My doctoral research focused on the experience and management of childhood epilepsy within the family from the perspective of children with epilepsy, their parents, and their siblings. Previous studies addressing how children experience living with epilepsy had primarily drawn on adults’ recollections of their childhoods with the condition. Although these studies were insightful, the way in which adults describe their childhoods often differs to how children feel at the time. Consequently, I wanted to hear from children themselves about what it was like to live with epilepsy.
This case study provides a practical account of the autodriven photo-elicitation interviews I conducted with children with epilepsy aged 5-13 years. (An autodriven interview refers to an interview where the participant produces material that they then comment on, while photo-elicitation refers to photographs being used as the stimulus for discussion). The case addresses some of the common problems researchers face when interviewing children and explains why this methodological approach was chosen. Next, the research design is detailed and reflections on the effectiveness of using this type of interview are presented. As a result, the concept of “informed dissent” is discussed alongside some of the ethical decisions that had to be made during the children’s interviews. Additionally, the practical problem of adults and children using different linguistic codes is reflected upon. Overall, this case suggests that research with children is open to (re)negotiation; researchers must reflect on each interview in order to gain as much data as is ethically possible from subsequent interviews.