Thirty years of psychosocial research in epilepsy: Personal reflections of a social scientist

Abstract

The idea for this inaugural essay and new feature for Epilepsy & Behavior (EB though the primary outcome of interest was relapse rate, he had been encouraged also to examinewider ‘psychosocial’ outcomes. A neurological colleague had pointed him in the direction of the research unit where I was then employed — and so began a long-time research collaboration and my enduring interest in epilepsy. To start with then, a brief biographical note — I was born in 1951, the year in which Talcott Parsons published his critical theoretical discussion on the sick role [1]. I started school in 1956, the same year that the UK Medical Research Council hosted a meeting to consider a question being strongly contested at the time — namely, the role of sociology in medicine. Though originally planning to read Classics at university, I switched to Sociology and after graduating in 1972 entered employment— though not in a Department of Medical Sociology but in a Department of SocialMedicine. In 1975, the year that the term ‘quality of life’ (QOL) first appeared in IndexMedicus, I beganworking at the UK Office of Censuses and Surveys on a study of patients' views and experiences of UKprimary health care, and in 1981, around the time thatWHO published its new Classification of Impairments, Disabilities, and Handicaps, I moved to the Institute for Social Studies inMedical Care (ISSMC) to work with Dr. Ann Cartwright, a ‘founding mother’ of UK health services research, to whom I owe a huge debt. And there, in collaboration with David Chadwick, who I firstmet in the year of the first international conference on QOL research, I began work on developing patientbased outcomes in epilepsy. At the time David approached me, there had been relatively little systematic examination of the psychosocial aspects of epilepsy and virtually none in the context of clinical trials of epilepsy treatment — despite that its impacts for specific aspects of functioning such as school performance, marriage, and employment had long been of interest to the clinical and research communities. However, during the early years of my career, the debate about how a person's QOL could be