9.2.3 Research using unsolicited published and unpublished illness narratives within nursing and healthcare: methodological considerations (205)

Mary O'Brien, Research Fellow, Evidence-based Practice Research Centre, Faculty of Health, Edge Hill University, Liverpool, United Kingdom obrienm@edgehill.ac.uk

Abstract:

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 This paper will address the challenges faced by the researcher when pursuing published (print) and unpublished (electronic) illness narratives.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.

Recommended reading list:

  • Kleinmann, A. (1988) The Illness Narratives: suffering, healing and the human condition. Basic Books Inc, New York
  • Muller, J. (1999) Narrative approaches to qualitative research in primary care. In: Crabtree, B., Miller, W. Eds. Doing Qualitative Research. Sage Publications, CA. 221-38
  • Robinson, K.M (2001) Unsolicited Narratives from the Internet: A Rich Source of Qualitative Data. Qualitative Health Research, 11 (5) 706-711

Source of Funding: N/A

Amount in Funding: N/A

Biography:

Mary has a background in Neuroscience Nursing and was MND Nurse Specialist at for almost 9 years. She was appointed as Research Fellow in the Faculty of Health Edge Hill University and is based in the Evidence-based Practice Research Centre. Mary is involved with health care research with an emphasis on palliative and end of life care in non-malignant life limiting illness. Mary was awarded a BSc (Hons) Nursing studies from the University of Central Lancashire, followed by an MA in Health Research from Lancaster University. She is currently studying part-time for a PhD supervised by Professor David Clark at the International Observatory on End of Life Care (IOELC) within the Institute for Health Research at Lancaster University. Her PhD studies involve an exploration of the personal experience of living with MND as documented in published and unpublished illness narratives.