11 April, 2013

Therapies for children who have been abused or neglected part 1

Children who are adopted often need a new family because their first family abused or neglected them. This maltreatment can have lifelong consequences for behaviour and development. Parents often experience huge difficulties with their children, and don't know where to turn. They feel disempowered, that they don't know anything, and that no-one will help.  Like parents of children with disabilities, they may feel very grateful if anyone offers a solution. The problem may come with those solutions.

I'm reposting this, slightly edited, from my personal diary blog - I wasn't sure where to post it originally but have been persuaded to put it in both places. I originally started this blog to look at simple, everyday parenting issues like reading and writing, friendship, babies' development but the issues brought up by reading about parents of children with difficulties have meant I want to have a look at therapies.

To give this some background, I've also been having some Twitter conversations with psychologists who don't have anything to do with adoption, but who are getting increasingly irritated with scientists and clinicians publishing papers saying "this therapy is brilliant!" when it isn't. And I also follow a lot of quack-watch type people (Ben Goldacre etc.), and frankly, the state of "therapeutic" offerings for children who have had dreadful early life experiences is way, way below the standard offered by the slightly self-promoting scientists and clinicians. It seems in some cases to be nearer the homeopathy, cranial osteopathy, and pseudo-qualified nutritionists of this world that are the subject of quack watch types.

Let me say at this point that I know I am going to get comments by people saying "but but but we've tried A B or C and it was FABULOUS and our lives have been TURNED AROUND and this person is a God!".

Fine. You can believe that. But if something, on average, has no effect - then that means half the group gets better, half gets worse.  What if you ended up in the group that got worse? Would you be happy you spent your money on it?

And if on average children on a treatment get better (but only compared to themselves at the beginning, or only compared to children who weren't getting any treatment) then it could easily be because they are growing older (children learn things and become better behaved, mainly, as they get older) or because they've had some special attention.  This is usually cheaper than therapy.

If you need to be persuaded further why we need evidence on parenting have a look at my introductory post.

So... I thought I'd see what evidence there was for a couple of the really popular training and therapy centres that are talked about a lot by adoptive parents: the Child Mental Health Centre (Margot Sunderland's place) and Family Futures (which is a voluntary adoption agency,and I believe in that capacity has great inspection reports, I'm not sure that its training side gets inspected).

The Child Mental Health Centre says one of its aims is:

Dissemination of Research

To promote positive social change through disseminating the latest research in child, parent and family mental health

To make available to parents, teachers, child-care professionals, providers and custodians of services, politicians and the lay-public at large, a comprehensive up-to-date knowledge base in child and family well-being

To fund an effective dissemination of psychologically and neurobiologically based research. Organisational isolation can be costly: ...wasting time slowly re-discovering what is already known (Baron Peter Slade, 2000)

Family Futures says:

Our therapeutic interventions draw upon and are informed by the work of Dan Hughes, Theraplay, Bruce Perry, Bessel Van der kolk, Babette Rothchild and Dr A. Jean Ayres and many others.

I'm still looking for a list of research that the Child Mental Health Centre is disseminating. So I'll start with Family Futures. Let's take those in turn and see what evidence there is that these theories and therapies work.

Dan Hughes: I found this paper by him about his therapy and its basis. It doesn't present any evidence for its evaluation, and I am not completely sure (because it's not my area of specialisation) that his therapy described there is the same as Dynamic Developmental Psychotherapy, but DDP is compared in a few studies to treatment-as-usual, and it seems to come out well. The studies aren't large, but then fully diagnosed Reactive Attachment Disorder isn't common.  The studies don't tell us anything about DDP in children who haven't got RAD. This review suggests however that the statistics in Hughes' study are pretty rubbish, and worries about some of the ethics of it.

Family Futures now offer a training course that includes DDP, which they call "Neuro-Physiological Psychotherapy". I'm not sure what makes it neurophysiological, as neurophysiologists are generally medical doctors who have a speciality in a branch of neurology, or lab scientists who work with lab animals. I'm also not quite sure whether the hyphen makes a difference.

