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本文引用的文献

1
Does age matter? Comparing post-treatment psychosocial outcomes in young adult and older adult cancer survivors with their cancer-free peers.年龄重要吗?比较年轻成年和老年癌症幸存者与无癌症同龄人治疗后的心理社会结局。
Psychooncology. 2018 May;27(5):1404-1411. doi: 10.1002/pon.4490. Epub 2017 Aug 4.
2
Clinical research participation among adolescent and young adults at an NCI-designated Comprehensive Cancer Center and affiliated pediatric hospital.在一家美国国立癌症研究所指定的综合癌症中心及附属儿童医院中,青少年和青年成年人参与临床研究的情况。
Support Care Cancer. 2017 May;25(5):1579-1586. doi: 10.1007/s00520-016-3558-7. Epub 2017 Jan 10.
3
Disparity in Outcomes for Adolescent and Young Adult Patients Diagnosed With Pediatric Solid Tumors Across 4 Decades.40年间被诊断为儿童实体瘤的青少年和青年患者的预后差异。
Am J Clin Oncol. 2018 May;41(5):471-475. doi: 10.1097/COC.0000000000000304.
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What do adolescents and young adults want from cancer resources? Insights from a Delphi panel of AYA patients.青少年和青年成年人希望从癌症资源中获得什么?来自青少年和青年成年人患者德尔菲小组的见解。
Support Care Cancer. 2017 Jan;25(1):119-126. doi: 10.1007/s00520-016-3396-7. Epub 2016 Aug 31.
5
Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review.青少年和青年期(AYA)确诊的癌症幸存者的心理社会结局与干预措施:一项系统综述
J Cancer Surviv. 2016 Oct;10(5):814-31. doi: 10.1007/s11764-016-0527-6. Epub 2016 Feb 26.
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Next steps for adolescent and young adult oncology workshop: An update on progress and recommendations for the future.青少年和青年肿瘤学研讨会的后续步骤:进展更新及未来建议
Cancer. 2016 Apr 1;122(7):988-99. doi: 10.1002/cncr.29870. Epub 2016 Feb 5.
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Increased risk of second malignant neoplasms in adolescents and young adults with cancer.患癌青少年和青年发生第二原发性恶性肿瘤的风险增加。
Cancer. 2016 Jan 1;122(1):116-23. doi: 10.1002/cncr.29685. Epub 2015 Oct 6.
8
Identifying and addressing the needs of adolescents and young adults with cancer: summary of an Institute of Medicine workshop.识别并满足癌症青少年和青年成人的需求:医学研究所研讨会综述
Oncologist. 2015 Feb;20(2):186-95. doi: 10.1634/theoncologist.2014-0265. Epub 2015 Jan 7.
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Using Grounded Theory Method to Capture and Analyze Health Care Experiences.运用扎根理论方法捕捉和分析医疗保健体验。
Health Serv Res. 2015 Aug;50(4):1195-210. doi: 10.1111/1475-6773.12275. Epub 2014 Dec 18.
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The relationship between posttraumatic stress and posttraumatic growth among adolescent and young adult (AYA) cancer patients.青少年及青年癌症患者创伤后应激与创伤后成长之间的关系。
Psychooncology. 2015 Feb;24(2):162-8. doi: 10.1002/pon.3585. Epub 2014 Jun 11.

一项定性焦点小组研究,旨在阐明癌症及其治疗对年轻成年人的生活情感和社会影响。

A Qualitative Focus Group Study to Illuminate the Lived Emotional and Social Impacts of Cancer and Its Treatment on Young Adults.

机构信息

Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois.

Robert H. Lurie Comprehensive Cancer Center, Northwestern University, Chicago, Illinois.

出版信息

J Adolesc Young Adult Oncol. 2019 Dec;8(6):649-659. doi: 10.1089/jayao.2019.0028. Epub 2019 Jul 22.

DOI:10.1089/jayao.2019.0028
PMID:31329494
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6919249/
Abstract

Among the many challenges that exist among young adults with cancer, those that intersect psychosocial domains have only begun to be addressed by medical, research, and advocacy communities. While some have attempted to empirically document the psychosocial burden of adolescents and young adults (AYAs), there is a paucity of research exploring this phenomenon from the perspective of AYAs themselves. The purpose of this study is to better understand the lived experiences of young adult cancer survivors and the psychosocial impacts that cancer has had on their lives. We used qualitative focus group methodologies to elicit positive and negative psychosocial impacts of the cancer experience in a young adult cancer sample. We conducted three separate focus groups ( = 16). The average age of participants was 33 and majority were female (75%), Caucasian (50%), and married (44%). The most common cancer diagnoses were breast (38%), colon (13%), and acute myeloid leukemia (13%). Participants reported experiencing multiple emotional and social impacts such as stress, sadness, and fear; identity changes; utilizing different coping strategies; challenges discussing cancer; feeling pressure to be better; feeling abandoned, misunderstood, or invisible; and experiencing role reversals with family members. Participants reported experiencing several emotional and social impacts of cancer on their lives, both negative and positive. Our findings are important for oncology clinical practice and survivorship research activities with young adults, especially given the presence of these impacts over the long term.

摘要

在癌症青年患者面临的诸多挑战中,那些涉及心理社会领域的问题才刚刚开始受到医学、研究和倡导界的关注。尽管有人试图从实证角度记录青少年和年轻成年人(AYA)的心理社会负担,但从 AYA 自身角度探讨这一现象的研究却很少。本研究旨在更好地了解年轻癌症幸存者的生活经历,以及癌症对他们生活产生的心理社会影响。我们采用定性焦点小组方法,在年轻癌症患者样本中了解癌症经历的积极和消极心理社会影响。我们进行了三次单独的焦点小组讨论( = 16)。参与者的平均年龄为 33 岁,大多数为女性(75%)、白种人(50%)和已婚(44%)。最常见的癌症诊断是乳腺癌(38%)、结肠癌(13%)和急性髓细胞性白血病(13%)。参与者报告经历了多种情绪和社会影响,如压力、悲伤和恐惧;身份变化;使用不同的应对策略;讨论癌症的挑战;感到有压力要做得更好;感到被抛弃、被误解或被忽视;以及与家庭成员的角色反转。参与者报告了癌症对他们生活产生的多种积极和消极的情绪和社会影响。我们的研究结果对肿瘤临床实践和年轻成年人的生存研究活动很重要,尤其是考虑到这些影响会长期存在。