Use of unsolicited first-person written illness narratives in research: systematic review

This paper is a report of a methodological systematic review conducted to critically analyze the use of unsolicited first-person written illness narratives for research purposes.

Documenting illness experiences through written narratives enables individuals to record the impact of illness on themselves and those closest to them. In health research, unsolicited first-person written illness narratives are recognized increasingly as legitimate data sources. To date there has been no critical evaluation of the method.

The ISI Web of Knowledge; CINAHL; PubMed; MEDLINE; PsycINFO; Science Direct; Cochrane Library databases and the internet metasearch engine 'Dogpile' were searched for the period up to 2009. The search terms were: 'patient experience', 'narratives', 'autobiography', 'pathography', 'written narratives', 'illness narratives', 'internet', 'published', 'unsolicited'.

Recommendations within the Centre for Reviews and Dissemination guidance informed the review. Eligible studies were evaluated according to inclusion/exclusion criteria. The data were extracted by one reviewer and monitored by the second reviewer.

Eighteen papers met the inclusion criteria, 12 from the original search in 2008 and six from the updated search in October 2009. Nine used unpublished (internet) narratives, eight used published (print) accounts and one drew on both genres. The method has been used to explore a wide range of illness experiences. There was lack of agreement on key terminology. Methodological issues were often poorly-described, and confused ethical stances were reported.

The lack of methodological detail in published papers requires attention if this method is to be used effectively in healthcare research. The confused ethical stance adopted needs to be addressed and clarified. A theoretical conceptual framework to define and describe the method accurately is urgently required.