Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Jun 1, 2020
Date Accepted: Sep 17, 2020
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
A Theory of Information Access and Use of Those Living With Cancer: A Grounded Theory Study Using Data Collected From Semi-Structured Interviews Involving Cancer Patients and Their Friends and Family
ABSTRACT
Background:
Information has been identified as one of the most commonly unmet supportive care need for those living with cancer (i.e. 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 healthcare, has been identified as a unique area of need. A theory to guide the development of interventions designed to meet this informational need has not been identified by the authors.
Objective:
The purpose of this study was to generate a grounded theory capable of guiding the development of informational interventions to assist those living with cancer in planning their lives.
Methods:
Classical Grounded Theory was used to analyze data collected through digitally recorded one-on-one audio interviews with 31 cancer patients and 29 friends/family members. These interviews focused on how the participants had accessed and used cancer information to plan their lives, and what barriers existed to obtaining and using this information.
Results:
The theory that emerged consisted of four variables: 1) personal projects, 2) cancer as a source of disruption to personal projects, 3) information as the process of accessing cancer related data (CRD) and interpreting it to inform action, and 4) CRD quality as defined by accessibility, credibility, applicability, and framing. The central category that emerged was CRD quality as a moderator of personal project disruption by cancer.
Conclusions:
Informational resources that contain CRD that is accessible, credible, applicable and positively framed are essential 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 will improve quality of life. Research is needed to develop and integrate resources informed by this theoretical framework into clinical practice.
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.