Wong Alex W K, Chang Ting-Ting, Christopher Katrina, Lau Stephen C L, Beaupin Lynda K, Love Brad, Lipsey Kim L, Feuerstein Michael
Program in Occupational Therapy and Department of Neurology, Washington University School of Medicine, 4444 Forest Park Ave, Campus Box 8505, St. Louis, MO, 63108, USA.
Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO, USA.
J Cancer Surviv. 2017 Dec;11(6):751-764. doi: 10.1007/s11764-017-0613-4. Epub 2017 Mar 29.
Categorization of the needs of AYA cancer survivors is primarily based on quantitative analyses of epidemiological and observational research. The present study classified the phenomenological experiences of AYA survivors based on their own language.
A systematic approach for selecting qualitative studies of unmet needs in AYA cancer survivors was used. Following selection based on quality, survivor statements were entered verbatim and thematic analysis was conducted using NVivo qualitative research software.
A total of 1993 AYA cancer survivors (post-treatment) were included in 58 studies (78% individual interviews). Mean age was 27.6 with an average of 8.6 years post-primary treatment. The organizational framework reported in this study was based on a heterogeneous group of cancer types. Thirteen themes including symptoms, function, reproductive health, emotional well-being, health management, health care system, social interaction, romantic relationships, cancer disclosure, normalcy, career development and employment, and school and fiscal concerns were identified. Forty-eight subthemes were also identified covering such areas as fertility, integrative health services, advice for cancer disclosure, family interaction, and insurance challenges.
Direct analysis of text identified many common unmet needs similarly reported in the quantitative literature. The phenomenological data also provided a breakdown of unmet needs into subthemes or elements of unmet needs.
This information can help form the basis for a personalized, valid, and reliable evaluation tool of the range of unmet needs in AYA survivors.
青少年和青年癌症幸存者的需求分类主要基于流行病学和观察性研究的定量分析。本研究根据青少年和青年幸存者自己的语言对其现象学体验进行分类。
采用一种系统的方法来选择关于青少年和青年癌症幸存者未满足需求的定性研究。在根据质量进行筛选之后，逐字录入幸存者的陈述，并使用NVivo定性研究软件进行主题分析。
58项研究（78%为个人访谈）纳入了总共1993名青少年和青年癌症幸存者（治疗后）。平均年龄为27.6岁，初次治疗后平均8.6年。本研究报告的组织框架基于一组异质性癌症类型。确定了13个主题，包括症状、功能、生殖健康、情绪健康、健康管理、医疗保健系统、社交互动、恋爱关系、癌症披露、正常状态、职业发展与就业以及学校和财务问题。还确定了48个子主题，涵盖生育、综合健康服务、癌症披露建议、家庭互动和保险挑战等领域。
对文本的直接分析发现了许多在定量文献中同样报道的常见未满足需求。现象学数据还将未满足需求细分为子主题或未满足需求的要素。
这些信息有助于为青少年和青年幸存者未满足需求范围的个性化、有效且可靠的评估工具奠定基础。
