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

Abstract：

BACKGROUND: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. OBJECTIVE: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. 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. RESULTS: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. CONCLUSIONS: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.

journal_name

J Med Internet Res

journal_title

Journal of medical Internet research

authors

Thiessen M,Sinclair S,Tang PA,Raffin Bouchal S

doi

10.2196/20510

subject

Has Abstract

pub_date

2020-10-29 00:00:00

pages

e20510

issue

eissn

1439-4456

issn

1438-8871

pii

v22i10e20510

journal_volume

pub_type

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