02 December, 2010

A Diet of Worms

I was excited to spot Dorothy Bishop's article about the neuropsychological effects of neglected tropical diseases. I've been working in this field for 15 years now but really stumbled into it by chance. It is quite a good dinner party conversation piece (either that, or everyone's too polite to tell me to shut up - but they do generally ask) so I thought I'd share my almost certainly non-replicable path to this field. I'm writing more for a scientific reader but from a personal perspective - apologies for a few technical terms.

After I finished my undergraduate degree (in Neuroscience, if you're interested) I wanted to go and "save the world", as one does. A volunteer post teaching Biology in Zambia presented itself, so off I trotted.

I lived on the least money I have ever managed (stamps were a stretch), talked to my pupils about sex ("Alcohol causes HIV, madam" "Are you sure?" "Yes madam, when people get drunk they do not mind who they sleep with". Such wisdom from one so young...), learned a small amount about Bantu grammar (but no real conversation past How are you, Fine, and Thank you), and did a little bit of travelling into the bargain. I lost my passport and got it back twice, and crossed from Zimbabwe (at the time, the "rich" country where you could buy stuff and go to nice hotels) into Zambia on just an identity card.

Back to real life, and I started a PhD on motor abilities in language disorders, which I still also work on. In fact, not too surprisingly, it's what most people, if they've heard of my research, associate me with.

About a year before I was due to finish the PhD I spotted a job ad for a postdoc looking at the effects on cognitive development of parasitic infections in children in Tanzania. As the only applicant with my rather unusual combination of qualifications - experience in African schools and a PhD project in developmental cognitive neuropsychology - I wasn't hugely surprised to be offered the job. The other candidates also seemed intrepid, capable, and intelligent, but I got the impression they were grasping at straws when they shortlisted (one had worked on gorilla cognitive development but had had to leave Rwanda due to the war there, one worked on schizophrenia and had taught in a remote area of South America, a couple had been travelling in Africa). My only doubt was whether I would be finished with the PhD in time, and I remember my future boss sounding extremely stressed on the phone when I said I needed to think about it!

Nearly a year later, I'd submitted my thesis and was packing - we all went to the pub and everyone was asking me whether it was exciting to have finished - I was far more excited by my new Swiss Army knife. I flew off to Tanzania and spent the next two years running a huge project (after not too long my bosses saw sense and employed both an additional scientist and a very well qualified local administrator). We had a sample of 1000+ children, about 20 staff, a five room office that needed refurbishing (as did my flat upstairs), two 4WD vehicles, payday each month... I had only just finished my PhD and was used to my hand being held. I learned Swahili pretty quickly once I realised I needed it to eat, get water, electricity, and floors in the building, get the cars serviced, and communicate with the children participating and, indeed, most of the project staff. At least the Bantu grammar came in handy.

In this field, at least 75% of the effort is in developing tests. As Dorothy Bishop says, culturally appropriate tests are usually lacking, and (even once we've developed them) they are not standardised or validated. Another huge hurdle is a lack of psychologists. It's one of the most popular degree courses in the West, but in many countries there are no psychology degrees. This was true in Tanzania, and also in Indonesia and Uganda where I have worked more recently. In Tanzania we were working in a school setting and we tended to employ school teachers as research assistants. In Indonesia, it has been child nutritionists, and in Uganda, nurses and medical officers. I was at a meeting recently in Kampala to set up a network of people working in child psychology - mainly educationalists and psychiatrists, with a couple of paediatricians.

Where psychology degrees exist, most graduates go into private counselling. Any child psychologists also tend to go into private practice, working with the children of the new middle classes. University psychologists have horrible teaching loads, have to run a private practice to make ends meet and cannot get any research done. You're right,
you don't know you're born in Europe or North America.

One of my colleagues who has completed her PhD in developmental cognitive neuropsychology is a psychology graduate from her home country but was seconded from her lecturing job to the group we were both working with. Her supervisor found some great postdoc funding but she wasn't supposed to continue research - and she was a government employee - so she's had to be careful to avoid her university when she's in her home country. She could easily have got a good teaching job outside her home country, but she wants to do something for psychology in the country, we're pretty sure they won't re-employ her if she just leaves, so she's juggling for the moment.

Neglected tropical diseases are of course incredibly important causes of delay in cognitive development. But there are many other factors that mean children in developing countries are at risk for neuropsychological deficits and cognitive delay.

