08/02/2010 by lizit.

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.

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08/12/2009 by lizit.

Over the last couple of weeks or so, my thoughts about my DPhil research have taken some quite dramatic and unexpected turns but in a way which is making me feel rather excited and very grounded.

A couple of weeks ago, I had a planned meeting with my supervisor and a consultant from Social Sciences. The plan had been to look at methodology and data gathering for the studies I was planning of informal learning in Second Life. But in the time between arranging the meeting and it taking place, my thinking about informal learning had moved considerably as recorded in earlier blogs! We ended up talking about where I currently was, and recognising that I was talking about a very broad area, but one which could be examined in a narrow domain.  The advice accompanying that was that such a domain should ideally be one which I knew well.

It was one of those transforming moments when suddenly things which had not been coming together suddenly made sense. With no difficulty at all, Second Life and other virtual worlds were no longer part of the picture. Instead the very obvious domain which I know best was staring me in the face - people caring for children with an ASD. The whole range of learning styles is covered with the possibility of looking at learning journeys and the mix of learning types involved in a learning journey. Not only that, but I have access to so many potential study subjects - the parent support group I run, online groups, contact with schools and medical specialists…. Not only that but my supervisor has links and an interest in the area… The only question is why did it take so long to see the obvious!

So many of the themes that have been important through my professional life come together with this focus. My anger at the failure to recognise the skills and knowledge of people without appropriate qualifications. Questions about empowerment and change management, who are the experts. Ownership and change agency.  The creation of underclasses where people are stigmatised and disempowered …. Empowerment.

In the fortnight since that meeting, I have begun to think about what my research might involve, I have met another DPhil student who is looking at issues around stigmatisation, a colleague has given me links to references on expert patients, I am being given contacts with senior paediatricians, I have been given a contact with the person leading a major course on ASDs in Birmingham and had a useful formative discussion and the possibility of access to students on the course, I have met somebody working on the problems associated with labelling, I have come across the idea of using critical incident vignettes as a way of examining learning experiences, I have been encouraged to look again at Wenger’s work around boundaries …  I could go on and on, it seems so much has happened and come together in such a short time.

I’m very aware that I have a lot of work to do, not least scoping my studies, but I am feeling absurdly excited by the thought of doing work in an area I both understand and have a long term commitment to. I also know that I would not be where I am now if I had not spent the hours reading around lots of stuff and beginning to appreciate some of the complexity of things which on the surface seemed so simple and straightforward.

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16/09/2009 by lizit.

Just come across a wiki forming the basis of Karyn Romeis’s masters dissertation on the impact of the use of social media on her professional practice as a corporate learning professional. Interesting when only yesterday I was suggesting that hidden behind the work I am doing for my DPhil is a personal case study.

I haven’t read the dissertation in depth as yet - but can see that it is a document I will want to go back to as there are ideas there that I want to explore further.  One is the connectivism concept which I have encountered before, but do not really have a grasp of, but which may offer some way of linking ideas about informal learning. The other that has struck me at first reading, is the use of narrative and stories as a data source. In my description of what I want to do, I have found myself talking about stories, and it looks as though I need to find out more about narratives in thinking about my methodology.

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