Unsolicited written narratives as a methodological genre in terminal illness: challenges and limitations

Stories about illness have proven invaluable in helping health professionals understand illness experiences. Such narratives have traditionally been solicited by researchers through interviews and the collection of personal writings, including diaries. These approaches are, however, researcher driven; the impetus for the creation of the story comes from the researcher and not the narrator. In recent years there has been exponential growth in illness narratives created by individuals, of their own volition, and made available for others to read in print or as Internet accounts. We sought to determine whether it was possible to identify such material for use as research data to explore the subject of living with the terminal illness amyotrophic lateral sclerosis/motor neuron disease--the contention being that these accounts are narrator driven and therefore focus on issues of greatest importance to the affected person. We encountered and sought to overcome a number of methodological and ethical challenges, which is our focus here.