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

2020 ◽  
Author(s):  
Maclean Thiessen ◽  
Shane Sinclair ◽  
Patricia A Tang ◽  
Shelley Raffin Bouchal
Keyword(s):  
Grounded Theory ◽  
Information Needs ◽  
Information Access ◽  
Personal Projects ◽  
Related Data ◽  
Patients With Cancer ◽  
Quality Of Life Research ◽  
Classic Grounded Theory ◽  
Personal Project ◽  
Living With Cancer

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.

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

10.2196/20510 ◽  
2020 ◽  
Vol 22 (10) ◽  
pp. e20510 ◽  
Author(s):  
Maclean Thiessen ◽  
Shane Sinclair ◽  
Patricia A Tang ◽  
Shelley Raffin Bouchal
Keyword(s):  
Grounded Theory ◽  
Information Needs ◽  
Information Access ◽  
Personal Projects ◽  
Related Data ◽  
Patients With Cancer ◽  
Quality Of Life Research ◽  
Classic Grounded Theory ◽  
Personal Project ◽  
Living With Cancer

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.

The dilemma of the direct answer

2020 ◽  
Vol 54 (1) ◽  
pp. 1-12
Author(s):  
Martin Potthast ◽  
Matthias Hagen ◽  
Benno Stein
Keyword(s):  
Paradigm Shift ◽  
Information Needs ◽  
Web Search ◽  
Information Sources ◽  
Information Access ◽  
User Preferences ◽  
Information System Design ◽  
Trade Offs ◽  
Remarkable Progress ◽  
Direct Answer

No Web technology has undergone such an impressive evolution as Web search engines did and still do. Starting with the promise of "Bringing order to the Web" 1 by compiling information sources matching a query, retrieval technology has been evolving to a kind of "oracle machinery", being able to recommend a single source, and even to provide direct answers extracted from that source. Notwithstanding the remarkable progress made and the apparent user preferences for direct answers, this paradigm shift comes at a price which is higher than one might expect at first sight, affecting both users and search engine developers in their own way. We call this tradeoff "the dilemma of the direct answer"; it deserves an analysis which has to go beyond system-oriented aspects but scrutinize the way our society deals with both their information needs and means to information access. The paper in hand contributes to this analysis by putting the evolution of retrieval technology and the expectations at it in the context of information retrieval history. Moreover, we discuss the trade offs in information behavior and information system design that users and developers may face in the future.

Health information needs, sources, and barriers of primary care patients to achieve patient-centered care: A literature review

2016 ◽  
Vol 22 (4) ◽  
pp. 992-1016 ◽  
Author(s):  
Martina A Clarke ◽  
Joi L Moore ◽  
Linsey M Steege ◽  
Richelle J Koopman ◽  
Jeffery L Belden ◽  
...  
Keyword(s):  
Primary Care ◽  
Health Information ◽  
Information Search ◽  
Information Needs ◽  
Information Sources ◽  
Medical Condition ◽  
Information Access ◽  
The Internet ◽  
Common Information ◽  
Primary Care Patients

To synthesize findings from previous studies assessing information needs of primary care patients on the Internet and other information sources in a primary care setting. A systematic review of studies was conducted with a comprehensive search in multiple databases including OVID MEDLINE, CINAHL, and Scopus. The most common information needs among patients were information about an illness or medical condition and treatment methods, while the most common information sources were the Internet and patients’ physicians. Overall, patients tend to prefer the Internet for the ease of access to information, while they trust their physicians more for their clinical expertise and experience. Barriers to information access via the Internet include the following: socio-demographic variables such as age, ethnicity, income, education, and occupation; information search skills; and reliability of health information. Conclusion: Further research is warranted to assess how to create accurate and reliable health information sources for both Internet and non-Internet users.

scholarly journals Managing the unmet psychosocial and information needs of patients with cancer

2010 ◽  
pp. 45 ◽  
Author(s):  
Kathleen Kathleen Abrahamson ◽  
Morgan Durham ◽  
Rebekah Fox
Keyword(s):  
Information Needs ◽  
Patients With Cancer

scholarly journals Cancer and risk of COVID-19 through a general community survey

2020 ◽  
Author(s):  
Karla A Lee ◽  
Weinjie Ma ◽  
Daniel R Sikavi ◽  
Jonathon Wolf ◽  
Claire J Steves ◽  
...  
Keyword(s):  
United Kingdom ◽  
Smartphone Application ◽  
Current Treatment ◽  
Community Survey ◽  
Risk Of Infection ◽  
Patients With Cancer ◽  
Increased Risk ◽  
Background Data ◽  
Living With Cancer ◽  
General Community

