End of life research using published and unpublished illness narratives of motor neurone disease: Methodological considerations

Background: Illness narratives are instruments to document and relay what an illness experience means to the affected person and others close to them. Recent times have seen an increase in end of life research utilising illness narratives. These can be obtained through interviews, from autobiographies and other print media and more recently from personal web pages posted on the internet. Aims: The study aimed to 1. Determine the feasibility of using unsolicited first person narratives as data 2. Explore the personal experience of living with MND as documented within the narratives. Methods: The search strategy, guided by systematic review methodology, set out to gain an appreciation of the amount and type of written material available about living with the effects of MND. Ultimately 161 published and unpublished narratives written between 1968 and 2005 by people diagnosed with the illness were identified and subject to content and thematic analysis. Results: We focus here on the challenges encountered. The steps taken to organise, access and assess huge volumes of potential material in a focused manner, to arrive at a manageable sample of narratives were complex. There were also several practical issues to be considered when using internet based material, such as the extent of the medium, the transient nature of material on the internet and the veracity of the content. Additionally, the use of unsolicited narratives raised issues relating to the need for informed consent and anonymity, as well as the need for ethical approval. Conclusions: Unsolicited material written by people with a fatal illness can legitimately be used as research data. Methodological and ethical complexities are apparent, particularly with material located on the internet for which there is little guidance for researchers. As part of this study an algorithm was developed which takes prospective internet researchers through decision making regarding the need to seek formal research ethics approval.