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Parental views on communication between children and clinicians in pediatric oncology: a qualitative study.家长对儿科肿瘤学中儿童与临床医生之间沟通的看法:一项定性研究。
Support Care Cancer. 2021 Sep;29(9):4957-4968. doi: 10.1007/s00520-021-06047-6. Epub 2021 Feb 10.
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Communication in Pediatric Oncology: A Qualitative Study.儿科肿瘤学中的沟通:一项定性研究。
Pediatrics. 2020 Sep;146(3). doi: 10.1542/peds.2020-1193.
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Optimizing health literacy to facilitate reproductive health decision-making in adolescent and young adults with cancer.优化健康素养,以促进青少年和青年癌症患者的生殖健康决策。
Pediatr Blood Cancer. 2023 Sep;70 Suppl 5(Suppl 5):e28476. doi: 10.1002/pbc.28476. Epub 2020 Jul 6.
4
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J Adolesc Young Adult Oncol. 2020 Aug;9(4):464-471. doi: 10.1089/jayao.2019.0135. Epub 2020 Feb 24.
5
The challenges of making informed decisions about treatment and trial participation following a cancer diagnosis: a qualitative study involving adolescents and young adults with cancer and their caregivers.癌症诊断后关于治疗和试验参与的知情决策面临的挑战:一项涉及癌症青少年和年轻患者及其照顾者的定性研究。
BMC Health Serv Res. 2020 Jan 8;20(1):25. doi: 10.1186/s12913-019-4851-1.
6
Emotions as Social Information in Shared Decision-Making in Oncology.情绪作为肿瘤学共同决策中的社会信息。
Oncology. 2020;98(6):430-437. doi: 10.1159/000505341. Epub 2020 Jan 3.
7
The role of emotions in cancer patients' decision-making.情绪在癌症患者决策中的作用。
Ecancermedicalscience. 2019 Mar 28;13:914. doi: 10.3332/ecancer.2019.914. eCollection 2019.
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Adolescent and Young Adult Cancer Patients' Experiences With Treatment Decision-making.青少年和青年癌症患者的治疗决策体验。
Pediatrics. 2019 May;143(5). doi: 10.1542/peds.2018-2800.
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Treatment Decision-Making Involvement in Adolescents and Young Adults With Cancer.癌症青少年和青年患者的治疗决策参与情况
Oncol Nurs Forum. 2019 Jan 13;46(1):E22-E37. doi: 10.1188/19.ONF.E22-E37.
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"It Changed Our Outlook on How We Want to Live": Cancer as a Transformative Health Experience for Young Adult Survivors and Their Family Members.“这改变了我们的生活观念”:癌症对青年幸存者及其家庭成员的转变性健康体验。
Qual Health Res. 2019 Feb;29(3):404-417. doi: 10.1177/1049732318800674. Epub 2018 Sep 20.

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.

DOI:10.1177/10497323211037654
PMID:34382889
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC9198895/
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。