Research Institute in Oncology and Hematology, CancerCare Manitoba, Winnipeg, MB, Canada.
Department of Internal Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
J Med Internet Res. 2020 Oct 29;22(10):e20510. doi: 10.2196/20510.
Information has been identified as a commonly unmet supportive care need for those living with cancer (ie, patients and their friends and family). The information needed to help individuals plan their lives around the consequences of cancer, such as the receipt of health care, is an example of an important informational need. A suitable theory to guide the development of interventions designed to meet this informational need has not been identified by the authors.
The aim of this study is to generate a grounded theory capable of guiding the development of interventions designed to assist those living with cancer in meeting their informational needs.
Classic grounded theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 patients with cancer and 29 friends and family members. These interviews focused on how the participants had accessed and used information to plan their lives and what barriers they faced in obtaining and using this information.
The theory that emerged consisted of 4 variables: personal projects, cancer as a source of disruption to personal projects, information as the process of accessing and interpreting cancer-related data (CRD) to inform action, and CRD quality as defined by accessibility, credibility, applicability, and framing. CRD quality as a moderator of personal project disruption by cancer is the core concept of this theory.
Informational resources providing accessible, credible, applicable, and positively framed CRD are likely key to meeting the information needs of those affected by cancer. Web-based informational resources delivering high-quality CRD focused on assisting individuals living with cancer in maintaining and planning their personal projects are predicted to improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice.
信息被认为是癌症患者（即患者及其朋友和家人）普遍未满足的支持性护理需求之一。帮助个人规划与癌症相关后果（例如接受医疗保健）的生活所需的信息是重要信息需求的一个例子。作者尚未确定合适的理论来指导旨在满足这种信息需求的干预措施的开发。
本研究旨在生成一个扎根理论，能够指导旨在帮助癌症患者满足其信息需求的干预措施的开发。
经典扎根理论用于分析通过与 31 名癌症患者和 29 名朋友和家属的一对一数字录音音频访谈收集的数据。这些访谈重点关注参与者如何获取和使用信息来规划他们的生活，以及他们在获取和使用这些信息时面临的障碍。
出现的理论包括 4 个变量：个人项目、癌症对个人项目的破坏、信息作为获取和解释与癌症相关数据（CRD）以告知行动的过程，以及 CRD 质量由可访问性、可信度、适用性和框架定义。CRD 质量作为癌症对个人项目破坏的调节剂是该理论的核心概念。
提供易于访问、可信、适用和积极框架的信息资源很可能是满足癌症患者信息需求的关键。提供侧重于帮助癌症患者维持和规划个人项目的高质量 CRD 的基于网络的信息资源有望提高生活质量。需要研究开发并将基于这一理论框架的资源整合到临床实践中。
