ABSTRACT
In this chapter I give a personal account of using an approach to data collection influenced by instruments such as the Camberwell Family Interview (CFI) and the SESS (Self Evaluation and Social Support) to study seriously ill patients and their close relatives or carers. It is sometimes overlooked in discussing the ‘hardness’ of instruments such as the LEDS that George Brown and his colleagues have devoted a great deal of their time developing instruments to reflect as sensitively as possible subjective states covering a range of emotions and highly personal concerns. The study I recount concerned patients suffering from malignant cerebral glioma – a form of brain cancer with a particularly poor prognosis – and I was concerned to study the quality of life after radiotherapy treatment. I planned to see patients and relatives, as far as possible, soon after their initial diagnosis and then at three monthly intervals. I first describe the background to the study and the choice of a semi-structured interview to approach sensitive aspects of this situation. My aim was to quantify aspects of patients’ and relatives’ experience using rating scales developed as an integral and lengthy part of the research itself. I then outline how the scales were created and discuss a number of practical and ethical issues that emerged during the study. Studies of the effectiveness of treatment do not usually gather detailed interview-based data, and some fiercely critical letters followed the initial papers published in 1996 in the British Medical Journal. Although this has been subsequently balanced by positive comment, I suggest that part of the reason for the controversy was the ambivalence many in medicine felt to what is seen as the dangerous subjectivity of interview data. Such a response is intriguing as an interview approach is far closer to good everyday clinical practice than the perennial questionnaire employed in most such research, and widely regarded as the more ‘objective’. In this context I consider the future use of interview-based measures in quality of life studies.
