How information about other people's personal experiences can help with healthcare decision-making: A qualitative study
Abstract
Objective To investigate people's views of using 'general facts' and information about other people's 'personal experiences' for health-related decision-making.Methods Sixty-two people, who between them had experience of five different focal health issues, participated in 12 focus groups and 9 interviews. Exploration of uses of the two types of information was supported by discussion of illustrative excerpts.Results There was less discussion of 'general facts'; participants thought it obvious that good decisions required these. Participants reported having used 'personal experiences' information to: recognise decisions that needed consideration; identify options; appraise options and make selections (including by developing and reflecting on their reasoning about possible choices); and support coping strategies. Their inclination to use 'personal experiences' information was apparently moderated by assessments of personal relevance, the motives of information providers and the 'balance' of experiences presented.Conclusion People can use 'personal experiences' information in various ways to support their decision-making, and exercise some discrimination as they do.Practice implications 'Personal experiences' information may help people in a number of ways in relation to decision-making. However, 'personal experiences' information does not replace the need for 'general facts' and care should be taken when it is used in resources for patients.
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Qualitative data suggest that users find personal experiences helpful in reaching decisions, but there are less data available about whether and how such narratives impact emotional or clinical outcomes.
“Qualitative data suggest that users find such “personal experiences” helpful in reaching decisions [55], but there are less data available about whether and how such narratives impact emotional or clinical outcomes [56].”
From Web-Based Interventions for Behavior Change and Self-Management: Potential, Pitfalls, and Progress (2012) · cites this paper as [55]
Cites
Qualitative data analysis for applied policy research
(2002) · Analyzing Qualitative Data · doi:10.4324/9780203413081-14 · Cited by 4,964 · see citing works
Gibbs, G. (2007) · doi:10.4135/9781849208574 · Cited by 4,299 · see citing works
Self, society, and personal choice
(1990) · Choice Reviews Online · doi:10.5860/choice.27-4469 · Cited by 772 · see citing works
How do patients evaluate and make use of online health information?
Sillence, E., Briggs, P., Harris, P. R., & Fishwick, L. (2007) · Social Science & Medicine · doi:10.1016/j.socscimed.2007.01.012 · Cited by 676 · see citing works
Supporting Patient Autonomy: The Importance of Clinician-patient Relationships
Entwistle, V. A., Carter, S. M., Cribb, A., & McCaffery, K. J. (2010) · Journal of General Internal Medicine · doi:10.1007/s11606-010-1292-2 · Cited by 542 · see citing works
Self-citationDoes narrative information bias individual's decision making? A systematic review
Winterbottom, A., Bekker, H., Conner, M. T., & Mooney, A. F. (2008) · Social Science & Medicine · doi:10.1016/j.socscimed.2008.09.037 · Cited by 357 · see citing works
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Entwistle, V. A., & Watt, I. S. (2006) · Patient Education and Counseling · doi:10.1016/j.pec.2006.05.002 · Cited by 316 · see citing works
Self-citationLazar, J. K., Feng, J. H., & Hochheiser, H. (2017) · Elsevier eBooks · doi:10.1016/b978-0-12-805390-4.00011-x · Cited by 221 · see citing works
Dillard, A. J., Fagerlin, A., Cin, S. D., Zikmund‐Fisher, B. J., & Ubel, P. A. (2010) · Social Science & Medicine · doi:10.1016/j.socscimed.2010.02.038 · Cited by 179 · see citing works
The Inclusion of Patient Testimonials in Decision Aids
Ubel, P. A., Jepson, C., & Baron, J. A. (2001) · Medical Decision Making · doi:10.1177/0272989x0102100108 · Cited by 168 · see citing works