Background: Data are limited on the risk of coronavirus disease 2019 (COVID-19) among individuals with cancer and whether cancer-related therapy exacerbates this risk. Methods: We evaluated the risk for coronavirus disease 2019 (COVID-19) among patients living with cancer compared to the general community and whether cancer-related treatments influence this risk. Data were collected from the COVID Symptom Study smartphone application since March 24, 2020 (United Kingdom), March 29 (U.S.), and April 29, 2020 (Sweden) through May 8, 2020. We used multivariate-adjusted odds ratios (aORs) of a positive COVID-19 test as well as predicted COVID-19 infection using a validated symptom model. Results: Among 23,266 participants with cancer and 1,784,293 without cancer, we documented 10,404 reports of a positive COVID-19 test. Compared to participants without cancer, those living with cancer had 62% increased risk of a positive COVID-19 test (95% CI: 1.37-1.91). Among patients with cancer, current treatment with chemotherapy/immunotherapy was associated with a nearly 2.5-fold increased risk of a positive test (aOR: 2.42; 95% CI: 1.81-3.25). The association between cancer and COVID-19+ was stronger among participants >65 years (aOR: 1.93; 95%CI: 1.51-2.46) compared to younger participants (aOR: 1.32; 95%CI: 1.06-1.64; Pinteraction<0.001); and among males (aOR: 1.71; 95%CI: 1.36-2.15) compared to females (aOR: 1.43; 95%CI: 1.14-1.79; Pinteraction=0.02). Conclusions: Individuals with cancer had a significantly increased risk of infection compared to the general community. Those treated with chemotherapy or immunotherapy were particularly at-risk of infection. Trial Registration: ClinicalTrials.gov NCT04331509

scholarly journals How have governments supported citizens stranded abroad due to COVID-19 travel restrictions? A comparative analysis of the financial and health support in eleven countries

2021 ◽  
Author(s):  
Pippa McDermid ◽  
Adam Craig ◽  
Meru Sheel ◽  
Holly Seale
Keyword(s):  
Information Needs ◽  
Design Tool ◽  
Government Support ◽  
Website Design ◽  
Global Public Health ◽  
Related Data ◽  
Related Information ◽  
Travel Restrictions ◽  
Health Support ◽  
Content Accessibility

Abstract Background: In response to the continuing threat of COVID-19, many countries have implemented some form of border restriction. A repercussion of these restrictions has been that some travellers have been stranded abroad unable to return to their country of residence, and in need for government support. Our analysis explores the COVID-19-related information and support options provided by 11 countries to their citizens stranded overseas due to travel restrictions. We also examined the quality (i.e., readability, accessibility, and useability) of the information that was available from selected governments’ web-based resources.Methods: Between June 18 to June 30, 2021, COVID-19-related webpages from 11 countries (Australia, New Zealand, Fiji, Canada, United States of America (USA), United Kingdom (UK), France, Spain, Japan, Singapore, and Thailand) were reviewed and content relating to information and support for citizens stuck overseas analysed. Government assistance-related data from each webpage was extracted and coded for the following themes: travel arrangements, health and wellbeing, finance and accommodation, information needs, and sources. Readability was examined using the Simplified Measure of Gobbledygook (SMOG) and the Flesch Kincaid readability tests; content ‘accessibility’ was measured using the Web Content Accessibility Guidelines (WCAG) Version 2.1; and content ‘usability’ assessed using the usability heuristics for website design tool.Results: Ninety-eight webpages from 34 websites were evaluated. No country assessed covered all themes analysed. Most provided information and some level of support regarding repatriation options; border control and re-entry measures; medical assistance; and traveller registration. Only three countries provided information or support for emergency housing while abroad, and six provided some form of mental health support for their citizens. Our analysis of the quality of COVID-19-related information available on a subset of four countries’ websites found poor readability and multiple accessibility and usability issues.Conclusion: With large variance in the information and services available across the countries analysed, our results highlight gaps, inconsistencies, and potential inequities in support available, and raise issues pertinent to the quality, accessibility, and usability of information. This study will assist policymakers plan and communicate comprehensive support packages for citizens stuck abroad due to the COVID-19 situation and design future efforts to prepare for global public health emergencies.

An Application of the “Amplifying Casual Looping” Model to Manor House Management

2021 ◽  
pp. 103-125
Author(s):  
José Luís Braga ◽  
Marta Dionísio
Keyword(s):  
Grounded Theory ◽  
Causal Model ◽  
Methodological Approach ◽  
Vicious Circle ◽  
Structured Interviews ◽  
Classic Grounded Theory ◽  
Manor House

This chapter attempts to explain the main strategies adopted by the hosts of manor houses when they engage in lodging activities. The present research draws on 53 non-structured interviews made to owners/hosts of housing tourism facilities (HT). The methodological approach used is classic grounded theory (CGT). CGT encompasses a set of strict research procedures leading to concepts which explain what is going on in the HT substantive area. Within this context, the authors reveal a theoretical code, designated as ‘amplifying casual looping', which the authors believe has the merit of effectively conceptualizing the substantive codes generated by us. This causal model broadens in both directions: positive (virtuous circle) and negative (vicious circle).

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