Patientengeschichten – Literatur

Adams, Mary, Glenn Robert, and Jill Maben. “Exploring the Legacies of Filmed Patient Narratives: The Interpretation and Appropriation of Patient Films by Health Care Staff.” Qualitative Health Research 25, no. 9 (September 2015): 1241–50. https://doi.org/10.1177/1049732314566329.

Bekker, Hilary L., Anna E. Winterbottom, Phyllis Butow, Amanda J. Dillard, Deb Feldman-Stewart, Floyd J. Fowler, Maria L. Jibaja-Weiss, Victoria A. Shaffer, and Robert J. Volk. “Do Personal Stories Make Patient Decision Aids More Effective? A Critical Review of Theory and Evidence.” BMC Medical Informatics and Decision Making 13 Suppl 2 (2013): S9. https://doi.org/10.1186/1472-6947-13-S2-S9.

Betsch, Cornelia, Corina Ulshöfer, Frank Renkewitz, and Tilmann Betsch. “The Influence of Narrative v. Statistical Information on Perceiving Vaccination Risks.” Medical Decision Making: An International Journal of the Society for Medical Decision Making 31, no. 5 (October 2011): 742–53. https://doi.org/10.1177/0272989X11400419.

Betsch, Cornelia, Frank Renkewitz, and Niels Haase. “Effect of Narrative Reports about Vaccine Adverse Events and Bias-Awareness Disclaimers on Vaccine Decisions: A Simulation of an Online Patient Social Network.” Medical Decision Making: An International Journal of the Society for Medical Decision Making 33, no. 1 (2013): 14–25. https://doi.org/10.1177/0272989X12452342.

Biglino, Giovanni, Sofie Layton, Lindsay-Kay Leaver, and Jo Wray. “Fortune Favours the Brave: Composite First-Person Narrative of Adolescents with Congenital Heart Disease.” BMJ Paediatrics Open 1, no. 1 (2017): e000186. https://doi.org/10.1136/bmjpo-2017-000186.

Blödt, Susanne, Maleen Kaiser, Yvonne Adam, Sandra Adami, Martin Schultze, Jacqueline Müller-Nordhorn, and Christine Holmberg. “Understanding the Role of Health Information in Patients’ Experiences: Secondary Analysis of Qualitative Narrative Interviews with People Diagnosed with Cancer in Germany.” BMJ Open 8, no. 3 (12 2018): e019576. https://doi.org/10.1136/bmjopen-2017-019576.

Boeijinga, Anniek, Hans Hoeken, and José Sanders. “Storybridging: Four Steps for Constructing Effective Health Narratives.” Health Education Journal 76, no. 8 (December 2017): 923–35. https://doi.org/10.1177/0017896917725360.

Bol, Nadine, Julia C. M. van Weert, Hanneke C. J. M. de Haes, Eugene F. Loos, and Ellen M. A. Smets. “The Effect of Modality and Narration Style on Recall of Online Health Information: Results from a Web-Based Experiment.” Journal of Medical Internet Research 17, no. 4 (April 24, 2015): e104. https://doi.org/10.2196/jmir.4164.

Borghi, Lidia, Sara Galimberti, Claudia Baratè, Massimiliano Bonifacio, Enrico Capochiani, Antonio Cuneo, Franca Falzetti, et al. "Chronic Myeloid Leukemia Patient's Voice About the Experience of Treatment-Free Remission Failure: Results From the Italian Sub-Study of ENESTPath Exploring the Emotional Experience of Patients During Different Phases of a Clinical Trial." Frontiers in Psychology 10 (February 20, 2019). https://doi.org/10.3389/fpsyg.2019.00329.

Boyd, Kerry, Heidi Diepstra, Kareem Elbard, Yani Hamdani, and Yona Lunsky. "Consumer inclusion: Experience of patients with intellectual and developmental disabilities informs primary care." Canadian Family Physician Medecin De Famille Canadien 64, no. Suppl 2 (2018): S8–11.

Boyer, C., M. Selby, J. R. Scherrer, and R. D. Appel. “The Health On the Net Code of Conduct for Medical and Health Websites.” Computers in Biology and Medicine 28, no. 5 (September 1998): 603–10. https://doi.org/10.1016/s0010-4825(98)00037-7.