The "Recommend to a Friend test": I might recommend this to a friend whose child had a diagnosis of RAD. But probably not. I'm not sure if enough is known about it to know if it would be harmful or helpful, or neither, to a child who didn't have such a diagnosis.

Theraplay: Chapter 5 in this book by Wettig talks about the evaluation of Theraplay. The studies randomised children to either treatment or waiting list controls (which aren't necessarily the best control - partly because just giving children attention rather than no treatment can improve outcomes). A lot of the children in this study had some developmental disability, which is typical of children who also have the kind of behaviour problems Theraplay is often recommended for. 

The chapter says that the children who had therapy improved more than the children who were on the waiting list, though I can't seem to find (perhaps I'm not looking hard enough) any graphs or figures that directly compare these two groups, only graphs showing children's behavioural problems before and after Theraplay. A review I found here says there aren't any other studies showing Theraplay is effective, and makes a good point about its theoretical basis in attachment theory but the fact that it kind of ignores attachment theory in how it is supposed to work.

The RtaF test: I'm not convinced I would.  The Wettig book chapter is rather grandiose in how many different disorders it claims Theraplay can treat or influence, too, which puts me off considerably.

Bruce Perry: I can find a lot of articles by Bruce Perry on the theory behind what happens to children if they are neglected or abused.  Certainly (if you are getting accurate information) it can be helpful to understand what's going on when you have a child that's difficult to parent. He does talk a little about therapy, but doesn't recommend or describe any particular type, saying instead 

the Neurosequential Model of Therapeutics (NMT) allows identification of the key systems and areas in the brain which have been impacted by adverse developmental experiences and helps target the selection and sequence of therapeutic, enrichment, and educational activities.
It's beyond the scope of this post (read: I should be doing something else) to evaluate ALL of his ideas about what affects what when development is disrupted. He does have a tendency to say "brain" when he means "behaviour" or "cognitive development". For example he talks about "
NMT Functional Status and Brain ‘‘Mapping’ [...] An interdisciplinary staffing is typically the method for this functional review. This process helps in the development of a working functional brain map for the individual [see Figure 2, which is a rather odd pyramid showing the names of brain areas shaded in dark or light]. This visual representation gives a quick impression of developmental status in various domains of functioning: A 10-year-old child, for example, may have the speech and language capability of an 8-year-old, the social skills of a 5-year-old, and the self-regulation skills of a 2-year old. 
(In other words, they will do some behavioural and cognitive testing, make assumptions about which brain area is responsible in children, and tell parents they are making a brain map. My quack detectors are twitching. We know very little about how normal brain-behaviour links are mapped,and even less about how they develop in children who have difficulties. Many very clever and famous people have said this, lots of times). He is careful not to recommend any specific types of therapy but he also says:
the sequence in which these are addressed is important. The more the therapeutic process can replicate the normal sequential process of development, the more effective the are (see Perry, 2006). Simply stated, the idea is to start with the lowest (in the brain) undeveloped=abnormally functioning set of problems and move sequentially up the brain as improvements are seen.
Erm... well, I'm a developmental neuropsychologist, and I've never, ever heard of this principle. As he's quoting himself, do you think possibly he might be the only person who thinks this? 

OK, it's possible that he's right, and everyone else is wrong - 64 other articles have cited this article. The fact that I can't find any neuropsychologists who have cited it might tell you something. I also looked up his affiliations and tried to find papers he'd published which had experimental data in them, or anything really that evaluates this method. I didn't have any luck.  

I could be missing something, but most of the articles I can find seem to be theory, and not to have any data. He's listed as head of his own Child Trauma Academy, and as an Adjunct Professor in his alma mater - but at that institution all I found was a simple listing, again with no research papers.

