Monday, 9 November 2009

THE ACTUAL OR PRESENT LEVEL OF DEVELOPMENT

So what to do next?
That is the question
 
Abstract

Objective. To determine the problems experienced by young adults with cerebral palsy (CP) and the relationship between those problems and personal and CP-related characteristics.

Design. Cross-sectional study.

Setting. Rehabilitation centers in the southwest Netherlands.

Participants. Young adults (N=87; aged 18–22y) with CP and normal intelligence (roughly corresponding to an intelligence quotient >70, excluding participants who attended schools for those with learning disabilities).
Interventions. Not applicable.

Main Outcome Measures. We used the Canadian Occupational Performance Measure in a semi-structured interview to assess participants for experienced problems. We further categorized experienced problems according to the domains of the International Classification of Functioning, Disability and Health and assessed the relationship between those problems and personal and CP-related characteristics (.g., age, sex, level of gross motor functioning, manual ability, level of education) using appropriate correlation coefficients.

Results. Approximately 70% of participants experienced problems in daily life, addressing the areas of self-care (59%), productivity (52%), and leisure activities (37%). More specifically, problems were most prevalent in recreation and leisure (30%), preparing meals (29%), housework (14%), and dressing (14%). Problems in functional mobility, paid or unpaid work, and socialization were considered as most important (represented by the highest mean importance score). Mobility problems were associated with lower levels of gross motor functioning (Spearman ρ =.39), and problems with self-care were associated with lower levels of manual ability (Spearman ρ =.40).
 
Conclusions. Although frequently addressed during pediatric rehabilitation care, problems with mobility and self-care still prevail in young adults with CP. In addition, during the transition into adulthood, young adults with CP may experience problems regarding domestic life and work, which they consider important.

Nieuwenhuijsen, C., Donkervoort, M., Nieuwstraten, W., Stam, H. J., Roebroeck, M.E. and others (2009) Experienced problems of young adults with cerebral palsy: targets for rehabilitation care, Journal of Rehabilitation Medicine.

Granting that the above is only an abstract (I have no means of accessing the full article) this seems another of those meticulous, costly studies that do appear to confirm the obvious. Yes, it seems to say, the world is indeed as it looks. One can hardly argue against having perceptions and preconceptions confirmed, any more than one can object to having them overthrown. But how far does that take us? Might there be more productive ways to investigate questions of rehabilitation, special education, and Conductive Education?

Horses for courses
 
A few days ago, Conductive World excepted from Hansard a little of last week’s excellent debate in the House of Lords on preventing cerebral palsy i. The only non-medical contribution from the floor of the House came from Baroness Scott of Needham Market. Among other things, she said:

My Lords… two people close to me have children with cerebral palsy, so I see regularly at first hand what the noble Lord, Lord Patel, described at the heartbreak that is involved in raising a child with this condition… What strikes me about my two friends is that their children were born 17 years apart and yet have had very similar experiences. This demonstrates that, while we have invested a huge amount in research, we have not kept our response up to date in terms of what happens after birth.

She had stepped a little to one side of the specified topic of debate, seizing the opportunity to broaden it into a wider question of current social concern: what best to do for children and their families in situations where prevention is not achieved, now or in the future.

She pointed to Emperor Research riding unquestioned astride his high horse, and spoke the unmentionable. It was interesting how the Minister, Baroness Thornton, responded to this: she just moved on, putting Conductive Education gently aside by deploying two well-exercised red herrings 'a range of models of care which helps to meet the needs of some children with cerebral palsy and their parents' (really, what are the other models and who are the other children?), never mind its being safely buried in distant Central Europe. I suspect the position taken by the Minister and her advisers over this to be no different from that of most of those few who give this question even momentary thought.

Nice try, Baroness Scott. Nicely kicked into the long grass, Baroness Thornton.

How in a better world might things be otherwise?. In the field of special education and rehabilitation, the answer to Baroness Scott’ question should not be ‘more research is needed‘, much beloved by academics (more research, that is, of the same kind, as they presently do). It should be 'Different research is needed' (different practice too). The sort of research abstracted above and the paradigm that it manifest may succeed in raising novel questions but can it generate, or even move towards socially productive answers. For example:
  • Empirically, what has been going on over the course of these young adults’ childhood and adolescence, even in the presumably well-funded and well-organised (and well-researched) Netherlands, to leave young people in a situation still perceived as a problem both by the investigators and by the young people themselves as they pass into adulthood?
  • Theoretically and more fundamentally, what does (or can) information on the present situation tell us about what should be done next?
So much research, to what outcome?. Is society backing the wrong horse?
 
Another horse, a well-ridden hobby horse
 
What then might be a more appropriate paradigm for research in to rehabilitation, special education, and Conductive Education?
 
A month ago (à propos another study from Holland, but this coincidence is of no significance here), and not for the first time, I mentioned a ready alternative ii.
 