Breuning, Martina, Gabriele Lucius-Hoene, Christina Burbaum, Wolfgang Himmel, and Jürgen Bengel. "Subjektive Krankheitserfahrungen und Patientenorientierung." Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz 60, no. 4 (April 1, 2017): 453–61.

Breuning, Martina, Lisa Schäfer-Fauth, Gabriele Lucius-Hoene, and Christine Holmberg. “Connecting One’s Own Illness Story to the Illness Experiences of Others on a Website-An Evaluation Study Using the Think Aloud Method.” Patient Education and Counseling 103, no. 1 (January 2020): 199–207. https://doi.org/10.1016/j.pec.2019.08.014.

Charnock, D., S. Shepperd, G. Needham, and R. Gann. “DISCERN: An Instrument for Judging the Quality of Written Consumer Health Information on Treatment Choices.” Journal of Epidemiology and Community Health 53, no. 2 (February 1999): 105–11. https://doi.org/10.1136/jech.53.2.105.

Charon, R. “The Patient-Physician Relationship. Narrative Medicine: A Model for Empathy, Reflection, Profession, and Trust.” JAMA 286, no. 15 (October 17, 2001): 1897–1902. https://doi.org/10.1001/jama.286.15.1897.

Charon, Rita. “At the Membranes of Care:  Stories in Narrative Medicine.” Academic Medicine: Journal of the Association of American Medical Colleges 87, no. 3 (March 2012): 342–47. https://doi.org/10.1097/ACM.0b013e3182446fbb.

Clarke, Christopher E., Jeff Niederdeppe, and Helen C. Lundell. “Narratives and Images Used by Public Communication Campaigns Addressing Social Determinants of Health and Health Disparities.” International Journal of Environmental Research and Public Health 9, no. 12 (December 2012): 4254–77. https://doi.org/10.3390/ijerph9124254.

Coulter, Angela, Louise Locock, Sue Ziebland, and Joe Calabrese. “Collecting Data on Patient Experience Is Not Enough: They Must Be Used to Improve Care.” BMJ (Clinical Research Ed.) 348 (March 26, 2014): g2225. https://doi.org/10.1136/bmj.g2225.

De Martino, Ivan, Rocco D’Apolito, Alexander S. McLawhorn, Keith A. Fehring, Peter K. Sculco, and Giorgio Gasparini. “Social Media for Patients: Benefits and Drawbacks.” Current Reviews in Musculoskeletal Medicine 10, no. 1 (March 2017): 141–45. https://doi.org/10.1007/s12178-017-9394-7.

Quattro, Leah de. "Co-producing childbirth knowledge: a qualitative study of birth stories in antenatal sessions." BMC Pregnancy and Childbirth 19 (November 26, 2019). https://doi.org/10.1186/s12884-019-2605-z.

Devine, Alexandra, Cathy Vaughan, Anne Kavanagh, Helen Dickinson, Sean Byars, Stefanie Dimov, Bill Gye, and Lisa Brophy. “‘I’m Proud of How Far I’ve Come. I’m Just Ready to Work’: Mental Health Recovery Narratives within the Context of Australia’s Disability Employment Services.” BMC Public Health 20, no. 1 (March 12, 2020): 325. https://doi.org/10.1186/s12889-020-8452-z.

Donner-Banzhoff, Norbert. "Mechanistische Narrative als Mittel der Dissemination: das Beispiel koronarer Technologien." Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz 63, no. 5 (May 1, 2020): 521–26.

Drewniak, Daniel, Andrea Glässel, Martina Hodel, and Nikola Biller-Andorno. “Risks and Benefits of Web-Based Patient Narratives: Systematic Review.” Journal of Medical Internet Research 22, no. 3 (March 26, 2020): e15772. https://doi.org/10.2196/15772.

Engler, Jennifer, Sandra Adami, Yvonne Adam, Bettina Keller, Tim Repke, Hella Fügemann, Gabriele Lucius-Hoene, Jacqueline Müller-Nordhorn, and Christine Holmberg. “Using Others’ Experiences. Cancer Patients’ Expectations and Navigation of a Website Providing Narratives on Prostate, Breast and Colorectal Cancer.” Patient Education and Counseling 99, no. 8 (2016): 1325–32. https://doi.org/10.1016/j.pec.2016.03.015.

