An investigation into the social construction and consequences of the label epilepsy.

This project focused principally on 24 families with an epileptic child. It aimed to treat the meaning of epilepsy as a central research issue and thus to examine the source and manner by which the meanings of epilepsy were constructed. The principal objectives were to understand: a) the kind of knowledge about epilepsy available to parents, by reference both to lay and ‘expert’ frameworks b) how such knowledge shaped parents’ typifications and expectations about their own child c) the variety of ‘responses’ to the child displayed by others inside and outside the family d) the nature of parents’ interpretations about the child’s identity and behaviour and the manner in which this might sustain their ‘responses’ towards him/her. For each of the 24 families studied, there is a fieldwork file. This consists of in-depth interviews, notes from informal contacts and telephone conversations, observations of family life and the like, as well as notes taken from the hospital records (hospital notes); observations of hospital visits (hospital observations); interview guides and the researcher’s own analysis guides made during the research project. Where tapes of the interviews survive, these are also included in the file. In addition, this data collection also includes: 64 accounts of observations of doctor-patient consultations, intended “to examine the relationship between what parents said occurred with what actually happened in clinics in order that their validity be checked” conducted over a three month period in hospital outpatient clinics 107 of the surviving 114 ‘street survey’ interviews conducted in Bristol and Oxford, “designed to find out what kind of knowledge, ideas, images of epilepsy were held by members of the public”, in a few instances the original tape recordings have also been retained.