LaRosa Kayla N, Stern Marilyn, Bleck Jennifer, Lynn Courtney, Hudson Janella, Reed Damon R, Quinn Gwendolyn P, Donovan Kristine A
1 Department of Educational and Psychology Studies, University of South Florida , Tampa, Florida.
2 Department of Child and Family Studies, University of South Florida , Tampa, Florida.
J Adolesc Young Adult Oncol. 2017 Dec;6(4):512-518. doi: 10.1089/jayao.2017.0012. Epub 2017 May 24.
Adolescent and young adults with cancer (AYACs) face unique medical, psychosocial, and supportive care needs. The purpose of this study was to identify AYACs perceptions and expectations of cancer care services on and off treatment.
Semistructured interviews were conducted with 23 AYACs aged 19-38 years (13 on and 10 off treatment), who were receiving care at a comprehensive cancer center. Verbatim transcripts were created from audiotaped interviews and hand coded using inductive content analysis methodology.
Perceptions of optimal care were reported by AYACs through two main themes as follows: perceived barriers and facilitators during treatment. Within each main theme were three subthemes, including perceived facilitators reported as the provision of social support, the website and patient portal, and the educational information provided by the cancer center. Younger female AYACs (age 19-31) on active treatment reported perceived barriers to optimal care related to the management of physical and mental health symptoms, while older patients (age 32 and up) on active treatment endorsed a fear of cancer returning. The third perceived barrier equally endorsed by patients both on and off treatment and across age ranges included limited assistance with financial issues.
AYACs reported perceived barriers and facilitators to optimal care. Implications for these findings are discussed in the context of the importance of adding a patient navigator to the AYACs care team.
青少年及年轻癌症患者（AYACs）面临独特的医疗、心理社会和支持性护理需求。本研究的目的是确定AYACs对癌症护理服务在治疗期间和治疗后的认知与期望。
对23名年龄在19 - 38岁的AYACs进行了半结构化访谈（13名正在接受治疗，10名已结束治疗），他们在一家综合癌症中心接受护理。根据录音访谈创建逐字记录，并使用归纳性内容分析方法进行手工编码。
AYACs通过两个主要主题报告了对最佳护理的认知，如下所示：治疗期间的感知障碍和促进因素。每个主要主题下又有三个子主题，其中感知促进因素包括社会支持的提供、网站和患者门户，以及癌症中心提供的教育信息。正在接受治疗的年轻女性AYACs（年龄19 - 31岁）报告了与身心健康症状管理相关的最佳护理感知障碍，而正在接受治疗的老年患者（年龄32岁及以上）则认可对癌症复发的恐惧。在接受治疗和未接受治疗的患者以及不同年龄范围内均同样认可的第三个感知障碍包括财务问题方面的援助有限。
AYACs报告了最佳护理的感知障碍和促进因素。在AYACs护理团队中增加患者导航员的重要性背景下讨论了这些发现的意义。
