ABSTRACT
This chapter highlights that the overall design of the study on parents' experience on the death of a child, was that of a descriptive survey. The face-to-face interviews were to explore parents' perceptions of: the experience of treatment being withdrawn or withheld from their baby;the actual decision making; and follow-up care. The three Regional Neonatal Referral Centres in the East of Scotland, situated in Aberdeen, Dundee and Edinburgh, were selected as the study Units. Semi-structured interview schedules were designed expressly for this enquiry by the principal researcher (HMcH) in consultation with one co-researcher (PWF), who at that time was not a consultant, and with the study's scientific advisers. Although the principal focus was decision making about the withholding of treatment, areas under investigation included parental perceptions of the following: the way in which bad news was conveyed; the timing of the decision making; the parents' own involvement in the decision making; the management of events; and so on.
