Information Access and Use by Patients With Cancer and Their Friends and Family: Development of a Grounded Theory (Preprint)

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.