What people are after is change, and their central question is what might be done to achieve this. There is only one way to tease this out of the multi-factorial, dynamic and systemic phenomenon of bringing up children. he Gordin Knot has to be cut: innovative interventions have to be made iii. Much wider exercise could and should be made of research not into how things are but into ways to change this. It is not the outcomes of present poor outcomes that should be the focus but alternative ways whereby they might be ameliorated or even eliminated (how many italics does it take to emphasise this enough?). Researching within such a paradigm requires imagination, time, verve, and courage too because risk is transferred from subject to investigator.
 
Many years ago L. S. Vygotskii advanced the simple principle that investigating what children can do now, on the basis of their life’s experiences to date, is not the end of an investigation, it is only its beginning iv. Something more is required beyond that, children’s active participation in the purposive intervention of adults. More simply, they need to be taught. The results of that and that alone will tell you where you might be going (and the means to get there).
 
What on Earth could Vygotskii have been thinking of? What did he have in mind? Perhaps it was this:
 
The philosophers have only interpreted the world various ways; the point is to change it.
(My emphasis)
 
This philosophy shot through Vygotskii’s methodology of science. It is equally relevant to research and practice in special education today, including Conductive Education, and to ‘rehabilitation’. Perhaps if this were not one of the most quoted of the revolutionary slogans of Karl Marx v, its guiding principle might be more openly embraced, to ensure the social utility of research in areas such as Conductive Education, and many another.
 
Where did all these horses come from?
 
I don’t know, they just turned up as I have been jotting this down. There is another one that I cannot resist. So much special-educational and rehabilitational research (I have no reason to single out the particular study that prompted this article), looks so terribly competent according to its own terms but these terms may place it in a world of its own, a parallel universe, an academic bubble, that refers to its own positions and priorities, rather than to the concerns of subjects, practitioners and the wider society. It assumes a life of its own and an alternative reality. Without society’s making conscious effort to rein in ‘research’ as she is presently spoke in this sector, then it will continue to gallop off its own preferred directions, guided by its own chosen goals and philosophy rather than by those that might better benefit the rest of us. As Oliver Goldsmith put it vi:
 
That same philosophy that is a good horse in the stable but an arrant jade on a journey.
 
How to solve the problem of the gap between academic research and society’s needs for useful enquiry? It is a free world (perhaps paradoxically, one in which one might still wish academics to feel freer to express themselves). At the same time, how to juggle with academics’ environment in a way to ensure that more of their work might be actually useful?
Baroness Scott referred to a period of some eighteen or nineteen years in which we as a society seem to have learned precious little of better ways for the benefit of young disabled children and the parents who bring them up. A lot can happen in eighteen or nineteen years, and a lot of opportunities missed:
  • a whole generation of children has passed into adult young adulthood
  • around the beginning of that span of time the first conductive parent-and-child group outside Hungary was established, in Birmingham, followed by the experiences of perhaps a score or more analogous programmes across the country and several-fold that around the world
  • over that time ’research’ has done NOTHING to contribute to public understanding of the potential benefits of what this represents.
Lady Scott’s friends have made a good job of conveying to her a situation that has been apparent to hundreds (no, thousands) of parents across the worldover some twenty years now. Put aside the distraction of her referring to the Pető Institute as though it is unique in providing this benefit:
 
… for many people, [Conductive Education] has provided the only hope, because the Peto Institute offers an essentially optimistic way forward for parents and children who are suffering very badly from low morale and a sense of hopelessness… I am told by parents that the conventional approach that they receive in this country fails to educate them about how much they can do, even about simple things… Few parents have access to conductive education. When they do, they often find that it comes to an end when the child reaches school age. Then, the child usually regresses. That is very demoralising for the child and for the parents...
 
Ultimately of course, the decisive factor in changing this deplorable situation, in the UK and in other countries, will not be ‘research’ but political will. Research that is not just rigorous but also relevant to the questions that need investigating might or might not contribute to creating that political will. It would certainly be a product of it, should it ever come to be.
 
Footnotes
 
i Sutton. A. (2009) Conductive Education in their Lordships’ House, Conductive World, November
ii Sutton, A. (2009) The wrong kind of reseaerch: so what would be the right kind? Conductive World, 15 Setember
 
iii Note in this respect the cri de coeur heard at Cerebra’s Annual Conference as reported on Conductive World a couple of weeks back:
 
It is relatively easy to get money for evaluating interventions but it is so hard to get funding to develop interventions, funders do not want to put money into something that might not work…

Sutton, A, (2009) To Cardiff, to sniff the air: reflections on a conference, Conductive World, 29 October
 
 
iv The words in italics rolled straight off the top of my head as I wrote, an obvious quotation from L. S. Vygotstkii, I thought. I subsequently spent a whole evening happily but fruitlessly seeing the source of this supposed quotation. I was sure that it comes from one of Vygotskii’s accounts of the zone of next development, but I am now beginning to have my doubts! But if not him, who else? Was it from Luriya and Dul’nev? Ivanova? I cannot claim the saying for my own, much as I should like to, as among other things, in my mind’s eye I see it written in Russian. Anyway, it does sound so like something from the man himself! Any suggestions on the source would be most gratefully received.
 
v Marx, K. (1848) Theses on Feuerbach, Thesis XI
 
vi Goldsmith, S. (1768) The Good-Natured Man, Act I

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