One of the most satisfying projects I worked on was a "boring" construction and standardisation of a "bog standard" test of cognitive development - in essence the same as an IQ test - for a project trying to estimate the prevalence of cognitive and neurological deficits (pdf) in a population of children. We made sure that our tests were do-able, at least in part, by children with motor or sensory problems. And we found a group of children who were profoundly deaf, had no spoken language, and weren't in school - because of parents' beliefs that deaf children are uneducable. But these children were performing at normal limits on non-verbal tests. So we arranged for them to go to school.

The main reason I mention that project is because the majority of children who do have neurological deficits in that group are those who have suffered cerebral malaria. The article I've linked to estimates that a million children under five die each year and 250,000 are left with neurological complications or developmental delay. Just as with worms, if this parasite were affecting "our" children, people would be up in arms.

One interesting fact is that, of course, all of these parasites (worms, malaria) did affect "our" children in the past. Malaria was common in the Southern US until at least the 1930s. Hookworm flourishes most places where there aren't enough privies and children don't wear shoes - again very common in the southern US in fairly recent history. Educators at the time recognised that wormy children did not learn well, but had little evidence to back it up.

The "widespread prevalence"of hookworm weakened the "bodies and minds" of schoolchildren, declared Virginia state school officials in a pamphlet circulated to teachers. Infected children became "easily fatigued,"unable to study with interest; even with the teachers' determined involvement, children with hook- worms made "poor progress" and probably left school uneducated.
It's not just infections, either. Another project I've been involved with has been giving pregnant mothers micronutrients (vitamins and minerals) and comparing outcomes to mothers who got the standard iron and folic acid normally supplied by midwives on their Indonesian island. My PhD student looked at the outcomes of nutritional supplementation on both mothers and their preschool children. We're still analysing the data, but we're interested to see that mothers who were given supplementation improved in their cognitive functioning (pdf) - so we now want to know if they might make better, more attentive and stimulating, mothers for their preschoolers.

The thing that all of these - the biological risk factors - have in common is that they occur when people are materially poor. We commonly find effects in our results of relative poverty - the differences between mothers who have managed to go to secondary school and those who have only a couple of years of primary school, between families who can afford a bicycle and a tin roof (and probably enough to eat) and those that cannot. But we find on top of those effects of the biological risk factors we study. Schooling is well known to influence cognitive functioning, and we've got some interesting data on what happens when you try and test children who haven't been to school.

It would be bad enough if we were, in fact, talking about children who have these biological risk factors, but who then went to lovely primary schools and had heaps of Surestart resources and well-trained teachers, enabling them to overcome their disadvantaged start in life. Although some schools in Asia are clean, pleasant, and have at least some equipment suitable for small children, many schools in the developing world struggle to have enough desks, and for the roofs not to leak in the rainy season. Teachers can be poorly trained and equally poorly motivated. Their salaries don't cover their living expenses, so they neglect their classes for outside jobs, spend classroom time working their vegetable gardens, and in some cases deliberately leave crucial subjects untaught so that pupils have to pay for outside tuition to pass Government exams.

Children leave school early because their families need them to work, because another child needs to go to school and there is not enough money for fees or uniform, or because they started school at a relatively old age and have reached puberty. Just a few years at school may teach children to read, but they may not retain it once they have left.

I'm going to have a mini professional moan at this point, just to say that this is the type of field where one works with very large teams of researchers, and rightly the large teams are credited on research papers. Unfortunately, because this isn't common in psychology, it's often not recognised that if you are going to have a great paper in a great journal, you are going to share authorship with 10 other people, and the only way to avoid that is not to be an author on that paper or (which has been suggested to me) not to do this kind of research. Personally, I feel this kind of research is much too important not to carry on doing it.

I started this post to give a flavour of the path I've taken in doing this research and the experiences I've had but - probably because it's something I feel passionately about! - it's taken on more of an educational character! Sorry about that... but anyway, I have had some incredible experiences and worked with some incredible and dedicated people.

It's not every research psychologist that has to arrange for a bridge to be built over the weekend to get the team to the testing location. You don't often get to have a beer watching the sun go down over both sides of the Indian Ocean*. And fortunately you don't in most research psychology jobs lose child participants, research assistants, and a project driver to malaria, HIV, and one of the biggest killers in the developing world - road traffic accidents - respectively.

*before you get confused, not simultaneously, two different research sites widely separated but both with quite undulating coastlines.