The researchers’ role in re-constructing patient narratives to present them as patient experiences

Author(s):  
Janka Koschack ◽  
Wolfgang Himmel

According to Arthur W. Frank, illness is a call for stories. It is widely accepted that a narrative approach in medicine improves health care outcomes and there is some evidence that listening to illness stories of others has a positive effect also on fellow patients. However, when researchers collect patient narratives and prepare them to be used by, and to help, patients or other sufferers, they may change the nature of the narratives. This chapter shows how illness narratives are arranged on DIPEx websites as short statements and summarized under certain topics—with the aim to represent the whole range of patient experiences. It then discusses why people may listen to patient experiences, for example, to make informed choices on the basis of evidence-based experiential information, and/or to use experiences of others as ‘companion stories’ to complete their own illness narrative and to give it a ‘gestalt’.

2017 ◽  
Vol 35 (2) ◽  
pp. 155-166 ◽  
Author(s):  
Howard J. Osofsky ◽  
Carl F. Weems ◽  
Tonya Cross Hansel ◽  
Anthony H. Speier ◽  
Joy D. Osofsky ◽  
...  

Author(s):  
Richard Gordon ◽  
Jeremy Grimshaw ◽  
Martin Eccles ◽  
Rachel Rowe ◽  
Jeremy Wyatt

2021 ◽  
pp. 1357633X2098405
Author(s):  
Rachel Crawford ◽  
Ciara Hughes ◽  
Sonyia McFadden ◽  
Jacqui Crawford

Objectives This review aimed to present the clinical and health-care outcomes for patients with congenital heart disease (CHD) who use home monitoring technologies. Methods Five databases were systematically searched from inception to November 2020 for quantitative studies in this area. Data were extracted using a pre-formatted data-collection table which included information on participants, interventions, outcome measures and results. Risk of bias was determined using the Cochrane Risk of Bias 2 tool for randomised controlled trials (RCTs), the Newcastle–Ottawa Quality Assessment Scale for cohort studies and the Institute of Health Economics quality appraisal checklist for case-series studies. Data synthesis: Twenty-two studies were included in this systematic review, which included four RCTs, 12 cohort studies and six case-series studies. Seventeen studies reported on mortality rates, with 59% reporting that home monitoring programmes were associated with either a significant reduction or trend for lower mortality and 12% reporting that mortality trended higher. Fourteen studies reported on unplanned readmissions/health-care resource use, with 29% of studies reporting that this outcome was significantly decreased or trended lower with home monitoring and 21% reported an increase. Impact on treatment was reported in 15 studies, with 67% of studies finding that either treatment was undertaken significantly earlier or significantly more interventions were undertaken in the home monitoring groups. Conclusion The use of home monitoring programmes may be beneficial in reducing mortality, enabling earlier and more timely detection and treatment of CHD complication. However, currently, this evidence is limited due to weakness in study designs.


2015 ◽  
Vol 23 (3) ◽  
pp. 485-498
Author(s):  
Martha R. Sleutel ◽  
Celestina Barbosa-Leiker ◽  
Marian Wilson

Background and Purpose: Evidence-based practice (EBP) is essential to optimal health care outcomes. Interventions to improve use of evidence depend on accurate assessments from reliable, valid, and user-friendly tools. This study reports psychometric analyses from a modified version of a widely used EBP questionnaire, the information literacy for nursing practice (ILNP). Methods: After content validity assessments by nurse researchers, a convenience sam ple of 2,439 nurses completed the revised 23-item questionnaire. We examined internal consistency and used factor analyses to assess the factor structure. Results: A modified 4-factor model demonstrated adequate fit to the data. Cronbach’s alpha was .80–.92 for the subscales. Conclusions: The shortened ILNP (renamed Healthcare EBP Assessment Tool or HEAT) demonstrated adequate content validity, construct validity, and reliability.


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