Literature DB >> 27067064

Using others' experiences. Cancer patients' expectations and navigation of a website providing narratives on prostate, breast and colorectal cancer.

Jennifer Engler1, Sandra Adami2, Yvonne Adam3, Bettina Keller3, Tim Repke3, Hella Fügemann3, Gabriele Lucius-Hoene2, Jacqueline Müller-Nordhorn3, Christine Holmberg3.   

Abstract

OBJECTIVE: To understand what cancer patients expect and may learn from other patients' experiences, as analyzed and sorted for presentation on a website called krankheitserfahrungen.de (meaning "illness experiences").
METHODS: Mixed methods approach including log file analyses, survey data analyses and thematic analysis of focus group discussions.
RESULTS: Users highly valued the wide range of patient experiences presented. The academic leadership of krankheitserfahrungen.de made them trust the information quality. Reading, watching and listening to other cancer patients' experiences gave users a feeling of hope and confidence. Searching for persons with similar experiences was a major way of navigating the website.
CONCLUSION: Patient narratives as presented on krankheitserfahrungen.de provide a helpful resource, supporting cancer patients' engagement with their disease. Having access to such research-informed accounts of everyday cancer experiences was seen as a great contribution to existing available patient information. PRACTICE IMPLICATIONS: When health information websites include experiences, they should adhere to quality standards of qualitative research and encompass a wide range, so that users are able to find patients similar to themselves. Filter options are a helpful tool. A mix of written text and videos is beneficial, as users have different preferences. The inclusion of patient photographs and video interviews facilitates authenticity and closeness.
Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Entities:  

Keywords:  Cancer; Coping; Health information; Illness experiences; Patient narratives

Mesh:

Year:  2016        PMID: 27067064     DOI: 10.1016/j.pec.2016.03.015

Source DB:  PubMed          Journal:  Patient Educ Couns        ISSN: 0738-3991


  9 in total

1.  Experiencing Cancer. An Ethnographic Study on Illness and Disease.

Authors:  Christine Holmberg
Journal:  Recent Results Cancer Res       Date:  2021

2.  Feasibility and Acceptability of an Interactive Cancer-Communication Video Program Using African American Breast Cancer Survivor Stories.

Authors:  Maria Pérez; Matthew W Kreuter; Yan Yan; Tess Thompson; Julianne Sefko; Balaji Golla; Julie A Margenthaler; Graham Colditz; Donna B Jeffe
Journal:  J Health Commun       Date:  2020-10-13

3.  Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study.

Authors:  Anna Sippel; Jutta Scheiderbauer; Désirée Eklund; Sigrid Arnade; Stephan Schmidt; Ingo Kleiter; Rebecca Morrison; Christopher Kofahl; Christoph Heesen
Journal:  BMC Neurol       Date:  2022-04-20       Impact factor: 2.903

4.  Effect of a Website That Presents Patients' Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial.

Authors:  Jürgen M Giesler; Bettina Keller; Tim Repke; Rainer Leonhart; Joachim Weis; Rebecca Muckelbauer; Nina Rieckmann; Jacqueline Müller-Nordhorn; Gabriele Lucius-Hoene; Christine Holmberg
Journal:  J Med Internet Res       Date:  2017-10-13       Impact factor: 5.428

5.  Understanding the role of health information in patients' experiences: secondary analysis of qualitative narrative interviews with people diagnosed with cancer in Germany.

Authors:  Susanne Blödt; Maleen Kaiser; Yvonne Adam; Sandra Adami; Martin Schultze; Jacqueline Müller-Nordhorn; Christine Holmberg
Journal:  BMJ Open       Date:  2018-03-12       Impact factor: 2.692

6.  Impact of a multimedia website with patient experiences of multiple sclerosis (PExMS) on immunotherapy decision-making: study protocol for a pilot randomised controlled trial in a mixed-methods design.

Authors:  Anna Barabasch; Karin Riemann-Lorenz; Christopher Kofahl; Jutta Scheiderbauer; Desiree Eklund; Ingo Kleiter; Jürgen Kasper; Sascha Köpke; Susanne Lezius; Antonia Zapf; Anne Christin Rahn; Christoph Heesen
Journal:  Pilot Feasibility Stud       Date:  2021-01-07

Review 7.  The Role of Recipient Characteristics in Health Video Communication Outcomes: Scoping Review.

Authors:  Daniel Adrian Lungu; Jo Røislien; Siri Wiig; Marie Therese Shortt; Francesca Ferrè; Siv Hilde Berg; Henriette Thune; Kolbjørn Kallesten Brønnick
Journal:  J Med Internet Res       Date:  2021-12-30       Impact factor: 5.428

8.  Validation of the German eHealth impact questionnaire for online health information users affected by multiple sclerosis.

Authors:  Anna Sippel; Karin Riemann-Lorenz; Jana Pöttgen; Renate Wiedemann; Karin Drixler; Eva Maria Bitzer; Christine Holmberg; Susanne Lezius; Christoph Heesen
Journal:  BMC Med Inform Decis Mak       Date:  2022-08-16       Impact factor: 3.298

9.  The experience of patients with cancer on narrative practice: A systematic review and meta-synthesis.

Authors:  Yan Yang; Jiehui Xu; Yihui Hu; Jiale Hu; Anli Jiang
Journal:  Health Expect       Date:  2020-01-16       Impact factor: 3.377

  9 in total

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