Background
Patient narratives are illustrative, individual accounts of patients’ experiences with certain health conditions. Web-based patient narratives have become widely available on the internet and in social media, as part of electronically available patient decision aids or Web-based databases. In recent years, the role of patient narratives as a source of information, insight, and support for both health care users and providers has increasingly been emphasized. Although the potential impact of patient stories has high immediate plausibility, it is of interest to know if this impact can be captured in quantitative studies.
Objective
This review aimed to evaluate whether research-generated Web-based patient narratives have quantifiable risks or benefits for (potential) patients, relatives, or health care professionals.
Methods
We searched the following databases from August 2017 to March 2019: Medical Literature Analysis and Retrieval System Online, PsycInfo, Sociological Abstracts, Web of Science, and EMBASE. Titles and abstracts of the retrieved studies were reviewed and assessed for the inclusion and exclusion criteria. Papers were included if they studied the following: (1) (potential) patients, relatives, or health care professionals; (2) the effects of Web-based patient narratives that were generated scientifically (eg, through qualitative research methods); and (3) were quantitative studies. Furthermore, 2 authors independently performed an assessment of the quality of the included studies using a validated checklist.
Results
Of 4226 documents, 17 studies met the inclusion criteria. The studies investigated 10 different sources of Web-based patient narratives. Sample sizes ranged from 23 to 2458. The mean score of the quality assessment was 82.6 (range 61-100). Effects regarding five different purposes were identified as follows: provide information, engage, model behavior, persuade, and comfort. We found positive effects in every category and negative effects in one category (persuade). Several of the reported effects are rather small or were identified under specific experimental conditions.
Conclusions
Patient narratives seem to be a promising means to support users in improving their understanding of certain health conditions and possibly to provide emotional support and have an impact on behavioral changes. There is limited evidence for beneficial effects on some outcomes. However, narratives are characterized by considerable heterogeneity and the investigated outcomes are hardly comparable with each other, which makes the overall judgment difficult. As there are numerous possible measures and purposes of narratives, quantifying the impact of Web-based patient narratives remains a challenge. Future research is needed to define the optimal standards for quantitative approaches to narrative-based interventions.
Data on health care professionals' attitudes or behaviors are both limited and inconsistent. We thus provide reflections on methods, conceptualization, interpretation and the importance of the geographical or socio-political settings of potential studies. More empirical data is needed, especially on health care professionals' attitudes or behaviors towards (irregular) migrant patients.
Although the concept of subjective quality of life in the nursing home setting is seen as a promising approach to discovering opportunities for improvement from the resident's perspective, it appears problematic in classical surveys that self-reported quality ratings on the basis of satisfaction questions tend to turn out overly positive. The aim of this article is to analyze how people in residential care facilities interpret and process response stimuli received from a questionnaire on subjective quality of life. In this analysis, we aim to gain methodological insights into the way a survey instrument on subjective quality of life can adequately represent individual ratings, as well as expectations regarding different aspects of quality of life. To test the feasibility of the proposed approach, we employed a range of probing techniques from the cognitive interviewing approach. The result is a promising design principle for constructing survey instruments to measure subjective quality of life.
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