Abstract
BackgroundInformation 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.ObjectiveThe 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.MethodsClassic 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.ResultsThe 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.ConclusionsInformational 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.
Highlights
BackgroundOne of the most commonly reported unmet supportive care needs of those facing cancer, including patients [1,2,3,4] and their friends and family [5,6,7], is for information
There was a mix of patients who were being treated with curative intent, as well as those being treated noncuratively for de novo or recurrent metastatic disease, suggesting a wide range of cancer experiences
The primary finding, or core variable [51], was that the quality of cancer-related data (CRD) that patients and their friends and family received impacted their ability to plan their lives around the consequences of the malignancy diagnosis
Summary
BackgroundOne of the most commonly reported unmet supportive care needs of those facing cancer, including patients [1,2,3,4] and their friends and family [5,6,7], is for information. One conclusion from this study was that to support individuals affected by cancer, information is needed that supports them in planning the activities necessary for maintaining participation in the relationships and projects they established before diagnosis—such as those with family, friends, and their work—both in the short and long term. Methods: 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. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice
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