‘It is not worth the while to go round the world to count the cats in Zanzibar’
Henry David Thoreau
Almost every Monday I receive an email from an Australian lady called Robyn Cummins. You could receive it too, if you sign up for it. She writes from the Cerebral Palsy Institute, a body established by the Spastic Society of New South Wales (of which it is in fact a division), with the laudable but implausible aim ‘to pursue a cure for cerebral palsy’.
Each week she forwards me her regular weekly anthology of the formal abstracts of just-published research reports from ‘the journals’, by which is meant refereed journals, not exclusively (though mainly) in English, and mainly (though again not exclusively) in medical or paramedical/rehabilitation journals.
The mechanism for compiling this listing is that is comprises ‘the latest cerebral palsy research articles and comment, as indexed in the NCBI PubMed (Medline) and Entrez (GenBank) databases’ for the previous week.
This service is free and anyone can register:
Like many others who receives this anthology, I have no means of obtaining the full articles represented there, other that by writing to the authors of the articles cited to beg a copy, or with a little help from my friends. Of course, I could always pay...
Sometimes I have reported on some of them here on Conductive World though, as announced last week, research-reporting is now being discontinued on these pages. Henceforth, it will be up to people in Conductive Education to sign up for this and other such services for themselves.
Most of these articles are to do with medical matters but some of them may be interesting to people who are not of a medical background. I personally find most of the epidemiological stuff and much of that to do with causation to be fascinating. Much of the rest of the truely medical content, however, sits so far outside my expertise, that I cannot tell whether it is fascinating or not, nor whether the critical comment to be made below might also apply to some of this material too.
Those with professional or managerial concerns in Conductive Education really ought to sign on, receive this email bulletin weekly and form their own judgements. Many of those with more personal interests in cerebral palsy might also care to give it a glance and perhaps find matters relevant to personal interests and concerns. Or at least gain an idea of what is being done and achieved in the name of their supposed benefit.
Sign in and you will also find topics studied and reported that spill outside of the sole or even proper concern of medicine, into social and psychological areas, important matters relevant to personal interests and concerns. If you have any real involvement with cerebral palsy, you are likely to find something amongst these to set your mind racing, in some cases about cerebral palsy itself, and in others about the nature of the research that is published here.
Two findings from this last batch fall for me into the latter category.with findings that make me stop and think about the nature of so much contemporary research.
Well, what do you know…?
The first comes from Belfast in Northern Ireland:
Conclusion. Children with cerebral palsy and associated impairments are at higher risk of poorer health and family well-being. A family-centred approach to the care of children with cerebral palsy and their families is essential to ensure both receive adequate care and support. (Parkes et al., 2009)
The second is from Philadelphia PA:
Interpretation: The results provide evidence that age and environmental setting influence method of mobility of children/adolescents with CP. The method that is preferred in one setting may not be preferred in another setting or at another age. (Palisano et al., 2009)
Statements of the bleeding obvious? If you are British or Australian you will almost certainly be aware of and possibly at times even use this widespread vulgarian expression. I know no other way of expressing the exasperated contempt that it conveys. I note that Google finds over fifteen-thousand hits for it.
A proper research paradigm for this field
Of course something may be universally obvious, well-known to be a fact by all sensible, right-thinking people, and still be no more that an old wives' tale. Critical, empirical evaluation of such supposed facts, clearing away the detritus of misinformation, is in such situations a perhaps vital step in furthering the progress of human knowledge and, in the case of cerebral palsy, human welfare too. Empirical and theoretical re-examination of stale ‘common-sense’, ’stands-to-reason’ understandings should be mounted in response to the slightest scintilla of doubt as to their validity. Maybe it would even be desirable, in the best of all possible worlds, to ‘spot-check’ when no such scintilla had been raised…
Whether conventional wisdom is then confirmed or overthrown, the result is a genuine advancement in formal acquired scientific knowledge and in the well-being of our fellow citizens.
But every fact known to humankind cannot possibly be treated In this way. Humanity knows too much about too many things for this to be feasible, however much bean-counters and risk-avoiders might wish it to be otherwise. An awful lot of what we know has simply to be accepted as lying within the range of human judgement, leaving vital time, expense and human effort for problems of a different kind.
There are so many things that everybody already ‘knows‘, say about the lives of children and their families living with cerebral palsy. Cosset society’s desperate research budgets and focus for issues in which there is substantial reason to raise doubts about widely experienced understandings. Direct the resources saved into doing something more productive than more surveys that confirm that the world is much as is commonly experienced, confirmation of which is few people’s priority.
What might be an appropriate paradigm?
What people usually want is change, and the central question of what might be done to achieve this. There is only one way to do this in the multifactorial, dynamic and systemic phenomenon of bringing up children; Interventions have to be made.
Given that there can be no single research paradigm to suite every human situation, much wider exercise could and should be made of research not into how things are but into how they might be ameliorated or in other ways changed. It is not the risk of poor outcomes that should be the focus, such as in the studies quoted above, but the means whereby they might be mproved upon or even eliminated.
Researching within such a paradigm requires imagination, time, verve, and courage too (because the risk may be transferred from subject to investigator). ]]
Will you live to see its like…?
Only if you fight for it.
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