Patient Perception, Preference and ParticipationHow information about other people's personal experiences can help with healthcare decision-making: A qualitative study☆
Introduction
When faced with new or unfamiliar health concerns or treatments, people often seek information about how other people have experienced these concerns or treatments [1], [2]. Such experiential information is now available in a wide variety of media, and is included in some patient education resources and decision aids [3]. However, concerns have been raised about the influence of stories about particular individual experiences on health-related decisions and behaviours [4], [5], [6]. Although experiential information may help people imagine what it can be like to experience particular healthcare processes or outcomes [7], [8], some authors suggest it might impair attention to outcome probabilities [9], [10]. The impact is likely to vary according to features of the information and the way it is communicated [9], [11], [12], the people who use it [7], their particular situations and the outcomes assessed.
We conducted a multistage study with the broad aim of exploring how people view and use different types of information for health-related decision-making [13]. The first stage involved a secondary analysis of accounts of information use and decision-making within in-depth interviews about experiences of five health issues: antenatal screening for Down's Syndrome, antenatal screening for sickle cell or thalassaemia, ending a pregnancy for fetal abnormality, treatment for lymphoma, and place of care for a relative with dementia [13], [14], [15], [16]. The second stage involved primary qualitative research with people who had faced the same five health issues studied in stage 1. It aimed to explore in more detail people's views and preferences relating to two broad types of information: ‘general facts’ and ‘personal experiences’. The third stage involved structured surveys to investigate the distribution of information needs and preferences in larger populations.
This paper reports findings from the second stage of the study. It focuses on the ways in which people describe using or valuing information about other people's ‘personal experiences,’ compared to ‘general facts,’ for decision-making. It also highlights the caution people describe when using this information.
Section snippets
Methods
Group discussions and individual interviews were conducted with people who had faced decisions about the five health issues. The project was approved by health service and university research ethics committees.
Findings
Participants seemed to readily recognise a distinction between ‘general facts’ and ‘personal experiences’ information, and talked about how they had used both types in past healthcare decisions. The illustrative excerpts stimulated further retrospective reflections, including about how they might have used the information from the excerpts if it had been available when they had faced similar decisions, as well as ideas about future information use.
There was notably less discussion about the use
Discussion
We found a strong consensus among participants that ‘general facts’ should underpin informed decisions, but it was also evident that ‘personal experiences’ information could support decision-making in a number of ways. Although the usefulness of ‘personal experiences’ information is to some extent contingent on a number of factors, our findings suggest it may help people to:
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recognise decisions that need to be thought about;
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identify possible options;
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appraise options and make a selection (for
Funding
This project was funded by the (UK) National Institute for Health Research Service Delivery and Organisation programme (project 08/1710/153). The authors responded to a call for research proposals relating to information and choice. The funders were not involved in data collection, data analysis, interpretation, the decision to prepare this manuscript for publication, or the writing of this manuscript.
Acknowledgements
We are very grateful to all the people who participated in focus group discussions and interviews, and to members of NHS staff and voluntary organisations who helped us to identify them and invite them to participate in this study.
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