1889P Information access and use: A Grounded theory of how patients and their friends and family use information to navigate the cancer journey

Abstract

Information needs are among the most common unmet supportive care need for cancer patients and their informal caregivers. Previous work has identified that, in addition to information that supports coping and shared decision making, there is a need for practical information that helps individuals plan their lives around key aspects of the cancer journey such as the receipt of healthcare and altered life expectancy. The objective of this study was to develop a theory to inform the development of novel informational interventions capable of addressing this need. Classical Grounded Theory, a rigorous and systematic qualitative method for theory generation, was used to analyze data collected through digitally recorded one-on-one interviews with cancer patients and their friends/family. Interviews focused on the challenges that the participants had following the cancer diagnosis and how information was obtained and used. Data analysis began as soon as interview data from the first interview was available and continued until theoritical saturation was achieved. Coding, constant comparison, memoing and theoritical sampling were integral to the data analysis process. Data collection and analysis concluded when theoritical saturation was achieved. A total of 60 participants were interviewed (31 cancer patients and 29 friends/family). The core category that emerged was Cancer Related Data (CRD) quality as a modifier of the disruption to personal projects resulting from cancer. 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 and using CRD; 4) accessibility, credibility, applicability, and framing as key components of CRD quality. Informational resources containing high quality CRD are key to limiting the disruptive effects of cancer on the lives of patients and their friends and family. The internet is a highly accessible platform for CRD delivery. Future work should involve developing internet based resources integrated into clinical care that contain high quality CRD designed to help individuals plan their lives around the consequences of cancer.