Wynne’s (1988) study on people with MS raises some interesting thoughts for me. As I understand it, the study was essentially about how people with MS understood their diagnosis, the process leading up to the diagnosis, and the possibility of science being able to provide ‘a cure’ at some time in the future.
Although some parallels can be drawn between MS and autism in terms of how far it is/was understood what the causatory factors are/were and the varying symptoms which are not common to all ‘sufferers’ in the same ways, I am less interested in this than in the methodology and some of the observations.
Firstly, methodology. The study was based on 12 interviews with people who had diagnosis of MS (in two cases, this was still in the process of being confirmed). The interviews themselves were unstructured, and the researcher describes them as more of a conversation. Her aim was “to explore what having MS meant to individuals and to allow them to tell their stories in their own ways rather than in terms assumed relevant beforehand by the researcher.” Wynne acknowledges that it was inevitable that the researcher approached each interview, not as a blank canvas, but with an awareness of what had been said in the course of previous interviews and that this meant that in the ‘conversation’ some of these extraneous factors were introduced. From my perspective, it also suggests that the interview itself became a reflective learning experience for both the participant and the researcher. One of the aspects I have been discussing with my supervisor is how many participants I need to recruit and it is useful to find a study where the number of participants is given.
The chapter is in a book about reflexivity and the importance of reflecting on what we write, how data is used, etc. One of Wynne’s observations concerns the use of quotations from interview data. She observes that the meaning of such quotations can easily be distorted by removing them from their original context. For example, in talking about why people approached their GP, she quotes examples of people seeking an explanation for their symptoms, but she chooses not to use a quotation about somebody looking for a repeat prescription for medication they had found helpful in relieving symptoms.
There are some interesting ideas about the relative expertise of the doctor and the patient, especially in relation to diagnosis. Although many of the participants initially received different diagnoses, and were sometimes treated initially for different ailments, this was regarded as acceptable by patients on the basis that the doctor at that time was not aware of all the information necessary for a correct diagnosis. On the other hand, when the patients began to wonder whether they actually had MS, perhaps as the result of seeing a TV programme or meeting somebody already diagnosed and recognising the similarity of their symptoms with those being portrayed or described, they were hesitant to raise this possibility with medical professionals, sometimes only mentioning their thoughts retrospectively or some considerable time after first suspecting the condition. From the text, it would appear this was not due to the seriousness of a diagnosis of MS, as the same patients were also wondering whether they might be suffering from other, more serious illnesses or conditions. There was a firm belief held by patients that diagnosis had to be confirmed by an expert, a consultant who had greater medical knowledge and expertise than the GP who had been initially consulted. In terms of autism, I recall many times being asked by different professionals who had diagnosed my son – the diagnosis by the NHS consultant in consultation with an NHS clinical psychologist carried far more weight than an earlier diagnosis by a consultant in private practice.
One of my foci is how far the expertise of ‘experts’ and ‘others’ is similar. Wynne notes that “The axiomatic distinction between expertise and non-expertise enabled the maintenance of faith in a medical science disembodied as it were from both practitioners and its subjects. Their scepticism was confined to their own abilities to be expert, either about themselves or about what science could do.” It will be interesting to see whether 20 years on in a different domain there is the same confidence in the medical profession and other experts.
Wynne, A. (1988). Accounting for accounts of the diagnosis of Multiple Sclerosis. In S. Woolgar (Ed.), Knowledge and Reflexivity (pp. 101-122). London: Sage.