Entwistle, Vikki Ann, Emma F. France, Sally Wyke, Ruth Jepson, Kate Hunt, Sue Ziebland, and Andrew Thompson. “How Information about Other People’s Personal Experiences Can Help with Healthcare Decision-Making: A Qualitative Study.” Patient Education and Counseling 85, no. 3 (December 2011): e291-298. https://doi.org/10.1016/j.pec.2011.05.014.

Evans, D. Gareth, Julian Barwell, Diana M. Eccles, Amanda Collins, Louise Izatt, Chris Jacobs, Alan Donaldson, et al. “The Angelina Jolie Effect: How High Celebrity Profile Can Have a Major Impact on Provision of Cancer Related Services.” Breast Cancer Research: BCR 16, no. 5 (September 19, 2014): 442. https://doi.org/10.1186/s13058-014-0442-6.

Fadlallah, Racha, Fadi El-Jardali, Mohamed Nomier, Nour Hemadi, Khurram Arif, Etienne V. Langlois, and Elie A. Akl. “Using Narratives to Impact Health Policy-Making: A Systematic Review.” Health Research Policy and Systems 17, no. 1 (March 5, 2019): 26. https://doi.org/10.1186/s12961-019-0423-4.

Farmasi, Lilla, Attila Kiss, and István Szendi. "The Narrative Facilitation of Recovery. The Application of Narrative Theories in a Group Therapy for Patients with Schizophrenia." DIEGESIS 7, no. 1 (June 6, 2018).

Field, Kate, Suman Prinjha, and Kathy Rowan. "'One patient amongst many': a qualitative analysis of intensive care unit patients' experiences of transferring to the general ward." Critical Care 12, no. 1 (2008): R21. https://doi.org/10.1186/cc6795.

Finucane, Elaine. "Personal experiences or anecdotes (stories) are an unreliable basis for assessing the effects of most treatments." Evidently Cochrane, September 25, 2020.

Fioretti, Chiara, Ketti Mazzocco, Silvia Riva, Serena Oliveri, Marianna Masiero, and Gabriella Pravettoni. “Research Studies on Patients’ Illness Experience Using the Narrative Medicine Approach: A Systematic Review.” BMJ Open 6, no. 7 (14 2016): e011220. https://doi.org/10.1136/bmjopen-2016-011220.

Gidman, Janice. “Listening to Stories: Valuing Knowledge from Patient Experience.” Nurse Education in Practice 13, no. 3 (May 2013): 192–96. https://doi.org/10.1016/j.nepr.2012.09.006.

Giesler, Jürgen M., Bettina Keller, Tim Repke, Rainer Leonhart, Joachim Weis, Rebecca Muckelbauer, Nina Rieckmann, Jacqueline Müller-Nordhorn, Gabriele Lucius-Hoene, and Christine Holmberg. “Effect of a Website That Presents Patients’ Experiences on Self-Efficacy and Patient Competence of Colorectal Cancer Patients: Web-Based Randomized Controlled Trial.” Journal of Medical Internet Research 19, no. 10 (13 2017): e334. https://doi.org/10.2196/jmir.7639.

Glenton, Claire, Elin S. Nilsen, and Benedicte Carlsen. “Lay Perceptions of Evidence-Based Information--a Qualitative Evaluation of a Website for Back Pain Sufferers.” BMC Health Services Research 6 (March 15, 2006): 34. https://doi.org/10.1186/1472-6963-6-34.

Greenhalgh, T. Cultural contexts of health: the use of narrative research in the health sector. World Health Organization. Regional Office for Europe, 2016.

Greenhalgh, Trisha, and Brian Hurwitz. "Why study narrative?" BMJ : British Medical Journal 318, no. 7175 (January 2, 1999): 48–50.

Greenhalgh, Trisha, and Tom Wengraf. “Collecting Stories: Is It Research? Is It Good Research? Preliminary Guidance Based on a Delphi Study.” Medical Education 42, no. 3 (March 2008): 242–47. https://doi.org/10.1111/j.1365-2923.2007.02956.x.

