Giving people a voice: reflections on conducting interviews with participants experiencing communication impairment.

AIM: The aim of this paper is to describe the various strategies employed to mitigate communication impairments and to argue that illness experiences may be captured through methods other than audio-tape recordings of spoken words.
BACKGROUND: This paper explores issues surrounding the collection of interview data from participants experiencing communication impairments. It derives from a qualitative interview study, which enquired into experiences of living with a percutaneous endoscopic gastrostomy. This is an artificial route created directly into the stomach for long-term delivery of nutrition to people who are unable to take nutrition via the normal route. However, in many cases the physical impairments that led to their requirement for this form of feeding also made speech, and hence interviewing, very difficult. DISCUSSION: Capturing illness experiences from participants with impaired communication requires a reconsideration of both practical strategies and broader methodological issues. In addition to the adaptation of data generation strategies a re-examination of the complexities inherent in the meaning of 'patient experience' is required. This paper explores the utility of verbal and other interactional input from carers to explore further dimensions of this experience.
CONCLUSION: Qualitative research that seeks to capture the meanings of illness from the patient's perspective needs to be adapted to embrace different modes of communicating the illness experience.