The RtaF test: Go and do a university developmental psychology course, preferably also a university neuropsychology course, if you want to know how the brain develops.  The Open University is very good. Also, if you want to know the state of knowledge (which isn't very much) about how brain and behaviour links develop, especially in atypically developing brains, I'd highly recommend Annette Karmiloff-Smith's articles - this one (pdf) is one of my favourites.  

She talks a lot about how we cannot be sure that, especially if brain development is disrupted, all the same processes are going on that would be happening without disruption (which we know little enough about anyway), or in adult brains (which is what we know most about).  Bruce Perry's theory seems quite wedded to the idea that specific areas of the brain do specific things, we know exactly what they do and therefore we can be sure which areas aren't working properly if certain functions are disrupted, and you can (or indeed must) work on their functions separately - more or less the opposite of what many developmental neuropsychologists would say.

Incidentally, and I'll come back to this if I find more, if you have a child who's suffered trauma, there is an evaluated treatment for this - which is again mentioned by the Allen review article - Trauma-Directed CBT. I can't see either of the centres I'm looking at recommending this or training people on it. I'll keep looking. It's recommended by NICE for children who have PTSD. I've seen very few mentions of children or young people being offered it, or parents looking for it.

So, sensing that my readers' patience might be wearing thin, I'm going to leave my trawl through this branch of therapy for the moment, and hopefully come back to it in the future.

Parents getting control of money? Shock Horror!

The Department for Education recently announced that they will be piloting "personal budgets" for adoptive parents, to fund therapy and services. Sounds fabulous! Why am I sceptical of this idea?

We have no horse in this race (our son was adopted, but not from care) but as someone passionate about evidence-based parenting I am very wary of the wide range of training, therapies, and interventions that are out there for children with difficulties. I knew about this before I became an adoptive parent, through my work with children with disabilities.  And I'm becoming increasingly aware, mainly through social media, of the types of interventions adoptive parents seek and would love to have funded.

The trouble is - and this is the subject of many very long blog posts, at least one of which is pending - we know nothing or next to nothing about the treatments and interventions that work for children who have suffered abuse and neglect.  There is a multiplicity of organisations that talk lovely stuff and promote themselves, and have expensive training days. There are some therapies that purport to work.  Parents find it very difficult to get these therapies funded, currently. But many of the websites and books seem to throw around "brain", "science" and names of brain areas in ways that sound suspiciously like neurobollocks. My preliminary trawl of one or two has yet to come up with a therapy with a good evidence base. I'll keep you posted on that.

In fact, some of the organisations, therapies and trainings that neurobollocks specifically talks about are the very ones that adoptive parents seem to be told about, and that they would like for their children (in the category of home remedies, brain training on handheld computer games comes up a lot for example, and is taken at face value, ditto fish oils for ADHD).

I have tweeted the DfE (twice) to ask whether there will be safeguards to ensure treatments and interventions are evidence-based and vulnerable parents will not be exploited. I'll let you know if I get a response to that too.

Edit: I got a reply!  DfE sent me a web page that has a link to another site that talks about the piloting of personal budgets. I'm not clear if they are already piloting them (it doesn't look like it) but as far as I can see, the budgets are to be used on service provided by local NHS Trusts (for those outside the UK, hospitals or primary care/mental health care) and education authorities OR (and I'm not completely clear on this) partners who are charities working in children's developmental needs or mental health needs.

I asked them if they had any adoption-specific charities to add to this because that would be very interesting - are they adding any and if so, which ones. I wasn't surprised not to get an immediate answer to that as the Twitter monkey typist will be off asking the ringmaster for information.

I am not completely reassured by the use of the budgets only in NHS or education authority circles though. We all know about various neurorubbish like Brain Gym and learning styles that's used in schools, and several of the therapies I'm researching at the moment (see my new post) are provided by NHS mental health services.

Edit 2: I got another reply! "The Government is currently exploring options on how to pilot personal budgets for adoption". So they don't know yet, but they haven't got any providers of dodgy therapies that charge loads on board, just yet. At least there's that.