研究结果阐明了如何最好地支持 AYA 和照顾者的决策,包括肿瘤学提供者在决策过程中可以发挥的作用。

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