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O'Connor, A. M. C., Drake, E. R., Wells, G. A., et al. (2003) · Health Expectations · doi:10.1046/j.1369-6513.2003.00215.x · Cited by 152 · see citing works
Wise, M. E., Han, J. Y., Shaw, B. R., Mctavish, F. M., & Gustafson, D. H. (2008) · Patient Education and Counseling · doi:10.1016/j.pec.2007.11.009 · Cited by 94 · see citing works
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Munro, S. B., Kornelsen, J., & Hutton, E. K. (2009) · Journal of Midwifery & Women s Health · doi:10.1016/j.jmwh.2008.12.014 · Cited by 89 · see citing works
Bekker, H. (2010) · Patient Education and Counseling · doi:10.1016/j.pec.2010.01.002 · Cited by 89 · see citing works
Ziébland, S., & Herxheimer, A. (2008) · Journal of Nursing Management · doi:10.1111/j.1365-2834.2008.00863.x · Cited by 86 · see citing works
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Habermas, T., & Diel, V. (2010) · Emotion · doi:10.1037/a0018001 · Cited by 59 · see citing works
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Self-citationFrance, E. F., Wyke, S., Ziébland, S., Entwistle, V. A., & Hunt, K. (2010) · Social Science & Medicine · doi:10.1016/j.socscimed.2010.11.031 · Cited by 45 · see citing works
Self-citationEntwistle, V. A., Williams, B., Skea, Z., MacLennan, G., & Bhattacharya, S. (2005) · Social Science & Medicine · doi:10.1016/j.socscimed.2005.06.027 · Cited by 44 · see citing works
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Khangura, S. D., Bennett, C., Stacey, D., et al. (2008) · Patient Education and Counseling · doi:10.1016/j.pec.2008.07.035 · Cited by 40 · see citing works
Ahmed, S., Bryant, L. D., & Hewison, J. (2007) · Health Expectations · doi:10.1111/j.1369-7625.2007.00455.x · Cited by 39 · see citing works
France, E. F., Locock, L., Hunt, K., Ziébland, S., Field, K., & Wyke, S. (2011) · Health Expectations · doi:10.1111/j.1369-7625.2011.00672.x · Cited by 34 · see citing works
Self-citationOverberg, R. I., Toussaint, P. J., & Zwetsloot-Schonk, B. (2005) · Patient Education and Counseling · doi:10.1016/j.pec.2005.05.010 · Cited by 11 · see citing works
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- Authors
- Entwistle, V. A., France, E. F., Wyke, S., Jepson, R., Hunt, K., Ziebland, S., & Thompson, A.
- Affiliations
- University of Dundee (GB)
- University of Stirling (GB)
- MRC/CSO Social and Public Health Sciences Unit (GB)
- University of Edinburgh (GB)
- Corresponding author
- Entwistle, Vikki Ann
- Venue
- Patient Education and Counseling
- Publisher
- Elsevier BV
- Published
- 2011-12
- Volume
- 85
- Issue
- 3
- Pages
- e291-e298
- ISSN
- 0738-3991 (ISSN-L)
- OpenAlex
- W2072682434
- Cited by
- 147
- References
- 26
- Citations by year
- 2026: 9 · 2025: 13 · 2024: 5 · 2023: 4 · 2022: 17 · 2021: 10 · 2020: 13 · 2019: 9 · 2018: 5 · 2017: 10 · 2016: 14 · 2015: 12 · 2014: 10 · 2013: 11 · 2012: 4
- FWCI
- 15.49
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Patient Education and Counseling (publishedVersion)
- PubMed (publishedVersion)
- Discovery Research Portal (University of Dundee) (submittedVersion)
- Stirling Online Research Repository (University of Stirling) (submittedVersion, public-domain)
- Topics
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Health Sciences › Health Professions › General Health Professions › Health Literacy and Information Accessibility
- Health Sciences › Health Professions › General Health Professions › Patient Satisfaction in Healthcare
- Keywords
- healthcare decision-making, patient decision support, patient information resources, personal relevance, coping strategies, patient perspectives
- MeSH terms
- Decision Making, Female, United Kingdom, Humans, Interviews as Topic, Health Knowledge, Attitudes, Practice, Male, Patient Participation, Focus Groups, Qualitative Research, Consumer Health Information
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