Research using unsolicited published and unpublished illness narratives within nursing and healthcare: methodological considerations

Illness narratives are generally regarded as an instrument to document and relay what an illness experience means to the affected person and their family (Kleinmann, 1988). Using narratives to communicate illness experiences empowers individuals; they choose what is important and use their own words to describe their encounters (Muller 1999). Recent times have seen an increase in nursing and health research utilising illness narratives; studying such material is regarded as a legitimate alternative method for capturing the effects of living with illness over a period of time. Illness narratives can be obtained in a variety of ways, through interviews, from autobiographies and from other print media and more recently from personal web pages posted on the internet. Unsolicited first person narratives from the internet can legitimately be used as research data (Robinson 2001). This paper will address the challenges faced by the researcher when pursuing published (print) and unpublished (electronic) illness narratives. It will discuss the search strategy guided by systematic review methodology which set out to gain an appreciation of the amount and type of written material that was available. 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 will be addressed. Practical issues when using internet based material will be considered. The use of unsolicited material, especially that which is located on the internet, raises a number of ethical considerations for nurses, relating to the need for informed consent and anonymity, as well as the need for ethical approval, which will be discussed. An algorithm for decision making regarding the need to seek ethical approval under these circumstances has been developed and will be presented.