Greenhalgh, Trisha, Rosamund Snow, Sara Ryan, Sian Rees, and Helen Salisbury. “Six ‘biases’ against Patients and Carers in Evidence-Based Medicine.” BMC Medicine 13 (September 1, 2015): 200. https://doi.org/10.1186/s12916-015-0437-x.

Grob, Rachel, Mark Schlesinger, Lacey Rose Barre, Naomi Bardach, Tara Lagu, Dale Shaller, Andrew M. Parker, et al. “What Words Convey: The Potential for Patient Narratives to Inform Quality Improvement.” The Milbank Quarterly 97, no. 1 (2019): 176–227. https://doi.org/10.1111/1468-0009.12374.

Grob, Rachel, Mark Schlesinger, Andrew M. Parker, Dale Shaller, Lacey Rose Barre, Steven C. Martino, Melissa L. Finucane, Lise Rybowski, and Jennifer L. Cerully. “Breaking Narrative Ground: Innovative Methods for Rigorously Eliciting and Assessing Patient Narratives.” Health Services Research 51 Suppl 2 (2016): 1248–72. https://doi.org/10.1111/1475-6773.12503.

Hawker, Sheila, Sheila Payne, Christine Kerr, Michael Hardey, and Jackie Powell. “Appraising the Evidence: Reviewing Disparate Data Systematically.” Qualitative Health Research 12, no. 9 (November 2002): 1284–99. https://doi.org/10.1177/1049732302238251.

Hawthornthwaite, Lisa, Taylor Roebotham, Lauren Lee, Mim O'Dowda, and Lorelei Lingard. "Three Sides to Every Story: Preparing Patient and Family Storytellers, Facilitators, and Audiences." The Permanente Journal 22 (April 20, 2018). https://doi.org/10.7812/TPP/17-119.

Heimes, S. “Storytelling im Gesundheitsjournalismus: Onlinebefragung von Fachjournalisten über Definition und Anwendung.” Gesundheitswesen (Bundesverband Der Arzte Des Offentlichen Gesundheitsdienstes (Germany)) 78, no. 12 (December 2016): 852–54. https://doi.org/10.1055/s-0042-100623.

Herxheimer, Andrew, and Sue Ziebland. "Das DIPEx-Projekt: Eine systematische Sammlung persönlicher Krankheitserfahrungen." Neurol Rehabil 14, no. 1 (2008): 31–40.

Herxheimer, A., A. McPherson, R. Miller, S. Shepperd, J. Yaphe, and S. Ziebland. “Database of Patients’ Experiences (DIPEx): A Multi-Media Approach to Sharing Experiences and Information.” Lancet (London, England) 355, no. 9214 (April 29, 2000): 1540–43. https://doi.org/10.1016/S0140-6736(00)02174-7.

Iredale, Rachel, Lisa Mundy, and Jennifer Hilgart. “An Online Resource of Digital Stories about Cancer Genetics: Qualitative Study of Patient Preferences and Information Needs.” Journal of Medical Internet Research 13, no. 3 (September 30, 2011): e78. https://doi.org/10.2196/jmir.1735.

Kelly, Laura, Sue Ziebland, and Crispin Jenkinson. “Measuring the Effects of Online Health Information: Scale Validation for the e-Health Impact Questionnaire.” Patient Education and Counseling 98, no. 11 (November 2015): 1418–24. https://doi.org/10.1016/j.pec.2015.06.008.

Khangura, Sara, Carol Bennett, Dawn Stacey, and Annette M. O’Connor. “Personal Stories in Publicly Available Patient Decision Aids.” Patient Education and Counseling 73, no. 3 (December 2008): 456–64. https://doi.org/10.1016/j.pec.2008.07.035.

Kidd, Jo, and Sue Ziebland. “Narratives of Experience of Mental Health and Illness on Healthtalk.Org.” BJPsych Bulletin 40, no. 5 (October 2016): 273–76. https://doi.org/10.1192/pb.bp.115.052217.

Kokanović, Renata, and Jacinthe Flore. "Subjectivity and illness narratives." Subjectivity 10, no. 4 (December 1, 2017): 329–39.